tag:blogger.com,1999:blog-6031069511870873922024-03-19T16:50:16.005-04:00Meagan Our 5th daughter, Meagan, was diagnosed with severe Congenital Hydrocephalus at our 20 week ultrasound. Her story has propelled our family on a new journey. I hope to keep track of Meagan's story here to help other parents who may face a Hydrocephalus diagnosis for their child, and to celebrate Meagan's life.Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.comBlogger320125tag:blogger.com,1999:blog-603106951187087392.post-11802553235391994472016-10-26T00:18:00.002-04:002016-10-26T09:44:22.790-04:00Which time?<div class="separator" style="clear: both; text-align: center;">
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I was having a conversation with Reilly and realizing this was the week Meagan came home from the NICU, I said "remember when Meagan came home from the hospital?" Reilly's answer was "which time?"</div>
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Blah.. Such a tough answer. But it has been the reality for her and her sisters the last 5+ years. In and out. In and out. Meagan has had so much go on in her short little life. I always have to remember that there are 4 (and now 5!) other little people in our house who are also affected by that. Sometimes it gives me pause. I remember those words clearly from my perinatologist when I refused termination .... "but... you have four other children!"..... I have a small flash of sadness for all my other girls go through.... and then.... I get mad. How dare they question what my kids would be capable of handling.</div>
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How many 11 1/2 year old's have to ask "which" hospital stay I'm speaking of? Probably none in Reilly's class, and in the grand scheme of 11 1/2 year olds, not many at all have to deal with a quarter of the hardship Reilly has seen firsthand. But - my anger then melts in to peace. PEACE!? What's that? With all that goes on? All the uncertainty, stress and worry? Yes, peace. You see, while it really stinks that Reilly (and her other sisters) have to know about hospital stays, and seizures, and delays, and worry...... there is always a positive to that. Because of all the "adult" things they have had to deal with, they also have had to grow up as much more sensitive kids. Much more in tune with the plight of others, the challenges others may face, and actually live out my "rule" of the house to "always be kind." </div>
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So now as I think about my daughter's earlier question of "which time....".....instead of remembering a homecoming from a hospital stay, I think of.....</div>
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....which time Reilly taught Meagan how to hold a pretend microphone and belt her little heart out in song..........</div>
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....which time Kaitlin cradled Meagan's head in her hand, hurting from headache, and read to her to distract her from the pain......</div>
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....which time Meagan had a really tired day and couldn't walk... so Maura scooted with her to "make her feel like she belonged..."</div>
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...which time Kaitlin helped Meagan make a basket at the Native American Museum in DC..</div>
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....which time Reilly stopped her intense practice because her sister asked for a drink...</div>
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and she wanted her to be part of the process....</div>
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....which time Anna shared the Kindle and when Meagan couldn't manage,</div>
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helped her navigate the game.....</div>
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....which time Meagan's favorite song came on, and Maura asked Meagan to</div>
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have their own dance party......</div>
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....which time the girls played pretend doctors, and made</div>
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something typically scary for Meagan, a fun game of pretend....</div>
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....which time Meagan desperately wanted to dress herself....and Reilly</div>
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helped her arms in her shirt saying "great job Meagan, you did it!"</div>
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...which time the girls have given up countless hours with mommy, daddy, friends,</div>
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school events, dance classes, and anything else that brings them joy to</div>
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walk in to a cold hospital just to give their sister the love she shows them everyday.....</div>
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Five years ago this week was the first week Meagan was able to come home, feel our warmth in our house, be around her sisters without beeps and wires and nurses, and just settle in to our daily life as a family. But, it was also the week that my other girls' lives changed forever. Their realm of normal was forever changed to something unique, and something very few other kids their age would truly understand or feel empathy towards. <br />
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Reilly answering "which time" really showed the maturity she has gained in the last 5 years of being Meagan's oldest sister. It has led her and my other girls to ask really tough and thought provoking questions. One they asked the other day was "why does a "good life" always have to be a life that's painted with rainbows and roses?" The answer is, it doesn't. And they know that it's just not the case. <br />
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Ours is a different life than a lot of <i>our</i> friends. Our kids have a different perspective than lots of <i>their</i> friends. But, that's ok. As much as I missed my sweet girls on the countless nights at CHOA, as much as I felt the 'mom guilt' over the many events I had to forego to make sure their sister was safe, as much as the sacrifices we have had to make as a family to just stay above water that other families couldn't possibly comprehend have caused stress or worry..... I would not change one moment. Not one.</div>
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Recently, I have seen Meagan imitating these behaviors - comforting her sister when sick, and now warming up to the idea of being a big sister herself with the birth of Cara. Sometimes, she is a little rough on Cara too, but, that is typical of older siblings right? Nonetheless, no one in our family is "worse off" for her being present. I can tell you one thing for certain - I cannot think of "which time" it would have been easier on us to not have Meagan in our lives. <br />
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I think the biggest lesson Meagan has taught me... is to not doubt the strength of a family. Sure, it's not what I originally pictured ..... but let's be honest.... what ever turns out the way we originally planned? And even if I could go back, I wouldn't change it. <br />
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My girls, albeit 'young,' have the fortitude of 50 adults. They have not only grown as siblings, but more importantly as compassionate human
beings. They understand the concept of being kind to those different
than they are.......they understand that all people have worth and
dignity. They have a very clear vision as to what is right and wrong, and they know how to be independent when mommy or daddy cannot be there in an emergency. This has started to transfer to motivation well beyond everyday life. Reilly conquered a 24 mile, 3 day hike at merely 11 years old. The older 4 girls regularly practice their dancing on their own and keep up a practice chart I could only beg half of my high school students to accomplish. They let things roll of their back better than a seasoned<span style="color: #0000ee;"><span style="color: #0000ee;"> a</span>dult</span>. They wear their emotions on their sleeve to fuel their passions....... they aren't afraid to "feel," and they persevere even in the most difficult of circumstances.</div>
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I don't doubt at times it is difficult to be Meagan's sister. I think Cara will realize this as she grows and starts to recognize some of the struggles of being a special needs sibling. So tonight as I reflect on Reilly's answer of "which time?" when asked about Meagan's homecoming 5 years ago this week....... I think she has a point. Which time? Which time was really the most important that Meagan was home with us?<br />
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Every time. Every time her sweet smile, stubborn attitude, and persistent drive entered these halls was the best time. Every time was a special time. And we will continue to have special times. Every day we have with her sweet soul is a gift - a gift full of continuous lessons my girls will continue to take with them each year they navigate this journey alongside myself and Brian.<br />
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Five years ago our lives changed forever as Meagan finally came through the doors of our home. But five years ago, we didn't realize we were already changed. Because Meagan had already entered the doors of our hearts.....<br />
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Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com2tag:blogger.com,1999:blog-603106951187087392.post-82958685874367351342016-09-29T13:28:00.000-04:002016-09-29T14:28:54.844-04:00The 5 Year LessonIt's hard to believe it has been a whole 5 years since Meagan was born. But, as they say, time flies when you're having fun. <b><i>Fun</i></b>? Probably not the word you would use to describe our last few months, right? We have had some harrowing times recently with Megs and those have not been fun. As a matter of fact, they have been downright scary. However, here we are, safely past her 5th birthday and on to year number 6! And although I wouldn't characterize our last few months as "fun" with all that has happened, I can't think about Meagan without thinking of fun. <br />
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Meagan has come a long way in 5 years. She has started walking this last year, talking more, eating more things, and overall being more curious about life. Those are all big changes, and we are grateful for all of her many positive strides....but I think the biggest lesson we have learned in her 5 years with us is that while Meagan has come a long way, we have come a longer way. As a family, as parents, and as humans. Meagan has taught us how to have fun and how to love. Priceless lessons we would otherwise have never learned.<br />
When we were gifted Meagan as our child, (and yes, she is a gift, as are all our children), there were a lot of questions. There still are, to be honest. As a matter of fact, we probably have more questions now about her future than we did when she was born. As she grows, life gets complicated, and so do her challenges. These last few months have been particularly hard because they were the first few times we literally felt helpless and were very scared she may not come home with us. Our girls, for the first time, felt the fear of their sister not being with them. But those experiences have made us realize how strong we are as a family and how much Meagan means to us as a unit. Because Meagan is fun. And our family wouldn't be fun without her.<br />
In Meagan's 5 short years, she has taught us how to laugh in serious situations. She has taught us how to think freely without reservation. She has taught us how to ask questions, answer without a filter, and say what's on our mind. Meagan has taught us humor, compassion, and friendship. Most of all, Meagan has taught us how to love unconditionally. She has taught us judgement-free, unfiltered, pure unconditional love. Of all Meagan's accomplishments, I think this is the most important. <br />
As a parent we always talk about unconditional love. We love our kids no matter what. Of course we do. But we are also human and we still have tiny stigmas that come along with that. Not Meagan. She is free of those reservations we struggle to ignore. I have seen her hug someone after they were mean to her - she being totally unaware of the "mean" but just sensing the person needed a hug. I have seen her rub her sisters heads when they were sick even though she may be having an off day. I have seen her snuggle her dad when he's tired. I have seen her give kisses to her baby sister when she's crying. Meagan doesn't sit around and analyze whether someone needs love...she just gives it. Without judgement. Without hesitation. Meagan really <i><b>is love, </b></i>to the truest definition.<br />
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We were blessed this year to have many friends be able to attend Meagan's birthday celebration. We probably had close to 100 people at the house throughout the day. The afternoon was filled with laughter, celebration and fun. Meagan was beaming when everyone sang her "Happy Birthday" and loved seeing all her friends. She spent the evening Facetiming with her extended family far away and loved talking to her grandparents and aunts, uncles, and cousins. It was quite a celebration for a 5 year old. But, as we already know, she isn't your typical 5 year old. She is loved by many.<br />
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Life is serious. It is very serious. And, we do have to treat many situations with such gravity as they cross our path. Still fresh in my mind is sitting in the ambulance in Virginia holding Meagan's limp hand as the EMS tried to get her to breathe again....or cradling her on the side of the road covered in vomit as she seized and desperately looking for the ambulance to find us. These are very serious things that we have lived through with Megs. However, even in those desperate times, all I could think about was missing my fun little girl... her smiles, her sweet nature and her love. Even in serious situations, Meagan had helped me to think about the positive. She showed me why we trudge through all the serious - because the fun times are what make it all worth it.<br />
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I am so excited to see what the next 5 years hold for sweet Meagan. Surely there will be more difficulty ahead. But we know that, right? I just hope we can get through it all with as much poise and love as she has helped us manifest up until this point. The world has enough darkness. I'm so thankful that Meagan is here to keep spreading her light. Her beautiful, judgement free light of love.<br />
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Looking back, I now see that it's not Meagan who has come a long way in 5 years...but really the rest of us, who have been lucky enough to encounter Meagan's love if even for a moment. We have so much more to learn from her little soul, and I cannot wait to open my heart to those lessons. I hope you will too.<br />
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<br />Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com6tag:blogger.com,1999:blog-603106951187087392.post-46611335501871631792016-09-11T01:26:00.000-04:002016-09-11T01:30:28.825-04:00It's Complicated....part 2I'm sure if you're like me, whenever something doesn't go as planned you always wonder about the "what ifs".... leaving later than planned, taking a different flight, or having something delay you leaving somewhere that proves to be beneficial. In hindsight, that's exactly what went through my head about what happened on Saturday.<br />
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As I said, there was a delay finalizing Meagan's new rescue medication. I decided to go ahead and get Meagan dressed. I realized it had been several hours and she was still sleeping so getting her dressed would be good prep for going home. Typically even if she's tired or loopy after a hospital event, she realizes regular clothes mean "going home" and will perk up a bit. When I lifted her off her pillow to put her shirt on, she didn't even wake up. Matter of fact, she was really dead weight. I thought she was super tired so I continued to dress her and then packed up a few more things. It was at this point that I noticed her monitors going off every now and then. It was saying she was having momentary apneas (stopping breathing). It caught my attention, but, I have had enough hospital stays with her to know that the monitors are also super sensitive and sometimes they do not always pick up the proper signal or breaths etc. Nonetheless, it was odd she still wasn't waking with more energy, so I went over to see her. Her open defects were huge. Full and hard like she had a fully closed skull. Now my alarms went off - something was not right. She also looked so pale she was almost a greenish color. Luckily, three nurses who have helped us with Meagan since she was 8 weeks old happened to be on that day and right outside our room at the nurses station. Our nurse was wonderful but she had only worked with Meagan that one day. I grabbed our three nurse friends and asked them to look at Meagan. It didn't take more than one peek in the room for them to immediately realize she was not herself. At this point, she was having longer apnea spells and was not breathing in again unless her back was vigorously rubbed. Her heart rate was also dropping to 60 and not recovering well. Her head was still hard - she was under severe pressure. The nurses immediately called the rapid response team who came to assess Meagan. Before I knew it she was being rushed up to the PICU. I had Cara with me still (since she is still nursing, she has just stayed with me if Megs is in hospital).. but siblings cannot stay in the ICU so I had to call Brian to come back and get her to take her home. Luckily one of our close nurse friends was there and instead of making me wait to see Megs, took Cara with her back to first floor to hang out with the nurses and wait for Brian so I could go ahead and get to Meagan.<br />
When I walked in, there were a lot of people in her room of course. Her heart rate was now in the 50's and she was still having frequent apnea and would not rouse. Her head was the same and so neurosurgery was called. The on call came in and assessed the situation. The resident had done a tap of the shunt (where they pull fluid) and it didn't come easily.... there was high suspicion that she would need surgery but the on call insisted on trying to turn down her shunt setting first (faster flow). I agreed because of course if possible, I want to avoid surgery. But in my gut I just knew we were headed there.<br />
After her shunt was turned down, I waited for improvement. Typically with Meagan, you see a severe and rapid reaction. She will immediately show you if it's going to help or not. Sometimes we give 1-2 hours to see how things go, which is fair, and then if things improve, we move on. If they don't, she goes to the OR. This time, we waited. And waited. And waited. 1, 2, 3, and 4 hours passed. Meagan was still having apnea and bradycardia...and then she started to writhe in her bed. She wouldn't take a breath unless I or a nurse vigorously rubbed her back, legs, and torso to jostle her in to breathing. She would roll and get puffy cheeks - I knew that meant she was going to vomit. Pressure puke, as we so "professionally" call it. And sure enough within mintues, she did. Everywhere.<br />
By this time, Brian had made it back to the hospital thanks to a friend staying with the kids at home. Meagan continued to projectile vomit, this time it was a TON. The nurses rushed in and were wonderful to clean her up. They even wiped her down with pre-surgical wipes because it was obvious to them she would need to go to the OR. They also continued to monitor her vitals which were now deteriorating again. Her heart rate was between 48 and 55.... she was continuing to have apnea, and now she was vomiting. Her head? Still hard as a rock. I was getting very concerned and finally asked the nurse to please call the on call NSG (neurosurgeon) again. Word came back that he was in surgery with another case. The hours Meagan had sat in her condition started to wear on me - I felt he did not realize how bad she had been all evening....because if he did, I don't see how anyone with surgical knowledge or a heart could leave this child in this condition for hours on end. In all my years with her, in all my hospital stays and surgery needs, I had never seen her this badly ... I had never seen her in such a state with no relief to need the OR. It sounds strange, right? Praying for someone you are frustrated with to take your daughter to surgery.. let alone brain surgery. But she needed it badly. I knew it and it really needed to happen soon. <br />
Finally, the on call came down to look at Meagan... still the same but deteriorating and still vomiting. She had so much pain - she was moaning and writhing in her bed still as if she was trying to get away from something or the pain and would press her head against the side of her bed. He agreed she needed to go to surgery...FINALLY. Meagan was prepped for surgery and taken to the OR. 1am. It was about darn time. Brian and I walked with the PICU nurses as they rushed her in, we signed the papers, and off she went. Then, we waited.<br />
A few hours later, the on call walked in to our room. He explained that her top valve, the high pressure valve, had a rip in it and was not working correctly. He told us he replaced the top valve and that hopefully she would start to feel better. Shortly after, the OR nurses brought Meagan back to the room. She was rough, but, stable. Once all the vitals and checks and notes were finished, I crawled in to bed with her and snuggled. Her hair was matted with three sets of incisions and staples and gooey medicine, her body was weak from the anesthesia and her coloring was faded....but she was there. She had come back to fight another day and I just hugged her and thanked God for my sweet baby girl.<br />
The next day we already saw improvements. Meagan's vitals were stable (for the most part), she was starting to talk again and her coloring was coming back. We decided it was safe enough to move her down to the neuro floor that afternoon. Her heart rate continued to dip a little lower than desired....but if my body had been under the pressure she had endured those 10 hours, I would be the same way. They decided to watch her overnight and if all was ok, she could be discharged the next day. I was glad because that meant 1. We would feel a lot safer taking her home...and 2. Dr. R would be back the next day so I could discuss with him the events of the weekend and concerns I had going forward.<br />
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Tuesday morning, Meagan didn't really want to get up. I knew she was tired, but I wanted to be sure she was ok to go home. I tried to wake her up, her favorite nurses came to visit and I tried to bribe her with going to the hospital store. All she would say is "I want to sleep." I finally decided I needed to make her get in the wheelchair and go walk around for a little bit. While the nurse was seeking out a wheelchair, Dr. R and Blaire came by. We chatted about what had happened and I got to speak bluntly about my concerns and how things had been handled the previous day - I will leave all of the details between Dr. R and me, as it should be. But know a serious conversation was had - and I think, or at least hope, we came to a mutual agreement and understanding on Meagan and the "status quo" when it comes to her treatment, especially regarding the hours she sat under pressure. We were able to share perspectives, and I pray that eyes were opened a bit more to what we as the actual parents go through and have to endure .......and why it is SO imperative for our medical team to trust our instincts when it comes to these amazing kiddos. No one knows Meagan better than I do. And when something is wrong, that trust has to be between the surgical staff and me there so I can get her the help she needs efficiently and quickly. We will return in a few weeks to get Meagan's staples out, so I will ask any more unresolved questions at that point.<br />
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This past Thursday, I was driving the girls to dance class - instead of our usual back and forth about school, or talking about something irrelevant, or singing loudly to music on the radio, there was an eerie hesitance in my car. The girls were randomly mentioning what they remembered from the week before. As I drove by the highway connector, I saw the very spot I was with Meagan laying on the ground vomiting and seizing while we desperately waited for an ambulance that never came. I saw the exits pass and remembered how each mile seemed to crawl by when I was driving. Then I happened to look in my rear view mirror. Meagan was smiling and laughing at something silly Maura was doing. She was singing along to the songs on the radio, and she was beaming. She had once again, defied a precarious situation, and come out strong and ready to take on life again.<br />
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Meagan's latest episodes seem to have a 4 week pattern... I'm hoping with this valve fix, that we have solved the stress on her body which seemed to precede or trigger these events. I will definitely be holding my breath until the end of September passes with no major events. Of course, even if it does, I don't think we will all ever be the same. These last few episodes Meagan has had greatly impacted our family and our security in her stability. We always promised Megs happiness, love, and life experiences. We will continue to do our best to ensure our promises stay fulfilled. But even if the next four weeks pass and we avoid another catastrophic event, I don't think I will ever be the same. The best I can say to that is....... it's complicated.<br />
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We love you Meagan and are thank God everyday that He pulled you through these last few months. We cannot wait to celebrate your big milestone of turning FIVE in the next few weeks!<br />
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<br />Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com4tag:blogger.com,1999:blog-603106951187087392.post-85184536806838328112016-09-06T14:31:00.004-04:002016-09-06T14:31:59.553-04:00It's Complicated ... part 1Ever since Meagan's "big event" in Virginia, she has been doing quite well. She started back to school with her sisters, loves playing with her friends and loves riding her bus. Once the 4 week mark passed from her Virginia epileptic event, I breathed a sigh of relief. Perhaps that was a one time occurrence and we were back to her "normal." <br />
Thursday afternoon, the girls decided to go to the dance studio early to practice and do homework before class. Reilly had a flight to catch so we decided to head down early to not get caught in all the traffic heading south. We arrived at the studio and as we were getting out of the car, Meagan looked a little off to me. Sometimes if she wakes up, or is looking around after a long car ride, she will be a little "foggy" and then once she's acclimated, be just fine. Unfortunately, that didn't happen. <br />
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I noticed her defect (open area of her skull where it is easy to see increases in intracranial pressure) was huge. And very hard. It was so odd because in the days before, her defect was completely sunken in - to the point I even received notes from school about it. The teachers were concerned how sunken it was. To see it now bulging with fluid I was concerned something wasn't working correctly. Here we were, repeating the up and down I had been seeing all summer. It was reminiscent of when she only had one shunt valve and it never worked correctly. I wondered if her top valve wasn't working properly.<br />
I sat Meagan up in the middle seat to watch her. Within moments she projectile vomited everywhere. Head still hard as a rock. Pressure. She looked completely glassy eyed and immediately went limp in my arms. She continued this cycle of vomiting and being lethargic and I knew she had to go in right away. I called the dance teacher, a few friends and Brian (who works close to the studio thankfully) and arranged for the older girls to stay there at the studio with Brian while I started on my way to Children's.<br />
Meagan was still completely lethargic. I know we hear that term all the time ...."my child had a cold and was lethargic all afternoon.." but we also misuse it all the time. Think overcooked spaghetti noodle - that's how Meagan's entire body was. It was difficult to get her strapped in her carseat because of her lethargy but I was able to finally get it done. I pulled out of the studio and hit the road to Children's. We weren't that far thankfully but it was the afternoon so I was wary of traffic.<br />
About halfway down the road, I noticed Meagan's color looking very bad in my mirror. I glanced a few more times and then noticed that her right arm, eyes and mouth were seizing.The time was 4:30. I pulled over on the highway to administer her Diastat (rescue medication). She vomited again so I knew I had to call an ambulance or she would start choking when I had to drive. As I told the operator our location and gave her my number for GPS routing, I pulled Meagan out of her carseat and gave her the Diastat. Nothing happened. As in, Meagan kept seizing, kept turning grey, and kept vomiting. Things just got exponentially worse. I looked at the clock and it had been a good 8 minutes... I asked the operator where the ambulance was and she assured me they would be there soon. She said she also had called Fire EMS so between the two of them help should be there shortly. 10 minutes. 14 minutes. Nothing.<br />
Finally at 15 minutes, I started to hear sirens. The operator asked if EMS was there yet - I told her I could hear the sirens and then upon looking, saw they were on the wrong side of the highway. We were right near an exit so they pulled off and she said they should be coming back around soon. 18 minutes. 19 minutes. 20 minutes. Nothing. Meagan was getting much worse. Her convulsions had now gone in to both arms, both legs, her head, mouth, eyes, face. She still vomited but only mucous every so many seconds. She was not responsive to me. I had to go. I told the operator please tell police to not pull me over but I have to take my daughter in. Not to mention cars were flying past at high speeds and Cara was in her carseat inside. For her safety and especially Meagan's, I could not afford to wait any longer.<br />
I put Meagan back in her carseat - which was even more difficult because now I not only had a limp child, but one actively seizing. I managed to get her straps clicked in. They kept slipping out of my fingers because everything was covered in vomit, but we got it done. I jumped in the front seat of the car and took off. There was traffic so I just kept praying that it kept moving. Finally when my GPS said "one mile," I felt a little bit more relieved. It was the longest mile of my life. I couldn't see Meagan in her seat because except where she was strapped in, she was completely limp. Every now and then when I had a chance I would take my foot off the gas pedal, push up off my floor and stretch my head to glance at her face. I would see her eyes twitching and her head and mouth convulsing. This is the only time I have been thankful for her seizures because I knew she was still alive if I saw that happening.<br />
I turned in to the emergency driveway. I looked back and Meagan's lips were blue. There were two other cars in front of us when the first in line simply stopped. The car in front of me and myself slammed on our brakes wondering what was going on. The first car put on his reverse lights. Uh, no. He rolled down his window explaining he meant to go in to the main parking garage so could we all back up for him to move. I'm typically extremely polite, except when it comes to the safety of my kids being jeopardized. I rolled down my window and yelled "my daughter is not breathing - MOVE!" I may have had a few other words in that sentence..... He finally started moving his car again and I raced up the ramp to the ER doors. I got out, grabbed Cara, grabbed Meagan and walked in the doors. As soon as the ER nurse saw us, she came and grabbed Meagan and she went straight back to a trauma room. They laid her on the table and her breaths were very far apart and extremely shallow. Once they got her situated, you could see her little tummy take in one more breath, and then completely relax and stop.<br />
Immediately the room was swarmed with people - the ER trauma doc, several nurses, respiratory team..etc. They worked on Meagan for several minutes to stabilize her condition. Her body just was not cooperating with the breaths and her blood gases came back with her CO2 through the roof. They wanted to intubate her again, but, the ER trauma doc happened to be one we had worked with before. He said since they had the staff available, he wanted to give Meagan a chance to breathe on her own so they kept respiratory and a nurse breathing for Meagan, while the others administered rescue medications to stop the seizing. After 3 rescue medication doses, Meagan's seizure finally calmed. It had been 1 hour and 17 minutes.<br />
Once she was stable, they got a quick CT scan and then we stayed in trauma. The respiratory team kept breathing for Meagan while we gave her body time to come out of the event. A few hours later she finally started to attempt shallow breaths when respiratory would stop. This was a hopeful sign so they kept doing what they were doing until we got to a point where Meagan's body picked back up and started breathing again on its own. At this point it was about 9pm at night. As things continued to calm, the team was comfortable moving us from the trauma room to an ER holding room while we waited for admission.<br />
Meagan was admitted, taken to neuro floor and we settled in for the night. Neurosurgery and Neurology consulted on theories and what to do. It was decided the next day that although she had improved, we would hang out that day to watch her and then do an MRI the following morning. It had been a few years, and because of the large shift in her status quo, Dr. R and I agreed it was a perfectly logical non-invasive next step before they let me go home with no answers. That way we would have a new baseline and go from there on what was best for Meagan. <br />
Saturday they got her in fairly early. She went in and out of her MRI without a hitch. We were told there was nothing pressing and we would go over the results in detail with Dr. R later that week. We were going to be discharged! I was more comfortable with that knowing the MRI didn't show anything emergent and Meagan had been back to herself, drank a bottle, and was watching cartoons. I started packing things up and all we were waiting on was the prescription for Meagan's new rescue med (since Diastat had not worked the last two times) to come through. Meagan had drifted off to sleep and then I found out there was a little delay finalizing the new medication plans because they had to find a pharmacy that would distribute it to us. I also needed a nurse to come teach me how to use the new med so the floor could sign off on it. That delay would prove a Godsend......Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com2tag:blogger.com,1999:blog-603106951187087392.post-10116428551088351272016-06-11T21:25:00.000-04:002016-06-11T21:25:00.983-04:00Dear Dr. K<div style="text-align: center;">
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Dear Dr. K,<br />
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Bear with me - it's been five years coming for me to write this letter. Do you know how long that is? It's about 1, 826 days. To be honest, you probably don't even remember me, or remember me well. I know I'm not any more "special" than any other patients you see. Day in and day out, you see high risk patients....mothers with problems, babies with problems, and for that in particular, I do feel for you. The job must be demanding and stressful and tough. I can even see why you might desensitize yourself to situations such as Meagan's and how that may help you cope with the news you have to give to families day in and day out. But just because I can sympathize, or understand, or try to treat you with respect doesn't mean I agree with you or what happened in our first meeting 5 years ago.<br />
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Five years ago, I blissfully went in to my 19 week ultrasound to check anatomy on our 5th daughter. As the scan concluded, and I saw the large black space where typically I had seen the brain of our other children, and although I was blissful, I was not blissfully unaware. I knew something was wrong....very wrong....and off I went from my appointment with a pink piece of paper labeled "hydrocephalus" to come and see you for further testing.<br />
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After our initial scan, you confirmed that yes, indeed, our daughter did in fact have a severe case of hydrocephalus. You told us that her brain (what was left of it) was under severe pressure. You said that she probably would not have a good outcome and that if her hydro was caused genetically, she wouldn't even make it to birth. What you did not know is that I had already googled, searched, and read all I could about hydrocephalus and while a lot of it was scary, it didn't change the fact that she was still my daughter and I loved her.<br />
When you talked with us about the outcomes for Meagan, you listed all the things she would not be able to do. You told us she would not walk, talk, smile, coo, move, or do many other things we would expect from our sweet girl. What you did not know is that it didn't change the fact that she was my daughter and I loved her.<br />
When you suggested we terminate (ie: end her life) due to these circumstances, you told us if we needed time to think (since we were up against the deadline to terminate in our state), we could even go to other states that had later term abortions. You told us that it would be hard on us, our normal routines and our finances. You told us that our older four children would suffer to have a sister with such needs. What you did not know is that it didn't change the fact she was our daughter and I loved her.<br />
When we fought with you over every scan, refusing the amniocentesis, telling us proper measurements of remaining brain tissue, and ultimately signing us off to have my own OB deliver her, you always made sure to tell us the negative. The can'ts. The won'ts. And when we wouldn't listen to you, you sent us to your "genetic counselor"....who was only full of more can'ts, won'ts and nevers. She again asked us what we would do with a child "like Meagan" impacting her four older sisters lives. What you didn't know is that none of that changed the fact that Meagan was our daughter and I loved her.<br />
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Well, here we are. Five years later, and I would like to tell you about Meagan. First, I will take your approach - clinical and labels. Yes, she does have her hardships. She has had 15 brain surgeries. She has epilepsy. She has feeding difficulties and GI troubles. She has gross motor delays and fine motor delays and cognitive delays. She has growth problems. She gets hit harder by illness than her sisters. She is, well, in a term you will probably understand, 'different.' <br />
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Now let me really tell you about what she is like - meaning her soul, her personality, her being. Meagan is a complete joy. Everyone that meets her smiles, laughs, or takes away a sense of love and compassion. Meagan moves. She kicked her legs and moved her arms for over four years and then this last Christmas, she just started walking. Granted, she walks a bit like someone who has had a few too many - but we don't care. She also does use a walker and a wheelchair - but again, we don't care. That's just Megs. Meagan laughs. She is funny and has a sense of humor to rival the most famous comedians. Meagan loves. She loves her sisters, her family and her dog. She loves her teachers and even those she doesn't know well. She will hug a complete stranger and ask anyone in passing "whats your name?" Meagan eats. For the last 3 years Meagan was 99% tube fed through her feeding tube - but that's still eating! Recently, her oral eating has suddenly taken off and so now she eats two ways. I bet you can't do that. She can. Meagan plays. She plays with her sisters, plays with her friends, and plays on her own. She really enjoys Peppa Pig and Sophia the First and Frozen. Meagan sings. She can sing any song on the radio she hears, even if only once. She sings to her baby sister. She sings to me. She sings to anyone who will listen as I push her through the grocery store. Meagan has an amazing memory. Short term, notsomuch. But long term - wow...don't say anything around her you don't want coming back to bite you! We always joke with her future teachers that they will have to give her tests 4-5 months after she learns something so she can recall the information. It's ok - you can laugh. We have a lot of laughter around here - it's important.<br />
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I could go on, but, I think you get my point - you see, you were wrong. Amazing, I know....but it seems you don't know it all. I couldn't even tell you what my typical kids would do or not do when they were born so I was a little worried you seemed so sure - to embody some superpower that no other human I know has - the power to tell the future. But luckily, I have come to know that no - you are just a regular person like the rest of us, and just as bad at predicting the future as anyone else.<br />
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Now for the blunt part - and I want you to read this very carefully because this is the most important paragraph I am going to write to you. <i>This is the most important thing I have been waiting to say to you, and will ever say to you regarding Meagan. Even if Meagan did<b> NONE</b> of those things I listed above - you would still be wrong. Because you see, my children aren't my children because of things they can do - <b>they are simply my children because they are</b>. Notice the reason there at the end of that sentence? Right - there is NO reason or qualifier or checklist that makes my children mine....other than they just <b>are</b>. Even if Meagan never did ANYTHING, even if God forbid something happened where she lost some of her progressions or development...... I would still love her, I would still be proud of her, and I would still be incredibly grateful, joyful and thankful that she was mine.</i> Because you see, what you don't know is that <i><b>none of that</b></i> changes the fact that she is our daughter and we love her. From the moment she was conceived, she was ours.......<u>and she was a beautiful soul. </u><br />
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I truly hope this letter finds you well. I wish you long years of happiness and health and joy. But please don't look for all of that in the wrong places. Sometimes the greatest gifts we have in life come from the greatest challenges. It's ok to outline the challenges - I get it. Liability. Scared parents. Your job on the line. And little interaction with the special needs community outside of your ultrasound machine. But try to not forget you are actually that baby's doctor.... and your job is first to "do no harm." Help parents to understand the problem - <i>all</i> outcomes across the spectrum. Direct them to support groups, medical doctors who can further explain the condition, and help them to reach out to other parents who have children with the same situation so they can find strength. Encourage them to come back to you and visit so you can see how amazing their child is - and so you can also stay balanced and truly see these children for who they are - beautiful souls with value - not a diagnosis out of a medical text book you haven't looked at in years. Remember, even our children born "perfectly typical" can quickly change in the blink of an eye. (Speaking of typical, our older four daughters are doing just fine. They have a level of compassion and love you would rarely find in children of their ages. And two of them want to go in to medicine because of Meagan. We even added to our family and gave Meagan a baby sister who will grow with an equal amount of compassion and love... I call that a win win!) <br />
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One day, we do want to bring Meagan back to see you. We want you to see her sweet hazel eyes, her rosy cheeks, her teeny tiny little legs, her pretty brown hair, and her contagious smile and sense of humor that will be sure to brighten your day. I hope that then, you will finally know and feel what we have always known - she is not a label or a list of can'ts.....but a little spitfire...a small piece of heaven God allowed us to have here on earth for however long that is.... she is just our daughter - and we love her. Unconditionally. Forever.<br />
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God bless,<br />
Molly and family<br />
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<br />Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com7tag:blogger.com,1999:blog-603106951187087392.post-30526547278443943952016-05-20T12:51:00.002-04:002016-05-20T12:55:00.194-04:00Problem Solved Before I get into details, I want to say that this blog post is being written from my <i><b>living room</b></i> - yep, my nice comfy home sweet home living room (yay!). We got home late last night and frankly, we all passed out before I could update anything so here we go.<br />
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Meagan's new blood work yesterday morning was ok...but not 'great.' Her white counts and CRP fell again (which is good), but not by as much as Dr. Shore (infectious disease) would have liked. In addition, her sed rate (another inflammation marker) jumped by 20 points. Dr. Shore was glad things were creeping down, but with the other number jumping up, and Meagan STILL holding fever, he was not comfortable discharging her without more aggressive treatment plan. A big goal is to not go back to the hospital.... as much as we love our specialists and nurses, we don't want to be there to see them . (They know exactly what I mean when I say this), so when Dr. Shore explained his plan I was completely on board. We did not want to rebound at home and return with another infection or worse. <br />
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Dr. Shore ordered IV steroids that Meagan would get through the day, and then he ordered a completely different antibiotic. He said hitting her hard with the Vanc was protocol - you don't wait around to see if a brain patient's brain is infected - you treat it. But he said now that her CSF was clear for the 72 hours, his discovery of what was going on, and with her inflammation numbers and fever, he wanted to add a more targeted antibiotic in addition to the steroid. He said typically if he hits it with this combination, especially at this point in the game, he sees fairly quick results or reactions from the body. Dr. Shore said he would recheck her in the evening, and if his suspicions were correct and she did respond quickly, we were on a promising path and he would talk going home to continue recovery.<br />
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Cara was over it too...and ready to get home!</div>
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The IV meds were started and so we waited. The steroid of course made her crazy. It was good to see energy, but, it was "false" energy. She was a handful to watch on the steroids because of course she felt she could do things that she could not - she was just completely restless. I held her a bit in my lap to try and contain it all, and then at one point she looked at me and said "put me in my bed." So I did, and she fell right asleep.<br />
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Cara helping Megs through her meds...her IV was so sore.</div>
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As the day went on, she rested and her fever started to come down. By early afternoon we were finally at 100. It was a great sign. After her last dose of antibiotic, she asked to sit in the "blue chair." The blue chair is the chair that is in every room - Meagan knows this chair because typically, as she starts to feel better during stays, it's her next step to going home - to sit in the "blue chair." Naturally, I agreed and put her in the blue chair. She just chilled. She looked outside and was talking about the clouds and trees she saw. It was nice to see her just be relaxed and enjoy all the activity going on outside her window.<br />
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Meanwhile, in the midst of all this, Dr. Reisner and Blaire came by to check on Megs. She was due to have her stitches out anyway the previous day from her surgery, so they decided to just do it then. One problem was that Meagan had major 'hospital head,' as we call it. The whole back of her hair was literally a huge knotted ball. Blaire asked us to wash it and try to comb it out so they could get to her stitches and then they would return to remove them. When I looked at the back of Meagan's head, I knew no amount of conditioner was going to help it. I asked the nurse to discreetly give me a pair of scissors because that was the only way we were reaching the stitches. We bathed Meagan in her bed, and I put a ton of conditioner on her hair. I then cut through the middle of the knot and started to comb. I took each half of the knot, slowly worked the tangles out, and finally we had clean combed hair and an easy path to her stitches. Blaire returned with Dr. Reisner later that day and removed the stitches. Dr. Reisner also told me he had consulted with Dr. Shore and agreed with his conclusions and plan, so that made me feel better as well. We said our goodbyes and I told them hopefully we don't see them for a year....and of course we sent Dr. Reisner off with a Hershey bar. Can't break tradition. (If you are unfamiliar with why Hershey bars are a "thing" between us, read <a href="http://pricelesslittlepearl.blogspot.com/2013/10/what-difference.html?m=1">HERE</a>).<br />
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Later that afternoon, Dr. Shore came back to check on us and Meagan was smiling. Although still very pale, she wasn't as "grey" as she had been, and he felt a lot more comfortable about our plan to go home. He said he couldn't let her go without a heavy course of steroids and antibiotics to continue at home, and of course we were ok with that. He also said that in Meagan's case, she harbored so much bacteria there that once she is all better, we need to consult with ENT and schedule to have Meagan's tonsils removed. Dr. Shore said that there was no way to know for sure, but between the intubation for the surgery irritating her throat, and it being a perfect opportunity for germs to enter, she had a lot going on that all came together perfectly to create this whole mess this week. I thanked him for all his help and excellent investigative work. I told him I liked that he was a problem solver. He acknowledged that without his consult from Dr. Reisner, we could have been there for weeks more and still been searching for the cause. Without the correct course of steroids and targeted medicines, it would have been a circus and probably a lot longer hospital stay....not to mention, a much sicker Meagan. He gave me his information so we have access to him for future consults if Meagan is ever down again and it's not the shunt - especially if it happens out of town. I was very thankful to have that - another phone number for peace of mind and another amazing specialist on Meagan's team.<br />
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Once we got home, Meagan was beyond excited to see her sisters and Bentley. She did try to walk a little but it was virtually impossible. She couldn't hold herself up at all and fell hard. She wanted so badly to be with her sisters though, so for the rest of the time she was awake, she scooted around the floor. She's also a problem solver. I like that. The meds - I don't like them too much. :) Of course I like they are making her better. But Meagan on steroids is no fun. She is hyper beyond belief one second, and in complete tears the next. She is emotional and laughing and crying and nutty. It's funny and tiring and annoying all in the same moment. I just keep telling myself it's helping her - and maybe she's helping prepare me for a houseful of 6 teenage daughters. Ha.<br />
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Sometimes problems with Meagan are clear cut. And often times they are not. If you have followed the blog from her birth or before, you know that many times we have had to go with the 'non answer' answer. So any time we actually get a firm answer on things, it is a breath of fresh air. Even Meagan's nurses rejoiced when Dr. Shore got to the root of the problem. They have been there through it all and have seen all too often Meagan and her doctors struggle with answers when things don't make sense. <br />
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We see Dr. Shore again next week and then will move on to ENT to schedule her surgery. It stinks she needs another surgery, but comparatively, this one should be pretty "easy." And it helps solve another problem that could really affect Meagan negatively down the road if we don't do it. So we are happy for preventative care as well - problems solved before they start are always ok by us!<br />
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Thanks to everyone for all the thoughts, prayers, meals, help, and kind words. Weeks like this can be very hard on the family, namely the other girls, and every little token of kindness was felt and appreciated.<br />
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Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com4tag:blogger.com,1999:blog-603106951187087392.post-70804255159026822172016-05-19T00:56:00.003-04:002016-05-19T00:56:31.397-04:00To The Moon And BackMeagan had a fairly uneventful night last night. She crashed fairly early and slept well. Her fever still hovered in the 103 range and she was still very tired. Around 4am she woke up, and was just "up." I think she had fallen asleep so early she just couldn't go back anymore with waking up so early. I snuggled her for a bit and then labs came to draw blood. The results came back promising - Meagan's CRP had fallen again - her white count had gone up a little, but with the falling CRP Dr. R was happy we could be headed in the right direction. <br />
Still, the fevers were puzzling so far into the process and both of us were worried we were missing something. Dr. R decided to call in a colleague - an Infectious Disease doctor - to look Meagan over and make sure nothing else had manifested. <br />
The ID doctor was very nice - he talked with me about Meagan's history, the reasons she had been admitted this time, and what we had done so far. He had a suspicion and asked if I could help him hold Meagan so he could get a good look. She wasn't happy about it, but I knew it was for a good reason. Upon his exam he found that way deep down, Meagan was harboring puss in her throat and that the insides looked pretty horrible. It was crazy because on Sunday, her throat was completely clear - but these things can be brewing and that's probably what was happening in her case. He said that the infected throat could easily give Meagan the fevers and lethargy she had been experiencing - not to mention a few days before we came to the hospital she had lost her voice. He also said her loss of appetite and fluctuating white counts make sense as her body tries to fight off the germs. <br />
Meagan also had been holding the back of her neck more frequently as if it's bothering her - this is the one symptom I'm unsure of - sure, it could have had to do with her throat and referred pain, but after reviewing some of Meagan's latest scans it could also have to do with her Chiari Malformation, especially considering her balance lately and not wanting to sit up as much. Laying down for her is more comfortable and that's typically a red flag with Megs. We will see with time - if the behavior stops, then we know it was acute. If it doesn't, then we will have lots more questions for Dr. R about what this means for Meagan since she would be showing symptoms again. But for now, we are focused on getting her better from this illness before looking in to what may be lurking again in her brain.<br />
Overall Meagan also had a much better day. The positives were she was talking, and interacting again with people. Child Life brought her something to color and we helped her color a page or two. She had a few of her teachers stop in to wish her well and bring her some love, and her favorite nurse was here again and able to bring some smiles out of Megs. Probably one of the funniest things ever was when Nurse P was asking Meagan how she had been.. She asked Meagan about walking and her sisters and Bentley and said she looked like she had a very busy and fun year. Nurse P then asked "soooo, what have you been up to?" Meagan thought for a moment and then said "well my cat is in heaven." Ha. Really? After a whole year and a half that is the one thing she chose to tell Nurse P. It gave us all a good laugh and a good hunch that hopefully our Megs was waking up on the inside and starting to win the fight.<br />
As afternoon rolled around, Dr. R rounded again and we talked with the ID doctor. The ID doctor was not comfortable letting Meagan go home today because she was still harboring high fever, and her labs while promising, hadn't exactly fallen as we had hoped. Knowing about her infected throat, he also was wary of sending her home with fever in case an abscess was forming - something that if it happened, would bring us right back to CHOA in another serious situation. So as a team, we decided to wait out her fevers tonight. We agreed to continue to monitor her and do another round of labs in the morning. If her blood counts were much much lower and her fevers subsided, we would assume we got it all with her four days of rotating medications and feel good talking about going home. If her new labs are not lower, or her fevers persisted, then he said he would want to try to give her a boost with a targeted steroid to help her body finish off the infected throat. At a very last resort, he said he could do a focused CT scan of Meagan's neck to for sure rule out any abscess, however, since she has already had countless CT's and x-rays, and since we haven't seen her new blood counts yet, the scan probably will not happen. <br />
As the evening went on, Meagan became very tired again. I would be too with such a long week of fever and pain. She went back to sleep fairly well tonight - She was still uncomfortable but sleeping. I got Cara ready for bed and cleaned up our room a little bit. Then I went to say goodnight to Meagan - before I even touched her I could see her hair was sweaty. Could this possibly be the start of her fever breaking? I sure do hope so. But I won't *really* say it out loud just in case....<br />
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I was really starting to worry about Meagan this week. She just didn't look right and we didn't have *the* answer .... she looked grey and pale and wouldn't stir for so long. I'm so glad that today we have seen her personality start to come through and hopefully we can get some color back in her tomorrow. We should have labs drawn fairly early so we are hoping for a much more drastic drop in numbers to reassure us that we did in fact get everything and no bugs are lingering in her system. As for the remainder of the throat, that will heal over time and hopefully she got enough antibiotics in her system to cover her fully and ward off any lingering infection.<br />
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Weeks like this can get very crazy for our household - we have school, dance, work, everyday chores, financial obligations, Bentley, and the list goes on. It gets a little tough to "divde and conquer" with Brian to make sure all our bases are covered, but we just do. I haven't seen my girls since Sunday morning (barring a quick visit to Reilly for her school awards on Monday morning), I haven't been home to keep Bentley in his routine, and I haven't been home to have down time with Brian and discuss our days, plans, and thoughts. Knowing all this, however - the time away, the expense, the hospital annoyances, the pain Meagan and all of us endure - would never change my choice to do it all over again. When you say you love someone to the moon and back, you mean it - and that means that sometimes you have to feel like you actually travel to the moon and back to show that love. This is just one of those journeys and right now I feel like maybe we are almost on the home stretch from it all...this time.. Laying here with Meagan I am happy and peaceful. It isn't a chore - it's a gift. And I will cherish that gift to the moon and back.....and back again....and back again.....and......<br />
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Love you Meggy and we are hoping for some awesome numbers in the morning. <3<br />
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<br />Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com3tag:blogger.com,1999:blog-603106951187087392.post-74936425333497075142016-05-17T09:54:00.001-04:002016-05-17T09:54:20.701-04:00NumbersMeagan slept last night for a few good stretches. She got a pre-op wipe down (just in case), and another dose of her heavy antibiotic. Unfortunately, her IV also went bad - it never looked great from the ER anyway to be honest so I wasn't surprised. Luckily, one of our favorite people to redo IV's was here. Ms. C, as we will call her, was excellent as usual, and got another IV in Meagan's hand with minimal fuss and pain. She was able to take the old one out and let her arm rest. We saw glimpses of Meagan's stubborn self when she was getting her new IV - telling Ms. C she needed to put a band aid on it, she was getting a 'boo boo,' and then finally telling her and our nurse that they could go home. Oy. Needless to say, despite her being bossy, all of us were happy to hear it because that is more like the Meagan we know - so I thank them for taking Meagan's "insults" with grace and indulging in some humor about the whole thing. Any glimpse of Meagan's personality is a good thing!<br />
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So first for the good news - her CSF cultures are still negative, and we are past the 24 hour mark. Now I don't want to jinx anything by saying this, but, I would honestly be shocked if we saw any bacterial growth at this point. Yes it can happen up to 48 and even 72 hours, but, I feel pretty comfortable saying that her CSF, thankfully, is not what is holding the bacteria. That would have meant removing her entire shunt, waiting for infection to clear, and redoing the shunt. So, I am VERY happy her CSF is still showing no growth. The other good news is that although she's unhappy at times or has, um, 'attitude' (the nicest way to write it), we are happy to see that. She has been really lethargic since Saturday, so to see that is a good thing. She will stay awake for a little bit and watch Disney Junior, or will talk to me for a few seconds..etc. She is still feverish and still wants to sleep a lot, but these awake times are a good thing. AND the last good thing today - we got a smile out of Meagan. It wasn't any grand effort - her nurse simply walked in and Meagan smiled. We love love love her nurse today - well, we love a lot of nurses on first floor - but Nurse P was with us through almost all of Meagan's very difficult lengthy stays 2 and 3 years ago, so to see her walk in made Meagan smile. I love that Meagan reacted this way - with everything going on, it's nice to see she actually has joy at who is coming to care for her.<br />
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Now for the "eh" news - I won't say bad because I do believe with Meagan's personality improvements we have to be moving in the right direction. But, it's still "eh" mostly because of the unknown. So if there is no bacteria in her CSF, the logical question is...where is it? Well the most honest answer is - who knows. What we do know is that her white blood count and CRP were very high, she keeps rebounding with a high fever, and she's still (more than normal) sleepy/weak. So there is obviously infection happening somewhere - as I said previously they have been hitting her hard with two antibiotics that really should cover us with any infectious situation. <br />
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So the plan from here is - continue to watch Meagan's CSF (to ensure no new bacterial growth), look at Meagan's blood cultures as well (to also make sure no bacterial growth), and if those stay clean, hopefully her blood work from today shows her white counts and crp levels have dropped. Although not an exact "you have *this* type of infection" answer, what that will tell us is that the meds ARE working and we keep on keeping on until she's back to baseline and infections are gone. <br />
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That's basically where we are now. Dr. R and Blaire said they could get Infectious Disease involved, but, until we see her numbers there is no point because it will just make it a lot more difficult (and probably painful) for Meagan.... so as long as her numbers come back trending the right way, we can chill with neurosurgery and keep killing off whatever is bugging our girl.<br />
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It's all about the numbers today! So let's hope we see them going the direction we want! We will keep everyone posted of course and hopefully have some of those answers for you tomorrow. Thanks again for all the prayers and well wishes!<br />
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Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com5tag:blogger.com,1999:blog-603106951187087392.post-17942536366186907462016-05-16T01:56:00.001-04:002016-05-16T02:00:21.074-04:00The Perfect StormSince Meagan's surgery 11 days ago, she has been doing well. She was back to her normal "go get em" self, and even gave herself a black eye trying to walk around her second day home. She went back to school last week (which she loves) and seemed to be doing well. In hindsight I should have known *something* was up because throughout the week she wasn't eating as she normally does. But, she had also been through her first surgery in a year and I attributed it to recovery. By the end of the week, Meagan's mood was turning slightly whiny, but again, i attributed it to recovery. Saturday was a crazy day - I taught dance lessons all morning, went home to shower and get my music and flute and then went on to my symphony rehearsal and performance. I didn't see Megs (or any of the kids) much that day, and Brian had mentioned that Meagan had been "eh." When he says that I know something is up because typically she's not just "eh," especially on a day with daddy.<br />
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Today we woke up like any other day. The girls had Irish dance workshops all day long and we had planned for us to split the driving duties so by the day's end, we were all together at dance and then would go to evening Mass together. Needless to say that did not happen. </div>
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Meagan was rather lethargic all day. She was still talkative but didn't want to move from Brian's chair. Remember, this is the kid who wanted to walk so badly after surgery, that she did so, and gave herself a black eye for trying. So something wasn't right. As the day went on she just looked "grey." That's the best way I can describe it. Then the heat. I could feel the heat a few inches away from her. I got the thermometer and Yep. 104 temp. </div>
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Now you may say "kids get sick" etc. Well yea. They do. And even kids like Megs get "normal" kid stuff. But my mama gut red flags were just screaming at me. We were 10 days post op. And suddenly my kid was laying across the chair. Grey. Lethargic. And high temp. In these situations you are literally praying for some other symptom to show. A stuffy nose. Cough. Anything to be just a "normal" kid thing. But as the hours went on, I could tell she was not well. After discussing my concerns with the Pediatrician, we both decided Meagan needed to go in. </div>
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We arrived at CHOA in the evening. Because of her symptoms they were very quick at getting us back to a room. The plan was to run a viral panel and blood work. One or the other was going to give us a direction. I was hoping for a virus. Again, one of those weird prayers you pray as a hydro parent when your kid is down. </div>
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After a few hours we did get some results. Her blood work came back showing her white counts (infection markers) over 25,000. Her CRP (inflammation markers) was 9.5. Crap. Sorry but that's the first word that came to mind. Neurosurgery was paged. One of Dr. R's colleagues came in and did a shunt tap. He couldn't pull much fluid from her shunt, but was able to get enough for a culture. The first cultures should be ready in the morning. If her CSF shows growth then unfortunately it means back to the OR to externalize Meagans shunt. If the CSF doesn't show any growth, we treat her anyway and recheck the 24 hour cultures. Infection in spinal fluid is not anything you mess around with. Luckily Dr. R's colleague agreed and wasn't going to wait for cultures to start hitting hard with meds. Unfortunately Meagan reacts to the ideal medicine to treat such infections, but with close monitoring and allergy meds she made it through most of the dose. After that, they started her immediately on another medicine to help her body keep fighting the infection while we await the cultures. </div>
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People have said its the perfect storm - the timing post op, the blood counts, the fever - for a raging infection to be showing itself. Unfortunately my gut feeling shares that sentiment. However, this isn't Meagan's first storm. So I have faith that with more answers tomorrow and continuing aggressive treatment by her doctors we will hopefully have caught this early and see her turn around. The funny thing about storms is that they do end and the sun always comes out. But in this case, I'm lucky to have light through the storm - and that's Meagan. She is sunshine to everyone that knows her and loves her and we can't wait to see her sweet self feeling better soon! </div>
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We will keep everyone posted as we know updates. </div>
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Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com2tag:blogger.com,1999:blog-603106951187087392.post-62629841666554299802016-03-06T23:59:00.001-05:002016-03-06T23:59:12.246-05:00Stepping StonesWow. It's amazig how fast life can go when you blink! I have been fairly good about keeping up the blog and now realize it has been a few months already! Lots has been going on in the Gareau family during those months. We have had ups and downs. I will do a quick recap and get you up to speed with what has been going on, and especially what Meagan has been doing. She surprised a lot of us this winter and I can't wait for everyone to see her progress.<br />
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I came across an opportunity late Fall to bring another dog into the family. Being that we really missed that "big dog" presence in the house, we wanted a dog sooner than later to be already used to our family by the time the new baby would walk, and the puppies were what we were looking for, we decided to go ahead and commit to taking one of them for our newest family member. We didn't tell the girls, but instead told them we were going to the small petting zoo farm we have visited before. When we got to the farm where we were picking up our new puppy, the kids were absolutely shocked. So much so their reaction was quiet and in disbelief! They thought Brian was just getting a puppy for them to pet so when we told them he was ours to bring home, they were elated. The girls chose to name him Bentley and so he has taken his place in our family quite well. He has big shoes to fill - Dudley was such an integral part of our life. But we have no doubt Bentley will make his own path in the family and be a joy to all of us, especially Meagan.<br />
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Prior to Christmas, Meagan's four older sisters competed in the Irish Dance Regionals (Oireachtas) again this year. They did both team and solo dances and everyone did a wonderful job! Reilly placed 18th and qualified to compete at Nationals. Kaitlin placed top 10! She also qualified to go to Nationals. Anna danced her first solos and made it through with two clean performances. And all three girls along with Maura competed in team competitions where they did a very good job and will also be going to Nationals for teams. I'm so proud of them, especially since they had to go with Brian on their own since I was so close to my due date. They traveled on a plane for the first time, had a total blast, danced really well, and enjoyed a wonderful weekend with Brian, my mom (who flew in to help), and all of our Irish dance friends. <br />
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Christmas was great - although I was very very pregnant and had on again off again labor, we had a great time with our family. Meagan enjoyed opening gifts. For the first time she was aware at least of the excitement and the "buzz" going on around her and really got involved. It was so fun to watch her discovering all the new excitements of the season and watch her taking it all in. She gave us a little surprise as well over the break - for the first time, Meagan started taking independent steps. One day, she just tried to make it between our couch and Brian's chair... and she was able to do a few steps and then throw herself into the side of the chair. It was amazing! This trend continued over the break and into January and by mid January, Meagan was moving around our living room or her classroom independent of her walker. She is really enjoying her newfound independence. It presents a few new challenges now as she doesn't have great balance, so we are more concerned with falls on the front part of her head (where she is missing skull). We also have to now deal with a more intangible challenge - her desire to walk even when she cannot or when she tires out. We love to let her try and walk whenever she can, but, sometimes she tires out and falls a lot, or simply wears out and can't. And other times there are too many people, changes in the ground where we are, or too many crowds for her to safely or successfully walk. So we have had to find new ways to deal with her stubbornness .... we absolutely love the drive it's giving her, but at times it can be extremely difficult to help her understand when she does need to rest and use her wheelchair or let us help her. <br />
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Unfortunately, we also had a sad occurrence over Christmas break. Our beloved adopted cat, Francis, passed away suddenly. He stopped eating one day and went downhill fast. I took him to the vet where they tested him for several things. His white count ended up over 90,000 and his marrow was barely making any more platelets. It was awful. I syringe fed him for a week to see if he would turn around, but, he unfortunately started to get fluid in his lungs and so we had to take him to be put to sleep. He was so young to go and was such a wonderful "bridge" when we lost Dudley. He helped us get through his loss and we were looking forward to many more years with Francis and Bentley. But unfortunately, it wasn't meant to be. It's so amazing how he came in to our lives and just seemed like the perfect fit. Perhaps that was his purpose... to come to us, help us through Dudley's loss, and then be on his way. Either way, he was a very much loved member of our family and we will greatly miss our one eared cat. <br />
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In early January, things turned positive once more with the birth of our 6th daughter, Cara Maeve. She came on her own, on her due date. The whole day was wonderful. Meagan wasn't too keen on her little sister at first - she doesn't' like toys that move, and in the beginning, Cara was just like a baby doll that moved so she wanted nothing to do with her! Over time, I started easing her in to being a big sister. I would leave a diaper on the floor and ask Meagan to hand it to me, or ask her to come a little closer for a picture for Pop Pop, and eventually when Cara was a few weeks old, Meagan was fully in to the role of big sister. <br />
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Cara has been a very happy laid back baby - I suppose she realizes she's #6, so she may as well take it easy and go with the flow. It's been so fun to see Meagan in the role of big sister - she tells everyone "that's my little sister," and gives her hugs and kisses. We had her baptized at our alma mater when she was two weeks old - it was an incredibly special weekend to see her being baptized in the church where Brian and I first started going to Mass together as college students. Just recently, Cara has started to smile and Meagan loves to touch her cheeks and watch her react with smiles and coos. <br />
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The biggest "milestone" over the last several months has been celebrating a very special anniversary. As of the third week in February, Meagan was able to officially celebrate a WHOLE YEAR with no surgeries, hospital stays, or emergencies. I can't even believe I am saying that because being at children's hospital was basically part of our "normal." That has changed a bit, and while we absolutely ADORE Meagan's doctors and the neuro floor nurses, we are happy to say that part of our "normal" has changed for the better. It's amazing what can happen when she stops getting interrupted and is allowed to just be Meagan and learn and grow. We know due to her diagnoses and complex shunt system this won't be a forever thing, but, we will take every day past a year we can get. We are so happy Meagan has been afforded a year to just be Meagan. <br />
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Finally, the newest development has been with Bentley and Meagan. We had considered getting Meagan a service dog, but the schedule wasn't a good match with our family. So we got Bentley on our own. Someone asked me if we were going to just have him trained for Meagan. I had no clue that existing pets could be trained, so I started to ask around. I called the Children's Hospital Pet Therapy contact to ask if they knew of any local trainers that would work with and existing pet. They were able to give me several referrals. I talked to three of them, and finally we decided to have Bentley evaluated at Comprehensive Pet Therapy. In order to move forward with service training, the owner said Bentley would have to pass a temperament evaluation. This is because to even embark on the service training journey, the dog (no matter the breed) needs to meet certain personality and trainability requirements. <br />
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I took Bentley to the training center on a Tuesday night. We met with the head trainer/owner who did the evaluation. It was very interesting to watch - he did many tasks with Bentley, a few of which were testing friendliness, how he reacted to different positions and temptations, and how he reacted to different intense stimulations (like loud noises or things thrown in his direction..etc.). After two and a half hours of evaluation, we found out that Bentley passed! The trainer we were working with was a former neuroscience researcher, so when we designed the program for Bentley and Meagan, it was definitely one of those "meant to be" moments. It was very easy to make goal behaviors for Bentley because the trainer understood many of the intangible needs Meagan has. <br />
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All that said, service training is extremely expensive. Bentley will be away three separate times for about 30 days each living with a trainer and learning what he needs to learn. In between these board training stays, he will come back home and live with us at which time a trainer will come intermittently and work with us and make sure Bentley is continuing what he is supposed to be doing back in the home. We started a fundraiser last week to raise funds for tuition to cover two of his three board training sessions - we will also be saving on the side for the third board train. Needless to say, we are completely overwhelmed with how the fundraiser has gone thus far. Since we have reached the first board train tuition, we are now able to talk with the trainer tomorrow about Bentley's file and set up the official date he will go for his first board train. In the meantime, we will keep the fundraiser open to try and work our way up to his second board train amount so we can keep Bentley on a good schedule that will be best for what his behavior goals are. We cannot say enough how much heartfelt appreciation we have to all our family and friends rallying around Meagan to reach this goal. <br />
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Overall, the last few months have definitely been a line of stepping stones. Some have been up, and some have been down...but that's how steps go anyway, right? One foot is always in the front, and one in the back as we move. What matters in life is which foot we pay attention to - the one in the back, or the one up front pushing us to the next point in our life. If we focus on the back foot, we will never see the potential...however if we ignore the back foot, we lose our momentum that pushes us forward. Stepping stones are definitely a balance and the last few months have certainly unfolded in that sense. We are so excited for the continuation of Meagan's journey and what it will bring. Adding in Bentley's training makes me hopeful Meagan can enjoy more and more stepping stones on her own as she grows.<br />
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The link for Meagan's fundraiser is <a href="https://www.youcaring.com/meagan-gareau-530286/update/441764">HERE (Help Meagan Get Bentley Service Trained)</a>. We appreciate any donation whether it be monetary, sharing her link, spreading the word, or keeping all of us in your prayers. I will be updating the fundraising site with facts about Bentley's training, and as he starts, what he is learning. We look forward to what this new relationship can mean for Meagan's independence, and therefore her ability to do more with her sisters and the family. <br />
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Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com3tag:blogger.com,1999:blog-603106951187087392.post-4621970555934295872015-10-02T09:59:00.002-04:002015-10-02T09:59:33.280-04:00DudleyAbout 8 weeks before Reilly was born, Brian and I decided to get a puppy. It might seem crazy to some, but, we figured with a newborn on the way, why not? Our lives were about to change anyway, so may as well throw in another challenge to the mix. Plus, we wanted them to grow up together and with all the sleeping and eating a newborn does, it was the perfect opportunity for me to train a dog.<br />
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We had decided on a labrador retriever - I had grown up with smaller dogs, but when presented the idea of a dog, Brian said yes but a larger "manly" dog. I was fine with that, as I thought a larger breed would be better anyway for both tolerance of a young infant and toddler growing up along side it, and also for protection of the home if Brian were working late..etc. So off we went to a local breeder about 2 hours from our home in Virginia.<br />
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The breeder was a family on a small farm, who happened to have a few very sweet AKC labrador retrievers. They contracted with another larger breeder of top notch AKC hunting labs, and the large breeder's male was studded out to the family farm every so often for a new litter of AKC puppies... the best of both worlds - pure bred labs with great family lines, but not two parents from the expensive breeder so more conducive to family pets than working dogs. One such litter included Dudley. <br />
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We arrived to observe the puppies one afternoon. They were all playful, healthy, social and any one of them could have been a great pet. We agreed to mark one puppy each, and when we returned after their last vaccines when we could officially pick one up, we would then decide. I chose a girl puppy, and Brian chose a boy. And that was that for several weeks.<br />
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On the way back to the farm several weeks later, we had a great time spending the whole drive thinking of "big dog" names for our new pet. Dudley's dad from the large breeder was named Dangerous Dan, so we had quite a fun time thinking what we were going to name our new, big dog. Upon arrival, the puppies were playing outside - we looked around the litter. I saw the female dog I had marked with the marker, but could not find the male puppy Brian had chosen. Then, as the pile of puppies started to disperse, there was Dudley. At the bottom of the pack getting picked on and we just knew he was ours. We also knew we couldn't give him one of our "big, scary" large dog names because, well, he had totally different personality. Brian also knew he wanted to name his dog after one of his favorite Xavier basketball players. We compromised, and so, Dudley Sato "came to be."<br />
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Over the years, Dudley has been an amazing dog. From his snowy adventures in Virginia, to being so good with the kids, other pets, and other people, to the ways he has stepped up to protect us exactly when needed, he enriched our lives in so many ways. Even in our move to Atlanta, he rode in the moving truck with Brian - never causing any problems, just sitting there like the second man in charge and enjoying his "daddy time." <br />
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Dudley was a gentle dog. No matter who fell into him, who stepped on him, what tiny toddler grabbed on to him for balance, what animal, human, or anything else crossed his path - he was patient, kind and tolerant. In all his years, I only ever saw Dudley bear his teeth one time at someone. I had inadvertently answered the door one day (which I typically never do). A man was selling something, and I wasn't interested. As I went to close the door, he stuck his foot out and put it in my doorway. Out of nowhere, Dudley ran as fast as I have ever seen, fur sticking straight up from his head down to his lower back, tail stuck straight out, and lips quivering upward as he bore his teeth growling. He pushed his big old self directly through my legs and got right in the man's face. Visibly shaken, the man quickly retracted his foot, upon which I closed the door quickly and locked it. Obviously, we have people in and out all the time - so Dudley must have sensed something wasn't right and never hesitated to run to help. Not even 5 minutes later, he was back in his sunny spot in the kitchen, completely calm, sound asleep. I will never forget that day. It was the one time I saw that Dudley, if need be, would protect his family. <br />
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One of the surprising things with Dudley was his amazing ability to adapt to Meagan when she came home from the NICU. It was like he immediately sensed she was different. We began to notice him just laying at her side when she would sleep, coming up to her and sniffing/licking her nose if she was really lethargic some days, and when Meagan had seizures, we began to notice him just getting up, going over to where she was, and almost standing in a "pointed" manner - think, when a hunting dog stands still on a hunt. It was so odd because we had never seen him do this before, but, almost always without fail, it ended up being a seizure day for Meagan. He made himself in to somewhat of a seizure dog just by his own instincts picking up on her differences. As Meagan grew, he became her best friend (as he was with all the kids) and she would often just lay next to him and stroke his soft fur. As she began to talk in the last year, she always leaned on Dudley and said "oh my buddy." And he was.<br />
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If you all remember, last January when Meagan was in the hospital with all her shunt malfunctions, Dudley was having surgery at the same time to remove a tumor. It came back an aggressive form of mast cell cancer, already in stage 4 and there was really nothing we could do. We didn't want to make him any sicker with chemo, and on top of that with Meagan's mounting hospital bills, it wasn't an option. We chose to do pain meds and also steroids to help slow the cancer as much as possible. He fought hard for almost a full 8 months - 6 months past the life expectancy the vets had initially predicted. That's not surprising though. Dudley loved his family, loved people, and loved life. I had a gut feeling he would fight and fight until he just couldn't.<br />
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Two weeks ago today, I had to do one of the most heartwrenching things I have ever had to do - I took Dudley to the vet for the last time. Three days prior, he had suddenly stopped drinking water or eating any food, and in the two weeks prior to that, he had started to have trouble walking and breathing due to the tumors infringing on his shoulder and neck joints. Now for any lab owners out there, you know how food crazed they can be! Even after surgeries or even when feeling sicker the last few months, Dudley would still try to lug his body up to the table or even countertops to steal food! I knew this wasn't a good sign when he had no interest. After a few days of this, I decided to take a piece of steak and just give it to him so he had something in his system. He sniffed it in my hand, turned his head away, and laid down, refusing to eat it. At that point, I knew he was telling me it was time. <br />
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I remember the kids' kindness his last days. Dipping their hands in water to try to get him to lick some sort of hydration. Snuggling with him and talking to him to eat something. Making him pictures and taking the pictures to put under his face in hopes he would see them. They could see how bad he was, and they knew it was for the best, but they are also kids and didn't understand the "why." They have never known life without him, and it was absolutely devastating for them.<br />
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The kids went to school that day after saying their goodbyes to their beloved pet. Brian was very upset - although I had been the one with dogs growing up, he had been the one that bonded strongly with Dudley through the years. Girl after girl, they became the "men" of the house and had an unbreakable love and respect for each other. Dudley loved me and loved the girls, but when Brian was around, forget it. I asked him if he wanted to go out of courtesy, but deep down I knew Brian just could not go to the vet. That same morning, Meagan has her day off of school and goes to a music class - I asked him to take Meagan to music to keep her in her routine, and I would take Dudley. Before I left the house, Brian took Dudley on one final walk. It broke my heart.<br />
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After that, I put Dudley in the car, and we drove off to the vet. Dr. H (the vet) is extremely close to our family - she has been with us over the last 9 years of his care, through all our ups and downs and through Meagan's traumatic events and celebrations. It was so nice to have her be the one there. She took so much care with him - as soon as she came in and Dudley just laid there hurting, she started to cry. She said yes, we were right - it was definitely time. She decided to forget any IVs, tables, etc... She let him just lay comfortably on the floor and another tech and I sat with him. I cradled his head on my foot (where he loved to lay), and it wasn't even 30 seconds into his shot that I felt his head relax, and he was finally at peace. <br />
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It's been really hard without his big loving cumbersome "Dudley" presence in our home. We all miss him dearly. Reilly is upset off and on, Kaitlin doesn't say a word but sometimes acts out as her way of dealing with it, Anna cried for about a week straight, and Maura just asks a lot of questions about where he is, what he's doing and will we see him again. I got the girls a book, recommended by Dr. H. called "Dog Heaven." It is awesome. Such a sweet, touching, and healing book. It talks about God, and pets, and the love we have for our special four legged family members. It was definitely helpful for the girls. <br />
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Meagan didn't really grasp what was going on. After about a week or so, she started asking "Where's Dudley?" finally noticing he wasn't around. I just tell her he is in heaven and we miss him. She still asks where he is, and I imagine this will go on for some time. Poor thing.<br />
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Any dog owner knows how special these pets are. They are the ones always waiting for you eagerly making you feel wanted and welcome, always the ones wagging their tails no matter how bad things are, and always the ones crawling in your lap with love (yes, Dudley did this even at 82 pounds) no matter how little, horrible or unwanted another person had made you feel that day. Dudley was all of this. He was such a loving dog, and waded through every trial our family faced with just as much grace and patience as anyone else. <br />
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RIP Dudley Sato. He would have been 11 on October 26th of this year. We still plan to celebrate - because even though he's gone, his impact will be with us forever.<br />
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<br />Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com5tag:blogger.com,1999:blog-603106951187087392.post-53147796900964424482015-09-23T23:16:00.003-04:002015-09-23T23:16:34.985-04:00The Difference - Happy 4th Birthday Meagan!I remember Meagan's birthday last year. I remember her going downhill that day. I remember coming home and my in laws not knowing what was wrong with her as she struggled to sit up and slurred her speech. I remember driving her to the hospital while I had one hand on her foot, pulling on it with force every few seconds so I could keep her awake as she kept trying to slip into a deep sleep. I remember seeing her doctor in the ER who said she was going to the OR right away. I remember sitting there waiting on her third birthday in yet another waiting room, dealing with another setback, going through another surgery. I remember her going to sleep in a hospital bed with fresh incisions, medications and hooked to monitors. I remember finally coming home after she had recovered and seeing the half made blue cupcakes we had purchased to bake because she loved Frozen, and the presents she hadn't opened. What a difference a year makes.<div>
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The rest of Meagan's third year was not without consequence. Her birthday surgery was unfortunately the beginning of another chain of surgeries and hospital stays that would take us through last February. But since February, she has not seen the inside of a hospital. Not once. Not for an emergency scare, a surgery, an illness she couldn't fight off, or any other number of things she typically has had trouble with in the past. Since February, she has been home. Playing, laughing, learning, starting school, and doing everything that she should be doing. For once.</div>
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Instead, this year, Meagan got to have a party with friends and family last weekend. Today, on her real birthday, she got to go to the Zoo with her sisters, grandparents and dad. She got to see the animals, take in the fresh air, look in wonder at things she was seeing for the first time, and touch animals in the petting zoo. She got to stop at her favorite place on the way home and have lunch. She got to play at home, take a comfortable nap, spend time with her grandparents while I taught dance, and give cupcakes to all her little dance friends who support her so much. Instead, this year, Meagan sat at the table with us while we ate dinner, licked her cupcake for dessert, and got her night feed comfortably in her own home. Instead, this year, Meagan got to sit in her living room, open some presents, and be excited to be 4. Instead, this year, her daddy got to tuck her in to her own crib, with her own blankets, animals and soft sheets. No beeps. No lights. No 'owies.' ..... just a girl going to sleep after a long, wonderful, happy birthday.</div>
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I hope we have many many more birthdays like this with Meagan. It has been refreshing to watch her through the day just enjoying life. She is such a strong little girl, and has a will power like no one I have ever seen. To think this time last year she was not even sitting, and despite all of last year's setbacks is now up on a walker, curiosity sparked, ready to engage and explore her little world is amazing. </div>
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What a difference a year makes, this is true. But the fact that she is with us at all, no matter if the birthday is the unexpected bad, or the oh so hoped for good, is really what makes the year great. </div>
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Happy 4th birthday to our little spark - may your light always shine bright, in the dark or the light, and may we have many more years with you - because you are truly what makes the difference in our year. We love you Meagan Theresa Gianna!</div>
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Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com1tag:blogger.com,1999:blog-603106951187087392.post-23692637904092683342015-08-12T09:38:00.004-04:002015-08-12T09:40:04.694-04:00Let the Light ShineThe summer flew by quickly and there were lots of happenings! After we returned from our Nationals trip, we had some time at home to get things ready for school (yes, school. It starts in early August here....which... is good. By August and 10 weeks of summer, we are ready for it.. and it's way too hot to be outside!) We made one more trip back up to the DC area to see my parents, my brother and his son and had a great time.<br />
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While we were there, the girls participated in another competition - this time it was the Nations Capital Feis. We usually go back each year because it's near my family, and also the competition is put on by my Irish dance school I attended growing up, so it's fun to go back and see everyone. <br />
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My girls and me with my former dance teacher</div>
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When I say "the girls," this time I mean ALL my girls. The feis had a special needs competition and so of course we signed Meagan up for it! She sits through so many countless hours of dance practices, shows, and other competitions, that it was definitely a great opportunity to let her be part of it all. We weren't sure how she would do being up on a stage and with the loud music directly in her ear (she has a lot of sensory issues with louder noises) but she actually did great! It took her a little bit to get warmed up, but then she started kicking her legs, moving her feet, and at the end even did a cute bow. The audience was wonderful and started clapping to help get her in the mood. After she danced, she went with my husband to find her name on the results sheet and got her trophy! It was such a wonderful experience and a nice way to include siblings of dancers who may not have the same opportunities to do activities. Again, the Irish dance community stepped up and made Meagan's day! We are so grateful for that.<br />
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Ready to go!</div>
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Finding her name</div>
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Kissing her trophy </div>
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Once back home, it was time to get back to school! All the girls were very excited. If you remember, we pulled them from their old school last November. It was a midyear change, but they did great. This year, they got to start with everyone on the first day which was exciting. All the girls had a wonderful first week and love all their teachers. I really can't say enough about this new experience for them - the teachers, the care and concern from the staff, and the organization and parental involvement is such a breath of fresh air. <br />
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All ready for back to school! </div>
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(And yes, that's Dudley... he's still hanging on...)</div>
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Most of all the treatment of the children is amazing - as it should be at a school. I have seen the girls transform, and most especially, Kaitlin, (who was the most damaged by her old school), realize that she is in fact smart and that she does love to learn. Just today, Kaitlin's teacher sent me the following picture. <br />
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The students had to write about their greatest gift ever received this year and Kaitlin wrote "To get into Mrs. S's class"..... To see this made my day. I'm so happy she is in such a good environment with a teacher who actually loves her students and builds their confidence daily. It's a gift.<br />
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With back to school also came catching up on some "business" side of things. Now that Meagan is starting to use her walker, we want to encourage her to do so whenever we can. Because of this, it was finally time to go and get a Handicapped placard for the car. Trying to have her navigate through busy parking lots just isn't safe - and since she can't go very far, by the time we would make it inside somewhere, she would be completely worn out. We got Meagan's doctor's notes together and filled out the forms, and went to the county office where they issued her a tag. She insisted on holding it, but we had a little problem when I wanted to hang it up in the car - she wouldn't give it back! Ha.... she said "No, M for Meagan!" when she saw the writing. So, for that first ride home, Meagan held her placard the whole way. Once we got home, she finally let me have it to hang up.<br />
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<b><i>As a gentle reminder, I want to use this opportunity to remind people to not abuse the handicapped parking spaces. If you park in these spaces even for a second to run in somewhere etc..., you could be blocking someone who really needs it. In addition, if you are a caregiver like myself, don't use the sign when you are alone. </i><i>If Meagan is not with me, I do not use the handicapped spaces. It is for HER, not me. </i><i>It's not what it's meant for, and truly disrespectful to those who need it. I only say this because I have seen this happen over and over again, including a few times now when I needed to park with Meagan. Also, try to remember not everyone's disability is visible - there could be heart issues, or severe arthritis issues..etc..that bar people from walking long distances. So while we shouldn't allow abuse of these special spaces, it's also important if someone has a placard to respect that, even if they look "normal." We just don't know everyone's battles. Thank you!</i></b></div>
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Another "business" item to check off was Meagan's follow up with Dr. R.... yep, you read that correctly... 'follow up.' This was the first summer Meagan has been able to enjoy it with her family. The whole time. No surgeries. No hospital stays. No ER visits. And for the first time in many many months, she has finally made it to a regular follow up appointment. She had another scan and an exam by Dr. R.... everything looked stable and she is released to not come back for a year. A year. We haven't even had 6 months without a surgery - so those were amazing words to hear! Of course we got a photo with her two most special doctors who have helped her through so much. It is truly because of their innovation last year that she is able to function comfortably and have this long break from any issues. We are so grateful to Dr. R and "Elsa" Blaire for their excellent care.</div>
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This has been quite a long update! I didn't do a great job keeping up with the blog towards the end of the summer, but those are actually refreshing words to write. It means I was too busy keeping up with our girls and especially Meagan as she embarks on new things! Sometimes, no news is good news. But even when there are no crises, surgeries, or hospital visits, any news about Megs and her zeal for life is good news. So we share it, and hope it brings you as much joy as it has brought us. What she does or doesn't do really isn't important - because it is her special soul that makes her who she is...and the light that little soul gives the world is undeniably infectious. </div>
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Meagan's post dancing interview :)</div>
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Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com6tag:blogger.com,1999:blog-603106951187087392.post-63921024649309111942015-07-09T21:53:00.003-04:002015-07-09T21:53:52.094-04:00IndependenceThe last few weeks have been filled with such busy times, I realize I haven't updated the blog in a while. So many people comment about summer break, but, those of us with busy schedules, lots of kids, or other things going on know it's just as busy as the school year. Add on to that a child who can be unpredictable, and has a lot of extra needs and extra "stuff" it can be overwhelming. What should be fun times to travel can sometimes turn stressful. Luckily most things went very smoothly this time.<br />
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Towards the end of June, I had another follow up with the perinatal specialist. This time I brought all of my girls with me so they could see their little brother or sister on the ultrasound. I was a little concerned about Meagan because she freaks out when the lights are turned off, but she actually did ok. A lot of that had to do with the doctor I saw. After my experiences with Meagan and the last appointments with this baby, I told my OB about what they had said. She was not happy and told me that I had to see Dr. A from that point on. Upon checking in at the specialist, I asked if I was seeing Dr. A and they said yes. <br />
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I knew from the minute he walked in that it was going to be a great match. The very first thing he said to us was "I know we aren't going to find out gender, but I'm going to call your baby 'he' until the birth because he or she, I can't say 'it'.... there's a person in there!" Yep. My kind of doctor :) He talked to all the girls about what they were doing this summer, wished them luck at Nationals, and asked them if they were excited about a new brother or sister. Surprisingly, Meagan didn't freak out either. I think she could tell his sense of calm, and also that he was genuinely interested in our family. He talked to Meagan and told her she was pretty and directed her attention to the big screen on the wall so she could see the baby. Meagan was hilarious - she kept saying "wohhhhhh" and "hi baby!" It was the cutest thing ever. The rest of the girls were equally excited and noting every part of the baby and were completely amused by the baby rolling around, stretching out, and ultimately, resting his/her hands under the chin as if we were taking a picture. Dr. A said all looked ok so far, and we would go ahead and have another scan at 18 weeks to look at the brain anatomy in more detail. He told the girls if they had any Irish dancing shows locally to tell him and he would definitely come. We left with a good feeling, the girls were ecstatic having seen their sibling, and Meagan of course continued to ask for "the baby on the movie." <br />
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After the appointments, we hurried home because we had a lot to pack. Nationals was in just under a week and we had to pack the car to leave. We brought Meagan's wheelchair and walker so for longer distances she could rest, but in the hotel she could practice walking and keep up her progress. We stopped on the way up at my parents' house to see my brother and nephew, and also take a little break so I made sure to get out and walk as much as my OB instructed. Meagan had fun at Nana and Pop Pop's on our stop over.<br />
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Trying on Pop's hat</div>
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Riding on my brother's old horse from</div>
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The week was a lot of fun for everyone. Reilly and Kaitlin competed in their first North American Irish Dance Championship ever. They danced really well and were so close to recalling! They learned a lot and are excited for a great Oireachtas (regionals) in December. Anna, Maura and Meagan were enjoying time with my parents, who came up to help us. They got lots of trips to the pool, some exploring of Providence, and also lots of time to watch dancing. We were able to have a little break in the middle of the competition when both girls had some time off and took the family up to Boston. We visited Quincy Market, walked the entire Freedom Trail and climbed the tower at Bunker Hill. The girls had a great time seeing all the historic sites and getting out in the fresh air. Kaitlin was able to find a new solo dress and was over the moon to wear it on her dance day! The girls were excited to see their cousins who also dance, and also stop on the way home to see Brian's sister and her family. They just pcs'd from Newport back to the South so it was the perfect stopping point on the way back to the house. </div>
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Reilly having some fun after her soft shoe round</div>
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Kaitlin ready to dance treble jig in her new dress!</div>
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Along our walk in Boston of course...</div>
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Meagan at the Market</div>
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For Meagan, it was a very exciting week as well. Since she can't walk, we all know how obsessed she is with the Irish music and rhythms. She loves looking at the dresses, shoes and all the dancing. She would clap every time dancers took the stage and ask when the music would start. She got a lot of practice in her walker around the hotel. One night she met a few dance teachers from Chicago who talked with her a little bit. Every time we passed other dancers or dance families they would smile at her, or tell her encouraging things like "good job!" or "wow you will be dancing in no time!" It was so nice to see and hear all the positive responses directed towards Meagan. She was extremely spoiled (in a good way) the entire week with the positive attention and motivation to keep moving. She even got to spend some time with Emma and Erin as we went over scores one night. Meagan was in heaven spending about an hour with them talking about dance, playing with them and flipping through their phones looking at videos and pictures. We are very grateful to have such warm hearted teachers.<br />
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Meagan talking to anyone who walked by as she </div>
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worked her way through the hotel lobby</div>
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At the pool with mommy</div>
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As we made our way home and started to unpack, I got a reminder on my phone that Meagan has an appointment with her Neurosurgeon next week. I had almost forgotten but sure enough it crept up on us. My second thought was that we have finally had a summer with NO hospital visits. No ER trips, no admissions, and no surgeries. It feels strange to say that, and I'm almost wary to admit it, but I have to. It's something to celebrate. Meagan has been able to just have summer for the first time in her little life. No pokes, owies, hospital gowns or recoveries. It dawned on me that for just a little while, we have actually functioned as normally as we can and didn't even realize it. </div>
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Meagan will continue with her PT now that we are back home - more meetings with her therapists outside of the home to facilitate more functional walking with her walker. She does well but still tires out so easily. She stops a lot and will just sit down. I can't blame her! It probably feels like us running up hundreds of stairs every time she pushes her little legs to take step after step. To help with her balance and hopefully build more strength in her hip area, we have been working with her on independent standing. On the way home in the hotel, Meagan decided that was her time - and showed us this: (don't worry, I was right there and caught her :) )</div>
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Sometimes things with Meagan and life in general can seem overwhelming. I hide it pretty well (thank you type A personality) but it's just our existence. So when we have these experiences of a great week away with great family and friends, and great encounters with strangers, it just reinforces the strength in me that I need to save up for the harder times. Seeing Meagan maneuver her walker through the hall, bumping in to tables, chairs and walls, but then self correcting... or seeing her get stuck but have the awareness to say "help!"..... or seeing her be able to go where SHE wants to go and talk to whom SHE wants to talk to.... it was overwhelming in a different way. For the first time in almost four years, Meagan was finding her own independence. She was making choices, making her own path, and for better or worse, deciding exactly what she wanted to do. She's always had that spirit in her - and now seeing her body start to respond somewhat to that is amazing. </div>
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We hope everyone had a wonderful Independence Day week with their family and friends. We know we did - and watching Meagan begin to find her own way made it that much more meaningful. </div>
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<br />Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com2tag:blogger.com,1999:blog-603106951187087392.post-48317760196270509092015-06-14T13:04:00.002-04:002015-06-14T13:12:05.559-04:00Words - announcement to the girls and first meeting with the specialistBecause of the history of my last pregnancy with Meagan, of course I have to re-visit the specialist OB again with this pregnancy. I had my first appointment with them a little over a week ago. I had mixed emotions about going back. It was such a negative experience being in their office. It always felt gloomy, sad, and unwelcoming. Of course these feelings were exasperated by the fact that at least three of my visits were heavy conversations about terminating my pregnancy with Meagan due to her severe brain problems. There was just no way I could have a great feeling about the office. Going back was a whole different story. Now that I have parented a special needs child for almost 4 years, and seeing what a joy she is in this world, it wasn't the gloom or sadness I felt as I walked back in the door. It was anger! And definite feelings of pity - that they were missing out on the Meagan's of the world because they don't bother to look at the reality of a lot of situations.<br />
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To be fair, I realize these specialists deal with a lot of "doom and gloom" in general because women are there for that reason - there is "something" high risk about their pregnancies. Whether it be "just" age, or fertility issues, or the multitude of illnesses or conditions that can occur in a baby, I'm sure they rarely see the completely "happy" situations. However, despite all that, it still bothers me that they have this attitude because it's truly a choice. They could have a more balanced view of things. They could realize that even terminal babies have something to offer the parents and the world by honoring them and loving them - not advocating terminating them. And they certainly have a choice to not offer full front in your face the inevitable "termination" option when something shows up "not normal" about a baby. I think this is what stuck with me most during my pregnancy with Meagan - how walking in they had talked about finding out the gender of my baby, and once the severe hydro was seen, they immediately talked about terminating "it." Again, I feel for their day to day situations they must deal with, but, I have come to the point through parenting Meagan when I have lived life not always being roses.... but guess what. It's still LIFE.<br />
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I made my way to the desk and checked in. I decided from the get go that I would use my strengths to hopefully change or at least inspire some thought in my former doctors so perhaps someone down the road could have an easier time, or at least a feeling of support from the doctor whose patient was technically the unborn child. Once called back, I was excited to see our little one on ultrasound again. As soon as the picture came up on the screen, there he/she was. Wiggling around, head, body, little arm and legs (although short at this point), and the clear umbilical cord that had formed and already nurturing the baby. The tech was very nice and remembered me from Meagan - she asked if she could see her now. I said of course! I showed her a few pictures of Meagan's birth, explained a little about her, and then showed her pictures of her now. The tech thanked me for the update and said she always thought about us because she wondered what had happened to the baby she had scanned so many times almost 4 years ago. <br />
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After the ultrasound, I was ushered into the office of the doctor to discuss the plan for the pregnancy etc. Basically, I knew it was going to be the doctor telling me all the tests they were going to do to make sure this baby was "perfect." Barf. As the doctor went through my file from Meagan, he detailed all of the things they had found wrong with her, the severity of the hydro, and after that I pretty much blanked him out and just sat there while he rattled off all the negative stuff....but then he said as he flipped through the last page "and it looks like it was a girl...." I sat up in my chair and said "excuse me?" He said "It was a girl." I said "Actually she IS a girl... a little girl who is almost 4." With no change in demeanor, he said "oh that's right, you had her." At this point, I decided the special needs mama bear needed to just be present at each appointment because it was apparent even though she was here and alive and a joy, he could really care less. When he asked about the testing, I simply said "Any testing that is not invasive to our baby, we are fine with. We want baby to be as safe as possible until delivery." He looked at me with a funny expression on his face and asked "Don't you want to know if there is a problem?" I answered "yes, but only to the point that helps us best prepare how to help the baby at birth, or make a birth plan according to the needs of the baby." Again he looked taken aback and repeated Meagan's diagnoses. He said the most common forms of hydro were genetic (false) and that otherwise typically mothers cause the hydro due to being sick or having an infection (false again.) At this point, I spoke up. I told him that I hoped just because he had an MD, he didnt' think he knew the first thing about hydro, or my daughter. Or any other child with hydro for that matter. I told him that he was wrong - if he would like a handout from our neurosurgeon on the actual facts of Hydro I would gladly drive to Children's and get him one for my next appointment, but that no, actually genetic causes are not number one, and that no, I didn't cause Meagan's hydro from having an infection. He looked a little perturbed and asked me where I heard such a thing. I told him from Meagan's neurosurgeon and her neurology team. They had told me long ago based on her scans that they believe something happened in that first month of development that changed her brain and caused the hydro. I also told him I would highly recommend any other parents that come through his office with this diagnosis be immediately sent to either our Neurosurgeon or our Neurologist for a consult since it was apparent he didn't know much of anything about the condition or how children with hydro actually lived. I also suggested maybe in his free time he could go spend some time volunteering with FOCUS or another local group that works with special needs children so he could see that just because they aren't "perfect" according to his textbook, they are people with dignity, joy, and lots to offer the world - more than he could ever hope to do. <br />
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The remainder of the "meeting" went pretty quickly and he didn't offer any more "opinions" to me. I think he got my point. We set up the next few tests for this baby, and made my next appointment. I told him that next time, I would bring Meagan in with me so he could see her face each time he had a patient with a hydro baby. He said he was open to seeing her, and so I left with a handshake and a polite smile, thanked him for his time again, and told him that I was glad he would be able to meet her. I know it seems like a little bit of the opposite of what I had just said to him, but, again, I try to remember what he sees each day. And while my points had to be made, I had also promised to be firm, but leave with kindness. I was finally able to share my feelings with him from four years ago - that was stern mama bear. But mama bears are still mamas. And so I did keep to my promise and left with kindness and a hope that my approach and him meeting Meagan next time would start to turn his heart, even if just a little bit.<br />
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After the appointment, I felt good about the plan for monitoring this pregnancy, but also felt even better that we were prepared for just about anything. Whatever the tests in the upcoming weeks show, we are ready. We love this baby and we would love a boy, girl, 'typical' or another special needs child. Our hearts are open to it all and we are very excited for this new addition to the family.<br />
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Brian and I had decided early on that we would not wait to tell the kids about the new baby. I was already feeling pretty sick, was falling asleep after school at times, and some of the older kids who know I typically just go, go, go were concerned. They had already asked me what was wrong when I was so tired or feeling ill. We got a "big sister" t-shirt for Meagan and decided to call the girls into the living room and write them a cute note to read which would lead them to noticing Meagan's shirt. To say it didn't quite go as planned would be an understatement. But, a really funny understatement. It kind of opened my eyes to how innocent the kids still are at these ages - or even though they know about seizures, and meds, and surgeries, and therapies, they still knew relatively little about how they actually came to be sisters. I won't say much more about it, but will simply post the video below. I'm positive it's just about the funniest video I have ever seen in my life.<br />
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The week was certainly filled with ups and downs. The girls' reaction to the news was certainly a highlight, whereas the specialist visit was somewhat of a drag to the week, but both had their purpose. And through it all the only reason I had the words to get through was because of Meagan. Without her experiences or her teaching me how to be a stronger mama, I wouldn't be able to be who I am today and get through the appointments I will need. Without her, we wouldn't be the family we are, and without her, the world would be a darker place. I'm always thankful I'm her mom, but in moments like at the doctor office, my eyes are opened even more as to why she is in our lives. There is a lot of work to do. And she gives me the words to get started. </div>
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Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com3tag:blogger.com,1999:blog-603106951187087392.post-66770535871551101472015-05-15T16:21:00.001-04:002015-05-15T16:21:08.726-04:00Life's MelodyA little time can give you a lot of perspective on things. A little taste of reality can really wake you up to the perception of other people. And something you thought insignificant at the time can really prepare you for the most significant things in your life.<br />
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Being a mom, especially a stay at home mom (for the most part), is a challenging job. Yes, I chose my words on purpose. Job. It is, in fact, a job. It isn't always perceived as such, and I get it. It's hard to see that mom with her hair in a ponytail in work out clothes walking her child into school as "doing" anything. She's not in a suit. She's not going to an office. She's not producing tangible products where you can purchase, use, or see her hard work. It's understandable. This can be frustrating at times, but, it also made me flashback to college days. The days of working towards my music degree - and similar perceptions that would take place. It's funny how things come about and what makes random memories come flooding back to all make sense at a later date.<br />
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I was a music performance major in college. I would be lying if I didn't say I had the time of my life. It was fun. It was fulfilling. And it was the chance of a lifetime to pursue my dreams. The instructors were top notch - preparing me on the technical aspects of my instrument, the historical facts of music through the years, and the theory practices necessary to understand what I was playing and how I could write it for other people. It was a great education. I was fully prepared to go forth and perform. Teach students. Share music with others in the best ways possible. What I didn't realize, is that it also prepared me in the closest way for being a mom.<br />
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Many degrees take lots of hard work. Matter of fact, all of them do. We know the demands of technical degrees, medical degrees, and the multitude of other "professional" educational paths. Even if we are not in those areas of work, we know it's hard. We know its hours and hours of studying, preparing, and studying some more. We just know this because it is told to us over and over again growing up, while in school, and also while out in the real world. When someone says they studied medicine, or accounting, or law, typically people give a response of approval and respect. "That was hard," they are thinking. When I say I was a music major, the overwhelming response tends to be "that's fun!" or the ever hesitant "ohhh".... with not much to follow. Occasionally someone will say with a chuckle, "so what's your real job?"<br />
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Ah, so now I believe you are seeing the connection. How could studying music prepare me for raising my children? How could having a music degree prepare me for the demands of motherhood? Let's count the ways....<br />
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1. Outside perception: Walking in from hours of classes and studying, others see me on the couch. Not quite dressed for the day yet and catching a show on TV. Comments about how lucky I am to be able to watch TV are said as they walk by to go study some more.<br />
What they don't see: After classes the day before, there was a three hour rehearsal for an upcoming concert. (That's not on the class schedule). To prepare, I spend at least an hour if not more in a tiny practice room going over and over difficult passages - computing, analyzing, and interpreting musical terms, rhythms and notes until they are perfect. Then, I go to the three hour rehearsal. After the rehearsal, I realize I have to work on my music composition that is due later in the week. I know the following day I have to study for my Statistics and Modern History exams (because yes, music majors also have to take all the regular courses too), so I decide to head to the music lab. I put the code in the door and walk in. It's close to 11pm. After working several hours composing, transposing, and sorting instrumental parts, I decide to work on that theory project that is coming up. At about 330am, you finally realize you need some sort of sleep to study your other classes that day, so I head out. I realize though that the shuttles have stopped working. I don't want to walk across campus and down the road to my apartment in the dark on my own. I instead decide it's safer to go across the campus square to my friend (future sister in law)'s dorm room and just sleep on her futon until it is safe to walk home. I wake up around 7am to get my stuff together and make my way back to my apartment. At this time, others have already left for classes. I get inside, get out my sight singing book and CD and follow along for the next lessons that will be taught in class that day. I look over your stats and history notes and then finally sit for a minute before I will have time to shower and get to my midday classes. As I turn on the TV, others walk in and comment on the free time you have.<br />
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2. Outside perception: I am getting dressed for a gig. With my Irish band. At a local pub. I throw on my dancing skirt, grab my flute and whistle and head out the door around 8pm. I am going out. "Again"... while walking back at 7am to my apartment, clearly I have been out at a party all night. Must be fun.<br />
What they don't see: In between my philosophy class and science lab, I ran down the street to meet up with the Irish band. I rehearsed for a little while putting together set lists of tunes, songs, and dance numbers. I ran back for an afternoon orchestra rehearsal. After rehearsal, the choir director sees me in the hallway and says he thinks flute would sound really great with his choral piece and asks me to play with them on their upcoming concert. I agree. What's one more obligation? He says great, grabs the music, and then I find out the concert is in two days. Two days to learn an entire piece of music and blindly perform with the choir. I run up to the music lab to work on my composition some more, but there is a class at that time, so instead I go next door to the dance studio, practice some of the steps I will do at the gig that night, and then go back to the lab. Yet another class. The instructor says it should be free after 8pm. I realize it's getting late, so I run back to the apartment, get dressed, grab my instruments and leave. I arrive at the pub by 8:30pm. I play Irish music, sing, and dance with the Irish band until well past midnight. The little money that was paid to the band will be split, and I might be able to cover gas or lunches that week. I arrive back at the apartment and realize that the music lab would be free now. I head back to the lab, work more on my composition, and because it's so late, (4am), I stay again at my friend's dorm for a few hours. I finally arrive back at the apartment around 7am as others are walking to class. I need a short nap because I have an 8am biology lab and then have to drive 45 minutes to a suburban high school to teach flute for 3 hours.<br />
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3. Outside perception: Fast forward to post college music life. I arrive to play at my symphony concert. All dressed up, pieces well prepared with practice, and a smile on my face. I give a wonderful concert. People compliment me as I leave. When asked if I have any other work obligations before the next symphony concert, I reply "no" and politely excuse myself to exit, thanking the people for attending. <br />
What you don't see: Between the morning bus, drop offs, appointments, preparing food, cleaning the house, organizing school functions, managing private students, and setting up teaching obligations at local high schools, I squeeze in practice anywhere I can. 24 hours before the concert, my youngest daughter starts acting really sick. She has a brain condition that requires surgical intervention when her devices stop working. I take her to the Children's ER - yes, her shunt is failing. She is going to need emergency brain surgery to fix a leak in her shunt. She is admitted and prepped for the OR. The next morning, she is taken to surgery. I haven't slept most of the night because I am trying to organize things at home from afar, and tell my husband what clothes to grab for me and where my flute and music are kept. Megs comes through the surgery great but she will have to stay a few days for them to dial up her shunt as she recovers. I am dreading the concert that night because I have never left her. Ever. I have always stayed with her for every hospital stay, every appointment, every hurdle. I have to play the concert, however, because it is one of the few paying jobs I have. Music is also an outlet for me and I know it will help the stress in the situation. I begrudgingly get dressed up as Meagan is sleeping behind me in her bed with fresh stitches in her neck and head. I put on make up as the nurse is setting up her feeding bag. I talk with the nurses about the instructions while I am away that evening, and leave for the concert. My high heels make such loud noises walking the Children's hallway at that time of night and it feels awkward to be dressed up in a hospital. I drive to the concert venue. I sit in my place and get out my flute. I start playing to warm up. I greet and chat with my colleagues but my mind is on Meagan. The concert starts and I throw myself into the music because if I don't, I will burst in to tears at being away from my daughter. The concert ends and I smile. As I make my way down the aisles to leave quickly, I chat with a few people who came to see me that night. I am so glad they came, but my mind is on Meagan. I am asked if I have any other obligations before the next concert and I politely say no. I leave as soon as there is an opportunity, drive back to the hospital, get into comfortable clothes, and snuggle in the hospital bed with Meagan. I sing some of the melodies from the concert to her as she goes to sleep.<br />
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These are three VERY small examples, and there are countless other times I could cite. But the basic point is made. The mom not dressed well dropping her kids off could have been up all night sick. Or doing laundry. Or paying bills. Or working. The mom who volunteers at the school all the time isn't bored. She doesn't have a lot of free time. But she knows giving back at the very place educating her children is important. We don't see the dirty kitchen, or the doctor appointment she cancelled, or the day she took off her other job to be at the school. The hard work behind being a mother is truly rarely seen and always undervalued.<br />
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Music is beautiful, difficult, emotional and complex....just like motherhood, especially when parenting a special needs child. I have realized moms are the musicians of life. We don't write the music.......but must take the notes God gives us, no matter how disjointed or dissonant, to make life's melody for our children. I consider myself lucky to be able to play music<i> and</i> be mom - the two certainly go hand in hand.....particularly with Meagan. I have learned to find beauty even in times of life's worst melody......and I couldn't have asked for a better job.<br />
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<br />Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com1tag:blogger.com,1999:blog-603106951187087392.post-60876626242053623702015-05-06T00:27:00.001-04:002015-05-06T00:27:12.561-04:00Sibling RivalryAnyone who knows our girls knows they are happy. They are giving. They are caring. They love being sisters and love spending time together. That said, they aren't perfect. No one is. They still have the typical arguments, fights, sassy quips back and forth between a few of them, or all of them, depending on the day or circumstances...but, such is life with siblings. That is not what my blog title refers to though. In our family, there is another kind of sibling rivalry that exists.<br />
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People often ask how many times a day I work with Meagan... or what her therapy schedule is like at home...etc. Well the honest answer is... I don't know, and she doesn't have one. Not that she doesn't go to appointments, therapy sessions, school, etc... but she's also not a robot. She's a person - her own little person, and we decided long ago we weren't going to schedule out her life from working on one thing to the next. And I'm also a mom to four other girls and run a household - so logically and realistically, I cannot dedicate every waking hour at home to making Meagan work at something. Some days, do I help her practice her walking, or other things she needs to work on? Absolutely. Of course. Is it everyday? No. Is it every week? No. There has to be a balance. She's a kid - and kids love playtime and freetime. Her sisters love their playtime and freetime. Megs should get that too. But I have noticed an exception.<br />
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The little exception, if you will, is that Meagan's sisters often use their freetime to work with Meagan... so she gets a little extra "help" anyway. It's not structured like her therapy sessions, and not as taxing as when I am helping Meagan do something, but through play and pretending and being silly that Meagan gains a whole new set of skills. I see them drawn to her by some intangible force and they constantly want to share with her. Make her laugh. Read to her. They have always been her extra caregivers.<br />
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With Meagan passing the 3 1/2 mark, we have seen changes in her that prompt a bit of frustration. In certain cognitive areas, she's almost on par, but in physical, adaptive, and other cognitive areas, she's quite behind - so she's starting to reach a point where she's almost "fighting" herself. In some ways it's good - because that is what gives her the drive and determination she needs. In other ways, it's not because she is more aware of what she wants to do - but realizing she just can't. During this transition in Meagn, I have also seen he girls ever so slightly change their approach with her. Instead of doing everything <i>for</i> her, they are almost prompting her to try things herself. This isn't always successful of course - they know Meagan's limitations - however what I love seeing is that the older girls never ever tell Meagan about her limitations. If she truly cannot do something, and is expressing frustration, I have watched the older girls distract her with compliments while they do something just enough where Meagan can finish the job. <br />
I saw Kaitlin one night in the kitchen helping Meagan remove her shoes. Meagan so badly wanted to take off her socks on her own, but her hands just aren't strong enough or coordinated enough to do so. As I watched, I was really impressed how Kaitlin kept asking if she was allowed to help (respecting Meagan's will to be independent), and then helped in small bits so Meagan had a sense of accomplishment. After the shoes and socks were off, Meagan even wanted to put her AFO's in the shoe cabinet (where the girls store their shoes), just like her sisters. <br />
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Over the last few months, with Meagan staying out of the hospital, and starting to thrive at school, I have really enjoyed watching the girls find creative ways to help Meagan feel as though she's also growing up - becoming a big girl - and starting to have a little independence. We were leaving the PSR office one day at our parish (religious ed classes), and I was holding Meagan since we just had to run in for a second. When we got in the hallway from the sidewalk, Meagan looked at me and said "I scoot. I do it." She wanted to scoot on the floor. I hesitated at first, but, then went ahead and put her on the floor to let her go along with us - her way. She was happy as a clam scooting down to the office, and as we left, she was perfectly content scooting along the floor with her big sister as we headed toward the exit. It might not be the "norm," but this is how Meagan is feeling some independence. <br />
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As the girls have (unbeknownst to them) worked with Meagan over these last few months, they have been increasingly good at letting Meagan try things herself, encouraging her to do so, or if she can't, making her feel as though she did. Now when the girls read with Meagan, they literally pause after every word so Meagan can repeat it. Meagan told me one night, "Mommy! I reading!" After running up and down the stairs doing laundry I finally planted myself in my room to put some clothes away. Kaitlin came in and sat by the door to read a book. Meagan followed and so it began - word by word, sound by sound, Kaitlin let Meagan "read" her own book. I crouched behind my bed and recorded them - afraid that such a sweet moment would forever slip through my memory if I did not. Kaitlin caught me at the end - but it was incredible to see the joy Meagan had from feeling what it must be like to read her own book.</div>
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The girls have also challenged Meagan physically. With two of them in training for National dance competitions, there is a lot of stretching, dancing, yoga, and core work that is going on in this house. Meagan has started to imitate this. Yes, she's not doing the exercises exactly, but anything we can do to help build up not only her strength, but also her physical confidence is a good thing. By the girls encouraging her to copy their exercises, they are making Meagan trust her body more - and this has allowed her to start working more with her walker and supported standing. </div>
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It has been clear to us from the beginning that Meagan's big sisters were valuable in her life - always loving on her, giving her attention, and yes, spoiling her. But what I didn't anticipate was the ways they would also help her grow. The ways that although she may be behind in things, they still treat her like she's a big girl. The methods they are able to create to make her feel like she's not a baby anymore and that she really can grow too, even if at a different rate than her peers. <br />
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I will never forget at a preschool function a child came up and asked Maura about her baby sister. Maura very matter of factly said "She's not a baby. She's almost 4." I have seen this attitude in all of my girls as they continue to live day to day with Meagan. They still love on her, they still give her all the attention in the world, and they still spoil her ..... but I have also noticed they are doing these things diferently now than when she was a baby. I appreciate that in them because sometimes that is one of the biggest challenges of being out and about with Megs - matching people's approach to her with her age rather than her size and abilities. <br />
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I'm sure we will have lots of typical sibling rivalry in our home - especially as we are entering these pre-teen years with some of the older girls. And there will always be the "normal" push and pull of personalities, opinions, and stubborness. But I have a feeling that a different rivalry will keep them all focused and bring them back together each time - the rivalry I have seen develop over the last several months to help Meagan realize the feeling of independence. That competitive spirit the girls have - not against each other, but held in unity for Meagan. That will power that she will do more, even if it's just a little bit of a little something a little at a time. And that fight each and every one of my older girls holds inside to help Meagan realize there's always more, if she wants it. With that kind of sibling rivalry, I know Meagan will feel the most independence and joy possible - and she will have one heck of a team by her side seeing it through.<br />
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<span id="goog_1028835869"></span><span id="goog_1028835870"></span><br />Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com0tag:blogger.com,1999:blog-603106951187087392.post-91827582653189254102015-04-17T15:57:00.000-04:002015-04-17T16:51:04.799-04:00ProofMeagan has been able to do a lot of things her older sisters do at school through her special needs classroom - art, music, playing with friends, learning, and eating in the cafeteria. She also got her very first school photo!<br />
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Meagan's first school picture! </div>
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(Courtesy of: School Pictures of Georgia)</div>
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We are going to order the nice non-watermarked prints of course, but as pointed out by a few friends and family, this marked photo is ironically perfect for Meagan. There is no better word to be prominently displayed across her photo. She is just that. Proof. Proof that doctors can't predict the future. Proof that we shouldn't let best guesses dictate our love for our children. Proof that no matter the odds stacked against someone, no one knows what we are truly capable of. Proof that no matter the abilities, there is always a purpose, a meaning, and a light for every human life that only God can know.</div>
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A few weeks ago, as college basketball came to an end, Meagan was so excited to have a "Go X" shirt just like her sisters. Being that Brian and I are both Xavier alum, we love to pass our love of the school and its basketball program on to our girls. The older girls had helped Meagan make her shirt and on it we had put a quote from one of their favorite seniors, Matt Stainbrook, in which he said "People always talk about underestimating us......."...."but by no means is that us..." He was referring to many of the main sports announcers who almost yearly always discount Xavier basketball to advance in the NCAA tournament despite every talent to do so. It spoke to me so much because I will never forget the day the perinatologist told us that about Meagan. "She won't do much..."...."she will be a burden..."..."it will be too hard on your older four girls..." Despite being grounded in our belief to always give our children a chance at life, those words would make anyone feel sick. Stainbrook's quote seemed the perfect finish to Meagan's homemade Xavier shirt. </div>
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As the NCAA tournament went on, and Xavier finally lost in the Sweet 16, we were so proud of our alma mater. I posted the picture of Meagan and the shirt to congratulate our Xavier team and also thank Matt for such encouraging words, as they had transcended basketball for our family. Fast forward to this week - we had a small snowball of misfortunes come across the family but were at the same time marking 2 1/2 months of Meagan having NO hospital stays or doctor visits which far outshadowed any struggles. A box arrived in the mail and much to our (and our kids') surprise, it was a lovely gift from our Xavier family - and Matt had signed a small basketball for Meagan. She was absolutely elated! She still has not let go of her "Go X ball" and truly appreciated the gift. It brought a huge smile to my face, Brian was surprised and grateful, and our own little basketball team of the 5 girls were so thankful for the sweet gifts. It was proof to me that even across the miles, her story can touch others and inspire joy.</div>
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It was in that moment that I looked at Meagan's picture again and realized my initial thoughts were true. She was living proof of determination, love, and God's grace on earth. I think I will in fact send her picture to my old doctor - but I will make sure he gets a copy with the oh so true watermark right on the front - Proof. </div>
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A sincere thank you from our family to our alma mater for thinking of us. You sure have made our day, and Meagan is just a "little" excited about her special present. </div>
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Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com2tag:blogger.com,1999:blog-603106951187087392.post-9886939965224011572015-03-31T22:09:00.002-04:002015-03-31T22:09:15.437-04:00March Updates Part 2 - Walking TogetherDespite our disastrous family dinner out, we had a few good things happen this weekend. As you all know, Meagan finally got her new AFO's a few weeks ago. They are similar in that they still go to just below her knee, and they are for the most part still rigid - but the one difference is that the PT had the lab make the back of the AFO's with a hinge so Meagan can now flex and point her ankle joint. Her new AFO's also have no tread on the bottom so she must wear shoes with them. The shoes that came with her AFO's are, uh... quite large. They look even bigger since Megs is such a small kid. We refer to them lovingly as the Frankenshoes. Since having Frankenshoes makes it a lot harder for Meagan to walk (because of the sheer weight of them!) we are going to get some much lighter more streamlined shoes to squeeze over her braces. This should help her a bit in picking up her feet.<br />
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A few months ago, we were happy Meagan would finally try her walker. If you remember, before that we spent about 9 months not even being able to go near it or she would scream. "Walker" was pretty much the secret forbidden word around here so we were very happy when Megs finally warmed up to the idea. Since that time, we have been working with her by holding her up with a scarf around her waist so she really doesn't have to do "that" much work, but could get what it felt like to use the walker. We are trying to transition out of that now - taking away some of those things so she gains a little more strength and a little more independence.<br />
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Mrs. M, the PT, decided to start with working on some independent standing. She stood Meagan up in front of her, got her feet planted securely and slowly let go of Megs. As soon as her hands were leaving Meagan's sides, Meagan lost it - completely freaking out, crying, and asking me to hold her. The same thing was happening when we were trying to get her to use the walker on her own. Crying, or just looking scared and asking for her scarf over and over again. Understandably, she probably likes our arms or the scarf because it gives her that security she can actually feel - but it was time for her to try it without that assistance so we can start building her stamina.<br />
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We finally had some success with this on Monday afternoon! Meagan loves rhythm so the girls had gathered in the living room and were telling Meagan "Let's march... march...march..." Typically she will clap along and then want to try a little bit. Well the first attempt didn't go quite as planned. Introducing Meagan's stubborn side:<br />
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After some encouragement and a rest, however, she finally decided to give it a go. Although no scarf, Reilly held under her arms for security - we don't need a face plant on the front of her head where there is no skull. Not good! Step by step Megs tried on her own and made it across our living room! If you notice the girls laughing in the video, it's because they are. One of Meagan's struggles learning with the walker is how to coordinate. She doesn't always get she has to pull it along with her. So in the last week, I have been helping her pull it so it hits her bum, and then she knows it's time to "step, step" forward. Well the girls hadn't seen this yet. So, because the walker was hitting Meagan's bum over and over again as she inched forward, it was naturally hilarious to my elementary school age children. Actually we have found anything having to do with their bums is pretty much the funniest thing on earth. But hey, we roll with it. I mean, why not?</div>
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Meagan's successful run</div>
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Later that same day, Meagan's PT and the representative from the mobility company that made Meagan's wheelchair both came over. Meagan was measure for her own walker. Woohoo. When it comes, she will be able to take it to school and try it in the classroom. Meagan's PT said if we keep working with her, she feels Meagan will be able to be independent in the house and at school with her walker. She said for regular walking or longer distances (malls, a campus, stroll down the street, etc.. ) Megs will most likely need some sort of motorized device (wheelchair..etc.) but hey, that is just fine with us. </div>
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So, despite the quite disastrous start to our weekend (or so I thought), it ended up pretty darn good. Maybe one day, the therapists said, Meagan will be walking together with us. What they don't know is that she already is. There's just no other way to take this journey! </div>
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Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com0tag:blogger.com,1999:blog-603106951187087392.post-37965855251506355152015-03-30T21:47:00.000-04:002015-03-31T04:46:14.273-04:00March Updates Part 1 - Walking outside....This weekend was a happy time for the family. The girls got their third quarter report cards. All A's and lots of great remarks from their teachers across the board. I was so proud of the girls, as was Brian. We decided it would be a great opportunity to do what we normally don't do - go out as a family and celebrate their achievements. It had been a hectic month - things had been stressful, and despite all of it, the girls had been so positive and even better excelled at school. It was time to celebrate.<br />
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We went to a restaurant we have been to before as a family. Just a local place - family friendly, noisy but not too noisy, affordable, and fun for everyone. It was going to be a great night of letting the girls order what they would like, family conversation, and hearing the girls giggle and talk on their special night. Well it didn't exactly turn out that way.<br />
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The funny thing about having a child with brain problems that include pressure issues, sensory issues, and many other things, is that you just never know what will set them off, when they will freak out, and if you will be able to help them through it or not. This weekend, our family dinner was one of those nights for Meagan. She. Just. Flipped. Crying, screaming, asking for the door, wanting to go, wanting to stay, wanting her wheelchair, wanting us to hold her... the list goes on. I knew from the first instant she started crying that there was going to be no calming her. Any special needs parent knows that moment. When it's just done.<br />
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As the dinner went on, she became worse and there was no soothing her. I still have no clue what set her off - if anything - or if it was just one of those "off" nights she has every so many days. In any case, I took her out of her wheelchair and walked outside holding her close as she cried and became increasingly upset. After several minutes, my arms were becoming tired so I went back inside to have Brian take over. He walked outside with her (where she still screamed), and the food arrived. As much as my mind was occupied with Meagan's mood, I acted excited when the girls' food came. I oooh'ed and ahh'ed over the yummy meals they had ordered, helped them get things situated, cut, served, and seasoned as needed, and then gave them happy smiles as they dove into their special meals. As soon as they were settled, I walked to the front of the restaurant where Brian was still standing with a screaming Meagan and took her so he could go eat. He insisted I sit down and enjoy with the kids, but, knowing he has less quality time with them during the week, and considering all of his hard working hours as of late, I insisted right back that he go enjoy a hot meal and fun chatter with his daughters. He handed Meagan to me and went to eat. I proceeded to ask Meagan "Are you scared?".... "Are you hurting?" .... "Are you tired?".... "Are you hungry?".... to every question was a repeated answer of what I had just asked ..."yes I ______" Basically, I had no clue what was bothering her. And she couldn't help me because she couldn't answer my questions.<br />
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After a short while, Brian came out and took Meagan so I could go back in. He pushed Meagan's empty wheelchair, carrying her crying all the way and headed to the car. I ordered boxes for my portion of the meal, settled the check, and took the girls to the restroom. We walked outside and made our way to the van. I was so happy the girls got a special dinner out, but at the same time, it was one of those parenting moments where I also felt helpless and emotional. I felt so terribly they hadn't enjoyed the time with both Brian and myself, that they hadn't had Meagan engaged and enjoying their joy, and that we had to do our family dinner in shifts among the mayhem. But then I heard a little voice from the back of the van.... "Thank you mommy and daddy for our dinner!" It was so joy filled and giggly. I then heard the other girls chime in with "thank you!" and "we had so much fun!" and "Is Meagan ok?"..............<br />
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It was at that moment it was apparent that nothing had been taken from them that night. Sure, in the "normal" lens of life, their dinner was disjointed, interrupted, and fractured. One parent was in and out, Meagan was missing as she was having the sensory meltdown of the month, and the dinner was rushed as we boxed some of our meals to go. What kind of celebration was that for these girls that had been through so much this year, and triumphed with good grades and personal achievement? Apparently, it was a celebration worth thanking us for.... and as the giggles and laughs continued from the back of the car, I realized that for them, it was the perfect celebration.<br />
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It is nothing new for us as parents of four other kids to have walked out of the occasional restaurant, or concert, or other events where sometimes our toddler children acted, well, toddler-like. But now as a parent of a child with brain and sensory issues, this is a much more complex issue. I remember leaving a restaurant with Reilly when she was a young toddler because she was overtired - but - I knew she was overtired. The next time would be better. She would outgrow it. With Meagan it's different. One day she can be wonderful. The next day it seems as though her brain is fighting itself, and there is just no calming her. Or the light is the wrong way in the window and sets her off. Or as much as she loves music, a certain sound rings in her ears just the wrong way and makes her scream. Or someone looks at her in a way she doesn't like. Or we say something to her that typically can be calming, but the next day sends her into the meltdown of all ages. The brain is just so complicated. And so are the consequences of its confusion.<br />
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As the kids woke up the next day talking about their fun dinner out, the memories of my face buried in Meagan's neck with tears of frustration erased. As they chatted about which moment had been their most fun at the restaurant, the frustration of me asking Meagan unanswerable questions calmed. I think the night of me walking outside our family dinner, but still seeing the unending joy on our older girls' faces about their special night out was a reminder that in most ways, they always walk outside. There was nothing detrimental to them about Meagan's behavior, and the fact that Brian and I had to trade off being at the table didn't ruin their night. <br />
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As the weekend subsided we had some pretty amazing things happen in the family. It was almost completely opposite to our family dinner out. But one thing did not change - the girls' joy. They know Meagan and they know our family a lot more than I gave them credit for. They know that not every celebration has to be perfect, and sometimes family dinners are a little different than what others may be used to. But that's ok. Because through all of this, the girls are still joyful. They are thankful. And they are selfless little girls with not one complaint. <br />
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I'm not really sure why we have seen these sensory changes in Megs - but a lot has been happening with her in the last few weeks and we have noticed when she does make strides or grow, her ability to handle input seems to be diminished. We are hoping as the new things she is trying settle out, so will her meltdowns.<br />
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As much as I carry the guilt of those moments I feel seem lost to the older girls, (which I think is natural if you are a parent,) Reilly, Kaitlin, Anna and Maura show me time and again that God has bigger plans. As Meagan screamed throughout their dinner out, I felt helpless strolling outside the restaurant windows wishing we could just be together as a family. I was concerned the girls felt the disjointedness of the evening that was supposed to be their special celebration. But then I looked in. The girls were laughing. Talking. Eating. Enjoying each other and the surroundings of a special night out. They were frankly almost oblivious that I was outside with their screaming sister worrying about their happiness. It was then I realized that walking outside, as frustrating as it can be, doesn't mean being marginalized. It doesn't mean having a <i><b>barrier</b></i> from joy. Walking outside just encourages us to go to the window, gently rub away the fog, and <i><b>find</b></i> the joy. Looking in and watching the girls have such a fun time together helped me do just that. Congratulations to the girls on such great report cards and thank you to Brian for always taking the walk outside with me. <br />
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**** ... Part 2 will follow this week on the exciting weekend events. :)Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com0tag:blogger.com,1999:blog-603106951187087392.post-71130736776078765902015-02-04T12:23:00.001-05:002015-02-05T07:28:02.609-05:00Knots<span style="background-color: white; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px;">In general, knots just aren't a very good thing to have. Knots in your hair - ow. Knots in your jewelry - a pain. Knots in your muscles - painful! But I have learned lately that sometimes, knots are a good thing. </span><br />
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<span style="font-family: Georgia, Times New Roman, Times, serif;"><span style="background-color: white; font-size: 14px;">I came across a quote that really spoke to me lately:</span></span><br />
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<span style="background-color: white; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px;">“When you get to the end of your rope, tie a knot and hold on. Help is on the way.”</span><br />
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<span style="margin: 0px; outline: 0px; padding: 0px;"><span style="font-family: Georgia, Times New Roman, Times, serif;"><span style="font-size: 14px;"> I think of our path in life as a long rope - it may be straight at times, or may have curves, but there are also times where the rope seems to become severed. We can see the other side, but have no clue how we will get there. How do we jump across a path that has been so connected, and then becomes interrupted? How can we make the end of that part of the rope that is cut and frayed stronger so we can pull and stretch to reach the next section of our journey? Th en I remembered the quote I had seen. The extreme visualization that comes along with the words was the perfect answer - knots.</span></span></span><br />
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<span style="margin: 0px; outline: 0px; padding: 0px;"><span style="font-family: Georgia, Times New Roman, Times, serif;"><span style="font-size: 14px;"> With everything going on in the last several months, not to mention, last several years, I have realized that the little knots that have occured in the straight rope that is our path in life have actually been positive things. For me, these knots come in many forms. Physical - the friends that have stepped up to help us get kids from carpool, or the bus, or to and from activities when Meagan has had emergencies. Emotional - friends and family who have called, visited, or written to check up on us and on Megs. And sometimes, those who just ask "how are you?" Financial - that music job that calls up and hires me right when we have a bill due... or the unexpected refund check that arrives in the mail just before our account goes to zero. Spiritual - the many prayers and special novenas that our faithful family and friends have offered on our behalf and for Meagan's well being and our health as a family. All of these wonderful strong ties have given us the knots necessary to hang on, and keep moving forward. All of these knots have proven the ever presence of God and His ability to always look out for us - no matter how that may come about. Help is always on the way with Him. </span></span></span><br />
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<span style="margin: 0px; outline: 0px; padding: 0px;"><span style="font-family: Georgia, Times New Roman, Times, serif;"><span style="font-size: 14px;">I had a friend approach me a little while ago wanting to do a fundraiser for Meagan. Realizing our situation, I was very tempted to say yes immediately, but, I also am a very stubborn person. I realized while things were trying, and we were clinging to our "knots," there were also a lot worse things and I couldn't bring myself to agree. One of my many weaknesses is having a hard time accepting help from others - I consider myself a caregiver and a multitasker - always on top of things... so when help is offered, my first reaction is always "no thank you." </span></span></span><br />
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<span style="margin: 0px; outline: 0px; padding: 0px;"><span style="font-family: Georgia, Times New Roman, Times, serif;"><span style="font-size: 14px;">A few weeks later, and my dear friend asked again - she insisted. She's as stubborn as I am, so I knew that she wasn't going to back down. Her persistence made me take a step back and seriously consider it. Perhaps this was another path God was showing me? Perhaps my stubbornness was actually blocking the next knot that would help us reach the others side. After much self reflection, and coming to terms with the multitude of frayed areas in our rope, I decided to accept. I had a twist for her, though. The only way I would accept her doing a fundraiser for Meagan is if she let a good portion of the proceeds towards a charity of my choice. She gladly obliged. The charity I chose is CURE... many of you are familiar with this charity, or at least have heard of me mention it before, but in case you forgot, here is a very telling video:</span></span></span><br />
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<span style="font-family: Georgia, Times New Roman, Times, serif;"><span style="font-size: 14px;"><a href="https://www.youtube.com/watch?v=WludJKekTpo"><b>Uganda River Video</b></a></span></span></div>
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<span style="font-size: 14px; margin: 0px; outline: 0px; padding: 0px;"><span style="font-family: Georgia, Times New Roman, Times, serif;">The fundraiser has been a wonderful opportunity for us to pay it forward and give to other children who don't have the medical access that Meagan does. I'm glad I could think it through and set aside my pride to participate in such a wonderful event. The funds that will go to CURE Hydrocephalus offer children the life saving surgeries that we have been so lucky to have had for Meagan every time she has an emergency. The funds to CURE will give children with Meagan's same condition the knots they need to hold on and get to the next part of their journey. </span></span></div>
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<span style="font-size: 14px; margin: 0px; outline: 0px; padding: 0px;"><span style="font-family: Georgia, Times New Roman, Times, serif;">Some people have asked us why don't we use all the money for our own bills and struggles in caring for Meagan. It is tempting, don't get me wrong! We all know the relief from getting rid of financial stress. However, if we can even help one child who needs surgery or treatment, that is going to be a much better feeling from a much better action. I'm a firm believer in giving more than we have, and taking only what we need. And even in Meagan's fundraiser, I am staying true to that belief. And I will be stubborn about that. :) </span></span></div>
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<span style="font-size: 14px; margin: 0px; outline: 0px; padding: 0px;"><span style="font-family: Georgia, Times New Roman, Times, serif;"> We want to extend a heartfelt to all our family, friends, and even strangers that have participated so far. If you know of anyone who may still be interested, you may pass on the link below. Thank you again to everyone for the knots in our rope - the thoughts, conversations, support, and especially prayers mean so much to us.</span></span></div>
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<span style="margin: 0px; outline: 0px; padding: 0px;"><span style="font-family: Georgia, Times New Roman, Times, serif;"><b><a href="https://www.youniqueproducts.com/RachelThompson/party/1328646/view">Meagan's Hydro Fundraising Party</a></b></span></span></div>
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<span style="margin: 0px; outline: 0px; padding: 0px;"><span style="font-family: Georgia, Times New Roman, Times, serif;"><span style="font-size: 14px;"> <i>If you aren't interested in the product or Meagan's fundraiser, but would be interested in donating directly to CURE, you can click</i></span><i> <a href="http://www.cure.org/me/meagan">HERE</a> . </i></span></span></div>
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Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com0tag:blogger.com,1999:blog-603106951187087392.post-76990389136916361392015-01-29T13:34:00.000-05:002015-01-29T13:34:04.223-05:00I'm Not Sorry<div>
I was trying to look up some new quotes to use in a blog about loving our children. I decided to drop a few terms into Google and see what came up. Below are some of the first results I read:</div>
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<i>"Experts say you should never hit your children in anger. When is it a good time? When you are feeling festive?"</i></div>
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<i>"When children are doing nothing, they are doing mischief"</i></div>
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<i>"The first half of our life is ruined by parents....the second half by children."</i></div>
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<i>"The trouble with children is that they're not returnable."</i></div>
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Now anyone who knows me, knows I also have a hilarious side to my personality. I have a great sense of humor, and can be sarcastic to a fault - yes, even about my own kids, especially on "those days." And those are some pretty funny quotes. However, in light of a few events over the last few weeks, it made me think..... All kidding aside, why is the default reaction to children and motherhood one of sarcasm and dismissal? I find this true with special needs as well. </div>
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If anyone knows about bad days with the kids, I certainly do. There are days my oldest has an emotional meltdown, while my second wants to constantly run off energy but it's rainy outside. The middle one is wanting attention and doesn't know how to speak in an 'inside voice,' and my 5 year old feels that with all this going on, it is perfect timing to do something destructive, preferably something that takes a long time to clean up. Meanwhile, Meagan is fussy or having a seizure day and wants to be held, or the dog needs to be fed and let out, and dinner still has to be fixed, among 500 other things that have to be put on hold. Even more challenging is when these things happen in public - when some of the girls are fighting while others aren't listening etc etc... If you are a parent out there, you totally get this. And kids just have the best timing don't they? ha...<br />
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However, there is always 'someone' who feels the need to approach us and say "Wow, you must want to run away!." But the worst is when I get questions about Meagan specifically. To clarify, I <i><b>love </b></i>questions about Meagan and talking about her or educating others on how amazing she and her friends are. And typically, I see people leave from talking to us with a much more open heart and mind and it's a wonderful conversation. What I mean by 'Meagan questions' being 'the worst' is when the reaction is one of pity or sadness. This just happened at Target last week when a woman asked about Meagan's age and after I said "3 1/2," proceeded to ask about her small size, leg braces etc... I dutifully and kindly explained in general about Meagan's life and after answering a few questions, the woman's response was "Wow I'm sorry you have to deal with that all the time!" and "Oh I am so so sorry for her. Poor child." I really didn't know what to say, so I smiled and we parted ways. I am sure the lady is a very nice woman - but...... she didn't get it.<br />
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Last week, we took the girls down to the dance studio to practice. While the older four girls were reviewing their steps for their upcoming competition, Meagan was scooting around the other studio checking things out. She was giggling and singing to herself, but then I noticed she was rather quiet. When I looked into the room, I saw her just sitting there staring. She was looking at herself in the mirror. She just kept staring and then started doing things and watching her reflection perfectly mimic her actions. She brushed her hair out of her eyes. She looked at her eyes. She touched her nose, her mouth, and her shirt. Each time carefully watching her reflection do the same. She seemed to almost be filled with wonder at how this was happening. I thought of the people who said they were sorry for her - and immediately felt sorry for them. Here was my little miracle girl looking in wonder at every beautiful part of her. Oh what those people are missing.<br />
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In the last week, we have remembered the anniversary of Roe v. Wade and within days also had the International Day of Acceptance. Before Meagan, of course, I was not as aware of the latter - but since her birth, I have learned a lot about it and how important it is. I am also realizing how appropriate it is that the two days are so close to each other. They almost go hand in hand. How can we accept diversity in our children when we accept it's ok to discard them? How can we celebrate differences when mothers are counseled that differences during pregnancy are "sad," "wrong," or "just too hard to deal with...".... <br />
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I guess when I think about it that way, the comments of pity about Meagan or downing our busy life with our beautiful kids are not that out of place. We breed those mentalities in our society. We shape people to value life.....selectively. We have moved child bearing from an honorable thing to a check off the to do list. We have taken the blessings of our differences and used the knowledge to weed those out who would offer diversity in our world. <br />
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We can change that, however. Through kids like Meagan, we can learn so much. Differences can be challenging. No one denies that. They can even be scary. And that's ok. We are all human - we aren't perfect. But we are also beings of learning. We can take the intimidating nature of diversity and turn it in to something wonderful. Something beautiful. And by doing that, something familiar. Every time we do that, the next step isn't as hard....and so it continues. This happens within our own families, but then spreads to our extended family, our close friends, and then eventually to those strangers who see us at the store or school. <br />
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I have seen this happen in several areas of our life, including at my older girls' activities. I am helping teach at a few classes at the dance studio now. Typically while I am teaching, other dance mom friends will play with Meagan and watch her for me. Last night, I came out and Meagan was so tired. She was curled up on my friend's lap and very snuggly. She was all cozy in her sweater, looked up at me, then buried her head in my friend's chest, and then fell asleep. Meagan physically resting so comfortably on my friend was a perfect depiction of how we feel as a family - with the ability to "rest comfortably" in the friendships of so many near us who have not only had open hearts and accepted Meagan's differences, but who go the distance when we need that little bit of support. Friends who don't bat an eyelash at helping her......who don't hesitate to help us. Meagan's differences have actually brought our family togetherness with so many special people who have enriched our lives in many ways. That's something the doctors won't tell you.<br />
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One of the most beautiful things I have seen is how love from Meagan spreads through the community.....well beyond blood relatives who almost have the "obligation" to love her.... in to many hearts of friends, acquaintances and even strangers who never anticipated what was about to happen. I have loved watching close friends become almost 'pseudo parents' to her if I am busy with one of the other girls, or teaching a class. There is no hesitation to scoop Meagan up and just love on her. Seeing her big twinkling eyes and her sparkling personality, it's almost impossible to resist being drawn to her. So, to the woman at Target, (who I'm sure is truly a lovely person), I guess my answer is, I'm not sorry. I'm not sorry Meagan came into our big, loud and loving family. I'm not sorry my daughter has some challenges she has to work through. I'm not sorry life is hard. But I <i>am</i> sorry that you won't see what our close friends see. I am sorry you won't get to enjoy Meagan's beaming smile or her absolutely hilarious personality. I'm sorry you won't feel the warmth of her little body sleeping in peace on your lap. Most of all, I am sorry that her differences brought on a judgement of pity for Meagan instead of the realization of joy in Meagan's soul. <br />
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As Mother Teresa said, <i><b>"If you judge people, you have no time to love them."</b></i><br />
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Whether in the womb, or in the store, I'm hopeful that through kids like Meagan, there will be more love and less judgement for children with disabilities. I'm hoping that as time goes on, and we have more people exposed to the wonderful differences these children offer, my internet search on quotes about children will change to more positive results. More awe at their little beings. And more acceptance of all children, no matter how they arrive. <br />
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Let's send messages of love and acceptance, for mothers who may be facing a difficult prenatal diagnosis, and for mothers who have children already here facing different challenges day to day. Perhaps one day differences won't be feared, but welcomed. Let's give all children a chance to look in the mirror as Meagan did, and marvel at the wonder of their God given reflection. After all, children are the living messengers we will send to a time we will not see. How can we send them if we do not accept them from the start?<br />
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*****If you would like to do something tangible to "pay it forward" and honor life to help other children like Meagan, her webpage at CURE Hydrocephalus is still up. Any donation is greatly appreciated by families around the world who do not have access to the education and medical interventions that Meagan does here in our great country. Thanks! <a href="http://www.cure.org/me/meagan">www.cure.org/me/meagan</a> ****</div>
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Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com0tag:blogger.com,1999:blog-603106951187087392.post-66793887020918218912015-01-20T00:08:00.007-05:002015-01-20T00:08:53.616-05:00Oh The Places She'll Go....<div class="separator" style="clear: both; text-align: center;">
<b><i>"Being optimistic isn't always being happy.. it's taking what the world throws at you and saying "I'm not going to let this get me down."</i></b></div>
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We have had quite a week. The van, as you know, had to be taken in to be fixed. After a complete cluster of problems, we finally got it towed and to the collision center. After a mess of other issues, it seemed to be on the way to being fixed. However, the mechanic called us (who we have worked with several times in previous years for other things) and said that Honda had actually sent him all the wrong parts so he would have to wait until they sent him the correct parts which meant he would now be delayed until later this week. When I called today to check, Honda had sent only a few of the parts and one that had to be painted, was not. So now we will have to wait for that part to be painted before it is installed... more delays. Meanwhile we were on day 8 of a rental minivan and I had to call Avis to make sure we could extend. Luckily the employee was extremely nice and worked really hard to find us whatever deals he could so we could get the lowest rate possible for the extra days. It's a good thing I didn't think we were out of the woods yet because we woke up to a flooded downstairs bathroom and basement/garage. The main floor bathroom and the basement apparently were the victim of a backed up pipe that was laid improperly under the driveway and is now starting to act up. It is going to be a big project to fix (digging up driveway, other drains, a tree and our basketball hoop) so for now we are just having a plumber come out to clean everything out through the line, and we will have to tackle the long term solution at a later date. It's been stressful with the car and now water issues - a few doctor appointments had to be missed, I have had to call out of some of my teaching days, etc..etc.. I actually did end up laughing at all of this because the more I contemplated everything that has hit our family over the last few months, I thought about how unbelievable it all sounds. But trust me - you can't make this stuff up. :)</div>
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Meagan thinks it's been pretty crazy around here!</div>
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Despite all the setbacks, we still have had to tackle some appointments and obligations and we have a lot to report!</div>
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<b><u>School:</u></b> The older girls got their first report cards from their new school. Happy news all around. Mostly straight A's, improvements in a few subjects where they had been lacking instruction previously, and even better, wonderful personal comments from each of the girls' teachers on each report card. </div>
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Meagan is also thriving back at school. She is bringing home art projects and notes about her daily "jobs" at school. Last week she made a snowflake picture. The teacher said the other little girl in the class (who is a bit older than Meagan) loves to pair up with her and help Megs with her projects. I love hearing how Meagan is not only making friends, but learning how to work well with others (that aren't her sisters). It was also special because another hydro mom (Parker's mom) always has referred to the hydro kids as 'snowflakes' in the past - each unique and different, but each so beautiful. I loved that Meagan came home with a snowflake picture. </div>
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<b><u>Neurosurgery Update:</u></b> Meagan had her follow up appointment to get her staples removed and to go over everything with Dr. R since he had been away during her Christmas/New Years issues. Meagan was a little nervous at first, but she is getting a lot better about going to certain doctor offices. When we walked in, she said hi to the front desk staff. Then, the waiting room TV started to play Frozen... well that was it. She was in heaven! She scooted over to the little kids' table they have and said "Mama com'ere!!" I went over and placed her in the little chair and that's where she sat while we waited. Perfectly content. Perfectly happy. Frozen was on, she had a Frozen dress on, and had listened to Frozen music in the car. Her day was made. </div>
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We saw the nurse first who removed Meagan's staples. It went very smoothly, but I did feel badly because the incision on her neck is still so tender. Luckily, the nurse was able to move really fast so Meagan was in minimal pain for minimal time. Soon after, Dr. R's PA "Elsa" Blaire came in. Meagan gave her a big hug and snuggled with her for a few minutes. She showed Blaire some pictures and videos of what she had been up to lately. Dr. R came in and went over briefly what had unfolded with Megs over Christmas. He was very happy with her incision sites and how Meagan looked overall. He felt her defects were at a good balance, and Meagan's mood was obviously great. Meagan got a little shy when he asked her to sing him a song, burying her face into my shoulder (ha), but she perked up again and gave Dr. R a high five before he left the room. We made a tenative repeat scan and appointment for July (and we hope Meagan sticks to that schedule!).</div>
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<b><u>PT News: </u></b>In PT, Meagan has been making some good strides in being comfortable with her walker. It took months for her to even approach it without screaming, as you remember, and now she is comfortable enough to try it with assistance, and then recently has pulled herself to stand in it. Her determination in her mind is definitely a little ahead of her body. She has tried many times to use the walker on her own, but she is actually still quite unstable in her hips and lower legs. She managed a step and then would twist, collapse, fall, or go face first into the carpet. The good news is none of this has frustrated her to the point of not trying anymore, but the reality news is her legs/lower body just aren't "there yet" for her to use it on her own. The PT came up with a great idea to help balance this - we took one of my really soft Irish scarves and looped it around Meagan's torso, just under her arms. We hold the end of the scarf to lift some of her body weight and be the "balance control" while Meagan manages the walker and wahlah! We are able to help her use it as independently as possible right now. With the scarf "harness," she will spend a good 5 minutes trying her walker. She is fairly good about telling me when she's finished because she will either just stop and be breathing heavily (it's quite a workout for her!), or she will say "scarf off," or "no scarf"... which tells me "hey mom, I am so done. Get me out of this thing." I'm glad Mrs. M (the PT) came up with this idea because any straps or harnesses are defiantly rejected by Meagan through screams, resistance, and basically giving up on the task at hand - so the scarf seems like a happy medium to let her use the walker and practice, but also give her the assistance she needs right now to actually walk in it as much as she wants. </div>
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<b><u>Orthotics news:</u></b> Meagan got fitted for her new AFO's today. (we will reveal her new color pattern when they actually arrive). This time, there will be no tread and there will be a screw at the ankle joint to allow her some ankle movement when she stands or uses her walker. Mrs. M is hoping that this helps with her balance because being able to access that ankle joint could give her a little more help in catching herself if she feels like she's going to fall over. Mr. Terry (the orthotics tech) should call us when they come in and then we will go for her final fitting and get to bring them home! One thing that will be new with her upcoming AFO's is wearing shoes. With her current AFO's, Meagan has the tread on the bottom, so no shoes were worn with them. This was done because of her weak legs and the fact that she couldn't lift her leg with an AFO and a shoe on. Of course she has gained some strength so Mrs. M is putting her in to regular AFO's now and so Meagan will need shoes. Meagan does not like shoes. At all! She loves admiring others' shoes, but she cannot stand having shoes on her own feet. Complete sensory melt down. So we decided while we are waiting for her new AFO's and shoes, we want to tackle this as best we can. We went to look at shoes with Meagan on numerous occasions and none would do. If you were ever shopping anywhere in North Georgia, you could probably hear Meagan's blood curdling screams coming from the stores we visited. She was fine... I was (God forbid)...trying a shoe on her foot. (**insert eyeroll here**) So we continued onward. One day at the store, we once again were trying shoes. I had to find something she would wear for fun here and there so shoes weren't her arch nemisis by the time her new AFO's came in. We had just tried on a pair (with the same screaming result) when Meagan looked at the shelf and pointed at something. "Ms. Emma shoes," she said. Total confusion on my part. "What?" I asked her. She said "Ms. Emma shoes....".... then I looked and it dawned on me ... one of the Irish dance teachers has always commented on these cute leopard print pants Meagan wears. The shoes... yep, they were leopard print. Piggybacking on her reference to dance, I made a big deal about how they were shoes just like "Ms. Emma" and how we should try them on. A few tears, but no screaming. Score! So now we have some "fun" shoes to wear so we can try to desensitize some of Meagan's fears/aversions to wearing shoes. Although something tells me when her AFO's do come in, she will be demanding "leopard shoes" or "Ms. Emma shoes" to go over them... sorry kid... the AFO shoes do not come in leopard. </div>
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We have had so many little "victories" over the last week, that you would think one of the many negative "events" would have put such a damper on it all. But when I see my older girls happy and thriving, and I see Meagan having come so far with all the battles she's had to fight - the car, the house, the bills - they just don't matter. They are certainly setbacks, and that's a fact. But if it's a fact, then why lament over it. The other facts of the week are much more fun and joyous to focus on, and that's what makes the journey so much sweeter. As they say, "w<span style="text-align: center;">hen everything feels like an uphill struggle, just think of the view from the top." I would say we are on a steep uphill grade at the moment (ha), but I think of what that part of a mountain trail is like. It's hard, it's steep, and you can't really see the top yet - but - you can see glimmers. Those bright glimmers of sunshine that come through the trees and almost blind you momentarily as you huff and puff up the trail. We have had several of those glimmers this week, so I know the full view at the top is going to be amazing. For now, though, the glimmers are plenty to keep us going. </span></div>
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<span style="text-align: center;">I find it rather fitting that I sat down to write this post today when we celebrate the legacy of Dr. Martin Luther King Jr. One of his famous quotes certainly spoke to me this week, and I believe speaks to Meagan's journey every step of the way...especially in the times where it seems a bit challenging..... </span></div>
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<span style="text-align: center;"><b><i>"If you can't fly, then run. If you can't run, then walk. If you can't walk, then crawl, but whatever you do, you have to keep moving forward."</i></b></span></div>
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<span style="text-align: center;">And if Meagan has her way, moving forward is just what we're going to do! </span></div>
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Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com0tag:blogger.com,1999:blog-603106951187087392.post-63602010546374974212015-01-10T19:57:00.000-05:002015-01-10T20:09:49.243-05:00UnhingedWhen we got home from the store this morning, I was getting the kids out of the van. I needed to get the groceries upstairs and get ready for a few students I had coming for lessons. The kids got out, I got Meagan, and I pushed the buttons to slide our van doors closed. The left door slid closed and latched. The right door started to and then I heard a big noise....and within just a few seconds I noticed our sliding door was no more - it was literally hanging off of our van by a wire. Seriously?? My first thought was disbelief - did that really just happen? I had just been talking to my husband about how we were finally almost finished paying off the van and could breathe a little bit with car payments at least... with the van pushing 180,000 miles, I had voiced how nice it would be to be payment free for a little while and then hopefully trade it in for a newer used van later this year..... Oops. I supposed I should keep my mouth shut from now on.<br />
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It's funny how something literally coming unhinged can make me think how unhinged our own life has been over the last month. There has been quite a lot (especially emotionally and financially) going on! But the events of this last week have me on cloud 9. Meagan has been bouncing back wonderfully. Her speech has slowly but surely been returning and we have had no issues with her incision this time (thankfully.) She has been thriving back at school - proud of her new Frozen back pack and enjoying the time with her friends. She had great OT and PT sessions this week - Meagan chose "table wiper" as her job on the chore chart, so the therapists were able to come work with her and help her complete her jobs in the classroom. The only time Meagan cried was in the mornings going to the bus - but it had nothing to do with the bus. What was wrong? Meagan had to wear a hat to school. It was below freezing out so I had to put hats on her. Meagan hates hats. She has always disliked things on her head, (and I can't say I blame her), but she really needed the hats. I decided this was one sensory thing we had to tackle and sooner than later since colder temperatures were in the forecast. When she came home from school, I left our hat/gloves basket out in the hallway in hopes Meagan would play with them at her leisure and would find one she liked. Sure enough within a day or so, I heard a bunch of noise in the hallway as I washed dishes in the kitchen. I sneaked into the hallway to see and there she was - having torn the whole basket apart and she even had a hat on her head. A Browns hat too! (Daddy would have been proud.) So we will see what next week brings and if we have a little better luck with wearing hats onto the bus. <br />
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Loving her new backpack</div>
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Hats are fun now... right!?</div>
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Ready to wear her new little ghillies to her sisters' dance class!</div>
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Meagan also had a neurology follow up on Thursday morning. I giggled as we waited in the waiting room - she insisted on looking at a "book" but all they had was a basket of grown up magazines. Still, Meagan was adamant about holding one, so I grabbed one for her - as she sat there flipping through the pages I was just enamored with how "grown up" she suddenly looked. We looked through the pages of ads and pictures before she was called back. She seemed especially interested in the Rolex ad page (perhaps an influence of Uncle Brad?) When we got back to the exam room, Dr. F couldn't have been more pleased. He was shocked how happy she was so soon off a hospital stay and was very proud of all her progress over the last year. Meagan was very compliant and did a great job at her check up. She even gave him a fist bump on the way out. She's come a long way from screaming through every doctor appointment.<br />
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Loving the Rolex ad... she better get a good job!</div>
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We of course got Meagan back to her usual therapy regimen at home as well. Mrs. M started to come back for regular appointments and get Meagan back on track. We have a lot of news to report! As you remember, before Christmas Meagan was finally getting comfortable with her walker. She wasn't afraid of it anymore and would actually let us help her stand with it. Mrs. M was happy with Meagan's progress so she said Meagan is ready for her next set of AFO's ! She wants her to have some custom made so she gets a little articulation in her ankles if possible. She originally thought she could move her to SMO's (support only from the ankle down), but after examining Meagan, Mrs. M realized Meagan's lower legs and knees are still extremely weak and wobbly - so still needing the AFO's but hopefully strong enough to start getting some movement through her ankles. I'm really excited for his because as her AFO's are now, she cannot move any of those joints so I will be interested to see what Meagan thinks of her new braces! </div>
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After Mrs. M finished with Meagan, we had a few new goals. First is to get Meagan's new AFO's ordered. Second is to work on independent standing with Meagan - she wants her to get less relaiant on "leaning" and work more on building her core balance to hold her body up on her own. Third was to get up on her walker on her own and stabilize. Within a few minutes of Mrs. M leaving, Meagan was just sitting there staring at her walker. I looked at her and asked "Meagan, do you want to stand up on your walker? Do you want to show me?" She suddenly scooted towards the walker and sat in front of it. She stared at it for about five minutes and then put her hands up on to the handles. I grabbed my phone because it looked like she was going to pull up! The wheels don't have locks, however, so I had to keep one hand on the walker while holding the phone with the other. What I saw next was pure bliss - Meagan reached and struggled and within a few short moments pulled her little body up on to her walker! She looked unsure for a moment so I reminded her to "look for the red" (which refers to her walker handles) ..... as she processed the instructions and moved her hands about to stabilize, I was shocked! She had just pulled herself up onto her walker for the first time. The joy in her face at the end was the only validation needed - she was pretty proud of herself. And rightfully so. </div>
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With all we have gone through in the last month, (Dudley's diagnosis, close family member's diagnosis, Meagan's hospital stays and scares, etc...) what happened with the van this morning seems almost like icing on the cake. I actually did cry about it. But then I laughed. And laughed some more. I'm finding life has a lot of moments like that. Crying and laughing seem to come together sometimes. But I think that's by design. As I sit here on this Saturday, I think how just two weeks ago I was sitting on Meagan's hospital bed holding her....leaning over her seeing her lacking muscle control or speech, seeing her body freak out and not knowing how things would work out. I remember that fear and uncertainty - and seeing her now having come through all that, I can laugh at the van door. It's very inconvenient and certainly not what we need right now, but I can laugh at it. It's just a car. I have learned the time I really need to cry. And I have to say this week I have not had many reasons to do so. </div>
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It's amazing how out of such a snowball of adversity we have been able to have such blessings of happiness paint our life. The craziness of our last several weeks would be enough to let anyone become unhinged - but with so much to be thankful for, we refuse to go down that path. Just as the door hangs by the wire, we cling to the hope that these joys are here for a reason. They are the wire holding us to the body of hope that gets us through almost any challenge - as sad or funny as it may be. I'm so excited to see what comes for Meagan over the next few months. It's amazing watching her transition from a little toddler to a little girl - a very special little girl no doubt.</div>
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Meagan being her silly self reading Uncle Mike's book</div>
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Meagan loves her Mickey/Minnie Mouse number cards</div>
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Fascinated with pancakes</div>
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<b><i>A small favor from Meagan - if you could please go to one of her favorite nurse's websites.. <a href="https://www.facebook.com/CartwrightsPopcorn">HERE</a> .... and like their page it would be wonderful. Nurse Jennifer was the one with Meagan through several of her stays, but most importantly, the nurse who was with us through Meagan's worst night yet. Her quick actions helped us get the on call neurosurgeon there in a timely manner, and her attentiveness has no doubt helped Meagan get where she is today. We would be grateful if you could stop by Nurse Jennifer's facebook page linked above and give it a "like"... and if you love really good popcorn, order some! It's the least we can do for all she helped us with over the last few years and especially two weeks ago. Thank you!!</i></b></div>
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<br />Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com1tag:blogger.com,1999:blog-603106951187087392.post-88187710447295319772015-01-04T20:27:00.001-05:002015-01-04T20:27:02.348-05:00Snowball: Melt into Faith<div class="separator" style="clear: both; text-align: center;">
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Meagan did pretty well through New Years Eve... she was a bit restless but slept on and off. By New Years Day, I decided we needed to be a little more aggressive in waking her up and making her try to be up and about even if she didn't want to be. She was still resistant, but, she seemed less groggy when I did try to wake her up throughout the day. She played a little bit and seemed to show glimpses of herself again, but she still asked to go "goodnight" many times. She still slept a lot. By evening, it was clear that hopefully we were on the mend and could hopefully go home the following day. </div>
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Waking up!</div>
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By later that evening, Meagan started to breathe heavily in her sleep. I started to watch her and she would almost get so asleep she would stop taking a breath for a few seconds, then gasp, breathe heavily, and wake up only to try and fall asleep again. I knew something was up because when she did this last time, we had the events of Saturday night unfold. The nurse suggested we try to wake her up and keep her awake for a bit since her respiratory was falling so low - I agreed. When we tried to wake Meagan up, though, she was resistant. She just didn't wake up. After several minutes of moving her, rubbing her hands and feet, picking her up, and basically disturbing her any way we could, she finally woke up and kept her eyes open. But that's when I noticed the shaking - her eyes were constantly shaking..again. She also was trying to speak to me and once again, just noise. No words. No clarity. Just trying to speak and no success. My radar immediately went up because this is exactly what had happened on Saturday. The nurse came in and called in another nurse who luckily had been there the previous Saturday night and she said exactly what I was thinking "Oh my gosh, this is just like last Saturday." We propped Meagan up, tried to talk to her, yet comfort her at the same time, and I noticed when I lifted her she barely had any head control. She was trying to sit up but could not move her head or arms. At that point, the nurse said she was going to page the on call Neurosurgeon. He of course wanted a repeat CT immediately. We rushed Meagan down to the scan and then waited. In the meantime, we gave Meagan more Motrin for any possible pain, and administered her seizure meds. (she had two seizures upon returning from CT). I kept waiting for the thrashing to start - which was her final symptom the previous Saturday before she was externalized, but luckily, it never started. Over the next several minutes, she seemed to calm down and just rest. Her eyes were still insanely shaky, but her body seemed to relax. She seemed like she wanted to pass out, so I let her. I figured if it was just a "glitch" she needed the rest. Dr. B came by after seeing another emergency and said that since her body seemed to be calming down, he was going to leave her to rest and re-evaluate in the morning. He said on her CT her vents looked smaller so that was good and we would see if she stayed stable through the night. Of course I did push back and question the smaller vents - which is actually NOT something you want in a slit vent kid - but Dr. B wouldn't budge. Since Meagan's vitals were fairly stable and it was obvious he wasn't grasping her condition very well, I decided to let it go and see how she did. I figured if she got terribly bad, he would be paged to come back. If she didn't, then at least we dodged a bullet with another neurosurgeon diving into unknown territory and could talk to Dr. R at Meagan's follow up once he returned. </div>
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Maybe not...wanted to lay down and cover herself with a pillow or sheet!</div>
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I'm not sure if it was just a recovery "hiccup," or a fluid adjustment, or all the prayers I said that night - but thankfully, Meagan woke up the next morning much much better. Her eyes were still shaky, but her other symptoms seem to have subsided. She had speech back and she had regained her head control again. She did look a little puny, but after throwing up twice, she seemed to perk up. Sometimes we will never know what was bugging her, but I was just glad to see her back to "baseline." At that point we decided to really push her to get up in a wheelchair and go play - to see how she did with toys, interacting with others, and if we could get her to eat. </div>
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It was fairly clear we weren't going to get her to eat much at that point - she still looked nauseous. Child Life came in and got us a wheelchair. They helped get her to the playroom where she perked up a little bit. She became interested in the ball and basketball hoop so they wheeled her right in front of it. She started to say "ready...??? go!" and then she would throw the ball in the hoop. After a few times, however, she started to look a little 'green'.... she then threw up a little bit so we decided maybe she had enough basketball. :) We cleaned her up and wheeled her up to the table where Ms. K and Ms. K (yep, two child life specialists whose names begin with K!) brought light up and music toys to the table. Meagan was able to play there a bit more and her stomach seemed to calm down. Before we knew it she was bossing everyone around asking for this toy, or that toy, or getting mad when a toy didn't work the way she thought it did - yep, Megs was on her way back. Ms. K and Ms. K were getting such a kick out of Meagan - when they started laughing at her antics, I knew Meagan was probably on the road to going home. </div>
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Looking a little puny when forced to sit up</div>
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After two pukes, she wanted to play</div>
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After the playroom, we saw "Elsa" Blaire (as Meagan calls Dr. R's PA) and we both decided if she continued to improve, we would be discharged. Then at her follow up, we could talk about any lingering concerns or a few of the episodes Meagan had experienced during her stay. I was comfortable with that and decided it was time to take Meagan downstairs to see if she would eat some food. We made our way downstairs to the cafeteria where she promptly asked for chicken - when Meagan asks for chicken, I know she is starting to feel more herself. It's one of the few solid foods she will eat fairly well and fairly often. I decided to take her up to the lobby to eat because they have small tables just about her size where I could pull up her wheelchair. She was very serious trying to sit up and nibble on some chicken. I was talking to her about the different lights and colors around the lobby and Meagan was being her usual silly and cute self. Next thing I knew, the family that had been sitting next to us approached me - the dad put a bag in Meagan's lap. I looked up and he said "just a little something for your sweet girl." I thought it was so nice - I did tell him it wasn't necessary but he insisted that the gift was for Meagan. Meagan opened the bag and found a little sock monkey inside. She loved it and started to put it next to her in her chair as she continued to eat. I told the dad thank you and thought his little act of kindness was so genuine and sweet. After Meagan was finished eating, we made our way back to her room, sock monkey and all, and started to pack our bags. Meagan lounged in the bed and even snacked on some popcorn - all the while laughing and giggling. It was so good to see those smiles. </div>
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A very serious chicken eater</div>
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All smiles while snacking on some Cartwright's Popcorn </div>
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Meagan's nurse went ahead and removed Meagan's IV so she could get dressed. We packed our bags, and waited for the wagon where we packed all her stuff. I picked Meagan up, and we said our goodbyes. We have a running saying with a lot of the nurses and staff there when we leave in which we say "Hopefully we don't see you for a long time!" We don't mean it in a bad way - but anyone who cares for medical kids, or has a medical kid themselves gets it. We love love love Meagan's caregivers at the hospital - but really, we hope we don't see them for a long time because that means Megs is home with us thriving and doing well. :) </div>
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We have a follow up with Dr. R soon in the coming week to have Meagan's staples removed and chat about the events of the last last few weeks. Of course as soon as Megs got home she was incredibly happy to see her sisters. She just smiled and loved on each and every one of them and melted into their hugs and kisses. She also spent a lot of time getting reacquainted with her dog. He still was in his cone for one more night, so she found it difficult to snuggle him, but she found ways to lean on him, pet him, and just love on him. Unfortunately, we found out from the vet yesterday that we are probably looking at an 8 month window give or take with our sweet dog. So seeing Meagan giving him so much love made me happy - with all she's been through, she must know more than anyone to never take a moment for granted. She truly lives for every wonderful moment she has - she doesn't know any different. I love that about her because she reminds me how new and fresh every moment really is and how important it is to enjoy them to the fullest.</div>
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Meagan snuggling her puppy</div>
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We are hoping we have a long stay at home this time with Meagan. She is so complex that this last trial has really taught me how wonderful Meagan's long term providers really are. A very special thank you to the neuro floor nurses and techs - you know Meagan just about as well as we do and it is such a comfort when we are in hospital to have you at our side. Thank you to the Child Life specialists - you go out of your way to always bring Meagan something special to help her stay be as "fun" as it can be and help us to get her back to her "normal" so she can have a successful transition home. And finally thank you to Meagan's neurosurgery team - of course Dr. R for her long term management (which goes without saying), but also to the two Dr. B's and Dr. S and Dr. M who all helped us manage her case during these last two consecutive stays. We fully understand it is not easy to jump into any case, but especially a little complex miracle like Meagan and we appreciate you sticking with us, listening to us, and most of all, working with us to try and tackle what was best for her when Dr. R was out of town. </div>
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Meagan back to her goofy self - it's what makes her so infectious!</div>
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Anytime Meagan has problems arise, it is always concerning and worrisome - but having problems arise with her usual trusted surgeon out of town was especially nerve wracking. It was more of a test of our faith because the one person we trust most with her here was absent. But then that's what faith is, right? Trusting even when we don't exactly see what the plan is - believing even when we don't know the outcome, and giving our worries to Him when we are in an unfamiliar situation. At times over the last few weeks, Meagan felt so far from me. The night she was the worst I had ever seen, I honestly was at a loss - it was the first time I felt fearful for the outcome. We were so far from an answer, Dr. R was so far from her, and I felt far from grasping what was going on. But then, as St. Monica said, "<i>Nothing</i> is far from God." If nothing is far from God, then He is not far from us. Which means our faith is there always to get us through. I have learned in the last few weeks that when the snowball starts to build, we can conquer it through faith. We may not have the answers ourselves, but by melting into our faith, God will provide the clarity, the comfort, and the peace we need to see it through.</div>
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From our family to yours - we wish all Meagan's family, friends, and followers a happy and healthy New Year......</div>
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<span style="background-color: white; text-align: start;"><i><b>"We are at Jesus' disposal. If he wants you to be sick in bed, if he wants you to proclaim His work in the street, if he wants you to clean the toilets all day, that's all right, everything is all right. We must say, "I belong to you. You can do whatever you like." And this ..is our strength, and this is the joy of the Lord." -- Mother Teresa</b></i></span></div>
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<br />Molly and Brianhttp://www.blogger.com/profile/12628604964813380274noreply@blogger.com0