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.
I'm sure we have all been there. I know I have. That moment when I just want to stop. It's just "too hard." Giving up seems so much easier in those moments. It may be something as "silly" as a tough work out or a hard math test.... or things more grave like fighting an illness or dealing with a serious family situation. Silly or serious, we are all human... and those moments of weakness are oh so trying, and a true test of our resilience.
We have now had Meagan's gait trainer three weeks. She still screams and cries every time we put her in it, but she still tries. She's doing really well since surgery, but gait trainer time is definitely her worst part of the day - she absolutely hates it. We were worried that all she would do is scream and get nothing out of this with therapy, but in the last few days we have seen a transition. Still tears? Yes. Still upset? Yes. But her focus has shifted. Instead of asking to get out, now she says "See Mommy," or "huggy Mommy".... and works through her crying and whining to put her feet forward one more time. Just one more inch to reach that goal. A few more tries. She still goes. And you can bet when she reaches me, she gets the biggest hug ever. It is in those moments that I realize she's not giving up. It's not even on her radar. She struggles and it's hard. It is tough.....but she has proven tougher, and she pushes through.
I'm pretty sure I will feel like giving up again on something in my life, whether silly or serious. But all I have to do is think of Megs and realize if she's not giving up, neither can I. She amazes me all the time. But most especially in those moments where I know it would just be easier for her to stop. To say "that's enough." And just give up. But as famed author C.S Lewis said, "What saves a man is to take a step. Then another step."
And so that is what Meagan does. One step at a time, I see success through her tears. One step at a time I see a little strength in her weakness. And one step at a time, I see giving up slipping further and further away....and perseverance shining through.
Meagan's arm braces arrived a few weeks ago - but I decided we wouldn't get her fitted yet because she was just about to go in for her surgeries. Now that we are finally post op, we were able to get to Meagan's Ortho and pick up her arm braces.
When we got there, Terry (our ortho guy) tried the braces on Maura first to help Meagan see they wouldn't hurt. It helped a little but Meagan still cried when he put them on her. She just does not like any sort of equipment! She did well though and got used to them quickly. They are actually really cool - almost like arm reinforcements. They aren't stiff like a traditional brace, but they couldn't be too loose either because it wouldn't help stabilize her elbow ligaments. The braces are almost a perfect "in between" support for Meagan. They are stiff enough to support those elbows and prevent any more hyper extension... but they are loose enough where she can still fully bend her elbows if she wants to for crawling, sitting, eating, or playing with toys. The hinges inside are custom made and very cool! Of course Meagan chose pink, so they are very bright. Her body is still so tiny that the first time she put them on, she reminded me of the Hulk.
Trying on Maura first
Meagan's turn!
At first Megs didn't move as much with them - I think just getting used to something on her arms was a bit of a challenge for her. But she didn't fuss that badly either. She just did a lot of sitting and some scooching forward. We enjoyed watching her explore Terry's office the day we picked them up.
Liking her new arms
Later she got much more mobile with them on. It helps her avoid a lot of face-plants when trying to crawl and her scooching is much stronger. With her "Hulk" braces on, she is so much stronger and can use her arms much more effectively. I'm excited to see how this helps facilitate more crawling in the near future. Either way, she sure is cute as the Incredible Pink Hulk. Little tough girl!
This Wednesday, Meagan was finally ready to get her staples out from her surgeries! She was just about 3 weeks post op by then and we had an early morning appointment scheduled with Dr. Reisner. I was fever free (thank goodness) and although not feeling 100% yet, got the all clear from my doctor since I was on the mend to take Megs to the appointment. I did not want to take the other kids, however, as some were still recovering. It was also a very early appointment so luckily our sitter was able to come so Meagan, Brian, and I headed off to Children's.
We arrived in the office and sat in the waiting room. For the first time, Meagan did not cry. She seemed almost comfortable recognizing where she was, looking around at the pictures and looking at the movie. We were called back quickly and as soon as we pushed her wheelchair in to the hallway to go to the room, we saw the little nook where Blair and Dr. R sit during the day in between appointments. Not a second later we hear from Meagan "Hiiii Blair!" Blair looked up and was all smiles. "Hi Meagan!" she said. Meagan was kicking her legs in her chair, putting her head back, and grinning the biggest grin ever. Meagan would whisper "Elsa Blair" over and over as we walked in to the exam room. She was hilarious.
Blair followed us in to the room and brought her little kit with her. She carefully removed all of Meagan's staples from her EVD site and also from her large shunt valve incision. Meagan barely made a peep. She didn't like me stabilizing her head for Blair to work, but she didn't cry or scream or fight. After the staples were removed, Blair just stayed and talked for a minute about how Megs was doing. As she talked to us, instead of taking a seat, or standing in front of us, she stayed there by Megs and just gently rubbed Meagan's hair. Meagan's eyes began to almost close with each stroke, and when Blair would stop she would move her head for her to start again. So Blair would continue, pushing her fingers through Meagan's hair so sweetly and rubbing her head in a caring way as she finished our conversation. I loved that.
A few minutes later, Dr. R came in. He was just beaming when he saw Meagan. Earlier I had forwarded him an email with the video of Meagan crawling. I asked him what he thought of that. He admittedly said he had come off a long day of surgeries and sat down to see the email in his inbox. He was nervous and even asked Blair ahead of time if he should open it - he was so afraid Megs was in trouble or in pain again! My heart ached for his concern and I said "Oops! Next time we will label the emails 'Good News!' or 'Bad News' just for you!" He said he loved watching the video and he could not believe what a different child she was from just a month ago. Not just the physical strength she was getting back and new progress she was making, but her overall look. Healthier, happier, and more at peace. I could not agree more.
We chatted a bit more about Meagan's surgeries, the shunt system he had put in, and how Meagan was doing over all. Dr. R was so happy to hear that Meagan was progressing again, regaining strength in her arms, and stabilizing. Most of all he was glad to hear she was happy.. and pain free. About this time, we heard a tiny voice say "Reisner...peek a boo!" It was the first time I had ever heard her say his name without whispering. We looked over and Meagan had picked up her blanket and was covering her eyes. He looked at her and I said "I think she wants to play peek a boo." Dr. R laughed and said "Where's Meagan?" She playfully pulled her blanket down and smiled. Then again she put it over her eyes again and said "Reisner, peek a boo!" I looked at Meagan and said while smiling "Hey, that's Doctor Reisner to you miss!" Dr. R humbly said "No, that's ok."
Yea, we have seen this before...but we love it.
After a few more episodes of peek a boo, Dr. R continued the neuro exam. With each move, he carefully explained his reflex instruments to Meagan, and would check each arm, leg, and knee, even offering for her to help him. No tears. No crying. No screaming. He even was able to look and examine her incisions and open cranial vault without Meagan doing much more than blinking. Once all was finished, we discussed briefly Meagan's open vault. Dr. R will have to close that up when she is between about 4-5 years old. It is a time we (and Dr. R as well) are not looking forward to mostly because that vault is such an open window in to what is going on in her head. If she has temporary pressure from storms, or a slight clog, or any reason, that vault being open at least gives the pressure a chance to not cause her pain or symptoms since there is room to expand. It also gives us clues about malfunction or things going wrong inside if it gets very tense or bulges. It's an easily seen outside "cheat sheet" almost that will be missed. Dr. R joked that maybe he would close it up the day before he retires. I know what he meant - her having that vault closed will be scary. I told him he'd better not! But we will cross that bridge when we get there. In any case, it is something we will now have to watch that Megs is nearing 3 years old. The time we can leave that area totally open is going to narrow greatly over these next 1-2 years so we will keep it on the radar and make a plan for surgery when appropriate.
Typically, Dr. R said going a full year until Meagan's next follow up would be ok, but Meagan being Meagan, he would prefer to do a shorter follow up. However he said since she's doing so well, six months may be a bit soon, so why don't we split the difference and see him again in nine months. We agreed and the appointment was over! On the way out every office staff said their goodbyes to Meagan and we headed home.
Once we were home, Meagan was right back to her mischievous self. I felt badly she was missing out on a few playmates with Anna and Maura still recovering from strep and pneumonia (yes, it's been quite a few weeks in that department - don't ask! :) ), but she had fun with Reilly and Kaitlin just the same. They played with cars, princesses, and Kaitlin even had Meagan "hiding" on the couch and ottoman when daddy came home telling her to say "shhhh!" before he walked in the door. It was very cute.
The best part of the whole day was realizing that Meagan had made it through an appointment without being upset. Yes, she didn't like certain parts of it, but she never once screamed, cried, or showed fear. She showed trust. For the first time, she was showing complete and utter trust in her most important medical team, and telling them this through her behavior at her follow up. I was so happy to witness this experience because it not only showed possibly some cognitive awareness of what was going on, but, more importantly, an emotional attachment to Dr. R and his team. Somehow she just finally 'knows' they are there for her, will always help her, and love her. (Something Brian and I have known for a long time.)
I'm not sure what Megs will do not seeing Dr. R for 9 months! But we are very "happy" for the reasons behind that! We had a great run from last October to this last February and I'm hopeful we can go a lot longer this time without another hospital stay or more setbacks developing. We are so thankful again for the ingenuity of Dr. R and his team to step back, look at the big picture, and find the solution we have now that has allowed Meagan to blossom again. And, of course, get in to trouble again too. As an almost 3 year old should.......
Excuse the delay of this post - it has been on my mind most of the day and I am now just getting to it late at night. We had a wonderful Fourth of July weekend celebrating our independence and freedoms with our family and friends with parades, good food, fun festivals, and finally a great home cooked meal with good old fashioned driveway sparklers and festive desserts. It was a great day and we really enjoyed every minute of it. All the kids had fun. We enjoyed a visit with my parents. And it was a very patriotic day to remember why we love to live in this great country.
The girls with Nanny and Pop Pop enjoying the parade
That night is when things took a bit of a bad turn. I started to feel achey towards the end of the festivities - I assumed I was just tired and overrun, but as soon as I headed to bed I knew it was definitely illness coming on. By 2 am I was wide awake with a 103 fever and by the way everything hurt so badly, I knew I had come down with the flu. Since Reilly had just overcome pneumonia, I wanted to be sure I wasn't also catching that and so I made a quick trip in to the doctor on Saturday morning. It was the flu, so there was nothing I could do but wait it out. Ugh.
The last 5 days have been pretty miserable - I have basically been in bed or up for only a few seconds when needed and Brian has been a huge help covering all household duties plus his own work - even throwing in a few things like dishes, vacuuming and cleaning my entire car for me top to bottom, inside and out. While I have been down, the girls have done an amazing job helping out as well, especially with Meagan. I would have them coming to ask me for diapers, or what time her feeds were, or if she could have this or that for a snack, and sometimes I would hear them playing with her encouraging her to try to go on her hands or playing games with her to get her moving and "working" a little - things normally I would do not necessarily daily, but enough where it was consistent. The gait trainer is still a struggle so I told them to just forget it for now and we would pick it back up when I felt better. If you ask Meagan "do you want to walk?" (ie: go in her gait trainer)..she fimly says "NO!" so it's something I decided to just forego at the time and let her choose when she feels comfortable enough to do it. There's no hurry. She will do things in her own time.
This afternoon was really the first time I felt human again. Still fever, still aches, and other things going on, but I *hope* this flu is finally on the way out. Brian went back to work and we were all sitting downstairs having some quiet movie time, when Meagan asked to go to bed. Considering the time, it wasn't abnormal. She usually naps mid morning and so I went to pick her up and lay her in her Nap Nanny (she has loved laying in that lately to lounge or nap). I said "ok let's go" and before I knew it, Meagan put her hands on the ground and looked like she was going to crawl to the Nap Nanny. Of course, I grabbed my phone and turned on the video and caught the tail end of it.
Of course we all got excited - I hadn't seen effort like this since the end of February when we started to lose skills and arm strength. We had not even made any progress in PT lately with crawling again - she would fight it, or cry, or would get on all fours but collapse.. etc.. the list goes on. I was shocked how she quite literally, just turned herself over and did it. Just like that.
In true Meagan fashion, as soon as she lay her head down it popped right back up again ready to play. She didn't want to sleep. She wanted to crawl! So we started to "play" with her and see if she would crawl on demand. Each time she went a little longer and with a little more fervor. There is NO denying the sheer grit on this girl's face in this video:
I was so excited I texted family and some close friends throughout the day and knew it would be such an exciting rest of the day. She had been working so hard towards this months ago only to lose it to all quite literally overnight to the problems with her shunt. It is like she literally just had something "click" and picked up where she left off. Meagan kept crawling in spurts throughout the day and then eventually did just lay down and actually fall asleep. I don't blame her... it's really hard work.
This up and down journey since February has really taught me that this whole time while I have had hope for her, (that she would regain what she had lost), it was silly because the whole time, she always had hope within herself. Nothing I can feel for her, matches what she must feel herself on the inside. Meagan just needed time for things to be fixed again, to settle down, to build up lost strength, and then to say "ok, I'm ready" and try again.
As I watched her work today, I was fascinated by the perfect combination of sheer determination, struggle and joy I witnessed in her face. I was thinking about my last several days with the flu - and it was horribly bad! So many nights of tears and literally sleepless pain. I remember just laying in bed and thinking about all Meagan has gone through. I prayed telling God I wanted to offer all of it up for Meagan - I asked Him to please accept my suffering for her specifically since she had been through so much already. Then ..... today happened. Coincidence? Who knows. But I do believe out of suffering comes good. I have seen it happen many times with Megs. And today was no different.
Watching Meagan throughout the day push herself up, crawl a bit, faceplant, and lay there only to push herself up again to do it all over, I realized that she is so much stronger than me, or anyone I know. Through all of her bumps and falls today, there was no crying, no fussing, and no whining. She was just beaming with joy which clouded away any struggle. In her time, she has found her way back. In her time, she will reach for her next goal, whatever that may be. And in her time, she has and will continue to touch so many with the grace in which she does it because of course God knows the perfect time for everything.
I know I have posted before about how Meagan's sisters are so good with her. They really look out for her, help around the house when we are working on therapies or feedings, and are very protective of her. When my 9 year old can explain what hydrocephalus is, my 8 year old can spot a seizure, my almost 7 year old knows terms like "shunt" and "therapy" and my 4 1/2 year old knows what pain looks like in her sister, I have to also remember while this knowledge and understanding will make them better adult citizens, it is also a lot for them to handle. They are just kids too. They also need a special day here and there to just have fun and be their ages without the extra terminology or responsibilities. It doesn't have to be fancy or far away, but just something they will always remember where they were the focus.
Yesterday was one of those days. The day got off to an unfortunate start with Meagan having one of her sleep seizures. Luckily it didn't last over a minute, but, typically when this happens she is very sleepy for the majority of the day. When it was over she was still asleep and stayed that way - and seemed consistent with her pattern that she was going to stay asleep for a while. Since she would probably rest most of the day I knew we were going to stay close to home. The older girls were disappointed we weren't going to go to the playground or run errands as originally planned so I thought it was the perfect opportunity for a little imagination to help distract them and let Meagan rest.
Resting comfortably
By the time all this had transpired it was almost lunch time. The girls had been playing baby dolls and "grown ups" and asked me if it was ok if they put make up on. "Sure!" I said. I told them to get dressed up and we would go to a 'restaurant' in the house for lunch. They all got dressed up, put make up on, and brought their babies to the kitchen. The girl's decided to name the restaurant "R'KAM's" after Reilly, Kaitlin, Anna and Maura. Once they decided on the name, I told them to go wait until we "opened" and made them menus with lunch and drinks detailed inside.
Menus!
Once R'KAM's opened, they came back into the kitchen and were seated. They ordered their drinks and food just like in a real restaurant, waited for their lunches, and then ate together through giggles and conversation. They did everything we would do at a "real" restaurant (ask me for refills, order additional food, take their babies to the restroom..etc.) and seemed to have a great time. I love how they felt so fancy and special.
Checking out the menu
Once lunch was over and plates were cleared, they asked for the bill. I gave it to them and they paid, got their babies, and headed out to continue playing. When I went to the table to clean up the last few items, I saw the money left for the bill. I also saw on Maura's placemat she had left me a coin and her Ariel doll. When I asked her about it, she said she didn't have enough money for a tip so she left me her favorite toy as well as the money. It made me proud of her sweetness, but also giggle at the same time.
My payment....
...and my tip.
At that time I went to check on Meagan. She was still sleeping so I went back downstairs. The girls had been riding bikes (running errands, excuse me...) outside but it was really hot so they already came back in. They seemed "bored" so I asked them to put their shoes away and come back to the kitchen in 5 minutes. While they put shoes away, I made movie tickets for them. I set up their chairs in our living room and put a movie in our DVD machine. I called the girls back in and they were so excited to "go to a movie" together. They each got their tickets, which I ripped for them at the entrance, and they took their seats. They ordered popcorn and waters and enjoyed having some time inside the cool air from the heat outside.
Movie time!
Our state of the art spill proof water system
Enjoying popcorn
Shortly after the movie ended, Meagan woke up. She was pretty upset so I brought her downstairs to hang out with us. She had a bottle and was comfortable laying in her Nap Nanny. I let her rest there with a cartoon on while the other girls helped clean up toys and went back outside to play.
Drank a bottle and starting to recharge!
The girls came in again and asked me if we could please do the restaurant for dinner too. I told them that would be fine! This time, Reilly said she wanted to be the server. She came in the kitchen early before dinner and designed her own menus. She also made a waiting area at the start of our kitchen doorway and as the other girls came in, she sat them like a hostess. She got high chairs for babies, and gave out menus. She fixed drinks and served the food I made. The girls had so much fun talking and calling me "Ma'am" and pretending they were "growned up" (as Maura says).... It was a lot of fun and I loved watching them just be carefree and enjoy their day.
Offering her guest a high chair
Taking food orders
Later that evening, Meagan was back in the swing of things. She popped up from the Nap Nanny and was playing with her toys. The girls were happy to see her up and about. They continued to play until later in the night and then finally I told them it was time for everything to be cleaned up. As the day drew to a close I thought of all the fun we had that day. All the silly things, all the giggles and all the "real life" scenes the girls enjoyed acting out. With so much "serious" surrounding them every day, whether it is school, or dedication to a sport/dance, or dealing with Meagan's medical issues, it is so important that they enjoy times like this. They are all old enough that they really exist in a "pack mentality." They often play together for hours and don't even bat an eyelash in my direction, or don't ask me for anything at all. I will check on them and I just get the "mommmmm!" and I know that's my cue they still want to be left alone to play. I love that they have this bond, but I also know that sometimes they still want that guided play. Sometimes, they still need a day completely designed by mom that is almost a game so we can reconnect.
The girls really surprised me with their incredible imaginations throughout the day. They didn't care we had mismatching placemats, or paper written menus, or plastic cups from Moe's or any of the other quirks that made up our day of fun. None of that really matters if I can play along and help them go "somewhere else" for a day to let them explore and use their creativity. I can just imagine what wonderful memories they will have, what life lessons they will learn, and what freedom they feel when we do these special days. As someone said from my imagination days,
"When we treat children's play as seriously as it deserves, we are helping them feel the joy that's to be found in the creative spirit. It's the things we play with and the people who help us play that make the great difference in our lives." - Mr. Rogers
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