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.
Our week started off a bit shaky - as many of you know, we had a little "scare" with Megs early in the week. At first, I blamed it on storms. It was very cloudy and rainy and Meagan was very out of sorts and extremely tired. She is so pressure sensitive, we have learned that when weather changes, or pressure systems come in with warmer or colder weather, Meagan reacts, and typically reacts dramatically. We normally have a "weather day" as we call it, and then she's back to her bubbly self the next day. I became concerned on Monday however when she seemed to not have recovered from the weather change. She wouldn't wake up on her own, and when I woke her up for PT, as excited as she was to see Melissa, she was very tired and out of it. She ended up even falling asleep in the middle of her PT session. As the day went on, she was either fussy, sleeping, or when in a decent mood, extremely wobbly, off balance, and her speech was slurred. We were also watching a friend's child that day, and when the mother came to pick her up (who also knows Megs very well), and commented how Meagan was definitely not herself, I knew my concern was well founded.
Wouldn't wake up for anything
On Tuesday, we were hoping she would wake up better. But she didn't. She continued to be lethargic. She asked to go to sleep constantly or to go to her crib. This is unusual because she typically fights going to bed. After being awake a total of 48 minutes on Monday, I became concerned Tuesday when she seemed to be following the same pattern. I also noticed the catheter in her neck seemed extremely twisted and kinked. I was hoping we weren't heading for another disconnection, as had just happened on her birthday in September. She was acting awfully similarly to that day and it was worrisome. Every time we tried to wake her, she simply asked to go back to bed. Her tried and true test - Irish dance class - didn't even prove to work that night. If she's just grumpy or tired, she will typically perk up for dance class and then crash afterwards. But she didn't perk up much at all. She was very tired and wanted to go to sleep or had slurred speech while trying to snuggle with the dance parents. I was convinced we were heading in to the ER that night. I went ahead and emailed "Elsa" Blair (Dr. R's PA) and she told us to come in the next day and they would work Meagan in the schedule.
Wednesday morning, I had to wake Meagan up again. We headed in to Dr. R's office and he did a thorough exam. He noticed Megs was not herself and was concerned as well. Luckily, he was confident that her shunt had not disconnected but was concerned with her behavior. After checking her out, Dr. R concluded that it was not a shunt emergency, but that she was on "high watch" because of past occurrences. He told me he was on call the rest of the week and weekend so if she did not turn around in two days, to come in and he would expedite her to a CT or MRI and go from there. As we went home I was hoping it was just a few off days or a kink in the shunt because we really didn't want Meagan to end up with another surgery. When your normally active and funny child is mostly like the picture below, your radar definitely goes off and you hope for the best.
As Thursday approached, I was hoping for a turnaround. We asked friends and family for some extra prayers and were hoping the previous 72 hours were just a few "brain days" and we would see our old Megs return. And thankfully, that's exactly what we got. Meagan woke up in a good mood. Even better, she seemed more happy, more aware, and more like her old funny self. She was still extremely tired, but when the girls were having hot chocolate and she tried to grab their spoons and "feed them"... I knew Megs was on her way back.
Meagan was a lot better Thanksgiving Day - but still extremely tired.
She slept for about 5 hours in the afternoon!
We had a great Thanksgiving day with my family and some of our dear dance friends, and Meagan continued to improve. She still slept a bit more than normal, but not nearly as long, and when she was awake she was much more engaged with her surroundings. As the weekend went on, we were having a wonderful time - spending time with my parents, taking the girls to the dance studio to practice, and starting to get out our Christmas decorations.
Tonight, as we got out the tree to put up, Meagan completely freaked out. She was not ok with the change in our living room and had the biggest fit. Not even coaxing her with lights or pretty colors, or even Pop Pop (whom she will usually do anything for) could get her out of her fears. For some reason (which we will never know), Meagan did not like the tree. She did not like the lights. And she certainly didn't want any of it in her house. Welcome to the life of a family with a child who has sensory issues. So often we focus on her hydro complications or epilepsy set backs, other challenges slip through the cracks. But sensory issues with Meagan are very real. She doesn't handle transitions well, she doesn't like certain sensations or changes in her environment, and for a family of 7, this is very hard to deal with at times because we never know when she will react or become "unglued" from even a subtle change. And tonight was one of those moments.
As my husband continued to unpack the tree and put it up, Meagan was not having it! She was very upset and did not like it at all! It is times like these when although sad, you really do have to keep your sense of humor. If we relished in every moment that Meagan did not enjoy, we would never enjoy anything as a family. Sometimes, you just have a smile, or even giggle, and find the humor in the situation. And that we did. As sad as it was she didn't enjoy the tree going up, it was also funny to watch her come up with any excuse to get the tree out of the house. The video below was Meagan's initial reaction to the tree being put up....
After seeing her reaction, we tried every avenue of distraction. Focusing on the lights, the fun, Santa coming, my parents being here, etc... I sent the video to my brother with the humorous line of "well decorating should go great this year..." because last year she was already afraid of our Christmas figurines. I know I have spoken highly of my brother before, but I just have to do it again. Instead of just responding that it was cute, sad, or funny, he took time out of his night to record a sweet video for Meagan. For some reason when he calls, Meagan responds - she races to the phone or to the sound of his voice and intently listens. As I have noted before - these two are kindred spirits. :) Nick encouraged Meagan to help with the tree and talked to her about how awesome it is in his video. He spoke excitedly and lovingly, and helped to make it "no big deal"....he told Meagan to help her daddy and how fun having a Christmas tree would be. I showed Meagan the video and she watched it intently. She listened and hung on every word and really enjoyed seeing her uncle. Then, after watching it, without the bat of an eyelash, Meagan scooted over to our tree all on her own! She approached it without fear. She seemed to enjoy the lights, and even tried to touch the tree. I turned on my camera and recorded her new attitude towards the tree to show my brother. As you can see, when I even mentioned my brother's name, she scooted as fast as she could towards the phone - she probably thought he was on Facetime! For whatever reason, she connects with him - and in times like these, that is an even bigger blessing. I forwarded the video on to my brother with a simple "Thank you." Sometimes, all that can get her through a major sensory issue is a little encouragement from the guy who "gets her."
There is so much we have to be thankful for this year. We have a wonderful family, special unique children, and unwavering faith that allows us to both endure and enjoy all of it. We are so thankful that Meagan avoided another hospital stay and thankful for a trustworthy and knowledgeable doctor. We are thankful for understanding and for humor. And we are thankful for the special occurrences that get Meagan through her random rough patches we don't know how to navigate. What I have realized this year, is that Meagan truly helps us to be thankful everyday. Even holding her on Monday as she whimpered and slept, I couldn't help but thank God for her presence. I was so happy that even though it was a bad day, she was resting in my arms. And today, I am even more thankful that she is back to her happy and spunky self.
We always know each day can bring the unexpected. But with a child like Meagan, we are reminded of that a bit more. Things can change in an instant and it's a constant battle to focus on the positive and what is versus what "could be." But we are getting better at that, and feel blessed to have all been home together as a family this holiday week. We sincerely wish each and every one a blessed Thanksgiving week, and hope this Christmas season is starting off as it should - with remembering thanks for even the trying moments, and then giving thanks to God for others that get us through those times with love ..... and even a little humor.
Well, the right school that is :) We have ended the first two weeks at our new school and I must say - very impressed! Each child seems to be thriving where before we had thought or were told that they weren't capable of doing so. It has been a joy to watch them flourish these last two weeks!
Reilly had to jump in to math of course mid year. She was a bit nervous about this because she could never quite grasp the math fully at her old school. After just a few days of some extra practice to grasp the concepts, she was right on board with all the new math, even though they were concepts she hadn't studied yet. She said the teacher really explained everything well and she was even doing extra pages in her workbook! Reilly brought home her first progress report and of course has kept her good grades - but even better was seeing her 98 in math. Yep...98. Reilly had struggled with math at her old school - she had maintained a high B, but had to spend literally hours at home learning the concepts since many were thrown at her in school but not thoroughly taught for fluency. This last year, we had received letters that she would need tutoring in math or she may not be passed on to the next grade in that subject (again, this is a girl who had a high B....she wasn't failing....but she needed tutoring)..... so needless to say, Reilly was EXTREMELY happy with her A in math and even happier that she understood the concepts. Even with her missed sick days, the teacher worked with that, cut out the busy work and class papers, and only had her make up the tests or important lessons of the week. Her teacher told us when kids are sick they need to rest, get better, and concentrate on catching up on concepts and any missed tests - the daily work is not important to make up and would only bog her down. That really helped her to stay on task and not be inundated with paper after paper that really weren't helping her grasp concepts. I must say, I love Reilly's new teacher and her positive outlook. I love that she seems to teach things thoroughly and works them hard during the day to make sure they really grasp concepts. This helps Reilly to leave school feeling accomplished, and also having a full understanding of the lessons from the day - not to mention, it cuts down on the homework since things have been taught correctly during the school day. Win - win.
Kaitlin is probably the biggest change for us overall. She is thriving on learning, she is making a ton of friends, and she cannot wait to get on the bus to go to school each day. This is a stark difference from the very subdued girl we started to see go downhill over the last year at her old school. At her last conference, Kaitlin was told she has a "reading problem." There was no back up testing, no official reading specialist who had done a proper evaluation, and I just wasn't seeing it at home. So Kate left quite disappointed and held on to that notion that she had a "problem." It especially bothered me this was said in front of her - an 8 year old shouldn't hear those things. Conferences should really be adult only so free speaking can occur and teachers and parents can openly discuss a child's performance. Now I had a child who was focused on her new "reading problem" and she was losing joy in something she used to love to do. I encouraged her to just forget about that and try again at the new school and if something came up, we would properly diagnose it and get her help so it didn't impact her other academics. Well what we have found couldn't be farther from the original opinion. Kaitlin is reading extremely well. She grasps concepts in comprehension and in recent nights, I have even had to go tell her to stop reading so she will go to sleep! Her teacher knew our concerns going in, and has said that so far, she sees no issues with Kaitlin and reading. She said, quite the contrary - that Kaitlin is a smart and energetic girl. The teacher said of course Kaitlin is quiet most of the time, but that with some encouragement and light hearted fun, she is always able to make Kaitlin feel comfortable to read aloud in class. Kate even told me she now likes to read out loud in class! (something she used to dread). Kaitlin's new teacher even makes an effort to always emphasize how much of a blessing Kaitlin is to her class and her teaching experience. Hearing things like that from the person that has your child all day at school is very reassuring that they are not only being taught well and excelling in academics, but that they are also loved - which is so important at those younger ages! I am so happy for Kate that she is loving school again and that she has a loving environment to fuel that curiosity for learning! And as if it could get any better - Kaitlin has her lunch at the same time as Meagan. Can we say cute overload? :)
Anna is really enjoying making new friends. She plays with any kid in her class and is very sweet. She is excelling at all her subjects and judging by the comments coming home on her papers, her teacher really loves to read all her writing paragraphs and stories. Anna is extremely creative and has shown this at her new school. Her writing has improved drastically and now she even writes more than is required because she thinks it is fun. She has been able to learn a lot, and is excelling at reading and math. While doing this, she is also having a lot of fun. Being only in first grade, the teacher likes to push them academically, but, she also has a classroom that moves a lot. They still have centers and fun activities to break up the day because she said while they can start to learn "seriously" they won't take learning seriously if it's not fun. She's correct! These kids are 6 and need a fun environment. Anna's centers focus around math or numbers but in creative ways and really lets the kids get up and do different things during the day. Anna loves this because as she told me, she is "not sitting and writing all day and getting cramps." ha - the eyes of a 6 year old! I am really enjoying watching her blossom in her new classroom.
Last but not least, Meagan has absolutely blossomed at school. If you remember the first week we did have tears - as expected - with me dropping her off and throughout her day as she would get distracted but then want mommy and cry. I am happy to report that last week, we had no tears. :) Meagan absolutely LOVES school. In just two weeks it has helped her with so much. She is following the routine of the class, and is learning to follow outside instructions. The teacher gives the students jobs like in any typical preschool, but incorporates them with therapies for the kids. The students are shown a picture chart and they indicate (however they can whether it's a noise, pointing, or a look) which job they would like for the day. For example, Meagan picked the flower last Tuesday. This meant her job was to water the plants. The teacher coordinated this job with Meagan's PT. So when the PT came, they worked on walking to get the watering can, walking to fill it up, walking to the plants, and then standing while the PT helped Meagan water all the flowers. On Wednesday, Meagan was line leader. That day they worked on routine and structure - how Meagan had to stay with the class and stay in line, but lead when they would tell her to..etc. And she wasn't confined to her chair either. Meagan scoots on her bottom - so she leads on her bottom :) This made me so happy to hear because that's Meagan - that's how she gets around and her teachers just incorporate it right along with the class. They aren't worried about Meagan being in a chair or being "upright" like "other kids".... if Meagan needs to move in line, or move about the room, or other things, she does so - scooting along on her bottom. And the other kids don't even bat an eyelash - that's just Meagan and in two short weeks, they get it and accept her for it. That is inclusion. And it's a wonderful thing.
Of course with preschool comes all the silly crafts - Meagan made a few this week. She made a handpainted turkey to help decorate for Thanksgiving and also made hand cut outs that the teachers helped form in to a turkey hat. It's quite cute - and quite hilarious. Even these little tasks help Meagan in so many ways. For example, she cannot stand things on her hands - even working at home it's always a battle. But in school, she seems to be making progress. The first two days paint was put on her hands she cried and didn't like it. But upon seeing the other kids doing it, and the teacher really talking to her about how it's fun to make things, last week when paint was put on Meagan's hands, she didn't cry. She instead studied her newly painted hand, and then reached out and asked the teacher "what color?" So she is making progress in sensory areas too which is so important.
Meagan's crafts from the second week!
The problems that were happening and snowballing at our old school were so detrimental to the girls, it warranted a big change. It was a risk and a leap of faith, but now in hindsight, we are so happy! They only have one childhood and as mom, it's my job to protect that as much as possible. Nothing will ever be perfect, but, having an environment now that is so inclusive to all the girls, that is so loving and genuine, and that has such open transparency and communication from the administration are all things help to deter problems before they start - and if there is an issue, these practices at the school make it easy to address the problem and move forward in a positive manner. Knowing the openness and respect is there for parents is a huge deal - especially when it is ultimately us who allows school the privilege of schools being around our precious children day to day.
When I picked Meagan up on Wednesday from school, she was all smiles. She gave a big "hi MOMMY!!!!" and I loaded her in the car. I leaned down and gave her a hug and said "So Meagan do you like school?" Meagan sat about 30 seconds (we have delay with brain and her retrieval process... :) ) and finally looked at me and said "yessssss" I said "That's so great Meagan! What do you love about school?" .... another 30 seconds went by and Meagan dipped her chin into her chest and with the biggest smile said "I have friends." School rules.
I'm going to venture a "little" off subject here as I write today's post. Veteran's Day has always been a day that has meant a lot to me. Being raised in a military family, and living around the world growing up during peace time and war time, I got to see first hand the willing sacrifice the men and women of our armed services put forth daily in their military service. I was raised to always respect men and women in uniform, recognize their selflessness, thank them for their service, and do what I could to support them no matter how small it seemed.
3 generations of Veterans:
Grandpa's grave (Army Air Corps, WWII), my father (USN, Vietnam),
my brother (2nd Recon Bravo I Marine Corps, Iraq)
Our family has a long history with those serving our country. From my grandfather, to my father, to my father in law, to my brother, to Brian's brother in law, and many cousins, uncles and close friends along the way. Of our veterans, besides my father of course, my closest relationship is with my brother, Nick. I will never forget when I took him out for his 21st birthday weeks before my wedding and he told me he had enlisted. I was not surprised - growing up he had always talked about joining the Marines.... I knew it was just a matter of "when," not "if." Nick served 4 years active duty in the Marine Corps - 2nd Recon Bn - Bravo 1. He sacrificed a lot to fight in Iraq and other areas for us all to be safer earning many recognitions including a Purple Heart. (He would never tell you though because that's just him - and any Marine - honor and humility.....) Thankfully, he came home, but many of his brothers did not. Because of my close relationship with him, I will always remember everything they went through and make sure my children grown up knowing as well.
Fast forward to Meagan's birth. We of course had a c-section planned and were given the date of September 22nd. As the date neared, we heard that there were a few emergencies that were going to actually bump us to September 23rd. While I wasn't happy about waiting another day to meet Meagan, I was happy that her new birthday was going to be on Nick's birthday. Although Nick was my "little" brother, I looked up to him tremendously. I watched him honorably serve two intense tours in Iraq, work through loss and TBI to power through college on his own, finish his degree, get a great job, care for his son, and even find time for bringing awareness to post-war Marine injuries by taking part in things like the George Bush Wounded Warrior Ride and other events. Knowing all Meagan would have to face, I was honored to know our special little girl would be born on such a great day.
Nick on the Wounded Warrior Ride
Once Meagan was born, there were a lot of adjustments in our lives as you know. Even though Nick was far away, his concern and questions were never far. He would often text or call asking how she was doing.... or in true "Nick" fashion, send me something so funny I would be "that" parent laughing out loud in the middle of the NICU. I remember all the visits we have had since then when he has held her, played with her, and praised all her accomplishments. He calls her his "brain buddy" because he knows she "gets him" on those off days. Sharing a birthday isn't their only commonality - they both have an infectious sense of humor, and are the kindest people you would ever meet. Nick is an incredible father to his son, the best little "big" brother I could have asked for, and is a loving and supportive uncle.
Nick and Megs - a special bond.
Now why all this attention on my brother and his fellow Marines today? As you know it is Veteran's Day today. We see all the Facebook posts and pictures honoring those we love who have served - but what are we actually doing about it? What can we do since we are not the ones voluntarily putting our lives on the line for freedom? What else can we do besides passing along oh so important stories of brave men and women on to our children? How can we show them true action on our part to say thank you?
For me, personally, it is my brother and his fellow brothers, both fallen and still here, who I would like to support. Nick recently made a webpage asking for support for his fellow Recon brothers and their families. As he states on his page:
..." [Your Marine Reconnaissance Foundation]... donation goes directly to helping Marines and their loved ones battle through tough timees and austere conditions. Additionally, take pride in the fact that you are supporting the tip of the spear in the Marine Corps - the dirty, hardened, cammie-painted men of the Reconnaissance Community...." He goes on to say: "To show my committment to this cause I will be competing in several Triathlons throughout the 2015 season -3 of which are Half-Ironman events! Through training and competition, I am in store for pain and misery - However, it is nothing compared to what some of my Recon-brothers and their families have to endure due to wounds, injuries, or financial distress. I've been there, I received help myself, and now it is time to give back."
So I say to you - it's your turn. These men and women have sacrificed not once, not twice, but time and time again. Even after their active duty ends, their duty to us and their self sacrifice never ends. Because that's just how they are made. Next time you just want that $5 pack of gum at the checkout, or the $6 Starbucks coffee, or maybe instead of that cute new top you have been eyeing at the store, or the new electronic game you have been waiting for..... take that money, and sacrifice a little of your luxury to donate to the MRF. There is no amount too small and even better, your donation goes directly to help these Marines and their families. You can visit my brother's webpage HERE to make the donation - and I encourage you to please pass the link on to others.
Afterall, these are the ones we rely on to keep those luxuries we enjoy everyday. These are the ones we rely on to sit in dirt, or fields, or sand while we snuggle in our comfortable beds. These are the ones we rely on to walk towards bullets or bombs while we safely sit in our homes. These are the ones we rely on to give their lives - so that we may have one more day to wake up in a free land.
Sincerely,
One proud Marine sister and one grateful American
Semper Fi
Today was Meagan's first day of school! It was actually the first day for all the girls (except Maura who will finish out her pre-k 5's where she is currently). Everyone was excited but a little nervous this morning naturally. I decided it would be best to drop Meagan off first since she gets so upset when each of her sisters leaves during the morning for school. That way she could get settled while I walked the other girls to their new classrooms.
The principal walked us to each classroom starting with Meagan's. Meagan's teacher came and greeted us at the door and welcomed us inside. She showed us the hook where Meagan could hang her bag with her name on it. We had packed her some diapers, a bottle, pacifiers and a few dry snacks if she would eat with the other kids. (I give her a full tube feed before and after school so they don't have to access her gtube there just yet). Meagan didn't cry. She looked around, seemed curious at all the little people her same age, and started to ask "what's this? ... what's this?" I made a point to not stand around forever because I knew she would be a little upset when I left - afterall she's been literally at my hip for over 3 years, even through hospital stays..etc.. I never leave her. So I gave her a big hug and kiss and told her to have so much fun with her teacher and new friends. She started to fuss a little bit as we left, but nothing unexpected and nothing her older sisters hadn't done on their first days.
Next the principal walked us to Reilly's classroom - her teacher is the grandmother of 20 and comes from a big family and loves history. Nice but very strict and structured - perfect match for Reilly. Then we went to the opposite hall where Kaitlin walked into her classroom - her teacher is very sweet and soft spoken just like Kaitlin and she seemed fine to just go on in and get settled. Anna was the last to be dropped off - she was probably most nervous because she is a "mommy's girl" but as soon as we walked in her new teacher gave her a big hug and told her all the fun things they were going to do. I knew she would be just fine especially with that extra love and hugs as she made the adjustment.
Maura and I left the school and went about our day. She headed off to her normal preschool schedule and I was (very oddly I may add..) "kid-less" for a few hours! I intended to get a lot done, but instead ended up at the doctor to address a lingering cold I have been fighting over the last few weeks. The doctor was very nice and fit me in - within a half hour I was walking out with a bronchitis and early pneumonia diagnosis and some medication to help everything turn around and start healing. By the time I left, it was the perfect time to go pick up Meagan. I was nervous but excited to see her. I knew she had probably done great, but it's still always nervewracking wondering how they did on their first day.
As I arrived at the school, I walked in to the front and the teacher was wheeling Meagan down the hallway in her chair. Along side her was another little boy who also leaves early in the day. When Meagan saw me, of course, her eyes lit up and her little legs and arms got very stiff with excitement. She said "Mommy!" and I made my way to her and gave her a great big hug. The teacher was so nice and stayed for several minutes to chat with me about Meagan's day - the things she did well with and the things she struggled with. Basically, she had done very well and had an amazing day! Towards the end of the few hours there, the teacher told me she started to get a little fussy for me, but again, that was expected. Even the music class Meagan attends (and LOVES) required a good three weeks for her to become acclimated - and I am there with her for that. So this will take a few weeks of good routine, getting to know her sweet teachers more, and also realizing that everyday, I will pick her up and take her with me.
Meagan gives a thumbs up for first day of school
Meagan's first report - it will be so helpful to get these everyday to see where she's
growing and where we need to have reinforcements.
The teacher was very sweet and said they had so enjoyed having Meagan in the class. She pointed to the little boy and said "Isaac." The teacher said that Meagan had been calling some of the children by name already and loved to talk. (No kidding! :) ) She explained that Isaac was a speech student and usually didn't say much when he would leave school. His dad came in to get him and Meagan put her hand up and said "Bye Isaac.."... in a very muffled voice, the sweet little boy said "Bye".. Meagan's teacher lit up with joy and told us that typically, he doesn't say goodbye all the time or on demand and how wonderful that he had answered Meagan. It was awesome to see how even in just a few short hours, these kids had really impacted each other and helped each other with their own weaknesses while at the same time bringing out their strengths. I'm very excited for what this program will mean for Meagan - how it will help her expand her horizons and get her through some of her sensory and transitional struggles we have to deal with as a family - but also how she will impact other kids. Not to mention her OT, PT, Speech and other helpful therapies that will positively impact her development. We all know Meagan isn't shy about telling you what she thinks!
As for the other girls, they all had a great day. I waited at the bus stop and off came 3 smiling girls bubbling with excitement to tell me about their first day. Anna told me she loved her class, the teacher and everything about it - but that she still had to do work. I laughed - I told her "It's not a vacation Anna, it's school!" She told me all about having fun at PE, making new friends, and riding the bus. Kaitlin was just as excited - telling me about all the fun she had chatting at lunch and reading at school. I was happy to hear this because previously, she had been told she probably had a reading issue and had been very down about her reading. I wasn't convinced as I saw her read and comprehend well at home, but could not find a way to light that fire again. Apparently, this transition worked. Kaitlin had reading homework and not only did what was assigned, but did it 3 and 4 times over. She then called daddy and read to him over the phone and continued to read 3-4 more books throughout the evening. I was so happy to see this as she had really been lacking confidence in her reading prior to today. When Reilly got off the bus, she was happy but she looked awfully grey to me. As we settled in at home, I could tell she wasn't feeling well and asked her about her day. I was concerned she had a bad day but soon after she started talking, I realized the poor kid was sick. I took her temperature and she had a fever. I called the local pediatrician where you can easily walk in and they said they would see her. As soon as we walked in she was very tired, still feverish, and ended up getting sick all over the floor. As soon as that happened my first thought was strep (because classically, Reilly always gets headache, fever and vomiting).... The doctor came in and agreed and ran the test - Sure enough - strep! Ugh, poor kid! As the meds kicked in later tonight and she rested more and the fever started to drop, she started to light up more about school. She actually enjoyed her new math book and had started to understand a lot of the problems she wasn't previously understanding. She explained that she liked her teacher and that her teacher loved history - which is a huge interest of Reilly so she was very happy to learn they would be doing projects on explorers soon. She said she hadn't made any friends just yet, but I told her not to worry - that it would come with time - especially not feeling herself the first day with getting sick! She is also excited about a big reading project where they can complete reading several books for prizes and other awards and has already asked me to sign her up for Drama Club - something she desperately missed when it left our other school. I'm excited for her to go back on Wednesday - this time feeling 100% better - and able to really enjoy her day!
Transitions can be tough but we are seeing all the signs that things are going well. We even got phone calls from the girls' new teachers today asking how their days went and thanking us for letting our girls be in their classes this year. I was really blown away by that gesture. I'm so proud of all the girls today! Each of them did a great job at staying positive, trying their best at their schoolwork, and opening themselves up to new friends. I know how hard that is - I was a military kid who moved a lot and often found myself in those "new kid" shoes. The good thing is I'm much stronger for it, and met some amazing people along the way. I see the same happening for my girls and it makes me happy that we are finally settling in to our "new normal." As I was cleaning up tonight, I found a note from Anna that really brought it all together:
"Dear Mommy, I had a great day at school. Mrs. R is super nice. She doesn't give a lot of work. I made two friends today. We were going to play monkey in the middle but it was time to line up. It was fun riding the bus. I love school."
Spending a large part of my childhood overseas, I remember going through all the old historic sites and buildings. Often, there were those houses or castles where you could barely see out the windows - the glass was that old bubbly thick glass that obscured the view. You could see bits and pieces of what was outside, but there was always enough blur to leave some mystery as to what was behind that window. I remember in one castle in particular looking out to see blurred green which I assumed (correctly) were rolling hills and landscapes, but there was also a blur of colors I couldn't make out. Upon exiting the castle, I realized those colors were the most amazing garden of all different kinds of plants and flowers...bright and beautiful and very clear to the eye. If I had not ventured outside on our tour, I would never have seen that garden - my vision would have still been blurred by the bubbly thick window we were stuck looking through from within.
We are definitely in one of those moments right now. For months, we have contemplated switching our older girls' school. Details aside, we felt the environment was not as it used to be. We had noticed other families making changes, and our girls were becoming increasingly unhappy and frustrated with school. This was unusual as they are girls who absolutely loved school and used to chat about better experiences a few years before. In recent years, though, silence. We continued to stick it out in the hopes of change, but I soon started to see this was not the best for the girls. We finally reached a point where as parents, we knew a change had to be made and this past week, we took a leap of faith, and pulled them out of the school.
I had mixed emotions of course. I was sad because we had made some wonderful memories through the earlier years - and along the way made some lifelong friends. But I was happy because I knew things had changed and academically and health-wise, I knew this was the absolute right choice. Making a decision with mixed emotions is hard because it involves a lot of contemplation and research - and then you have to take the leap of faith towards whichever direction you feel is best. And then you pray.
Leading up to this, I had an involved meeting with our children's new principal. She was extremely welcoming, detailed, and highly organized. Her love for children was obvious and her background in special education was apparent as she described many inclusion minded programs throughout the school. She answered all my questions with honesty and thorough information - and she showed me several parent surveys she does each year. 100% of parents responded that school communication was excellent. I was able to tour the school right then, and observe the classrooms where my girls would be placed. I even got to look in on the inclusion classrooms where Meagan would eventually be if a spot ever opened up. Outside of my interview with the administration, I talked with numerous families who attend the school, including several families who had gone through the exact transition we were about to embark on. From families who had attended years ago, to families currently there, all had wonderful things to say.
Just when I was almost sure of our decision, I received a phone call. It was our county special needs coordinator. She said that although they hadn't expected it this year, family had moved - and there was now space in the special needs program at the new school for Meagan. [If you remember, we originally had decided to not send her since she had been placed at a school further away, and I wasn't impressed with their program.] Now, with my girls transitioning to the new school, and a spot opening up there for Meagan at this exact same time? And the fact that I loved the special needs program at the new school? All my girls in the same school? An inclusive and vibrant environment?That was it. I knew it was a sign from God we were headed in the right direction. This was sounding good.
I still had some reservations though, because I had not told my girls yet of my decision. When my kids got in the car on Thursday, I told them Friday (the very next day) would be their last day and we would be starting at a new school, a new adventure that following Monday. I will admit...I was nervous for their reaction. However, within seconds, those nerves were turned to joy. What I saw was my girls smiling, almost melting in to their seats with relief, and an immediate sense of excitement for our new path. They started chatting up a storm, asking questions about their new teachers, and pouring out stories of how they were secretly yearning for a new environment. The joy was palpable - and for some of my kids, they were the most relaxed I had seen them in over two years. My slightest doubts immediately dissipated and my vision was becoming clearer.
Sometimes we are so intrigued looking through that bubbly glass that we lack clarity. We get so comfortable, we settle for "what is." We accept that the glass is flawed and we just have to "get through it." However, if we never step outside the boundaries and accepting what will "just be" we will miss out on something greater or more beautiful. If I had stayed inside that castle as a little girl, I would have never seen what those colors were through the warped glass. I would have always been wondering "What was out there? What was around the corner?" I'm so glad I stepped outside that day and saw the most gorgeous gardens I have ever seen. The colors were no longer a muddled mystery, but a clear vision of beauty. That is how I am choosing to view this transition in our family life. When things are blurry, all we have to do is look to God and what He shows us is best. Even if there are doubts, He will ultimately make things clear and show us to the clarity we need - one window at a time.
"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways, submit to Him, and He will make your paths straight." Proverbs 3:5-6
It really seems like every time Meagan has a problem, we see a burst of new accomplishments or new progress shortly after. As you know, about 3 1/2 weeks ago Meagan had her 8th or 9th brain surgery - her 3rd technical revision, and her 1st emergent one. Since then, she has been doing extremely well. Last time I updated the PT news, we were working on getting her more comfortable on her feet. Everyone always comments how cute and tiny Meagan's feet are - and that's true (she's 3 years old but only wears an infant size 3 or 4 shoe!) But a big reason for that is because she doesn't weight bear on them. So without the stimulation of standing, cruising, or walking, her feet do not grow at the rate they should compared to her body. This poses a problem when trying to help her learn to stand because for a while, she will feel unsteady and even unsupported with her little feet. For the longest time we have battled sensory issues, surgical setbacks and also literal physical problems with her holding herself up due to her tiny lower body. That all changed this last week.
As I was sitting there last week during dance waiting for my older girls, Meagan was doing her usual routine. (At dance class Meagan loves to scoot around greeting everyone and of course going up to each parent and saying hello). I was distracted by my conversation with a fellow parent when I happen to look down and see Meagan holding on to my legs - except she wasn't sitting on the floor like usual - she was standing between my legs! I couldn't believe it. Meagan had just pulled up to stand for the first time! The other champ parents who were there and know us so well were so excited as well! They clapped for Meagan and as I sat her back down on the floor, encouraged her to do it again. And she did.
Another thing that has seemed to catch on is her counting and her letters. She has always loved numbers and letters, but it seems we have had another jump in both. Meagan always counted to ten in the last few months but would then start again at 1. One day in the car while waiting for a doctor appointment, she asked me to count. Of course I obliged, and we started to count. When we got to 10, she continued on.. I was shocked! As I ended with an excited "twenty!" I heard from the back a small voice say "twenty one...."..... um, excuse me? When did she learn this?! I was surprised as was one of her sisters who was with us at the time and so we continued on. Meagan made it to 28 before she finally stalled and went back to 1. What a surprise that was! As for her letters, we have been working with her to start recognizing some of the letters by sight. Nothing hardcore, but, at least wanting to familiarize her with some of them since she loves for me to sing the ABC's to her so much. At Kaitlin's doctor appointment last week, I had about an hour of one on one time with Meagan so I decided to get out her favorite ABC book and start to teach her a few easy ones. Within a few hours, she had O, P, and M memorized. We worked a bit more on A and B this week but those are still fuzzy.
We often complain about and stand in awe of the change in seasons all at one time. We complain about the cold in winter, but then complain about heat in summer. At the same time, we enjoy the cozy nights with our families, or the fun sunny days by the pool. There is good and bad in every season. That's how I really feel we view Meagan's life - seasons. There are some that are great, and some not so great, but every 'season' of Meagan's growing up has offered something beautiful on some level.
As we enter Fall, the crispness of the air, the fresh winds and the colors that abound this time of year bring a fresh look on life and a new excitement. Likewise, we are excited for the changes Meagan is experiencing right now. I try to enjoy these as much as possible because seasons sometimes change suddenly, and I don't want to miss a moment of being thankful for all she has become.
In a family of 7, preparing a special post for Meagan's 3rd birthday just doesn't matter. Prepared as I was, life once again threw us a curveball and prepared as I was, we were completely unprepared for what manifested on her actual birthday. Murphy's Law states that if I had in fact waited until the last minute to save a blank post for her special day, the day would have been regular, normal, smooth and boring. But that's not life, that's not Meagan, and that's not life with Meagan.... so without further adieu, let's get to our little girl's birthday post!
Meagan's day started out like any other day - at least in the life of a teenager. She slept. And slept And slept. Now, what's the problem you might say? Well, in a child who has a fairly "set" routine and a child who has been known to have brain issues in the past, sleeping for inordinate amounts of time isn't necessarily a great thing. Or a calming thing. Of course I may have to rethink this when she's a teenager - I know teens love to sleep in.
In hindsight, it really should have been my first clue - but, I wasn't thinking that way on that day. My in laws were visiting at the time, and so I thought it would be the opportunity to run down the road and get Meagan's "Frozen" themed cupcake mix, cups, and plates. I had timed it perfectly so I could go from running my errands to picking up Maura from preschool and then get home to plan for the rest of the evening. Making cupcakes. Bringing said cupcakes to the older girls' dance class where Meagan loves to be so much. Having a small dinner and celebration. Letting her open presents when we got home. Just small, simple, and appropriate enough considering the fact it was a dance night and a school night. Meagan apparently wanted something much more exciting.
I got home from picking up Maura and did my usual "Hey everyone!" as I walked into the door.....except I didn't get my usual greeting back from my in laws. And I didn't get my usual excited Meagan scooting as fast as possible over to me saying "Hi mommy!!" Inside I instantly knew something was wrong. I closed the door to look into the living room. There I saw my mother in law trying to frantically explain to me what was going on and say she was about 2 seconds from calling me. I saw my father in law with an extremely worried expressions telling me that Meagan couldn't sit up. I looked down and Meagan was trying to sit up... over and over again... but could not. She was also trying to talk to me. Typically, her speech is her strongest suit.... but although sound was coming out, all her words were completely slurred. Being a brain kid's mom, the first thing that popped into my mind was stroke.... I knew she had to go in. Something was terribly wrong.
I grabbed her up and put her in our car. I started to drive to Children's. The whole way there Meagan was in between screaming/slurred speech and completely passing out. She would go from one to the other within a half second. It was very scary. I had one hand behind me holding Meagan's foot so when she would pass out, I could squeeze it and pull on it yelling her name, and it would rouse her for another few minutes when we just repeated the whole thing all over again. When we arrived at Children's, we were immediately taken back to a room. Meagan was still between comletely inconsolable and passed out. I noticed a small reddish rash spreading on her chest and her skin looked puffy. She would need to be sedated for her CT scan so they decided to do her shunt series X-ray first to check that. It's a good thing how it worked out. There, clear as day on her X-ray, were her two valves, and her long catheter. Problem was - they weren't connected. Meagan had snapped her shunt catheter in half somehow just below her neck valve, causing it to heap into her belly and the fluid began to drain into her skin.
They started to page the on call Neurosurgeon...but being that it was just at the end of office hours, I asked if they would at least call Dr. Reisner to let him know. Of course he was just leaving the office, but he came over anyway. As he entered the ER room where they were prepping her for surgery, Meagan slurred out an "Sorrrrrrry....sorrrrrry..." I think that did it. Dr. R had other obligations but made a few phone calls to see if he could stay and do the surgery for us. With a kid as complex as Meagan, this gesture meant the world to us. Typically we see Meagan decline over several days and can make a plan, but this was the first time there was an emergent situation. Dr. R's main concern was the catheter. He wasn't sure he could grab it from her peritoneal area and may have to put a new catheter in, leaving the old one to just sit. He said because of her multiple belly surgeries, this was the safest way or they would have to call a general surgeon to monitor her belly region since it had been opened up so many times. Before I knew it, Meagan was being whisked off to the OR and I waited outside with Brian who had just arrived from work. About an hour and a half later, Dr. R came out and told us the good news. Not only did he fix Meagan's system, but, he was able to (with some very careful and precise maneuvering) grab the original catheter out of her abdominal area and reuse it. We were very happy to hear this because not only did it save her having a new catheter, it also saved her from having a dormant catheter just swimming in her belly potentially causing other issues down the road. Dr. R said as long as Meagan woke up ok and got her IV doses of antibiotics in, he was aiming to send her home the next day.
Not a happy camper
Of course throughout that night, Meagan got many visits from her nurse friends who know her so well - they could not believe she had emergency brain surgery ON her birthday. I said several times "yep.. I guess Frozen cupcakes weren't exciting enough for Miss 'center of attention'...." Meagan did well through the night and was able to go to over the counter pain meds by morning. She woke up and besides being a little sore, was right back to her old personality. We had a few more days of her speaking from one side of her mouth - but otherwise she was back to her old silly self.
Of course over the next few nights, we had our "make up" birthday celebration. Meagan got to nibble on her blue birthday Frozen cupcakes. She got to see her Anna and Elsa balloon, and she got to open her gifts from family, friends, and siblings. She laughed, played, and did all the things a little girl should do on her birthday, and it was good.
After the news got out about what had happened, we had many people of course sending well wishes and prayers. We also got a lot of comments about the disbelief this had to happen on her birthday, of all days. While this is true, and probably statistically uncommon, it's not surprising to us. It's just Meagan, and hydro doesn't know any day, hour, or minute... any holiday or special occasion... any inconvenient time or birthday. I see a lot of posts about hydro not defining one's person - while I understand the sentiment, I guess after this year's birthday, I finally came to my peace at disagreeing with that statement. While we of course don't let hydro itself define all of who Meagan is, it is in fact a large part of her definition. It is why she has the silly quirks she does... it is why she has the strength she does, and it is at the end of the day, a large part of who she is. There is a saying by St. Catherine of Siena that I love.... "If you are who you should be, you will set the world ablaze..."
.... 3 years later, and Meagan is still doing just that. Being who she is. Sometimes cupcakes aren't the plan... and that's ok. We wouldn't want anything more or anything less. Happy 3rd Birthday to our little fighter! We are so happy you are here and we cannot wait for the years to come. We love you Megs!
As you probably guessed Meagan did not come home Saturday night. She ended up having two huge vomiting episodes and was quite out of sorts most of the afternoon. She was tired and restless and of course, not holding her feeds. In between being sick, she was happy though which was an improvement from the day before. She would snuggle or smile at me and be silly. There was a definite pattern of sickness and pressure and not feeling well, vs. having an empty tummy and being happy. We hoped it was just still adjustment time so we decided to consult the docs as to what to try next. They suggested resting her stomach, and then trying again at an even slower rate with some anti-nausea meds already in her system. Meagan's feeds started slow and steady last night. She was still having incidents of holding her eyes and forehead as if having a headache. We had decided before starting the feed to go ahead and give her Tylenol for pain and also ordred the Zofran to help her hold the feeds down. It worked for her first feed - we did it at an extremely slow rate and then let her stomach rest for a few hours. When we started her second feed early the next morning, we weren't so lucky. Meagan ended up getting very sick and was then lethargic and sleepy. She dozed off again around 5am.
Dr. R came in fairly early. Meagan was still sleeping. He was very disappointed to hear about her getting sick. Again. We had another consult with GI. They were very clear that this was definitely a secondary problem - and while they could offer solutions for her vomiting, it would definitely be a "band aid." I was open to listening to what they had to offer because I was starting to get concerned about her weight gain and nutrition, and also the damage to her system from throwing up. The GI doctor talked to me about replacing her Gtube with a GJtube. You can read more about it here, but the short form is, the food goes through the J tube and empties into the intestines directly, bypassing the stomach. It helps with vomiting, and also helps kids to absorb more of the nutrients since they aren't getting sick. While the effects of the J tube seemed attractive, we also knew that by doing that we would have to change her to slow feeds - putting her on the tube about 19 hours a day for the calories she needed to intake. Also, if it became dislodged, it would mean a trip into the hospital to have radiology re-place the catheter into the intestines... comparatively, if her Gtube comes out by accident, I can simply (most of the time) put it back in at home. After discussing it with Brian, I was not very sold on the idea. We have no problem with her being tube fed...of course that's her main source of nutrition. The issue for us was more about her lifestyle change it would mean. As it used to be, Meagan would get tube fed by bolus feeds through her tube, and sometimes pump feeds, and sometimes she would take a bottle. This had worked fine for her for over 1 1/2 years, so I was hesitant to add on something else to her plate (J tube) unless it was absolutely necessary. But I knew if it came down to it, we would do what was best for Megs to keep getting her proper calories and the help she needed to grow and thrive. So by the time GI doctor left, we had a plan to go home, but call back Tuesday to get Meagan in for the Jtube outpatient procedure either that same day or Wednesday. Through the afternoon I grew in my discomfort of calling for the outpatient procedure. I knew the root problem was we were in a tug of war between brain pressure and GI pressure - and in the grand scheme of things, brain will win every time just since it is more important in Meagan's case.... so GI will have to have "temporary fixes" at times, but I wasn't sure we were at the point where it was warranted. We decided to not rush into any decision and consult with Dr. R since he also knows Meagan well, and go from there.
Tired and "grey" from a sick few days
We consulted with Dr. R yesterday afternoon after Meagan had again thrown up part of her feed during the day. He said he was completely fine to let us go home and manage her feeds at home since we were competent parents who were on top of Meagan's issues.... as long as we were ok with it as well. He also offered another opinion on the GJ tube option. Dr. R suggested we go home, try light feeds (pedialyte and diluted formula working back up to full formula) as we saw fit on slow rates through her G tube. Let Meagan try to adjust to her new shunt pressure and try to work her feeds back up to what had been her norm. If for some reason this wasn't going to work, we would know in a week or two, and then it would be obvious (and an easy choice) to go ahead and switch Megs to the GJtube. Dr. R also said he feels Meagan may need to go even one setting higher in her pressure setting, so he is having us come in on Thursday to get that done. That way it will give Meagan some adjustment time now, and then when he pumps it up again Thursday, she will hopefully be settled out from this past week. The conversation with him reminded both of us that it did take a little over a week for Megs to get used to her new pressure with the EVD... and that was when it was pumped up a little bit each day. This new change had been overnight (literally), so the conclusion was, Megs may need more time to adjust.
Once we got home, Meagan was very excited to see her sisters and her pets. She scooted around a little and played with some toys. She snuggled with everyone and seemed content. And her sense of humor has started to return. I think we are definitely seeing her on the upswing. She had a small feed last night on a very slow rate of mostly pedialyte and some diluted formula, and so far she is holding it ok. She did hold it all night, however I did let her stomach rest the remainder of the night instead of doing a continuous feed. We did another feed this morning, and so far, she is also holding that down. If she continues to hold these smaller slower diluted feeds, we will try more and more formula until we work back up to her usual rate, and hopefully back up to the amount of formula she is prescribed to keep growing. If at some point it is apparent that won't happen, I have a final date in mind when we will simply say "ok, time for the GJ."
Overall it's been a pretty tiring last 5 days! I'm so thankful we have a great medical team to work with.. and I say that in the truest sense. They really do work with us. Meagan's doctors ask us her tendencies, evaluate her based on her clinical condition and the information we have told them, and are always considerate of our questions and opinions. We have never been pushed aside even when things are intermittent, and that is so important as often hydro kids do have intermittent issues that point to a bigger problem. So now we wait.
We are in the strange balancing act of brain pressure vs. GI pressure and something has to even out - or something has to give. Considering it's taken us almost 3 years for us to even get close to a workable pressure for Meagan's brain, we want to mess with that as little as possible. As a matter of fact, Dr. R said that because of her issues, he may even wait to close up her skull until she's 6ish instead of next year. It's her only "window" to let us know how the shunt valves are working, and the only way she gets a little pressure relief if things act up. I was fine with that - I just jokingly told Dr. R he better not retire before that because I don't trust her in the OR with anyone else!
I will be sure to update from Neurosurgery once we go on Thursday. I'm hopeful we will keep seeing Meagan improve with the diluted feeds, and she starts tolerating more and more in her gtube. We hope that the "fine tuning" Dr. R and the GI team did this weekend was enough to get her another great few months.....or longer... with no major issues. We are so grateful for her progress but it is also such a delicate balance between her shunt system and her GI system that little obstacles along the way are not a shock. We just need to be sure we tackle them with the focus on what is best for Meagan long term.
Ironically, today also starts the first day of Hydrocephalus Awareness Month. Be on the look out for a few posts that focus on this issue in the near future. Thanks again to everyone for the prayers. And to Meagan's doctors and nurses who took such good care of her these last 5 days.
Meagan screamed all the way out the door - typically when Brian comes it means we are walking her to surgery. Once the doors opened, she started laughing so hard. She knew she was going home!
Meagan's MRI went well yesterday. She handled the sedation well and while she took a little longer than usual to wake up, she did wake up fine. The first thing she said when she woke up is "Go to bed!!" She has started to say this referring to her hospital bed. She knows when she is in her hospital bed, she is basically resting. She knows when she leaves her bed, it's for some sort of test. Smart kid.
When we got back to our room last night following the MRI, there was a technical problem in the room, so we were informed we had to move next door. Meagan was an absolute mess. By. the time we had walked up she was in complete meltdown mode. As we moved rooms she became inconsolable. The bad day she had, the MRI, the sedation and just feeling "blah" all culminated in an epic meltdown. We were very lucky to have a tech and Nurse who know Meagan really well so once the new room got settled, they advised everyone else to just exit and let Meagan be with me alone to calm down. (Love nurses like that!) Even doing that it took me a good 20-30 minutes to calm her down. She was flailing, arching her back, and almost throwing herself off the bed. After a big bear hug by mommy to keep her safe, and lots and lots of talking and trying to redirect, she did start to calm and soon she was snuggling in my arms.
The first floor nurses are so amazing with Meagan. Many of them know her well, but even the new trainees seem to be following in the pattern of being good with her. They even took Olaf's blood pressure (zero!) and temperature (freezing!) to help Meagan be more calm when getting her vitals done.
We decided to go ahead and try another feed at a slow rate to get her some food and see if she could handle it overnight. The first part of the night was a bit crazy. She was calmer as far as screaming, etc... but she was extremely restless. She seemed like she just couldn't get comfortable. She held her eyes a lot, not crying, but just wincing and squeezing her forehead like she had a headache. Luckily later on, daddy stopped by which always helps. Meagan is SUCH a daddy's girl. Even if she's feeling badly, when daddy comes in, she lights up and just wants to snuggle him. He stayed and snuggled for a few hours. It was helpful to have him here to give her some love and also sit with her while I went out front to meet my mom and the girls. They had driven down to bring me some fresh clothes and so I could have a quick visit with the older girls. I'm so thankful my mom rearranged things at work to drive down from DC a few days ago so we didn't have to rely (and pay for) babysitters. It helps to keep things so much calmer at home. My mommy heart strings were tugged at, though, last night for sure when I saw the older girls. I reached in the car to give each one a hug and when I got to Reilly, she just buried her hands in her face and cried. I reached in and grabbed her and just put my arms around her and told her I loved her and missed her. Being the oldest is hard sometimes (I know, I'm an oldest child too) because so much is expected from you. As the oldest typically you are "wiser beyond your years" in many ways... but in those tough instances when you are supposed to be that way, you just want to be little and have hugs and kisses and support from mom. I knew Reilly was feeling this yesterday. I comforted her, but then she was such a big girl and said she knows I needed support, not another "baby" as we already had Meagan to be concerned about. She's a little toughie. So much to balance and process for a 9 year old - but I am so so proud of her. I told her she can have hugs whenever she needs to and to be strong and help Nanny (my mom) with the other girls and all the special things I normally do at home. She dried her eyes and was ok when they left.
Brian left as it got later in the night so he could get home to be with the older girls and help. Meagan continued to be restless through much of the night, tossing and turning, and finally around 1am she did fall asleep. I was glad because as selfish as I think it sounds, I was exhausted too! We both snuggled and slept until about 4am. Meagan woke up and was upset and restless again, and then again, she fell back asleep until about 7am. At that time, the resident NSG came in and talked things over with me and said Dr. R would be by shortly. When Dr. R came by, we talked about Meagan's MRI. For the most part, her MRI was stable. There are a few changes here and there, but nothing he wants to rush in to surgery for considering everything she just went through in June. Moreso, the surgery most likely needed (Chiari again) is quite dangerous at her size and we want to buy as much time as possible before that becomes necessary. Of course we don't want her hurting, but, to be honest, if we have to deal with a bit of fussiness and some bumps in the road, and if we can help manage that with her new shunt system to at least provide temporary relief, I'm all for that to help her get even bigger and stronger before a surgery like that happens. Of course we don't want her feeling badly but if we can improve it through managing her pressures, I'm on board with that. If over time she becomes so bad she is miserable daily, or we see a big dip in major skills or basic functions, or an increase in seizures, of course we will revisit that conversation. Dr. R then turned Meagan's programmable valve up pretty high and said the plan for today is to wait and watch. If she can handle her feeds and her mood improves, he is willing to possibly let her go home tonight. He said she has to have improved behavior though and be able to sit up for a prolonged time and be happy/play like her usual self.
Meanwhile, we saw GI - they concluded that Meagan definitely does not have any GI issue as a "primary problem".. .in other words, no "thing" we are missing that needs to be diagnosed or treated. GI's conclusion is that all her GI issues are always a symptom of neuro problems or her issues with pressure changes. They did decide to keep her on the Nexium (she has been getting it through IV here) at home just to protect her esophagus if she gets sick when she has pressure issues again, but that's the only change they are making. As of now she is on slow feeds - only about 50-60 an hour to help her absorb more nutrition. (Originally she was on bottles, boluses, and the occasional pump feed at home). GI recommended continuing this until she is really settled in to the new pressure setting Dr. R set so her neuro issues can really settle out and then if she's doing better over the next few weeks, gradually increase her feed rate as we feel necessary. He said it may be that she will always struggle with GI complications when having brain pressure issues just since she is so extremely sensitive, but that they will work together with us and NSG to make sure she is handled the best way possible for her GI health. I was very happy with the conversation and am thankful she has such good GI doctors who really vet the situation before slapping on new diagnoses or medications unnecessarily.
So today we will see how she does at this new setting and hope for improvement as the day goes on. I'm hopeful as she seemed to tolerate her slow feed overnight and we have seen no more seizures since Wednesday. She still won't take her bottles which is odd because it's really been her main comfort for almost three years, so I'm hoping as we get more settled we will see her want the bottle again. Fingers crossed! Again thanks for all the thoughts and prayers. Meagan is very lucky to have such special family and friends. We will keep you posted if she can head home later tonight!
Meagan had a very special visitor yesterday...Olaf!
The perfect gift from Ms. Lori, who has been by Meagan's side since birth...
Olaf even took a second to grab a selfie with Megs :)
