Speaking of which, Dr. Levitt has officially moved to Nationwide Children's in Columbus. It's about an extra hour to hour and a half drive past Cincinnati, but we made the decision to follow him rather than establishing with a new surgeon. Cincinnati has been great to us and our entire family has made many fun memories while making the best of the circumstances that brought us there, but I feel like this is for the best. Landon's medical history is so extensive that it's best we go with the surgeon that has operated on him the most, and operated on more Hirschsprung's disease patients than any doctor in the world.
Developmentally, Landon is doing okay. It's always been such a rollercoaster of him looking somewhat caught up and then missing another huge milestone. We are following up with neurology this summer and I'm eager to hear what they think. I have concerns with his balance and how much he still falls down when he walks, and his language delay is becoming more significant. Still, we are thankful for all of the skills he already has that he was never expected to have. When you are at a point where no one expects your child to survive, much less ever surpass a vegetative state, any and every accomplishment is a blessing whether on time (like some have been..yay!) or not.
All in all, I'm continuing to feel incredibly blessed to be Landon's mom. I'm thankful to be out of the state of mind that so many people are stuck in thinking that any of us, whether healthy or not, are entitled to to the next moment from now. I'm thankful know past any reasonable doubt that God has a plan, and no matter how dark the moment seems, He will see us through it. For some reason a moment comes back to mind- the one time I broke down while Landon was fighting for his life. I left the PICU to go for lunch with Carson and Austin, this is when Landon was fairly stable but still on life support with an incredibly poor prognosis. Carson asked when he would be able to give Landon his pacifier again. I yelled "why did this happen to us!?" Me, I can handle anything, but my precious 2 and 3 year olds that have been waiting to be big brothers and have suddenly had the experience ripped away along with both parents that had to go stay in the hospital far away from home- they don't understand. When Landon weaned off the ventilator and was cleared for oral feeds, their speech therapist came in and assessed Landon. She found that he did not have a suck reflex present and was not appropriate for oral feeds and they had to place the first of many feeding tubes. Carson's comment was always in the back of my mind, how out of this entire experience all he wanted was to give his brother his paci when he cried. So this speech therapist racked her brain to remember what she had learned in grad school about swallowing and stimulating a suck reflex in a newborn- which had never had the opportunity to make it into clinical practice- and by the end of the day Landon was sucking a pacifier for short periods of time. I have never felt such a huge victory in my life. Landon still at that point may not have ever been able to do anything else, but Carson could finally give him a paci the next time he visited.
In hindsight, it's hard to make sense of why God wouldn't have given us this child. We couldn't have asked to be better equipped to handle the situation- this includes everyone that has followed Landon's story, helped with the boys, meals, financially, and kept Landon in your prayers relentlessly. Rather than feeling victimized that Landon spent the majority of his first holidays, including his first birthday in the hospital, I'm thankful to have our eyes opened to the fact that both children's hospitals we have received treatment in are full of sick kids. Whether it's Christmas, their birthday, or not, they are there. Many for months at a time, and even farther from home than we were- even in Cincinnati. It gives us a huge reason to celebrate the little things we take for granted- like being at home with our family in one place.
On Landon's first birthday, volunteers at St. Louis Children's brought in a donated birthday gift and hung a banner. I can't put into words how much that meant to us and how much we (and Landon will eventually) cherish the photographs! This year we are looking like we are on track to not spend Landon's 2nd birthday in the hospital, but interestingly enough, we are choosing to. We will be celebrating not being admitted to the hospital by delivering donations to those that are. The goal is to pay it forward x100- so in turn for Landon's birthday gift we will donate 100 gifts. I'll be posting more info to come, but I'm thinking a huge birthday party with cupcakes and balloons galore, and in lieu of a gift for Landon bring a gift to donate to a child- birth to teen- for us to deliver in honor of Landon. Everyone is invited!
On a final note, with Landon in better health we have been able to catch up on many "normal" things like getting family pictures done. They turned out amazing! I'll leave you all with a sample :)
