Asher Update - the remix
How is it already February?
I know it has been quite a while since I updated the blog and I know a lot of people have been asking how Asher is doing. It is unbelievably heartwarming to know that so many people are invested in his story and are pulling for him.
I'd like to blame my absence on the chaos of mom life and a busy few weeks at work, but if I am being completely honest, I haven't been writing because I've been having a really tough time. I started the year off with so much hope for the future and so much peace about our situation, but it quickly turned. I've been more angry than I'd like to admit recently and so every time I sat down at the computer to write, I had a difficult time keeping it positive and I would walk away. Even yesterday I wrote a quick post simply addressing updates to Asher's health since so many people had been asking, but when I went to post it today I hated how negative it sounded and I couldn't bring myself to do it. I feel like I am constantly walking the extremely fine line between realism and negativity and I don't ever want my posts to come off ungrateful or pessimistic. Don't get me wrong, I love my son, every single little thing about him. I am so incredibly grateful that I am his mom and I know God was doing something special when he paired us together, but sometimes, this sucks. I'm human and I have really bad days and sometimes those bad days turn into bad weeks and sometimes I really have to grasp at straws to find the light at the end of a pretty dark tunnel. I know that ultimately we have no idea what the future holds for Asher and that I have to be patient and wait it out, but its really hard as a mom to understand that concept. It's really hard to hold on to the hope that things can change when our current situation seems pretty bleak. It's really hard to hear a doctor say "your son can't see" and change it in my head to "he can't see now, but one day he might" or to see my sweet 5 month old still not smiling when people who had babies months after me are posting pictures of their baby cheesing and having to tell myself "one day we will get there." But that's what this condition necessitates. That's how you survive raising a kid with multiple different rare brain conditions.
So this morning I pulled on my positive polly pants (yep, I'm making these a thing), blasted some inspiring music (just kidding I can only write when Asher is asleep, so it was definitely not blasting...also it was Thomas Rhett radio on Pandora) and rewrote my post from yesterday with an update on how Asher is doing, in a different light.
Asher's condition has remained more or less status quo, which we will take as a good thing for now. No significant progress, but also no significant setbacks. We had our first emergency room visit that didn't end up as an inpatient stay (yay!) and we are continuing to try to get his reflux under control. We had a recent medication change that we are hoping and praying helps because if we can't get it stabilized and his weight maintained we are looking at having to change his feeding tube and stopping bottle feeding, which would be heartbreaking to backtrack after all the progress Asher has made. He takes about 80% of his daily feeding by bottle currently and I'd like to think we are very, very close to being done with feeding tubes all together, so to say I am nervous about our next weight check is an understatement. As I re-read the post I wrote yesterday about this, I realized this has been a huge source of my sadness and anxiety. Sometimes I feel like no matter how hard Asher works, his body keeps failing him and I don't want this to be another case of that. And then, today I woke up and pulled Asher out of a completely dry crib- not a single ounce of spit up was on his pajamas or sheets. It seems like a silly thing to notice, but every single day since bringing Asher home, I have had to change his sheets (usually multiple times a night) because his reflux is so bad. Now, this is only one night so I am not exactly calling us out of the woods, but it is a huge step forward for him. I also came across this photo today from a few months back and I couldn't believe how skinny Mr. Guy was! We were so worried about his weight back then and now I see his chunky cheeks and thunder thighs and its hard not to be impressed with how far he has come (the onesies in both these photos are the exact same size). Next week we will meet with his GI team again and come up with a plan, so we are excepting (and humbly asking) for all prayers and positive thoughts that his progress is enough to keep surgery at bay and that we can continue working on one day being 100% bottle fed.
We also recently met with our Neurosurgery team. Asher's last MRI a couple months ago had shown another increase in fluid in the ventricles in his brain, so our surgeon was pretty confident that surgery was inevitable and we were just waiting on the timing. This last MRI and appointment showed that things had stabilized and we are back to thinking we may scrape by without surgery. I am very cautiously optimistic and we will hopefully know more with his next MRI in April.
This last visit with neurosurgery also reminded me of how lucky Asher and I are to be a part of the Children's Hospital family and more specifically the Special Needs Program. When we were first referred to the program I was really hesitant, mostly because no mom wants to immediately label their child special needs, but the program has turned out to be a godsend. They do a variety of things that are beyond wonderful, but most recently we met with our SN team and we talked about my biggest immediate concerns which at the time were brain surgery. The day of our neuro meeting, Kathryn, the NP on our team, made sure she was there to hold my hand, ask the questions she knew I wanted to ask but would likely forget and just be another person to listen to all our options and outcomes so I had someone else to talk it through with. This visit also reminded me (for the 6 millionth time this year) how lucky I am to have such a wonderful family. After offers from every sibling, parent and extended relative in a 100 mile radius, my dad came to appointment as well, and while thankfully everything turned out extremely well, I know I had the right team by me and with me in spirit that day that we would have been able to handle whatever our surgeon told us.
A few weeks ago Asher was given the loose diagnosis of cortical blindness. We know the nerves in his eyes are working properly, but it doesn't seem as if the messages are getting to the right part of his brain (which we knew was a huge possibility). I can't elaborate on this right now because in all honesty this is by far the hardest thing that I have had to wrap my head, and heart around, so far. I can't even explain why because I don't quite know, but the idea that my sweet boy will never see my face is just too much for me. It seems so silly compared to the other awful prognoses that we have had to endure, but this one just makes me sad- the mind and heart work in weird ways. So I will leave it at, this is another "wait and see" moment.
Asher's team now consists of a neurosurgeon, neurologist, endocrinologist, ophthalmologist, genetic counselor, gastroenterologist, dietitian, orthopedic surgeon, speech therapist, our special needs team, occupational therapist, the world's best pediatrician, developmental specialist and physical therapist. We wish we saw them less, but adore them all and continue to be so thankful that Children's is in our backyard.
All that *difficult* stuff aside, for where we thought we were going to be 7 months ago, Asher is doing so well. He continues to make progress in OT, he has finished the casting phase of his clubfeet treatment and is tolerating his boots like a champ (photo of progress below because holy crap things changed fast) and he has FINALLY started involuntarily smiling and makes my heart melt every time I catch him. He loves music, and, unfortunately for him, loves when I sing to him (even though I am a terrible singer). He sleeps through the night *mostly* and steals the heart of almost everyone he meets. He recently has found his voice and lets me know just how crabby he is when I take too long to pick him up in the mornings, but, overall, is the sweetest boy I could ever ask for.