My child ENABLES!
For any of our new readers, meet Noah. You can read all about what he has going on here… but he has a genetic condition named L1 Syndrome. He has severe hydrocephalus – his head birthed at 47cm large, and now at 10 weeks old, it has reduced to 41cm. He was shunted at 2 days old, and he has complete Agenesis of the Corpus Collosum. His thumbs are adducted (pulled in to his palms and cannot extend) and he has some physical gross motor delays at this time. We expect both physical, mental, and educational delays as he gets older. Many can related to Cerebral Pausey or Severe Autism… and for those of you that understand those conditions, maybe you can feel a bit more connected to Noah as he grows. All of the other updates about his NICU stay and since are linked in order at the end of this post.
This past week was a doozey! We had 11 appointments scheduled in 5 days, and it was reduced to 9 appointments in 3 days which was somehow much more tolerable. On Tuesday, we woke up bright and early for a conference with the county’s disability office. What a challenge that was. To call my son disabled. Honestly, I don’t really give two cents at this point what the state thinks he is or what they want to label him as. He may be categorized disabled, but he is an enabler. He gives me strength. He gives Kara confidence. He gives daddy wisdom and honesty. He ENables a billion times over what he DISables.
Then, physical therapy came by the house. Kara, Noah, and I all adore her. Noah is starting to fall behind in some caterogies of gross motor movement, but he improves each week. He cannot find his hands so we work on midline still as our primary exercise. All other exercises revolve around midline. This corresponds to occupational as well, who came Wednesday mid-day. He loves laying on a ball on his belly, despite HATING tummy time. I think it really helps him stretch out his back in a way he can’t do that in any laying or holding position. Both therapists complimented my persistent and careful positioning and say his head is really looking good. His pediatrician told us that over half the time, misshapen heads would have started by now…. though we aren’t really in the clear yet. We need to continue our persistence through four months before relaxing a bit.
Tuesday afternoon we headed into town and were fitted for custom thumb splints at the othodics and prosthetic hanger clinic. I’m wary. The girl told us she never had a patient with adducted thumbs, none the less an infant hand issue as severe as this. There were several words on the order form she didn’t know what were, and this makes me nervous the splints will come out wrong or measured incorrectly. They are so expensive we will only be getting him one pair for infancy. So, lets pray if misfit is their error, the fix it! And lets pray they help his thumbs extend into the proper position for grasping and lifting objects as he continues growing.
Wednesday morning in addition to occupational coming for a visit, we headed down to the hospital for a swallow study. Noah chugged down that barium like no one’s business! Yuckkko! He isn’t aspriation, which is great… pace-feeding with the bottle and nursing for an extended time will help correct the issue. The issue is a weakened epiglottis. His body wants to reject the fluid going down the wrong pipes (yay!), but the epiglottis is still too weak to function properly. So, we exercise it! Noah is nursing really well. Yesterday he exclusively nursed from 1:30pm – 11:30pm, and today he’s nursed with only one bottle from 12:30pm – now (9pm). I’m so proud of where he’s come from and where he is now!
At the pediatricians office, we post-poned all vaccines as we enter a delayed vaccine schedule for the time being. We will have an appointment in the next week or two for two of the first four. His weight has increased; my baby is now 10# 14oz, and has lifted out of the 6% range to the 13th%. He’s still pretty small, but he’s growing properly and that is super important to me! He’s three months old in another week, and can still wear a nice portion of his newborn clothing although we’ve migrated into a 0-3mo as well. None the less, he is perfect to me.
Today we relaxed in the sunshine, he loved it and soaked up that good vit. D. This coming week is a big week as well, so hopefully we’ll have some more sun soaking. On Monday, we head to Charlotte for his second hearing screening. On Thursday, we head back to Raleigh for his MRI on his head and to check his brain development. Send us prayers and good vibes and we’ll keep you guys updated.
What is Wrong with Our Baby Boy?
Baby Boy Eagle Has A Name! He’s Born!
My Two Day Old Warrior
Totally In Love, Noah’s Improving at 5 days old
Noah’s Moving On Up
There’s Hope In Progressive
The First of the Setbacks
Back on the Road to Recovery
Slow and Steady Wins the Race
Steps Toward Home
Noah’s First Week Home
The Therapy Journey has Begun
7 Weeks Alive