Friday, December 9, 2016

A Way To Live Your Life

We have been on this journey with the boys for over 8 years now. Longer if you count from the moment the perinatologist told us the boys were inside the same amnio sac and that there would definitely be "problems if they made it". Well, they made it and we've been on quite the ride as you can tell by the almost 1,000 posts on this blog from over the years.

I planned on having Jax see a neurologist as a final closure appointment. I assumed the doc would look him over and tell me that 'it is what it is' and we're doing all we can and send us on our way. I set this appointment up months ago after meeting with the pediatrician at the yearly physical in August stating there were a few symptoms bothering me. She thought we already saw a neurologist, and after I got home that day, I looked back in this blog and realized that he did for a specific issue, but not a comprehensive exam. (Long story)
Anyway, we did go see a neurologist for a comprehensive exam last month and after a review of past and present issues, a physical exam and viewing of dozens of photos that I brought along, the neurologist went to get another neurologist to come in and do the entire thing over again. My quick appointment ended up being hours long.

The doctors sat me down and said that the brain bleed that Jaxon had at birth is what's affecting his body. This 'stroke' was caused by the lack of blood flow and oxygen during the perinatal time - either the weeks leading up to or at birth. We knew he was struggling to grow and develop because of his knotted cord, which was why I was in the hospital for those two months. We knew he didn't breathe for at least the first 7 minutes of life because of his apgar scores during the crash c-section to get him out to resuscitate him. And we did know he had a brain bleed that 'resolved on its own'. The problem here, was that we took the term 'resolved on its own' to mean it didn't do any damage and we could move our worries onto the dozens of other issues we were facing with two preemies in the NICU.

Apparently, 'resolve on its own' means there was no need for surgical intervention, but the stroke happened and it left a lesion. The grade of the bleed was a 1, so the chances of it causing issues was low, but you don't know until the child is older - which I also didn't know these things were diagnosed later in childhood. With a child like Jax, many of his issues were attributed to his very low birth weight preemie status. Jax had an MRI a few weeks ago to confirm the area and type of damage since birth.

The final diagnoses given are mild HIE (Hypoxic-Ischemic Encephalopathy) and Congenital Hemiplegia. The lack of blood flow and oxygen caused the HIE, which caused the stroke (IVH - brain bleed), which then caused the hemiplegia. Hemiplegia (or Hemiparesis) means that one half of his motor control has been affected by the brain injury - his right side and obviously his face/throat/GI system. This is under the umbrella category of Mild CP.

In hindsight, the pieces of his history make sense to get these sort of answers. He had torticolis and couldn't hold his head up while it was bent to the right side. He only used his left hand to grab items, he was still not walking, talking or eating at the age of two. We got him into orthotic ankle braces and he used them until the age of 6 to help keep him steady and straighten out his walking-gate. His lung disease and constant vomiting for years. And although he's had improved global development through the years with countless therapies, we see new things pop up as he ages.
Now that he's older and school aged, he requires an IEP for special ed services, which keep increasing each year and now with the recent diagnosis of ADHD and the learning disorder of Dysgraphia looming on us, the docs are really taking notice.

But beyond all that and then some, our greatest fight has been Jax's oral motor control issues with eating. While he can eat, since the age of 4, he can't eat long enough. He has some good days, some bad days, but mostly just ok-days. His typical meals consist of a few bites and then he drinks his nutrition (Pediasmart) and then gets a supplemental feed through his feeding tube while he sleeps each night. He has improved greatly over the years, but the process has slowed and it's creeping along. He still has very little desire to eat, which makes it tough as well. He's been in private feeding therapy his entire life for more than just eating. He's been trying to learn how to spit and how to handle a tooth brush all the way back or to use his tongue correctly and drink from water fountains.

The most common question that people ask Jason and I is if and when he'll get his tube out. We never imagined he'd still have it to this day, so we've accepted the new answer of, "we hope, some day".

He's been referred to the Rehab clinic at the hospital where they'll assess him for any needs they may be able to help with. I'm hoping for some help with his endurance issues that prove troublesome when walking while on vacation or a long sports game. He's very aware of his right hand placement now (called Flexor Posturing) and he's been holding his hands together or using pockets for photos now. The rehab clinic will be the ones who place the exact type of CP, so our journey will continue for awhile.

We've been processing this over the past few months. While these are just answers, it has been bitter sweet. We've dreamed of answers for years and it almost feels that when we've accepted to not receive any, they've suddenly flooded in. Jax has been a force of nature in our world. He is a daily reminder of how blessed we are. He has his mind and mobility and while not everything on his body works easily or perfectly, he certainly lives an amazing happy life - what more can we ask for?

I would be lying if I said it hasn't been hard to accept this permanent answer. I can say through experience that taking the time to process, and allowing the tears and prayers to take over for awhile, allows acceptance and strength to come. We're right in in the middle of that somewhere. I'm looking for my grace.

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”     -Albert Einstein

1 comment:

ferfischer said...

Hugs! It's always hard to hear new stuff even if you've known it all along. We see rehab and they are awesome, but the progress and appointments and things to try are slow. They are doing great - I always read. (My "typical two" and apparently my husband all have ADHD, as does number four, I'm pretty sure, so I can empathize with that piece as well).