If I were to list everything that is considered "abnormal" with Nathan's body...that is, everything that has been formally diagnosed, not even mentioning those "things" that docs think may also be happening but haven't quite hit the gavel and diagnosed them quite yet...most of you would not believe it. Nathan has something abnormal in almost every organ system in his little body. And yet, his issues pale in comparison to so many other mito kids out there fighting this battle. This disease wreaks havoc on their little bodies all while they remain looking "so good" on the outside. That's why I say that most of you would not believe how much Nate's body suffers...because he does indeed look so good most of the time.
We have been given troubling news about Nathan's health for the entirety of the almost 3 years that he has been alive. Some days, the new information is hard to swallow...while other days, it rolls off our backs with no trouble. I explain to others that sometimes it feels that we have been medically shell-shocked...already facing some of the toughest circumstances, there isn't much anyone can tell us that can shake us up that we haven't already been told before.So when Nate had a formal evaluation with our school system last week and had some areas where he was clearly developmentally delayed, I was shocked at how much it seemed to tear at my heart. The phrase "developmental delay" has been written all over much of Nathan's medical information over the past 3 years. Honestly, I have rolled my eyes at that phrase thinking "My kid is NOT developmentally delayed." Sure, he has had PT since he was 6 weeks old and OT for a year and a half...but he is so smart! I am ashamed to say that it took two recent evaluations for me to finally realize that developmental and cognitive abilities are too completely different things...and yes, my son is a bit developmentally delayed.
The great news is that from the intelligence parts of the tests, Nathan scored way past his age. He is very bright and shows that in his language skills and knowledge of many other things. Anyone who has ever seen him work on an iPad will back me up on his incredible intelligence. However, he is quite behind in fine motor skills. His visual motor skills are landing in the 16%, which puts them at around the range of a 25 month old. He can not cut with scissors, string beads on a string, stack 8 blocks without them falling, or dress and undress himself. His fine motor skills are simply not refined enough to be able to complete these tasks. He also can not physically show people that he is 2 or 3 years old by holding up his fingers. He can isolate his pointer finger, but his hands are too weak and hypermobile to be able to keep 2 or 3 fingers in the air while holding down the rest. I would have never known this until recently. Watching your child being intricately critiqued on a developmental level is a bit difficult.
All of that said, we have had some amazing things happen lately as well. All of the evaluations as of late have been because Nathan is aging out of our early steps program. When the child turns 3, they are then turned over to the school system and usually integrated into a pre-k program at a local public school for teaching and therapies. There is a different plan for Nate though. Through the school system, Nathan has been labeled as a "medically fragile" child. In all honesty, I cringe every time I see or hear those words in regards to him. I do not see my son as being "medically fragile". For those who know Nate, unless he is sick, the word "fragile" doesn't seem to fit that rumble, tumble boy at all. I can introduce you to loads of other mito kids I know that are medically fragile, but I do not put Nate in that camp quite yet. I do see him as "medically complicated", but fragile...no.But like I said above, he is quite complicated in a medical sense. Barring the continuous oxygen and multiple daily meds, Nathan is susceptible to rapid and serious decompensation with even minor illnesses. We have seen that many times. We have also seen the destruction that major illnesses have on his damaged organ systems long-term. When Nate gets sick, it is always scary...we never know which way he will go or if he will have lasting effects from it. On top of that, he has daily exhaustion that is unlike most 3 year olds. There are many days where he will wake at 7 and go back down for a 3 hour nap at 9. Some days, he still takes 2 naps a day. And then some days, he runs around like a maniac on caffeine. It really all changes day-to-day.
Due to all of the above and everything in between, it has been decided between us, his caretakers (therapists, docs, etc), and the school system that the hospital/homebound program will work best for Nathan during this time. This placement will last indefinitely, due to his medical diagnoses and issues, but we can always reassess the situation if he expresses a desire to attend school in the future and is medically stable at that time. He has been approved for 6 hours of instruction a week at this age, but there is no way he would ever last that long each week with structured activities. So for the time being, we are starting out with 3 hours a week...1 hour for 3 days a week. His teacher is a Pre-K teacher from a local elem school here and has been praised numerous times by our EP team. I can not wait to meet her in a couple of weeks.I can't help but feel that a chapter of our lives is closing. Nate is no longer seen as a baby, but a preschooler. We are having to say goodbye to those in early steps that we have welcomed into our home and loved for the past year and a half and will have to welcome and get to know new ones.
"This is a journey". That's the phrase that has popped into my head numerous times today. It's a journey that is difficult and rewarding...sad and exhilarating...heartbreaking and comforting. It's not a bad journey...but you can't necessarily call it a good journey all the time either. It just that...a journey.