Developmental Growth v. Physical Growth

I haven’t written anything in forever, not because I’ve forgotten about this, but because there really isn’t much to report. Our lives are the epitome of mundane, and for the most part that describes Eli’s current healthcare routine as well. With Eli’s particular diagnosis the first two years are probably the most dangerous, and we’ve finally passed that milestone. The things we worry about the most now are his calcium levels and getting sick in general. It doesn’t occur to most people, but even though Eli isn’t immunosuppressed, his immune system is not on par with his peers. He’s so much smaller...closer to the size of a one year old, and that means his lungs, nasal passages, etc. are smaller too, so he is more susceptible to illness than other kids his age. His calcium relates to his hypoparathyroidism. I don’t know the exact statistics, but hypoparathyroidism is quite rare on it’s own. It’s especially rare to be born with it, rather than to develop it as a transient illness later (usually late) in life. Eli has taken medicine to regulate his calcium levels since he was 10 days old, and while he has FINALLY started producing some parathyroid hormone on his own (for the first time in his life), there’s no guarantee he will ever produce enough of it to go unmedicated. This should only really be an issue when he’s sick or stressed, but in those cases where I have seen it become an issue in other KCS2 kids, it’s serious enough that I worry constantly every time he’s sick and I have to consciously stop myself from demanding bloodwork and fluids “just to be safe.”

The biggest unknown facing us is whether or not he will need another skull surgery in the near-ish future. He is actually the first person with Kenny Caffey to have craniosynostosis as well (I feel weird “bragging” about that kind of stuff, but hey, if you can’t join ‘em, beat ‘em...right?), so everything regarding his skull regrowth falls deep into unknown territory. When they did the surgery, they removed a piece of skull about the size of a credit card on the crown of his head. In most kids who have this surgery, the skull regrows and closes the same way a normal soft spot closes. However, since one of the symptoms of KCS2 is very slow/delayed closure of the soft spot, his regrowth has been minimal and he still has a large soft spot on the back of his head. It isn’t dangerous, and his neurosurgeon hasn’t recommended that we limit any activities, but it’s still NOT fun to touch and I do get a little paralyzed with fear anytime I think he’s about to smack the back of his head on something. We go back to the neurosurgeon in August to do an MRI and talk more about the possibility of surgery. At this point I’m just planning on him needing a second surgery, and if we don’t need one I’ll be pleasantly surprised. Plan for the worst, hope for the best.

As far as developmentally, he is still behind in his gross motor skills, although according to the recent specialist we saw he’s not as far behind as I imagined. It probably doesn’t help that my best friend’s toddler is apparently just freakishly advanced with his gross motor skills. And Eli definitely makes up for the gross motor skills with his verbal skills. I think I’ve recently been focusing entirely too much on determining exactly HOW advanced he is, but after two years of watching other kids hit milestone after milestone and feeling jealous and hating myself for feeling jealous...I’m ok with being a little too proud of him for a while. I learned to read at a super young age and I was always fascinated with letters and reading, and I’d be lying if I said I haven’t been trying to push that on Eli a little bit. Luckily he seems to love it just as much as I did, because his favorite things to do all revolve around activities that could be considered

 educational. He spends his days pointing out letters and numbers, “reading” books, telling us what color everything is, counting to 20, and singing his ABC’s. And frankly I don’t know where he picked up half of it. He randomly started counting to 100 by 10’s last month, and I DEFINITELY did not teach him that. I think a big part of his interest lies in the praise. He loves being the center of attention and having everyone clap for him...I really don’t know where he got it, because Will and I are such introverts. Generally the first question I get is “How old is he? He talks so much.” (because he’s so small I assume most people think he’s just a genius one-year-old), followed by “Does he ever STOP talking?” to which the answer is...no, not really.

As he gets older and wants more independence, I’m starting to focus on accessibility tools. There are so many things that just never cross most people’s minds. For example, it’s really hard to potty train a kid who is too small for 95% of the common potty training gear. I want him to learn about responsibility and chores at a young age, but most of the lists of age-appropriate chores include things he just isn’t able to do. He can’t reach the table to set his place or take his dishes away, he can’t reach his laundry hamper to put clothes in there, he can’t reach high enough to open the fridge or put away groceries...so it’s hard. I would love to start getting him some mobility aids to help him around the house, but lots of things are surprisingly expensive, and even more so if I need to have it custom made to his height requirements (I’m looking at you, custom made learning towers on Etsy). I want to move him to a toddler bed soon, but I don’t know if he would even be able to get into it on his own.

And with all of this talk of independence, I can definitely see how frustrating it is for him. He is mentally old enough to want to climb on the couch and sit there, or sit at his own activity table to color...but he can’t really get on the couch without help, and I still haven’t bought an activity table because all the chairs are too tall for him to get into himself OR they cost so much more than other options I just haven’t been able to pull the trigger on buying. It’s one more thing most people don’t think about...not only are his healthcare costs considerably more than other toddlers (we hit our deductible by March this year, if that tells you anything), but the amount of time that goes into researching every purchase, and the amount of extra money spent on getting what is sometimes the ONLY option that will work for him, is significant. Some LPs and LP parents don’t do any real accommodations because they believe it’s better to just adapt, since in most cases LPs have no choice but to adapt when in public or in other people’s homes. I totally understand this thought process and it’s completely valid, but for me, I want to make Eli’s home the ONE place where things are as easy for him as they can be, accessibility wise. He’s going to grow up being very aware that the world outside wasn’t built for him, so why not make his home as much of a safe haven as possible.

That’s really all...I don’t have an interesting note to end this on. Just...if you happen to think of us on August 22nd , cross your fingers he doesn’t need to be sedated for his MRI that his neurosurgeon continues to hold off on more surgery.