Yesterday we went to the orthopedic doctor, who specializes in spines, at our children's clinic.
I had taken J to get some cervical spine x rays early in March, so the good news there was our appointment was much less painful than if we had had to do that too.
I knew going in that his spine wasn't in horrible shape because the radiologist report came back super fast and the genetic counselor called me that day to let me know that it didn't look bad, not great, but good considering his condition.
And that was pretty much the word yesterday. "Considering he has a skeletal dysplasia, his spine looks really really good!"
I feel kinda of blah about that because there's another * to his life, "good, but..."
I know it could be way worse, so no complaints, just meh.
His neck bones have some misshapen pieces and some good pieces. His spine has a good deal of speckling on it, and I finally understand what that means enough to explain it to you. There are spots on several of J's bones that never hardened into bone from cartilage, which is what all babies start out as before the bones harden en utero. So his genetic make up has a faulty piece that forgot to tell certain pieces of his cartilage to turn into bone. Most visibly, his nasal bridge.
The doctor said that if we could pull J's spine from his body and look at it, we wouldn't think it looked different from any other skeleton. It's on x ray and other imaging reports that we see the difference because that's where you see cartilage look different than bone. I think. Haha...bare with me as I try to explain a super rare condition in plain English.
So the prognosis is that there seems to be good enough space for his spinal cord to continue having freedom from compression as J grows. That's vital to continued use of his limbs and trunk, and also important for feeling, no tingling, no pain, etc... It also is a "wait and see" situation to see if he'll develop scoliosis. Which some CDPx1 kids do. The doctor also said his height situation (little person or not) will remain to be seen. For now he is hovering average length, but I guess that could drop off at any time, so more waiting there.
For now, we just support his head and neck--don't let it flop around. The doctor was very impressed with J's improved head control, and that he's meeting normal milestones.
J won't get to play contact sports or do much dare devil things...if he knows what's good for him... Which still leaves some athletics, but not the dangerous ones, like soccer or water skiing or football. Just running, swimming, bowling, fishing, etc. Which those are super fun anyways...just gonna be tough explaining to a little boy why he can't do those other ones. Especially coming from a paternal family of water skiers.
Anyways, so the appointment was shorter than expected, so my husband and I utilized the babysitter time to go get a treat. Not that our guts need it, but it was a nice little date courtesy of groupon. Before, taking a baby out with us wouldn't have been considered a date...but with two kids, having the baby at a frozen custard place, definitely seems easy enough to call it a date. Oh how things change ;)