Well, we all survived the weekend. Ryan and I attended a marriage conference in Kerrville- we had some good talks about the future of our family, slept two uninterrupted nights without dogs in our bed and a baby monitor by my ear, and got a private tour and wine tasting at a vinyard/winery near Fredricksburg. Grayson had a great time with his Grammie and Grandaddy and even slept 13 1/2 hours on Friday night! He does have some kind of a bug- not sure what, but he has a rash on his face, loss of appetite (grrr, I need this kid to EAT), and has kept me very busy with diaper changes today (ick). We saw the pediatrician last Thursday because I was worried he might have an ear infection- nope. We will see her again this Thursday for his 9 month checkup- my goal is to not have to see her between last Thursday and this Thursday. We’ll see.
We had our follow up appointment with the neurologist today. The good news is G’s EEG and chromosomal bloodwork are normal. However, Grayson still has some of the newborn reflexes, indicating something is not working correctly in his nervous system. The doctor ordered MORE bloodwork (grr) and wants us to see a genetic specialist. Hey, what’s one more specialist, right?
We got printouts of all the paperwork- orders for the bloodwork, blood results, etc. One of them has Grayson’s diagnoses, according to the doctor. Here’s what it said:
Encephalopathy, Unspecified (something is wrong with his brain, but we’re not sure what)
Muscle Weakness, Generalized– upgoing toes persist
Other Cognitive Anomalies of the Nervous System– white matter delay likely explains neonatal feeding difficulties and current delays
Interesting. And pretty accurate I think. Grayson’s “upgoing toes” are pretty funny- his little toe just sticks our from the rest of his foot- bizarre.
I’m also struggling with something else. Now that Grayson is 9 months old, everyone who asks how old he is and doesn’t know his “story” asks if he’s crawling yet or says something like, “oh he must be crawling all over the place now.” Mmmm- not even close. Most of you know he’s not yet sitting up on his own, although we are working really hard to get there!
So when people ask, or comment, on crawling, I don’t know what to say. It doesn’t bother me or make me feel bad, but if I tell them he’s got some developmental issues, I feel like it makes them feel uncomfortable- like they shouldn’t have said anything (and I don’t want that. I love when people ask me about my baby). So should I just say, “Not yet” and leave it at that or should I say more? I mean, realistically, he’s not going to be crawling for quite a while, and then there’s walking, and talking, and all other big milestones that we just have no idea when Grayson will meet.
But he will get there- he will!