The Latest…

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
Underweight

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!

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6 thoughts on “The Latest…

  1. Glad you appt went well and that there seem to be some diagnoses in print. Sorry for the additional blood work, never fun. Glad you had a great weekend away and that he had fun with his grandparents. Lucky them to have him for a whole weekend!!!

  2. I think, "Not yet!" is the best way to answer people's questions… It's the absolute truth and doesn't require any further explanation. If they probe any more, that's the opportunity to discuss his delays.A close friend of ours whose baby is a week younger than L started crawling at 6 months & every time we're out with her, the kids get compared. When people asked me if Liam was crawling, I'd always answer, "Not yet!" It's only been in the past week that I could answer, "Yes, he is."I'm so glad you guys had a chance to get away for a few days– Rob and I are doing the same thing this weekend. I can't believe I'll be away from Liam for 3 nights– we've never gone more than one. But it will be good for everybody, especially since this is probably our first chance since Liam was born and last chance before the next baby comes!

  3. I would just say "not yet" and leave it at that. My friend's daughter just started walking and she's three; she has Rett's and just does things on her own timeline. It might take him longer to reach milestones but the joy you feel will be like nothing else when he does. The weekend away must have been HEAVEN!!!!! Most days I am just wishing for an hour away! Good luck when seeing that genetic specialist.

  4. Two uninterrupted nights?!? JEALOUS! So very, very jealous! I hope the conference was productive and that y'all had a great time!As far as what to say, I'd say whatever makes you comfortable! If you're comfortable with the person, and a further explanation would make sense (someone you see frequently, not a nosy stranger at the grocery store), the expand. But your concern is what makes you comfortable, not what puts others at ease.

  5. I would just say, "not yet!" Isa didn't start crawling until she was about 11 months old so I got a lot of that too. Now when people see her crawling around they say things like, "oh, she's so cute. What is she, 10 months old?" And I'm always like, "nope, she just turned one". It used to bother me but now I just let it go. People are just trying to make connections and show interest, they don't mean to say hurtful things. I'm glad you aren't hurt by them, I wouldn't worry about them being hurt by your response. Hopefully they will be educated!Thanks for keeping us updated on Grayson. I hope he feels better and that any info you get from the new specialist is positive.

  6. Hi, I don't know you but stumbled upon your blog. I have a 2 year old and a 12 month old. Personally when that happens I would just smile and say "oh, he's a mess alright!" or something like that. Most people probably aren't actually trying to find out if he crawls, they just want to be nice (which you seem to realize!). I think as parents we'll run into those scenarios a lot. My current issue is that my son (the 12 month old) gets a lot of attention/comments when we're out (he's just a typical Gerber baby with big cheeks, blonde hair and blue eyes!). My 2 year old daughter is cute as a bug too, but she's bigger and just not that "adorable baby"…so I've been tying to decide how to respond when Grady's getting all this attention b/c I don't want to make someone feel bad for ignoring my daughter, but I don't want her to feel left out. Anyway, all that to say, our worry never ends, but hang in there!

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