Back the Old Routine

Well, the kids are back at school, and Mac is back to his normal after surgery.  This recovery took a lot longer, but we are glad to be seeing the old Mac back in action :)  He is back to sleeping in his regular patterns again, which is really nice.  Developmentally, he's right where he left off before surgery.  We are back with his usual therapists, and he's working hard. 

Right before we left the hospital, a speech therapist came by and was concerned by some of what she saw Mac do while he was eating, so we snuck in for a really quick swallow study before we left.  Basically, they gave him a bottle of barium in front a live action x-ray machine, and we could watch how he moves food.  The concern was that he might have been aspirating food (sucking it into his lungs), which is obviously a very dangerous situation.  Because it wasn't a full swallow study, we didn't get a full picture of what's going on inside, but we did find out that he didn't aspirate at that time, which is great news.  He does have a delayed swallow (where he waits until the food is at the very back of his throat to swallow, instead of in the middle like a normal kid), and it takes him 2-3 swallows to get one suck of milk down.  And, the best part of all...the milk is splashing up into the back of his nose when he eats.  This information explained a lot about Mac's eating behavior, and I wish we'd had the time to complete a full study.  We may do another one at some point, but not right now.  As it is, it just gave our speech therapist at home some ideas of how we can help him more with eating.  Our main goal is to get him to take larger volumes at each feed in order to pack some more weight on him, as he has now been deemed "Failure to Thrive".  We've also started working on baby foods, which isn't going super well.  We also started bumping up the calories in the milk he gets even more than we were previously doing.  He did have a great weight gain from his last appointment, but is still well below a healthy level for his gestational age. 

We also had a follow up with his neurologist last week, which went well.  She spent a lot of time getting to know Mac, which I appreciated.  She gauged him to be at around 3 month old developmental level, which wasn't really any "new" news.  She observed that while he has great leg strength (and actually has high tone in his legs) his arms, trunk, and neck are considered low tone, so we are working on that.  I hadn't realized that a kid could have "mixed tone", but apparently it isn't that uncommon amongst the other hydro kids I've heard about.  She wants him to stay on his seizure medication until he is 2 years seizure and revision free.  Sheesh!  That sounds like a lifetime away :), but I'm sure it will happen, and I will be surprised at how quickly we got there.

So really, a whole lot of new terms to tell us what we already knew!  He doesn't like to eat, he's loves to bounce, but can't do much with his arms!  We just made it official :)

Hope that you are all doing well!  Thanks so much for checking in :)