|Concentrating so hard!|
Here are some updates from Henry's specialists...
James and I had questions/concerns about the possibility of seizures, which are associated with Dup15q. The neurologist told us what signs would indicate a seizure and what to do in the event that one happens. So far, Henry has not had any episodes that look like seizures. The neurologist also checked out Henry's moves and explained that his occasional jerky movement is a sign of his immature motor skills. She said it's like his brain is figuring out which movements are needed to do what he wants to do and he still has lots of "extra movements" like a younger baby. This was about a month ago and I already see less of those jerky movements.
ENT (Ear Nose & Throat)
Henry's ENT diagnosed him with acid reflux in December when he found that Henry's throat was very irritated because of the acid. Henry has been taking Prevacid for the reflux since then and it is definitely helping. The ENT, Dr. Chang, noted that Henry's voice sounds normal now that the reflux isn't irritating his throat. He also said that reflux usually improves on its own in older babies: as the digestive system grows stronger the sphincter can keep the acid from going back up. So he said we can expect Henry's to improve in a few months and then we can wean Henry off the medicine. I said, what about his hypotonia? - will that prevent his digestive system from improving? And Dr. Chang said that Henry's hypotonia is not that bad. This is something we have been consistently hearing, and it is always reassuring to hear! His hypotonia is not severe. He is doing ok and he will continue to get stronger.
Dr. Chang also talked to me about the results of the sleep study. They did observe a small degree of sleep apnea, but his oxygen levels remained high throughout the night so Dr. Chang doesn't feel any treatment is needed. I agree. Henry generally sleeps fine and we don't notice any snoring anymore.
Henry had an evaluation with a PT named Anna and she used a standardized evaluation to determine the degree to which Henry is or isn't delayed in motor development for his age. In order to qualify for therapy (I guess its a CA guideline?) he has to be 33% delayed... I have no idea what that means in practical terms! I guess it's like, if he's 6 months old he would have to be functioning like a 4 month old? Which actually seems about right.
Anna did some exercises with Henry and checked out his movements and muscles and stuff. Unfortunately she wasn't able to give us the evaluation results immediately, she needed to take her notes home to score it and we are still waiting to hear from our regional center case worker whether or not he qualifies for therapy. I'm not sure whether to hope he qualifies! On the one hand, it's great if he's not that delayed... on the other hand, I want the help for him!
Like Rosie did at Henry's regional center evaluation, Anna showed me some exercises I can do with Henry and some ideas for how to support him using pillows to help him sit up.
Feeding Specialist (Occupational Therapy)
We had been trying to get this appointment for MONTHS. We really needed it when Henry was switching to bottle feeding, but at least the timing worked out that the OT was able to help us with introducing solids. Her name is Dr. Van Boldrick. She observed Henry drinking from his bottle and talked to us about what to look and listen for to tell if he is drinking efficiently. She gave us a different bottle to try with a smaller nipple that she felt would be easier for him. Seems the same to me...
We waited to give Henry his first solid food (if you can call prune puree "solid" ;) at this appointment with Dr. Van Boldrick. Because of the hypotonia, we just didn't know how Henry would handle swallowing something thicker than milk. So, to be safe, we waited until we were with the OT. And Henry did awesome! He opened his mouth for the spoon, used his lips to scrape the food off, and there was no choking or gagging or spitting at all! What was I worried about?? James and I both noted that it went so much better than the first time we tried to give Calvin food!
Dr. Van Boldrick said that since he did so well, she recommends offering him purees once a day. She said to give him whatever amount he is interested in eating within a 5-15 minute window. She also said that we need to move on to introducing thicker purees when he turns 9 months. She explained that babies need to learn to get used to the textures of food in their mouth at certain milestones even if they are just spitting them back out. I wish we had been told that when Calvin was a baby! But he's a pretty good eater now... most of the time :)
Our cousin Hartley helped me get some pics and a video of Henry eating!
I'm very happy to report that Henry is doing so well :) It's such a relief to be able to see him getting stronger and starting to be able to do the things we hope for him. We watched him go from kicking a little, to starting to raise his legs up, to being able to grab at his knees, ankles, and finally grab those baby feet! It was a slower progression than with other babies, I'm sure, but it was still amazing to see. One of these days I'm sure he'll even get those toes to reach his mouth! I can feel him holding himself up stronger when I carry him and I see how much better he sits propped up. I know he'll be able to sit on his own soon enough! He is getting there! During tummy time he can prop himself up on his elbows and reach out for toys in front of him. He is still rolling from front to back, and from his back he can still only roll onto his side, but he is working on it and one of these days I know he'll roll all the way over!
I feel like this time around it has been easier for me to let go of the idea that Henry needs to catch up or keep up with other babies his age. With Calvin it stressed me out more, but then, he was my first! With Henry, I feel like the bigger worries are farther in the future and I'm trying not to look that far ahead because there's really no way to see what we will find there. For now, I know he needs his own time and his own path, slow and steady, little by little, with some help and encouragement and a lot of celebration.