Thursday, January 31, 2013

PT, FT, and Eye Doctor.

This morning began our new routine of two back to back therapy sessions for Ryan on Thursday mornings.  We've been doing Physical Therapy (PT) for a few weeks now, but today we finally got to start the Thursday Feeding Therapy (FT) appointment that we were supposed to begin last Thursday when we were hanging out in the CVICU.  Here's the update:

PT - The physical therapist we see was at a conference last week and was sick the week before (so we had a sub), so today was the first time she's seen Ryan in 3 weeks.  She was impressed with how much he has changed in that time.  At our last visit, he was just getting over the RSV, so he was still a bit groggy/lethargic, but today he was so excited to be there!  She asked me to catch her up on where he is and what our concerns our.  I told her that he really seems to be getting stronger, he's getting so close to sitting up on his own without support.  Of course, he can't get himself there on his own, but if we sit him up or pull him up by his arms to the sitting position, he'll sort of balance himself there without much support for a few second.  I told her that my biggest concerns are his delay in holding his head up and the way he flails/locks his arms out when I'm holding him.  She did a few exercise with him and watched his arms and said that she was actually really impressed with his range of motion in his arms.  He brings them to his mouth and reaches out to grab and feel my hand, even if she's holding his legs in a certain position.  Apparently, it's important that he can move his upper limbs independently from his lower limbs, and he does. :)  She thinks that the locking of the arms is more of a stability issue.  He's still trying to figure out how to keep himself balanced, and his natural habit (which we are working hard to break) is to arch his back.  When I hold him, I prevent him from arching, so he's basically using his arms as a stability measure since I won't let him use his back.  She said, "He's a smart boy, your son.  If he can't do something the way he wants, he finds another way to get the job done."  I admit, it was a proud mommy moment for me!  He had so much fun exercising, he actually passed out in the therapist's arms about half way through the session.  It was too cute not to take a picture.

FT - Our usual feeding therapist was out sick today, so we had a nice surprise because we got to see Jen who was Ryan's therapist when he was in the NICU!  It's so nice to have him seen by someone who knows him and knows his history.  She was able to get him going with some rice cereal right away, and he did great!  He still isn't having anything to do with the bottle.  It's so funny, he'll suck on his paci all day long, but if you try to put a bottle nipple in his mouth he acts like you're trying to poison him.  When he refused the bottle, she tried putting some of the formula on his pacifier to allow him to practice tasting and swallowing it, and he did fine with that.  She also gave me some tips on how to use pressure on his cheeks and lips with various textures to get him desensitized to feeding and reduce his gagging.  His gagging has actually improved A TON since he was first evaluated in November, but he definitely responded well to the sensory input on his cheeks/mouth before she started the feed, so we'll continue with that at home.  I also roasted up some squash and yams today and blended it into a really thin puree so he can try some new flavors.  So far he's only had rice cereal and apples, so hopefully he'll like this new stuff when we try him with it tomorrow!

Eye Doctor:  After school, Dave took Ryan to see Dr. Sami because he will be the doctor who will regularly follow Ryan, and Dr. Rieser told us that our next follow up should be with him.  So, just as Julie from the Braille Institute had predicted yesterday, Ryan didn't quite demonstrate all of his visual capabilities.  Dr. Sami does want us to go ahead and order another set of contacts to replace the one that's lost, and he doesn't want to patch the eye as we had been told he might.  He said we might reassess later down the road and do it then, but for now he doesn't need it.  He didn't feel like he was tracking very much, but he did see light.  We think he is tracking pretty well, and he's starting to look at and focus on our faces if we get up close to his face.  So, we'll go back in 3 months and this time we'll dilate his eyes for a real exam, and hopefully by then he'll continue to improve by leaps and bounds!

Thank you for all the love and prayers!

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