Saturday, January 12, 2013

Past week's appointments

After our first full week back in the routine of work and appointments, I'm finally getting a chance to update.  Here's what went on this week:

Tuesday afternoon we had an appointment with Ryan's eye surgeon, Dr. Reiser.  She was just checking him as his 3rd follow-up post surgery, and now we will start going to Dr. Sami for our follow ups instead.  She was pleased with how things looked in his eyes.  She had a spinning toy she used to see if he would track and follow with his eyes, and she said he was definitely showing improvement, which is what we are noticing at home as well.  She said he's definitely "directional" meaning he can move his eyes in the general direction of the toy, but he doesn't quite focus in on it yet.  We are noticing at home that he's noticing more of his toys and our faces, so we are thrilled and hopeful that with time and practice his eyes will continue to improve. 

On Friday we had a visit scheduled with a lady from the Braille Institute, but she had to postpone.  She's going to meet with him once every other week to work on visual exercises.  She's met with him once before, and we are looking forward to having him start up with that again.

Physical Therapy:
Ryan had both Feeding and Physical Therapy evaluations back in November, but CHOC hasn't had any openings for either until just recently.  He is qualified for 2 times a week for each therapy, but so far we are only able to get physical therapy once a week.  But we'll take what we can get!  He missed his first appointment with PT because he was still in the PICU last week with RSV, so this Thursday was his first visit.  She wasn't able to do a lot with him because she needed a clearance letter from his pediatrician after his RSV stay, which I was not aware of.  But the visit wasn't a waste.  She still got a lot of information about Ryan and even showed me ways to help support his lower back/hips to help him sit up without arching his back, which is his natural tendency.  She was impressed with how well he is holding his head up and steady once I got him sitting up on my lap.  He's definitely getting stronger!

I also spent a lot of time on the phone with our insurance case manager and some local therapy places.  I'm hoping that one of them will be covered and have some openings for us, especially for feeding therapy.  It doesn't seem that CHOC's feeding therapists will have any openings any time soon, and I don't want him to miss out on anything.  Hopefully one of them can get us in sooner!

Ryan has been doing great and growing on his feeds.  I've been talking to Dr. Ho quite a bit this week with trying to reschedule his Mic-key button placement surgery and adjusting his diet to accommodate my dwindling freezer stash of breastmilk.  I finally stopped pumping over the break because it was just getting to be too much with everything that was going on.  We've been blowing through the supply in our deep freezer pretty quickly, so now we are giving him 4 or 5oz of breastmilk with 1oz of neosure each feed.  In a few days we'll switch it to 3 or 4oz milk/2oz neosure and so on.  That should stretch out my supply of milk for a few more weeks, and help his stomach slowly adjust to the formula before we switch him over completely. 

In general, we are so impressed with how well he bounced back from the RSV.  He seems healthier than ever, and he's getting so expressive!  It's wonderful to see his smiling face light up every day now.  He really is a funny little character, and we just feel so blessed to have him home with us every day.

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