Tuesday, January 26, 2010

clinic update.

i'm finding it harder to update these days! when i started this blog, i had every intention of updating after every appointment he had.. but now that we have at least one appointment every week, it's getting a bit difficult! sorry!

so, last wednesday was spina bifida clinic at chop. we had a hefty schedule for the day.. we had to be at the sedation unit by 8:30 and then he would have his ct scan at 10.. while we were waiting in the sedation unit, the nurses saw how "well behaved" justin is and they suspected they could get him through the scan without any sedation. so, we tried it.. and he did awesome! i was so excited we didn't have to have him put to sleep for such a quick procedure. we were able to go into the room with him and the sound of the machine put him to sleep almost instantly. it was so precious because the whole time, he held onto zac and me. once we got that out of the way, we were scheduled for sb clinic at 11. we headed up there and waited. and waited. and waited. then finally the head of the pt dept came in and checked justin out. she was really happy with his progress.. but she really made me mad.

for those of you who have been following the blog, you should know i've been concerned with justin's weight from the very beginning. i do not want his weight to be the one thing that prevents or makes it more difficult for him to walk. i have brought this issue up at every check up, including clinic and even to his pt/ot/and ei nurse. everyone up until this point has said that we're feeding him just fine and that we should continue a normal feeding routine, despite his weight, and once he's a year old, we will have him meet with a dietitian if needed. well, of course, she claims he's too heavy and this will determine his mobility. i was pretty happy with his weight because he's been at 23 pounds for almost 2 months now. i think that's pretty good for the way he was packing on the pounds in the beginning. not to mention, he was almost 10lbs at birth. i was so upset after our visit with her. once we were held up there, they let us leave for our ultrasound for a kidney/bladder check at 1. we got some basic results right away and it showed a little bit of pressure in his left kidney. it seems that there is no damage or anything.. we just have to leave the cath in overnight now and continue to cath him twice daily. i was really scared when we got the quick results because the ultrasound tech couldn't explain anything to us. i knew we had an appointment later with urology, but i was already upset about the pt thing, so i was really nervous to hear the results..

we returned to sb clinic after the ultrasound and there we were able to FINALLY meet with an orthopaedic dr. he came in and checked justin out and he was SO happy with him. he said that he had great movement and would be "one of our better walkers." i know not to get my hopes up, we've got a long road ahead.. but after all of the "bad" news we had heard throughout the day, it turned my frown upside down. besides the fact that he only had good things to say about justin, i was happy we were able to finally meet with him. we thought we were supposed to last time and even this visit we weren't sure of whether or not we'd meet with him. but it was a relief. justin will be fitted for afo's when he is starting to show an interest in standing. i'm excited!

after that, we headed to urology for our last appointment of the day. that's where we were able to review the results and we learned we'll just have to switch up his cathing schedule. it's not a big deal... it's actually much better it seems. i just hope it's working well for him on the inside too. :)

my lil man is a trooper. he's still 23 lbs, so he's staying pretty steady for right now. they didn't give us a length, but i'd imagine he's about 29-30ish inches. he's sitting up for short periods of time and he's constantly moving around. he's reaching for toys, trying to feed himself, and keeping us busy!

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