Quick Update

A couple of things...Mr. Jaime received his first set of Synagis shots today. Prior to receiving them (he gets 2 now each month because of his size), he was weighed (on our home scale, which to-date has been pretty accurate), well, it seems that he's lost some weight again. Not surprising since he's not been feeling well! He weighed 22.8 lbs today, last Friday he was 23.1 lbs. So, he lost about a pound. He was weighed with clothes and a diaper on at Friday's weigh-in and was fully naked today, so that can be some of the change. That's just always disappointing to see! :(
Also I found out today that pulmonary has decided to bronch Jaime at the same time he's getting tubes...not sure what else they are planning...maybe a CT to finish things off?!? Maximizing anesthesia! Cardiology in Cincy cleared Jaime for his surgery,so has hematology, which is GREAT! :) Speaking of hematology...Jaime's labs are back, his Factor VIII level is 11%. This is AWESOME news! Is it normal...NO, normal is anything over 60-70%, but it's nice to see that he is producing factor and that his level is higher than it's been in the past with no Factor infusions. Jared's level is always much lower than that..which probably explains why Jared's body looks like it got hit by a mac truck in general being that he's covered in bruises all of the time. Anyway, not that probably any of you understand the whole hemophilia thing, but I was very pleased to hear that his level was this high! His hematologist has put a pre-op/post-op plan together for him and he will be receiving Factor infusions as precautionary measures.
Now the clincher...Jaime is going to the pediatrician tomorrow to see what this cold is all about. Is is just a cold? Is it his ears again? Is it affecting his lungs? He does have a cough and anesthesia said that we very well could get to the surgical area Monday morning just to be bumped from the schedule because of his "cold." I hope that doesn't happen, but it very well may! Monday is a relatively long time away, so keep your fingers crossed! Jaime really needs to get this done. His chronic ear infections have begun to affect his hearing, the sooner he gets it fixed the less permanent hearing damage Jaime will have.
As for Jaime's orthotics...well, I canceled his appointment yesterday. He was sleeping when he was scheduled to go and with him not feeling well, I thought it was more important for him to rest. Honestly, I don't see how they will be able to fix the hinge for it not to bruise him! We're going to reschedule when he's feeling better.
That's all for today's update...back to school work for me!
Oh, here's a pic of Jaime's thumb splint (some people have been asking what it looks like)...he wears it all of the time, it's to keep him from tucking his thumb into his hand. If it does what it's intended to do, it will give Jaime proper hand (thumb) positioning. It's not the best pic of Jaime, but you can see what the splint looks like. He has his orthotics on in this pics, too. (And he's wearing some lovely clothes courtesy of Julianne (Angel Julia's, Mom! :)