In four short weeks Bryce will be having SDR. I can't believe how quickly time has been passing. We have been busy making memories and enjoying the little bit of summer that we can enjoy before his operation. We plan on doing as much as we can before we start the trip to St. Louis and back home again.
Bryce has been on the medication Baclofen since he was a baby. Baclofen is an oral medication - muscle relaxer - that helps with his extreme high tone (spasticity). I have never believed that this medication has done much in the way of helping with his tone but then again I had never seen him off of it either.
So starting the first week of June we eliminated one dose of the three times a day medication. This week we eliminated the second dose and by next week he should be completely weaned off the medication. The reasoning behind the wean is that stopping it abruptly would be a shock to his central nervous system. During this process Bryce has really tapered off in his eating which is kind of a big deal since he doesn't have a lot of spare weight. In the past when he stopped eating full meals it has usually been a result of constipation or sickness coming on. Another kind of strange thing that has been going on is that Bryce will have moments of crying (tears and all) and then goes into a hysterical laugh. It is kind of a funny sight but very odd. He hasn't just done this one or twice but he has been doing this off and on. So I do have a call in to the CP Doc to see if this should be considered "normal" with weaning this medication.
Bryce must be 3 weeks Baclofen free before surgery. I am hoping this is one med that we never have to start back on. He would be on 3 medications a day instead of 4 - which would be GREAT!
UPDATE on #2 Sleep Study Results:
It was found during Bryce's second sleep study that he will need 1/8th liter of oxygen while sleeping. The medical supply company brought out our supplies and trained us on how to use the oxygen, the refill tank and the travel tanks. It really has been going better than I expected.... well except for the times that he continuously pulls it out of his nose and gets completely tangled in all the tubing. Many many times we go in and Bryce has the tubing in his hands, off his face and looks so proud. It is kind of hard to get after him (until we have been in there for the 7+ time.
Cohen - The Protector - is also getting up numerous times and checks on Bryce. He takes his little flashlight up to Bryce's face and checks to make sure he has his tubing in. If not he proudly comes out to announce that Bryce has taken off his oxygen. Such the Helper he is - he really has been making us proud. Except for the times when Bryce really hasn't taken off the oxygen and he just wants to get out of bed, come get us and have us go back to his bedroom. Last night he pulled this trick and we went back, Bryce was fine and he told Matt "Wow Dad - I know what happened, Bryce took his oxygen off and put it back in". I was cracking up listening from the video monitor in the other room.
We have scheduled Sleep Study #3 for September. I HATE sleep studies, but everyone is hoping that his SDR operation will improve his breathing. So we will go through it again if that means we can maybe, just maybe get rid of the oxygen.
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
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