A little late but Merry Christmas!! Austin had one seizure at 3am on Christmas morning, but recovered well. We gave him his morning dose of Banzel and cannabis at 5am (instead of 7-8am). He didnt have any more seizures (even when sleeping). We had a wonderful Christmas, but it certainly wasnt the same. Missed seeing our family and friends (this was the first Christmas EVER for Jason not to see his family). Missed seeing our grown kids and grandbabies. But we made the best of it. The Three Musketeers (our new nickname for Austin and his baby brothers) were at peak performance - dancing, laughing, playing, eating goodies, watching movies, playing with presents...that part was awesome. Being with Jason, of course, was awesome. Had some GREAT news come back on my pathology - all clear. The areas of concern are of no concern. Definitely scary and so grateful the results were good. We have 2 more boxes to unpack before we are officially moved in. But the Christmas tree is up (including the one from Jasons grandparents) and Santa came and we are all together and Austin is doing better than expected, so we are counting our blessings and grateful for all the love and support. Like clockwork, at 3am this morning (approx. an hr ago) Austin had a seizure. It was rough for about 2 minutes but ended and he recovered, breathing way more normal during recovery than before. So I went ahead and gave him his Banzel and cannabis and put him back to sleep. Hoping the early morning dose will get this one seizure pattern handled. Still - he is doing amazing - we thought dropping his Onfi would cause MORE seizures, so we had HOPED the cannabis would help that and it is. His withdrawal symptoms were significant in the beginning but he is adjusting well and his temperament is certainly improving. Well see if the early morning dose helps (if he seizes again while sleeping between now and when he wakes up). Thats basically how we are doing it - trial and error with boundaries. Once we get to a certain level, then we make the next step and go to the next appointments. There are no major milestones in speech or cognition - no bright lights. Which I have to keep telling myself there arent supposed to be right now. But there is definitely a less zombie like Austin running around. Fewer stumbles and falls, more laughter, less fear (oh good). You can tell the brothers missed each other - and I missed them. Starting to think about the gameplan for Jason heading back to Oklahoma (big heavy sigh) but thats a week away, so we are going to enjoy the last week of 2014 in our new home, which, so far, has been amazing. Tragedy of the day was the sad passing of my cellphone (again) - death by toddler and toilet (again - ugh). Our littlest prince (Freeman) is proving to be quite the tornado. All our best to you and yours - may you be blessed with health, happiness and prosperity - Merry Christmas! (Ill post some pictures later on today)
Posted on: Fri, 26 Dec 2014 11:03:46 +0000
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