Since then, on a Thursday to be exact, Harrison's seizures have come back like a storm, like the rain we have been getting. Not ideal, but we are very happy that despite these awful seizures, Harrison continues to make progress by leaps and bounds! He is sleeping less, which means he is more awake and ready to work / play. The seizures are different, less debilitating, and very quick.
We are going back up on the medication that we had decreased, and hopefully this will make a difference. The seizures have already decreased some since, and by next week we will be back to his original dose. If that works, then maybe we can try discontinuing the other med instead (which frankly I don't think has ever done anything for him anyway).
On to the good stuff:
Like I said, Harrison's progress has been unbelievable in the last few months! He is growing like a weed, so tall (shouldn't be a surprise, his 14 year old brother is already taller than Dad) and he is so much more awake, alert, communicative, vocal, playful, happy...he looks like a different kid, a big boy, and he feels like it too.
STANDING while holding onto a table or sofa...he made 8 1/2 minutes at school yesterday! By himself!
WALKING across a room- all the way to the front desk at the physical therapy clinic just so he could flirt with the receptionist. And beginning to walk with help of holding only 1 hand!
SITTING up straight pretty consistently.
Making lots of different VOCALIZATIONS and intonations, and turn taking with noises like a regular conversation.
EATING...this is a big one- he seems to have really turned a corner with this- all of a sudden he started smacking his lips (he would never even close them unless I was of course trying to brush his teeth) and it is pretty clear he is hungry- he is chewing and moving the food around and he must be swallowing it because it's not all over his shirt. He is practicing at every meal plus snack time every day...scrambled egg, hard boiled egg yolk, yogurt, avocado, almond crackers...these are his favorites and he is doing amazing!
Tomorrow, I can't believe it, is his last day of preschool! Two and a half years of preschool in the same class with the same teacher, who is wonderful and has done so much for him...but he's ready. This summer he will be in a 5 week program, 3 days a week but a longer day, 9-2. Some of this time will be spent with the teacher who he will have next year, and she is amazing and we are thrilled.
Harrison has also become so much stronger and healthier, in part because of getting rid of that trach, and also because of these IGG infusions he has been getting. He was receiving them once a month by IV, but it was getting too hard to get access, his poor veins are so abused, so now he gets a subcutaneous infusion...weekly. A tiny little needle (I know, it's still a needle), three of them, in his belly. It only takes an hour as opposed to the 3 hour IV, and he really barely feels it. The nurses cannot come indefinitely to do this of course, so it is something else I can add to my medical resume, hurray.
Anyway, check him out with a good helper friend:
