Jackson's Journal

Jackson's first day (and subsequent days) went very well. He seems to really enjoy it most of the time, although he does occasionally have weepy moments. Not sure if that's due to being overwhelmed, or not being interested in the activities, or what... but he has generally been able to pull himself together with a bit of encouragement or a quick change in scenery (I wheel him around in circles a couple of times and he's able to focus better).

The staff seems caring and competent, but I still haven't been able to bring myself to leave yet. They're one aide short right now so maybe when they hire the new aide I'll feel more comfortable. He has 4 other kids in the class with 3 aides + the teacher. Two of the aides are 1-to-1 with particular kids and one girl has a nurse that functions as her 1-to-1. With one more aide it will be 1-to-1 for all the kids even though Jackson won't have his own. I actually like this better since it will get him the assistance he needs without allowing him to become too reliant on one person. Hopefully once the new aide starts I'll be able to start leaving for chunks of time to get him (and me) used to being on his own.

The class is pretty cool. All the kids are really encouraged to communicate as much as possible, and the staff is all very well-trained in various forms of augmentative communication. Since Jackson doesn't have a device right now he's using his head switch to answer yes/no questions and eye gaze boards with picture symbols to give answers (for instance when they want him to tell the class what day comes after Thursday, they show him a board that has a different day of the week in each corner and he looks at the one he thinks is correct). He gets to practice on the eye-gaze device a few times a week.

In other news, three big developments. First, I noticed today that Jackson has two loose teeth! I'm not sure if I've talked much about it, but without going into too much detail, Jackson's mouth is kind of a mess. I wasn't sure if he would ever lose his baby teeth, but his two bottom teeth are definitely loose. I'll have to keep an eye on them to make sure he doesn't swallow them. It's a cute typical thing for him to go through and he's pretty stoked to have some loose teeth. The Charlie & Lola episode today was about Lola's wiggly tooth and he just loved that.

The next new development is that we've said goodbye to Children's Hospital and we're switching all of Jackson's care to UCSF (local care, that is... Duke is still very involved). We had our first clinic visit at UCSF yesterday and are feeling very positive about the change.

Which leads to our third new development. UCSF has recommended that we try to wean down some of Jackson's immune suppressant medications, and Duke has agreed. We are going along with the plan but are very nervous about it. If it works, Jackson will be able to come off all his meds except two (one for reflux and one for tone, vs. the ten meds he's on now). He won't need the IV magnesium that we currently have to give him every 3rd night, which means we won't have to access his port nearly as often. He won't need his monthly IVIG. And most importantly, he won't be immune suppressed anymore! Sounds great, right? But if it doesn't work, his donor cell count will drop which means his enzyme level will drop, and if we can't turn things around quickly it will mean his Krabbe will start to progress again and he'll need a second transplant. And, uh, that would be bad. The docs feel that after 4 years his donor cells are well-established and will stick around even without immune suppressants. We're fervently hoping so! We started the wean of one of the IS meds yesterday (he's on two) and we'll draw a donor cell count in 1 month to see how he's responding. The whole thing is very frightening and could have a bad outcome, but if it works then it will greatly improve Jackson's quality of life (and ours as well). We're praying that it works.

That's about it from Jackson's life right now - he's a busy boy with all the new stuff going on! I'll try to post some pics soon. Thanks for checking in on him!