Sorry for the lack of blogging!



 View from the solarium



We've had a fairly boring time; Oakley's been doing well, and is finally gaining some weight. As of this morning, he weighed 5.74 kg (which is 12 lbs, 10.4 oz). Great news from yesterday, the little guy doesn't have to take his Zenpep anymore! Those are the pancreatic enzymes he has had to take for over 3 months, and he had to swallow them either in bead or capsule form. He had gotten pretty good at taking pills-especially since he's just a baby still-but I'm so happy that he no longer has to use that skill multiple times a day. The reason that he doesn't have to take it, is that his last stool sample had a normal fecal elastase reading, meaning the enzymes that his pancreas is supposed to emit for digestion were in there, so his exocrine system is working! This is so exciting, because the exocrine portion of the IPEX syndrome was kind of an unknown as far as if it would reverse when he finally gets his bone marrow transplant.

Update on the BMT: nothing. They're supposed to re-evaluate him, but we haven't heard any real news, other than his current doc is "guessing" they'll start conditioning (chemo) in two or three weeks.


the other view from the solarium



Today we had an interesting day...Oakley's TPN (his total parental nutrition) tube broke in the middle (in a joint where it goes into a filter) and was spilling all over...and we don't know for how long. I realized it when my jeans were soaked and smelled like Easter egg dye, and there was TPN everywhere. We called for the nurse, and in the meantime, checked his blood sugar with Trevor's glucometer. His blood sugar was 38, which is bad. He had been pretty cranky for a while, so we didn't know how long he'd been low, so we fed him while we waited for the medical staff to take action. By the time they came to even check his blood sugar (they came and turned all the pumps off, so he was not receiving anymore insulin), he had come up to 58, so he had made a pretty good jump on his sugar with his feed. They gave him some D10 (which is 10% dextrose) about half an hour after they knew his TPN had broken. It was weird, because after the doctor wrote for the D10 almost immediately, and was checking on Oakley and didn't realize it hadn't been run. The nurses had been arguing and calling pharmacy to find out how much time to run the sugar water over, instead of just giving it to him. He got spacey a few times, but never lost consciousness or had a seizure, which is the worry with low blood sugars. I felt so lucky to have Trevor there, so he knew what to do and we were ahead of the staff in caring for our kid.



where Trevor and I sleep, and we have
family cuddle time with all 3 of us



Endocrinology wants Oakley to start on a continuous glucose monitor once he's 6 months old. That means on the 19th, we'll put in an order for one and hopefully not have to stress out about highs and lows due to malfunctions sneaking up on us. I'm excited to get one, because the hospital won't actually monitor it, Trevor and I will be responsible for it, and then it's one step closer to actually being wholly responsible parents.



the TV and some of the drawers



I've been busy working on a slideshow for the TGI Friday bartending competition that's coming up, so haven't really had time to work on the blog, but Trevor's mom and her boyfriend, Bill, were in town over the weekend, so we got some time out of the hospital. My cousin, Crystal, even came and hung out with Oakley so that the 4 of us could spend some time out together. It was a fun-filled weekend of exploring North Seattle for Trevor and I.

 The best thing that happened this week though, was that we got our GIANT ROOM back! Yay! This means Trevor and I can sleep without spooning. It also means that Oakley has his view of his tree, and his whole solarium play room back! We were so excited that we have been sleeping like babies! We've also been able to watch the leaves as they slowly start to turn yellow. It also means we have ample space for Kinect, so we've moved our XBOX in and been playing darts, golf, and dancing!



Oakley, enjoying sunshine rays through his tree