Missing Home



We miss our dog baby too!



Well, I miss Boise. The food here is expensive and gross...and I miss the NICU people. The nurses here are good, but it's kind of strange that none of them have been here for more than a year or two. The turn around seems to be pretty high for RNs, and I have yet to even see or meet a CNA here. The doctors round in the morning or afternoon-and they actually let us know when they'll be rounding, which is nice, but then we don't see them again until the next day.

Yellow gowns in Boise, one thing we don't miss!

I also miss the NICU waiting room...we can't get our own ice or water here, we have to ask the nurses. They don't provide food to breastfeeding moms here either...wow, I miss Boise Saint Luke's.

On the positive side-I have found one pizza place that I like and one Thai place, and both are the cheapest in town. Also, my Dad's cousin sent her daughter with goody bags full of treats for us yesterday, and she watched Oakley for 3 1/2 hours for us so Trevor and I got a break and got to see some hobos, a bag lady, and some girls who had strapped cats to their backpacks on University Ave while running a couple of errands. I have never been so certain that I am a country mouse.

It's hard to be far from our families too. My brother is coming up for his work next weekend, and I hope that I get to see him! My parents are going to come up next weekend or the weekend after as well, and I'm so excited. It feels like it's been forever since we've spent time with our families, even though we've only been here 15 days.

Enough pity partying; here's some updated news on our little guy! Oakley has graduated to swallowing his zenpep (his pancreatic enzyme) in the capsule form, instead of us breaking the capsules open and having him swallow little beads. He has impressed everyone with his skills. He has also peed in specimen cups twice now, so we don't have to tape a bag to his crotch for urinalyses.

The wound specialist came to see him today though, because his poor little butt is raw from all the diarrhea, it even started to bleed a little bit last night. We had been given 4 different tubes of ointments for it, and she looked at it, and said that the Criticaid that Boise sent would be the best bet for him. She gave us some tips for his heels too, since he gets poked every hour or two for blood sugar checks.

He made a trip to radiology last night, for a late-night ultrasound. His left leg swelled up again and turned red. It was warmer than his right leg, so we watched it for a few hours and then they decided to check for a bloodclot. No blood clot, and they aren't sure why his leg would be swelling up and randomly turning red or purple, but the Immunology team said it might be something caused by his IPEX.

The first time his leg swelled, before the PICC was removed

They want him up to 6 kg for transplant, and he weighs 5.44 kg as of this morning (barely under 12 lbs.)

I do love napping with my mom by the window that looks at my tree!

He is now rescheduled for "conditioning" (a nice way of saying chemo and/or radiation-Oakley will not have radiation) at the end of September, and his bone marrow transplant is tentatively October 4th.



 Sorry we haven't kept this up to date as much as we promised...it's hard when there's not a lot to say.
Love and miss you all!

Sam, Trevor, and Oakley

Mom said we have to start taking more pictures...I'm helping! -Oakley