We have to start off this post thanking everyone for praying for Kiira, because once again, prayers were answered! I got a call on Wednesday that the donor is willing to donate and though she still has to pass her physical, we have a tentative transplant date of June 30th, which means work up (blood work and Kiira’s physical) will begin June 15th. The donor’s physical is scheduled for the end of this week and then we should have results the week of the 8th. We will then know for sure whether or not we start the 15th. So we arrived in MN 2-1/2 weeks early but it has been nice getting settled in and acclimated to this city.
They call the days before transplant negative days, transplant is day 0 and then you start counting up. The goal would be to be released from care at day +100, which would be right around her 1st birthday. So if all goes as planned, we are at day -30.
Over the past few days, we finished grocery shopping, ordered mattresses (so we don’t have to sleep on the floor anymore), and enjoyed hanging out in our apartment, and even snuck in a few naps! We also got internet, so Jason is back to work and I start back this week. Thankfully we can both work from home! We went to the Mall of America and it’s quite expansive! We’ll probably take the girls on rides another day, and we didn’t even come close to walking the whole mall, so at least we’ll have something for the kids to do in the upcoming weeks. Miia is starting to talk about missing home and her friends, so we have told her to write letters to her friends and she has been going to town. I think I’ll need a lot more stamps!
Kiira is making good use of her time out of the car seat to go from sitting to laying to rolling and scooting backwards. Her sisters model crawling for her and I have no doubt she will be on the move soon. I will probably have to add more bandaging to her knees and wrists at that point and I’m sure she will “scream” at us more for keeping her from getting into things, but keeping her wound- and infection-free for the next 2 weeks is my priority.
I have LOVED doing bandages right away in the morning. Though I’m only half awake, Kiira is very calm and we get through the changes quicker than ever. We are still only doing her hands and feet. Occasionally she will get a blister in other areas like in her armpit or behind her ears, but overall keeping her clothed prevents new blistering. The biggest issue is her fingers–with leaving them more exposed, only putting them in gloves, and allowing her to play and move more, they frequently blister. Plus, she is losing most of her fingernails–she has 4 left. Every time a nail is about to fall off, it starts with a blister in the nail bed. Despite how incredibly painful I think it should feel, it doesn’t seem to bother Kiira. We are so happy to be in MN and to have our BMT date. Finally our countdown can begin!
- Pray the donor passes her physical, and we can proceed with the BMT as planned
- Pray that Kiira stays healthy and can withstand the treatment she will receive
- Pray that we have patience with each other and adapt to our new home
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