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Monthly Archives: February 2016
Day +224: Kiira’s Epstein-Barr Virus results came back negative again, so that’s great news! Now we just need her engraftment numbers to come back high, but we don’t get those drawn until Tuesday and will take awhile to hear the results.
Today Kiira got to play at our gymnastics place. The owner of Flip2It Sports, has been so sweet and opened up her gym for Kiira to play when it’s empty. She loved it!!
I want to ask for special prayers for a baby named Colton (https://www.facebook.com/prayingforcolton/). He was next door to Kiira on the BMT floor. This entire time (over 8 months), he has been in the hospital and had a second BMT for a different condition, infantile osteoporosis (fragile bones), and is now on life support. Their journey has been far from easy and they need a miracle today!
Day +222: Yesterday we went in for labs and had good luck getting the blood draw in one poke, which was so much better than last week. We are waiting on Epstein-Barr Virus results, but all other labs have come back normal. Later this week or next week, we will also get Kiira’s 30 day engraftment results done to see how the boost of donor cells helped her numbers. We pray that they’ve increased so that we won’t be looking at a second transplant.
We got a baby gate for the stairs from a friend (thank you!) and Kiira is upset she can’t climb the stairs, but I feel far more comfortable with having it there. Especially because she took a spill last night on the stairs, but she only suffered a very minor scratch. I couldn’t believe it! Maybe this boost is giving her stronger skin already.
Kiira has been so loving lately. She gives us so many hugs and kisses and started saying “Love you”. When I think back to a year ago and trying to imagine what life would be like now, I envisioned the worst and to protect myself, I was shut down. But, we have this amazing, loving little girl that melted my heart, reminding us she can overcome more than imaginable. And that is why we need to take it one day at a time and not worry about what the future brings.
Day +218: I have been meaning to update all week, but we have been so busy getting ready for Miia’s 6th birthday, which is today, work, and other things. Kiira is doing fine. We tried to get labs on Monday, but the blood just wouldn’t come out despite 3 attempts. They accidentally tore some of the skin off her arm with a cotton ball (yes, a cotton ball is enough to tear her skin) where they usually poke, so I asked if we could give it a week to heal before they poke her again. The other arm just doesn’t give blood even when they get the vein. So we hope the Epstein Barr Virus is still negative, but we won’t know until later next week.
We made the appointment for Kiira’s evaluation on the 22nd to set her up with therapy services, but the gym our kids go to also offered for Kiira to play when no kids are present and everything is sprayed down. The kind of play she would have there would help strengthen her legs and core, which she needs to be able to stand and walk on her own. I’m excited to try it out and so thankful for their offer.
We went over a week without a single finger blister, which is huge. But then yesterday it was like an outbreak of blisters–whatever she touched, gave her one and this morning I had to pop one on her knee and underarm as well. Sometimes I feel like the bone marrow transplant is helping her skin, but other times it doesn’t. It’s been 7 months and I know we may not see full results for a year or more, and it doesn’t help that her donor cells have decreased so significantly, but we are waiting patiently, because we have faith that it will help.