Just a lil FYI for Bella's blog. I don't put every blog post on my facebook wall. So if you would like to be fully caught up, the best way is to look at Bella's blog on a computer. (You can't see the archive on cell phones.) The archive on the computer is the side list of every blog post I've made on here since I started the blog. :)
BMT Update:
Still in "wait mode" but we have more info on why our "wait mode" is the way it is. Every detail is helpful when your anxiously awaiting info that deals with your child's survival.
Today we found out that our BMT doctor Dr. Lewis is actually still waiting for more lab work to come in from the donors. He has most of what he needs but still a bit left to come in before making the final decision on which donor is best for Bella. Again, this is a huge and rare blessing for them to have even 2 donors to pick from. So they need to make sure the decision is the absolute best for Bella and her ability to accept the donor's marrow.
Secondly, the BMT team only meets on Mondays to review all results and updates. So that is why things tend to be week by week and not day by day.
Therefore, we'll patiently await (speaking in faith) even more great news for Bella's transplant, on Monday the 23rd.
Genetics:
In short, we do not know why Bella was born with SCID. Sasktoon Genetics has been looking at Bella's bloodwork since we found out she had Hirschsprungs in Sasktoon Dec. 2013. Calgary's Genetics team has been looking at Bella's blood and working with Sasktoon's team since we found out she has SCID in Nov. 2014.
They have done many batteries of tests to try and figure out the "why."
Our immunologist told us SCID is rare in itself, so to find out the type of SCID Bella has is even trickier. There are about only 20 types of SCID. And that's based on the ones Genetics has been able to find. There are some cases that go unknown.
We should get an update from Genetics this month.
Bella's love for reading and books is still as strong as it was when she was a month old and reading to her was the only thing that calmed her down during any medical procedure or poke in hospital.
Just thinking about all the vaccination debates going on. Take a minute and imagine sitting your baby/child down for a needle. Anticipating that pain from the needle. Now imagine if the only thing in that moment that calmed your child was reading to them and showing them a book. Pretty spectacular eh. Bella went through weeks in hospital when they had to poke her daily and sometimes more than once a day. Day after day... I read to her a lot.
She LOVES turning her own pages and of course holding the books herself now.
She will ask for a book constantly. And when she's done looking at one she'll ask for more until her book drawer is empty. This is our daily morning routine when she wakes up. She wakes up happy, and asks for a book.
Kyla, we have never met. Rarely a day goes by that I do not think of and say a prayer for your little doll, Lyle and yourself. I am Brent's mom. He and Melissa have kept us informed of your struggles and successes all those months. For the last while, I have been able to read your mustard seed blog. I wish such happiness and health for your darling. Good luck and strength to you all.
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