Many 'Thank You's' & Updates.

First, Lyle and I want to say a huge 'Thank You' to everyone that continues to support us through Bella's GoFundMe site. We see your donations and comments and we just can't thank you all enough. It's means the world to us and it helps in so many ways. I wouldn't be able to fit the list of all the ways, on this blog. So Thank You very very much. It's quite a long haul with the time line the doctors gave us and many people ask us, "Why do you have to be there so long?" And it's not just being here for months after Bella's transplant, but the time she will still be in isolation for, the time we are away from home, our family, our friends, our dog. With SCID patients the time frame on isolation and in hospital is different from cancer patients. We know chemo and BMT do the same for each, they wipe out the patients entire immune system. (In Bella's case, the very little immune system she had that didn't work). But SCID patients do not have an immune system to fall back on if something were to go wrong or not work. Cancer patients original immune system would regrow. The isolation and time in hospital is protection for these kids and Bella, to give her the best possible chance at building that immune system that she desperately needs, grafting, and finally being able to get strong enough to fight the common cold, flu, etcetra when she's older... To live a normal life outside these walls. 

Day +4 (four days post transplant)

Still a big snuggle bug.

Bella enjoying her morning read through the Calgary Herald. 

Day +5

Bella has still been quite up and down with her moods. It's been hard to explain but she is progressing well and even a bit better than the docs expected. She has not got mucositis in her mouth (which is extremely painful) and no bum breakdown (which is also very painful) from the chemo meds. 

It's hard to see her not herself right now. She has become really sensative, and tired, moody and basically a little cuddle lump. It's hard going from the little girl that all the doctors and nurses talk about as being always happy. She would be quite a ham when you enter the room, stranger or not, mask or no mask...she would smile at you.

Now it's, "Don't touch me!" And we don't blame her. But it's still hard to see her so exhausted, tired and upset. 

Day +7 Grumpy Guss

Since yesterday we started Bella on a morphine drip. The Pain Control team comes to see us everyday to discuss different ways of helping Bella through any pain she may have through this process. It's quite heart breaking because she's still a baby and can't tell us where or why it hurts. 

The docs do know this regiment quite well so they know what to expect from a patient on certain days post BMT. They call it "Grafting Syndrome." So the effects from the meds and the whole process that her body has to endure, start to show between Day +7 to Day +20. 

It's good because it's something the body does when the new cells are taking over and grafting. It's hard because it's exhausting and painful for Bella.

I colored Bella some pics of her favorite animals to cheer her up.

So Bella's first official animal that she loves, can say their sound, and pic them out of any book or toy drawer is... A cow.  Second to the cow, she loves: Sheep, bears and dogs. During one of her cartoons yesterday Lyle and I were amazed to find her looking at the tv saying, "Baaa Baa," because there was a segment with a sheep bouncing around. I have also taught her to say, "iPad!" It's pretty cool. We have a cover on it so it actually opens like a book. So for the longest time she was calling it a book. (She has lots of games on it that she plays). Me being "type A" was annoyed by this and corrected her each time saying,"No hunny, this is an iPad." Within a couple days... she now requests, "iPad."  Lyles not sure if he's happy about this yet, or not. Haha 

I want to do anything right now to keep her spirit up and keep her happy. And if that means a little more cartoons and iPad in a day, I'm ok with that.