Katlyn's Struggle with ADA SCID: Update on Skin (well sort of)

Katlyn oftem picks up large items and carries them around. She's very strong.

My little lady

Playing with her little house

Just being adorable

I'm very sorry that it has taken me awhile to update Katlyn's blog. Johnathan is on nights right now, and it makes it extremly difficult for me. The computer is in the living room, where John is sleeping and I do not want to make noise and wake him up. As anyone with children knows, whereever you go your child follows. Katlyn is a very loud child, and I love it that she's so vocal. I just want daddy to be able to get his rest as well. Katlyn is eating her lunch happily right now, so I thought I would take a few minutes and update what has been going on.
As I had mentioned before, NIH had sent Katlyn's skin slide away to Boston to be analized by who they consider to be the expert in the world on spindle cell tumors. Well he took a look at the biopsy and said in his opinion it wasn't spindle cell tumors, but he had no idea what is was. I'm not really sure what to think of all that. I got the message from Katlyn's doctor in Halifax from her doctor at NIH. I think the best thing to do is just wait until we get back to NIH to discuss it and we'll know more what to make of it. Apparently they sent Katlyn's skin slide to Nebraska, but I don't know why or who is in Nebraska. I'm really just trying my best to put the whole thing out of my mind and just try to focus on day to day life.
As far as Katlyn's counts go she has been running about the same number recently, always around 200 lympocytes and recently being her highest of 218. Unfortunatley when we last checked Katlyn's lympocytes have dropped to 90. We were surprised by this result and hoping that it woudl have been higher. So we will take Katlyn for bloodwork on Monday and hopefully it has gone back up.
It seems as though this whole process is just taking so long, which it is. It's interesting though. I was taking to a doctor that had looked over Katlyn when she was first diagnosed and he was very surprised that Katlyn was doing so well. He said that she has come a long ways. A lympocyte count for someone Katlyn's age should be around 4,000 and like I mentioned she has been around 200. Well he said that Katlyn had none when he last saw her. I didn't know this. GO KATLYN. We still not heard anything about her research blood results, so we may just find out at her next appointment at the IWK. She we go there on the 12th and then to Maryland on the 24th. It is going to be a busy month.
OUr days are pretty much routine now. It is a hard adjustment with John changing from ddays to nights, but we're getting used to it. We are so proud of him. He has been working at his new job for a about a month now and he's got three raises already. Way to go Daddy. He does seem to enjoy it there too. We do miss him though since he works 12 hour shifts and when he is home he is sleeping. He just wants to take care of his family the best he can, and for that we are extremly thankful. Thanks so much Daddy.
Katlyn and I have been doing a lot of new things lately. She started to climb up the stairs yesterday. We have a lot of stair up to our apartment and she walked up all of them all by herself (I was right there though in case she lost her balance). Also Katlyn has been baking a lot with me and just recently made cupcakes all my herself. I did all the measuring and she added all ingredients to the bowl and with my assistance we mixed the cupcakes up. It was so cute. She had flour all over the place. She carefully lined the muffin trays and we put them in the oven. She was very surprised when they came out and thrilled when she learned she was going to be able to decorate them. SHe had complete control of icing and sprinkles. It was bliss. Also Katlyn has been helping me make supper too. I find it works great in making her interested in what we are going to have. One day she helped me prepare a shepard's pie and she did really good eating it for supper.
Other than that, Katlyn is just trying to be a normal 2-year-old. She runs around, plays in small tight spots and makes life so much better.
We love you so much sweety.