Baby in deep thought

Hmmmmm....I wonder how long it will be before I can go to med school.

Just to let everyone know, Katlyn's neautrophils went up a bit today. Yesterday she had dropped to 309 and today she was 359. I guess this is exactly what Katlyn is supposed to do anyhow. Although she is neautrophenic and it's pretty stressful right now going through that alone, she needs to have her counts drop like this. This way her new cells will have an unfair advantage over her old cells. That is exactly what we want to happen. So it's only a matter of time and Katlyn will not be neautrophenic anymore. The great thing about it is that when she goes up this time it will actually be her doing it and not PEG ADA. Any progress that we see from here on out, will the gene therapy. We are so excited because we know that our baby girl is going to get better and it has already started. There is no more waiting for things to get done anymore. The procedure has been done and it's only a matter of time before Katlyn's immune system is fully functioning. The doctor said we should she lymphocytes in about 6-12 months after the therapy. But just to put every ones mind at ease, Katlyn is doing what she is supposed to do.
Oh yeah, I also wanted to tell a very cute story about Katlyn today. Katlyn was having her nap and she was hooked up to her IV, because they switched one of her oral medications to intravenous because her liver enzymes are slightly elevated (which isn't at a dangerous level. A lot of things could have cause it ex: chemo. They just wanted to changed her medicine to err on the side of caution.) Anyhow, while Katlyn was taking her nap Johnathan and I went to the Children's Inn for a little bit. Well when I came back Katlyn's pump was beeping and I could see the display saying air in line. Well it woke Katlyn up. So she sits up and reaches out of the bars of her crib and hits the restart button to quiet the machine down. It was pretty impressive. There are tons of buttons on the machine and it wasn't even like she was pressing them all. She just hit one. That's my girl. I think she might work at the IWK someday.
All is good though. Katlyn is doing fantastic.

Thought I'd throw in a few more pics because I haven't been writing on here as often as I would like. I do have a very cute video at the hospital to post on here and I will just as soon as I get a chance.

Sometimes she just looks at me like, "mom what do you think you're doing.
Oh, Happy baby!!!!
Me and my baby girl.
This is a picture of the NIH Clinical Centre
This is a picture of the Children's Inn where John and I take turns sleeping.


Katlyn has been doing very well but her neautrophils are still dropping. Since the last time I wrote Katlyn dropped to 460 on Sunday then up to 569 and today down to 360. I guess she has to drop before she goes up. I just wish that she would stop dropping already. It really makes us nervous for her to be below 500 because apparently 500 is what they call the safe point. So I know that we are extremely careful anyway and it's probably hard to believe that we could get much more careful, but we could and we have. I bet there may be a huge sigh of relief when we go home, because of all the hounding we have been doing. We are just trying to make sure things are done the right way, and Katlyn isn't in danger because someone was careless. We are her advocates, and we need to protect her the best we can.
She is doing great though. Because her counts have dropped, we have to check her temperature every four hours, and there hasn't been a problem. She is doing very well. I'm sure that she'll stop dropping any day now and then we can get ready to go back to the IWK.

Blood work today

So everything went fine with Katlyn's blood work today. She did exactly what her doctor said and still went down. She is now at a neautrophil level of 560. That is down but she is still good. The chemo does play a toll on their white blood cells, so they were expecting this. He said he doesn't expect Katlyn will drop much more if she does at all. So, they will be collecting blood over the weekend each day, for sure to follow her. That way they can keep a close eye on things. So her platelets are still great and her haemoglobins are back to normal so she is no longer anemic. YEAH!!!!
Katlyn is really doing great. The doctor said that it is really hard to tell for sure exactly what is going to happen, but he thinks maybe her neutrophils will come back up to where they were before she got the chemo in about the same time it took them to go down.
The other child is having some problems with his neautrophils and the doctor thinks it may be due to either a viral infection or a certain antibiotic, so he will be avoiding that family of antibiotics.
Things are great though. Katlyn has given up on having a nap I think. But the nice thing is she's in bed a lot earlier than midnight now. I knew it was only a matter of time before that happened anyway.