Saturday, October 6, 2007

I know probably a lot of you have been waiting for on an update about if we're back in Canada or not. And for those of you who know we're not, you're waiting to hear why. It's actually rather complicated, but here goes. Katlyn's t-cell proliferation test came back and was 8,000, and she needed to be 10,000 in order to be discharged. We were extremely upset about the decision about not going home. You see, on one hand we have been told that there is a lot of probability of error with such test and they don't even necessarily know what this test means because it's not a commonly done test. On the other hand we have been told that we are unable to leave three times because of this test alone. Because Katlyn's t-cell function was so close to 10,000, we felt it wasn't enough to keep her here. Actually a lot of people were in agreement. Katlyn will not be literally going home. She will still be in isolation at the IWK in Halifax, N.S..
Now here's where it gets tricky. Because the doctors taking care of Katlyn are the ones who set up the protocol and all the guidelines for discharge, officially they have to stand by that. It does make sense. Where would they draw the line. What if the next child was say 7,000. They set those numbers up for a reason and they should stand by them. So we are still at the National Institute of Health. For how long? Who really knows. We know that they would like to keep Katlyn here to monitor her progress for as long as they can. We know that we are going to base our decisions about when we leave on Katlyn and what's best for her. If being here is the safest thing, then we'll have to stay here. Ultimately we would like to get Katlyn out of the hospital altogether. A hospital is not the best environment for an immune compromised child. At this time however, we don't have a safe place set up. Our hands are kind of tied right now. We are looking at the possibility of living with my mother, but we are still unsure if that's the best plan. We need to look at the cost of preparing the house, and if it's at all doable first of all, and if the fund raised dollars are going to be able to cover it. If it's a large costs it's doubtful that they will because there just isn't that much. We have been going at this for over a year now and to tell the truth, it has been a huge financial stress for us. Other than that we might have look at finding an apartment that will be safe enough for Katlyn to live. We have to make the smartest move for Katlyn. We have come to far to make any silly decisions. Besides that we will need to look for a new source of income. We have so much to do before Katlyn will be able to officially go home.
At this time I would like to thank my friend Sandy who is busy right now trying to organize a fundraising even for Katlyn. She seems really busy at it and I'm sure it's going to turn out to be a huge success. She's planning on having a raffle. Also a big thanks goes out to Duane from Duane's furniture in Woodstock, N.B., for donating a very nice wooden rocking chair for the event.
Katlyn is doing very well as usual. She is loving the time she gets exploring the outdoor. Today was a hot day so we waited until this evening before going out and it was great fun. Katlyn ran around with her little flashlights. I think this outing gave Katyln a new perspective on things a bit. Also when we came back I was undressing Katlyn from her dirty clothes and getting her ready for a bath. I asked her if she had fun and she immediately gripped on to me tightly, giving me one of the biggest hugs ever. She just kept saying "thank you, thank you." Then when Johnathan came in she blew some kisses his way again saying "thank you, thank you." It was so cute!!!
So tomorrow is a big day for us because we are going to begin potty training Katlyn. It seems like she's ready and we are able to devote our time 100% right now, so it's seems perfect. Hopefully she won't give us too hard a time. It's hard to say, but I think that a little girl who knows how to call 911 several times and program the hospital bed so that if get out of it the alarm will go off, is definitely smart enough. We love you Katlyn.