Just hanging out at the IWK

Katlyn is doing very well. I was hoping that I would have some parade pictures to put on here, but unfortunately I have not become familiar enough with our camera in order to take pictures that actually show up properly. I have a few, but they are actually too embarrassing to put on here. With a journalism and photography background, you would think that would have been able to figure it out. The lighting was difficult because we were on the top floor of the parkade looking down on the parade. Katlyn had a blast. She enjoyed all the lights and music and sometimes she even got to see a passing dog or little children running around down below.
It was a pretty chilly night, but Katlyn was really bundled up nicely. She was so hyper from the parade, that she didn't even want to go to be. She just kept signing jingle bells.
Nothing is really new as far as Katlyn goes clinically. We will be going back to the United States next Monday for Katlyn's first follow up appointment. We are pretty nervous because she will be flying commercial, but I'm sure she's going to be fine. She'll probably just watch Elmo the whole time.
Other than that we are working our hardest to fine a safe place for Katlyn to live before Christmas. Really, it is our ultimate goal. Katlyn is doing fantastic and she is able to leave, so now we just need to get out of here. She had to spend her first Christmas in the hospital and we are trying our absolute hardest for her second to be at home.
We also learned that Katlyn will be able to play with Cole, another child with SCID who had a transplant in April. Their doctor said that we'll take a look at her bloodwork when we get back from the US, and everything is good then we can go on a pass to visit him. We know his parents, Jenn and Mark very well, and know how clean their environment is. We also know we are going to have a blast. It's so exciting to think that Katlyn and Cole are going to finally meet. We have been all going through this together, with both of our children sick. It's so neat how they will meet very soon and will both be each others first little person to play with. We are also planning on visiting them when Katlyn has her followup appointments at the IWK.
As you'll see in the pictures, Katlyn has taken a liking to playing in the lockers amongst a million other things. She now climbs everything and anything, just like a little monkey. In other words, Katlyn is able to be your typical two-year-old--with the attitude and everything, despite all the isolation in her life.
Katlyn is our little angel and she is such a little trooper to go through all of this. She always has a smile on her face. She is so awesome.

I know that it has been awhile since I have updated Katlyn's blog but well a lot just hasn't been happening. I was hoping that when I updated Katlyn's blog I would be able to come here and let everyone know that we were finally going to be getting Katlyn out of the hospital. Unfortunately that is not the case yet.
We are still in the hospital because right now this is the safest place for Katlyn. Ideally we would like to live in with my mother for some extra help in all areas. Basically we need to start over from scratch. The problem is my mother's home is not safe for Katlyn. Her home is equipped with a forced air oil furnace, which means that all kinds of bad stuff would get blown through the rooms and possibly make Katlyn sick. It looks like we will need to have baseboard electric heating installed, the carpets removed and some kind of HEPA filtration in place before we move in. We have no idea what a project like this would cost, but frankly we don't have much at all. We have been going at this for a very long time and it has been incredibly financially straining and neither of us are working. Fifteen months is a long time, and we would like to keep adding to the time we have to spend here.
I wish we would be home for Christmas. Katlyn had to spend her first Christmas here and it was very hard. I would love for Katlyn to be able to wake up in her own home and be super surprised and have a nice turkey dinner.
Katlyn is doing great. Today her neutrophil count was up to 1100 and her lymphocytes were 100. That is the highest her neutrophils have ever been without assistance. We are very excited to see Katlyn making progress. This weekend we will be taking Katlyn outside, weather permitting. Tomorrow night there will be the parade of lights in Halifax and they just so happen to past right in front of the IWK, so we hope to take Katlyn to see it. She won't be able to stand on the side of the road with everyone else, because there are just too many people, but we are hoping that we can get a good view inside the parkade and no one will be around us.
I think Katlyn will absolutely love it. I will make sure to post some pictures of this weekend as soon as I get a chance.

Katlyn's first time outside in N.S.

It is so nice to be back in Canada. I knew I really missed being close to home, but now I know just how much I did miss it. Right now the IWK is the closest thing that we know to home and it is so nice to come back here to everyone waiting for us. It was nice to be able to see our families too. The visit with all the Grammies, Grampie and Haley was great. We missed everyone so much. It was very interesting to watch Katlyn's reaction to Haley. She was really fascinated by her.
While we were at the NIH, Katlyn was allowed to go outside, so long as all her numbers were at safe levels. We were very unsure how that would work once we came back to the IWK. This is a completely different environment, and frankly I couldn't even understand how we would safely get er from her room to the outside. After careful consideration we decided that it could actually be done safely by putting Katlyn's plastic shield over her and heading the least travelled and practically vacant part of the hospital. It wasn't so much the outdoors that scares us. It was getting Katlyn from her room on the 7th floor, all the way down on an elevator , and through the halls and out the building.
We discussed our ideas with Katlyn's doctor and he felt comfortable enough allowing her to go outside. We are so happy. Thank you so much Dr. Issekutz. Katlyn is so happy when she is outdoors. She gets these huge bursts of energy and I find that she glows after one of our adventures. I'm glad that her doctor here felt that because Katlyn had been going outside at NIH, that she could do the same here.
We had an awesome day yesterday. We went out to the play garden and Katlyn absolutely loved it. At first she was a little slow getting started, maybe because she hasn't been outside for so long. However, once we started to play soccer, she was off. She played on the swing, went up the stairs to the jungle gym by herself (with supervision of course) and down the slide by herself. After playing in the playground for awhile, we decided to take a walk to the waterfront to see some oats. Sure enough there were a couple out there as well as some ducks. Katlyn really enjoyed herself. I find that every time I'm that close to the ocean, I get a very overwhelming relaxing feeling. Apparently Katlyn did too, because she fell asleep on the way back. It was fantastic.
Katlyn is doing very well clinically too. Really we don't have any concerns. Like usual her numbers are slow climbing up, but they are going up. She hasn't needed GCSF for about a month now. Her neautrophils as of today were 740. Unfortunately her lymphocytes were only 70 today, so we will not be able to go outside until she is over 100. I'm going to talk to her doctor to see when we can repeat the test, hopefully Thursday or Friday. He has only been checking her on Mondays since we have been here. Also, Katlyn will have an infusion of IVIG tomorrow as well as an ultrasound of her thymus gland. They want to see if it has got any bigger since the gene therapy. The thymus glad is where t-cells are produced.
Katlyn's research numbers were great also. Her ADA activity is 20, her toxic metabolites are down to 4 and her t-cell function was 10,000.

Happy Halloween

Katlyn, you have grown so much!!!!!



Katlyn last year on Halloween.
What a sweety!!!!