Sunday, December 30, 2007

I would like to start off by wishing everyone a happy holiday. I know it has taken me so long to give everyone an update on Katlyn and how things have been going for us. It's really difficult for me to put it all in words exactly. We are just so overwhelmingly happy to have Katlyn finally home. Christmas was a huge sucess and I think Katlyn is definatly a fan of recieving so many presents at the same time. She seemed very pleased with every single thing that she recieved, and extremely interested in what her siste Haley got. Maybe even more so than her own. Katlyn woke up Christams morning and strolled into the living room and almost acted as if having a bllion presents in the room was normal. She knew exactly what to do. She opened one present at a time, and admired each one (well except for the clothes). This Christmas was so special for us. Last year was spent in the hospital and although we did our best to make the most out of the situation, it was still a hard time. Well everyday has been for a very long time. Being home is a lot of work, but we are so happy to do it. It is so nice to be able to cook in our kitchen again, and eat at the table like a family should.
On Christmas my mother and Katlyn's sister Haley were here to spend the very special day with us. It was so nice to be surrounded by people we love and have as close to a normal Christmas as possible. It was extrememly chaotic at times, but it was a exciting chaos. I always seem to get nervous whenever we're handling meat of any kind in the kitchen. We have to take extra care to not contaminate anything and end up getting Katlyn sick.
I think we are finally starting to settle in now. It is a lot to get used to, but we are finding routine and what works best. We have decided that the easiest way to do this is to keep everything from top to bottom disinfected--including our groceries. That way we're not wodering what's dirty and what's clean all of the time.
Katlyn seems extremly settled. She is developing very well. Just the other day she counted how many smiley fries were on her plate in Spanish--there were five. Johnathan and I just looked at eachother with a bit of confusion and amazement at the same time. This little girl is so smart. We have taken her outside as well as for drives in the car and she absolutely loves it. She is learing what the traffic lights mean--yelling "go daddy go."
Really Katlyn never seems to stop. She is a barrel of monkeys all day long. If she's not pretending to be on a big mountan of laundry (clean, lol) than she's sticking things in the dvd/vcr, grrrrrrrr. She runs around here all day long, until it's time for bed and then she crashes. She enjoys sleeping in her new toddler bed, but sometimes we hear her little footsteps sneaking in the night to come and find her mommy and daddy. Honestly, we feel absolutley blessed. We are home and it is so amazing. It's so nice to be able to experience all the things that we have missed out on until now. Katlyn is doing so well and we couldn't be happier.
We do still have a long road ahead of us, but I think the hardest part is now behind us. Right now we are recovering from the crazy rollar coaster ride we have been on, in all areas. I cannot believe how much cleaning supplies we are going through. It's nuts.
We have taken Katlyn to the local hospital twice since we have been home for a routine blood draw, and they have been great. Because of the tests ordered, Katlyn gets accessed by her port, but it's been a breeze. She does freak out whenever we go there, but she's happy in the end when the nurses hand her a couple of stickers. They have decided to now see Katlyn in the oncology clinic, to reduce Katlyn's exposure. We still haven't heard back how Katlyn's latest tests were, but the blood was only drawn yesterday and I imagine her doctor should call anytime.
So we will be going to the local hosital every Monday for blood work and visiting the IWK in Halifax every 3 to 4 weeks for IVIG, and go to the NIH in Maryland every two months.
We are happy though.
Thanks to everyone who has helped us so far though all of this. All of you make this time a little easier for us.

Wednesday, December 26, 2007

All I can say is Happy Holidays!!!!! We are home and loving it.
I will give a very in depth update just as soon as I can find the time. This girl keeps us very busy!!!! Everything is still going great. Katlyn is doing fantastic and she loves being home. It's so normal it makes me teary.

Monday, December 10, 2007

I know, I know. It's been such a long time since I have updated Katlyn's blog. It's just so hard to find a time that I can get access to the Internet, without leaving Katlyn by herself. With that said, there is so much to update about Katlyn.
We had her first followup appointment at the NIH and it was really crazy trying to get her on a commercial air flight. We were lucky when leaving the Halifax International airport. We found them to be extremely helpful in accommodating Katlyn. The moved our seats on the plane to the row right behind first class, so that people would not be passing by us frequently to use the washroom and such. As soon as the plane took off, Katlyn was out. She slept most of the trip, only awake for the last 20 minutes or so. I just slipped her Elmo DVD in the DVD player that child life, at the IWK, so graciously let us borrow. Everything was great until we arrived at the airport in the US. The Dulles airport is enormous. We had no idea where we were going. We had to leave the terminal we were at and take a shuttle with about 40 people other people. We were so nervous. We then took a taxi to NIH because we were too scared to bring Katlyn on another shuttle. I know she had just come off a commercial flight, but we really do not want to expose her to any more people than we have to. The visit to NIH was really quick. All they needed to do was draw her research blood and chat with us for a few minutes and then we were free to go. The trip back was not as easy. At first they were trying to make us pay extra for the type of seats we had on our way there. We didn't care though. We need to take every possible precaution that we can to keep our little girl safe. In the end they did not make us pay any extra because we really emphasized how important it was. Katlyn did not sleep on the way back at all. Besides that, the people ahead of us were really sick, coughing all the way. So, we decided to keep Katlyn under her plastic shield. I was so nervous, I ever wore a mask.
So we are still at the IWK, but not for long. It turns out that we will be moving back to Centreville. The reason why we couldn't at first was because of the well water. It turns out that we are going to boil Katlyn's drinking water, making it even safer than bottled water, and we are going to add a very small amount of bleach to her bath water 15 minutes before she gets in. This will chlorofy her bath water, just like you would be a swimming pool or a chlorification system--minus the $7,000 cost.
So as we speak Johnathan is home completing renovations. He has ripped the carpets up and is in the process of laying laminate flooring down. I will be going home for the very first time since Katlyn was first admitted 15 months ago. I really need to clean everything up and get thing finalized for Katlyn's time home. I will be leaving tomorrow and not returning until Friday. My mother will be coming and spending the week with Katlyn, God bless her.
It's also a possibility that Johnathan may get his old job back building fire trucks. It turns out that one of the guys he used to work with, will be retiring after Christmas. So we have our finger crossed!!!!!
Other than that, on Friday Katlyn's lines started to leak so we had to take it out. She had already been scheduled to have it removed today and a port-a-cath in it's place. So this afternoon Katlyn will be going to get her port put in, as well as a skin biopsy of some marks that she has on her body. We don't think these marks are anything to worry about, kind of similar to a birthmark, but we want to know as much about Katlyn as possible.
Katlyn's numbers have been really great. Before the gene therapy, Katlyn's neutrophils had never been higher than 800 on their own. She is now in the range of 900-1200. Her lymphocytes are still low, with about 150-200. However, the IWK did a marker test, and Katlyn is producing the different variants of cells that she should. The doctors we very pleased. We are still waiting to hear back about her research blood, which we should at any time.
So things are looking great. Katlyn will be home before Christmas and we couldn't be happier. The light is getting brighter each day. We are so excited to bring our little girl home for the first time in 15 months. She still has a long way to go, and this journey is far from over, but I think we are getting closer. Katlyn is going to be okay. She's a little trooper.