So we are soon heading back to NIH. We leave here on Sunday, leave Halifax on Monday morning for NIH and then we'll back in Halifax on Tuesday. Once we get back Katlyn has to go to the IWK for treatment, which is about 6-7 hours, and then we have to drive back home, which is a 8-hour-drive. Really it feels as if we just came back from Halifax and already we have to go again.
Not a whole lot has changed since the last time I wrote. Katlyn's counts counts have been about the same. She has been around 700 neautrophils and 100 lymphocytes. We got the hopeful news that Katlyn's lymphocytes did go up a bit yesterday. She was 220. Hopefully she will keep going in the direction. It's really hard to believe that in a few months Katlyn will be a year post transplant. She is still extremely immune compromised, so we have to still be extremely careful. Aside from keeping Katlyn away from sick people and keeping our home safe and clean, we try our best to live as normal as possible.
Today Katlyn and I went for a little walk outside and she had a blast. John started a new job last week so we have been missing him like crazy. Since Thursday he has only had one day off and he is working 12 hour shifts. I know it's got to be hard for him too. You can tell he is so tired and misses us so much, but I know he is just trying his best to take care of us. Frankly he is doing a great job. We love you so much honey. Thank you.
Katlyn will be turning 2 years old on Tuesday. Wow!!! It really is so hard to believe. Our little monkey is growing up. I just can't believe how incredibly smart she is. She is so sneaky and has so much spunk in her and makes everyday a great adventure for us. She has just started to help me clean during the day, by bring me the clean laundry from the hall, trying to fold it, unloading the utensils from the dishwasher and picking up her toys. She is such a helpful little girl. She is also very polite too. She is all ways saying thank you or no thank you. We are so blessed to have such a wonderful little girl. Katlyn you are the greatest part of every minute, hour every single day in my life. I just love you so much. You are so tough.
I took her to get her blood drawn yesterday and she didn't even shed a tear. I had to take her by myself so I was a little worried about her keeping amused while I drove, but she was fantastic. She was laughing and having a great time. The ladies at the hospital are fantastic too. They gave Katlyn 3 stickers for being so brave and patient.
I will be on here real soon again with pictures of our grown up two year old. LOL. Every time I say that it feels weird. It seems like just yesterday that we brought her home from the hospital.Happy Girl
Little sweetie
I'm so hungry mom!!!! She spends a lot of time going in and out of the fridge.
The terrible two's coming on??

PLAYING WITH COLE

Here Katlyn is playing the piano, which she is very good at.
Katlyn falling out of the bottom of the car while Cole stands by.
What a couple of cuties

So we came back from our trip to Halifax very late last night, or should I say very early this morning. We did not like the idea of leaving Halifax so late in the day because it is such a long ride, but they were forcasting for snow in New Brunswick so we wanted to get home before it started. I'd say it was a very wise decison too. Looking outside this morning I know driving home would have been very dangerous. There is so much snow out there already.
So Katlyn got to play with her little friend Cole. Cole was diagnosed with SCID as well and they were both in the IWK at the same time. During which time we became very close with his whole family. We were very lucky they opened their home up to us and allowed us to stay the night in order to be as close to the hospital as possible for early morning. Thank you guys so much. The kids had a great time. I know Katlyn will be very excited when we are going back and she sees Cole again. It was very nice to see Katlyn interact with a child her age, something she has never been able to do before.
Her appointment went very well. It was a long day at the hospital because Katlyn had to have her treatment of IVIG and her RSV shots. I know she didn't like the fact that she couldn't run free and that right after that she was stuck in the car. Her doctor seemed plaesed with Katlyn. We had nothing to report. He said Katlyn can now start eating some more fresh produce like apples, oranges, melon and cucumber to name a few. I'm so excited about this, and Katlyn seems really excited too. She was thrilled when I handed her a clementine yesterday.
Other than that all I have to report is that Katlyn's lympocytes were 100 and neautrophils were 700. So we will be visiting the US in a couple of weeks. Katlyn's appointment at the NIH falls on her birthday Feb. 5.

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.

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.

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.