So we started back up with the potty training again today, and so far a sucess. Katlyn made it to the potty. Yeah Katlyn!!!!!

First haircut

Katlyn got her first official haircut last week by her auntie Kathy, who was so great and came here to do it. Katlyn fell over heels in love with her auntie and had a very hard allowing her to leave. Thanks Auntie!!

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.