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.