Sunday, September 30, 2007

Katlyn has not been able to go outside this weekend. We were hoping that she would because the weekends are the best time to take her outside. This place is totally deserted and not a whole lot is going on. However Katlyn's neautrophils have remained above 500, so she hasn't needed any GCSF. However her lympocytes are just below 100, and that is what has prevented her from leaving her room. It just breaks my heart. She enjoys herself so much outdoors. Katlyn enjoys having a little freedom and exploring so many new things. In this room though, she seems a little down because everytime she talks about going outside we tell her she can't.
It's so hard. I know that the situation could be a million times worse, but something so simple as going outside. I mean, really? I just want Katlyn to be able to live a normal life so badly. Oh I dream of the day.
Actually I think I'm a little bummed out today. There is a possibility that we could go back to Canada, but we don't even dare let ourselves get even a tiny bit excited. We're so scared if we do, we're just setting ourselves up to be disappointed. It is so fustrating.
Besides that I have this horrible feeling like we're all alone. It almost feels as though people have gotten used to the idea of Katlyn being hospitalized. When Katlyn was first diagnosed, we did have an overwhelming feeling of support from every direction. So many people were helping us. Now though, things are different. I often wonder if maybe people have almost forgotten. Katlyn is still a sick little girl. We have been going at this for more than a year, and God only knows how much longer. It seems like forever. The need for help and support is greater now than it has ever been, but I have this feeling of helplessness. I'm not really sure what to do.
I can remember when my best friend Aleisha was killed in a car accident and how badly that hurt. We knew eachother since high school and were extremly close. We ended up employed at the same place. Anyway when Aleisha passed away and I returned to work, her desk was full of cards and flowers and her computer was turned around. Noone bothered even trying to sit there for the longest time. But I can remember the day that someone did. I can remember holding my breath, and as they sat down, wanting to scream at them, and then I just wanted to cry and never stop. The feeling that I have is very similar to that. It feels as though people have moved on with their busy lives and have adjusted to us not being around. They've moved on in some sense.
It's hard to think ahead, about what we are going to do and what's going to happen. Johnathan has lost his job so he will have to find a new one when we get back. I might even need to work as well. We'll have to find a new place to live, move all of our belonings from Centreville to Moncton, which is about 5 hours a way, and the list oges on. It just all seems very overwhelming.
Sometimes it seems as though we are living with a black cloud over our heads. It will be very nice when things start taking a turn in the right direction. It's just right now there's so much uncertainty in all aspects of our lives.
I just love my girl and want everything to be okay.

Tuesday, September 25, 2007

Choo Choo

Here we are painting a train for Katlyn
Ta Da!! Katlyn in her new train.
She seems really pleased with it.
And so busy!!!
My sweet Angel

Today was a great day. Katlyn was not able to go outside today because her lympocyte count dropped a little, but on the plus side her neutrophils were up. They think it may have been a posibility a mistake was made because of the increase and decrease of cells. Usually when this happens, it may be sign that her body could be trying to fight something. There are no signs of any sort of infection though. Katlyn is doing fantastic. She seems to be getting banged up quite a bit from playing so roughly, but that's about it.
So, because we were unable to take Katlyn outside, we decided to make the best of it and we built a train out of a cardboard box. It was so much fun and Katlyn loves it. She get's in the train, then out of the train and back in again. "Choo, choo,"is all that can be heard from her when she's in her train. It is so cute. It was a fun day though, and we hope her lympocytes and neutrophils are at safe levels, so that we can explore the outdoors tomorrow.
Well i have to say the last few days have been so amazing for us. Katlyn has been going outside quite often, so that is what we've been looking forward to each day. From the time her little feet hit the floor,Katlyn is practically begging to be brought outside. She'll give a lot of hints, for instance grabbing her sunblock, putting on her sunglasses, and the obvious hints like making a mad dash towards the door and saying "out" or "outside."
Katlyn has always been a very happy child. Although she has been through so much in her short little life, she never seems to be bothered by any of it. Frankly,Katlyn just doesn't seemed fazed about a whole lot in life, except on thing: going outside. Every time her door opens and then closes again, a little squeal comes out of her mouth. She's always ready and willing to go. So each day we wait to see what Katlyn's numbers are at and so long as it's nice, and not too hot, we take her outside immediately. Some days, we have had to wait until after her dinner because the heat would be too much for her. Regardless of what time of the day we go, we all make the best of it and have a fabulous time.
On Sunday I took Katlyn outside for the first time all by myself. She woke up around 7 a.m., was fed and ready for her day and I just thought we might as well go. I questioned the plan a few times because there is so much to do once she comes back inside, and I wondered if I would be able to do it on my own. It was great. We went for a nice long walk, including stopping by our window at the Children's Inn and knocking so that Daddy would get a nice surprise. After that we went to the park and played until I could tell she was tired and hungry. So when we came back inside I quickly washed her hands, took all the stuff away that had been outside with us, ordered her lunch and gave her a bath. Once she was finished her lunch I put her down for a nap, which she didn't seem bother by (she was out like a light). Three hours later,Katlyn was still sleeping and Johnathan and I were outside her room pacing waiting for her to rise, so that we could go back outside. We ended up waking her up in the end. So we spent the afternoon again walking and playing, and when bedtime came Katlyn slept like a little angel.
Today was a hot day. I even found it was a little difficult to stand the heat just from walking form the Children's Inn to the NIH, which are just across the street from each other . So we waited until after her dinner and then brought her to the playground. Today was different than the previous days we have been outside because three small children accompanied us while we were there.Katlyn seemed quite tickled by the children. There were two babies and a two-and-a-half year old girl. They were very quite children, so Katlyn wasn't afraid. She actually took interest to the infants. She wanted to touch them very badly. She kept edging closer and closer, each time snatched by either Johnathan or I. We explained to both mother's about Katlyn and how she couldn't be exposed to any germs, and they were extremely understanding and helpful. Both mothers would hold their baby and I would hold Katlyn, and we allowed our children to get a good look at each other. They all seemed to have a great time. One of the little babies was just learning to walk, so she took an interest in Katlyn and giggled every time Katlyn took a step. It was a little scary, but at the same time, it was nice to see our daughter having some interaction with little people just like her (mind you, from a distance, but still).
So tomorrow Katlyn will have her research blood drawn which will tell us a lot of things about how the gene therapy is progressing. We are going to plan to come home for next week, a test pending. We will find out what Katlyn's t-cell function is next Wednesday and if it is above 10,000 and all of her other numbers are good, we are free to go back to Canada. It will be really nice when we do finally get to go back home, but at the same time, we're trying to prepare ourselves for not going home just yet. This will be the fourth possible chance to go home. We don't want to get our hopes up because we don't want to be hurt so badly like the last time. However, we still have our fingers crossed. Please keep us in your prayers. They have worked very well so far, and we still have a long way to go.

Friday, September 21, 2007

Katlyn is still doing fantastic. Things have been very exciting lately because we have been taking her outside, her numbers permitting. Yesterday was Daddy's birthday and her numbers were at a safe level, so we were able to spend the majority of the day outside. She seems to be getting more and more comfortable being outside, as well as wanting to go outside from the moment she wakes up in the morning. Every time her door opens she gets pretty upset when it closes before she has a chance to make it out to the playground. Katlyn is like a new little girl. She absolutely loves the outdoors. Today was a warmer day so we weren't able to spend as much time as we would have like, but we still got to go. Today she wanted to bring her baby outside with her and we also brought some bubbles. It was a blast. She was chasing bubbles everywhere.
It will be so nice when Katlyn is able to play with another child. That will be incredible. Luckily she has an older sister, Haley. So as soon as we get home she will be able to play with her.
Katlyn is doing pretty good. Things are still really slow. Her numbers are about the same and she is still getting the GCSF. She no longer has to be hooked up to the IV machine everyday anymore. They switched her med back to oral, so that's really great. Hopefully we'll be able to go home soon. It will be so nice to be back on Canadian soil again.

Thursday, September 20, 2007

Happy Birthday Daddy!!!!!!

We had a great day. I know it would have been better if we were home, but we made the best of it. Katlyn was allowed outside, and she spent about three and a half hours outdoors. What a day. Katlyn and I decorated and surprised Daddy with a special ice cream cake, that way Katlyn could have some too. When the tired out little bear went to bed, Johnathan and I went to see a movie. Luckily she had a great nurse, whom we trust dearly, and we were able to get away together for once. Thanks Gene!!!!
Happy Birthday Daddy!!!!!! We hope you had a great day!!!
This is a picture Johnathan shot after I fell off the swing
A pretty bird we spotted

Wednesday, September 19, 2007

Some Pictures

Katlyn Painting Happy Birthday Dad on her window, and painting her toenails.
She had a blast.
What a beautiful girl
Chillaxing with her baby
Katlyn being way too daring
Daddy getting a little silly. See what isolation can do to you. Here Johnathan jumped in Katlyn's crib with her. She loved it!

Sunday, September 16, 2007

I love the Pictures, I loved today

Daddy and his girl taking a little stroll in the park
Ahhhhh...Aren't they cute!!!!
A nice family picture

A Day Outside

So we were allowed to take our little monkey outside again today and the only way that I can even come close to describing how the day was is super fantastic, and even still that doesn't come close. Today we decided to do something a little different when we took Katlyn outside. Last time we took her for a walk in her stroller and I think it was really overwhelming, so this time we decided to take to the the park outside the clinical center. Since I have been here I have not seen one child playing in there and her doctor thought it was a great idea too.
So we brought her outside the back door and I got out the disinfectant wipes to clean the swing off. I scrubbed and scrubbed until I was sure it was clean. So then we put her in the swing and it was so cute. She was laughing and having a great time. Most playgrounds that I have been in are usually grounded in either dirt or mud, but this playground had a very special rubber mat underneath it to cushion the fall. Because it was a mat we were able to allow Katlyn the most freedom she has ever had in her whole life.
When she was all done with the swing I propped her down on the ground. At first she was really unsure about the situation. She stayed very close to her mother and father. Then she took three sideways step in one direction, and then the next. And I swear like a bolt of lightening, Katlyn was gone. I had to run to keep up with her. She ran around that playground, and around and around. At one point she heard a bird chirping and headed in that direction. She could see the little birdie sitting on top of the tree. So the bird stayed there for a few minutes singing us a song, and Katlyn wasn't missing a beat. She say right along with him. And then the bird was off and Katlyn got so excited.
She also got to touch a leaf, and eventually rip it off the tree. And then she found a stick and carried it around with her for the better part of her adventure. She would poke it at this and stick it in that. It was really nice to see our little girl having so much fun exploring.
I took her down the slide and Johnathan and I took her on the see-saw. She was saying up when we'd go up, and down when we'd come down. We had so much fun and not once did Katlyn try to take her mask off at all. She'd touch things, but never brought her hands up to her face. A couple of times she would trip a little and so we'd disinfect her hands and she was back at it.
The last time we took Katlyn outside we noticed that her eyes were very watery when we came back inside. She had sneezed twice and her eyes watered, but when she woke in the morning she was fine. I think it was probably because she just wasn't used to breathing the outside air. This time however, none of that happened. Her eyes didn't water at all.
I know the road that we have been on has been very long and hard, but seeing what I saw today is going to be a daily reward for us someday. I know we will never take advantage of our little girl having that kind of freedom. It will be really nice to one day sit back and watch our little girl run free. I look forward to that day so much. It is going to be awesome. Today was so much fun, for all three of us.

Here I am pushing Katlyn on the swing.
This is where we go a little faster and believe me, she's laughing her butt off.
Katlyn just taking it all in.Katlyn sees a flower out of reach, so she has to weasel her way between the fence and the flower garden to get at it.
What a smart girl. She does make it to the yellow tulip, which I can tell she's pretty satisfied with.
She was fascinated by this spinny thing
Here we are going through the gate of the playground. We go in and out about 50 times.
Here she is discovering a stick, which she carries around the rest of the adventure.
Katlyn loves trees, but when she came close she didn't really want to touch the leaf. Once she did though, she tore it right off.
Katlyn hears a bird chirping and wants to get a closer look.
Mommy and Katlyn going down the slide.

Friday, September 14, 2007


Daddy and his upside down girl
In this picture you can see the little necklace I made for Katlyn yesterday. It has a little dog on the front and she loves it.
Here we are counting.
Johnathan took this picture and I just love it.
And here I am giving my girl lots of loving

I'm so happy that today I can write some very great and exciting news about Katlyn. Her t-cell function test came back today and it was 20,000. This is fantastic news. This more or less confirms the last test result was probably an error because it was only 500 and the one before it was 18,000.

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Katlyn really wants to share some news with the world. Probably needs to send a message to herself in the future I imagine. This blog is hers so I just cannot stop her, plus it's cute watching Katlyn imitate her mother.
So that brings all her numbers back where they are supposed to be. We will not be leaving just yet though. Katlyn has research blood on Sept 25, which is not that far away so we'll stay until then Hopefully we can start planning it soon though and hopefully (I have my fingers crossed here), we'll be able to go home soon

Thursday, September 13, 2007

Some Great Pictures

Katlyn doing the balancing act with her applesauce.
"OH NO," are Katlyn's words exactly.
She must have thought the mess was already there, might as well have an applesauce party!!!! Actually, she's been doing this a lot lately.
Little Angel
Katlyn trying to touch the camera with her very dirty little fingers.
What a Peanut