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.

Monday, November 19, 2007

Just hanging out at the IWK

Katlyn is doing very well. I was hoping that I would have some parade pictures to put on here, but unfortunately I have not become familiar enough with our camera in order to take pictures that actually show up properly. I have a few, but they are actually too embarrassing to put on here. With a journalism and photography background, you would think that would have been able to figure it out. The lighting was difficult because we were on the top floor of the parkade looking down on the parade. Katlyn had a blast. She enjoyed all the lights and music and sometimes she even got to see a passing dog or little children running around down below.
It was a pretty chilly night, but Katlyn was really bundled up nicely. She was so hyper from the parade, that she didn't even want to go to be. She just kept signing jingle bells.
Nothing is really new as far as Katlyn goes clinically. We will be going back to the United States next Monday for Katlyn's first follow up appointment. We are pretty nervous because she will be flying commercial, but I'm sure she's going to be fine. She'll probably just watch Elmo the whole time.
Other than that we are working our hardest to fine a safe place for Katlyn to live before Christmas. Really, it is our ultimate goal. Katlyn is doing fantastic and she is able to leave, so now we just need to get out of here. She had to spend her first Christmas in the hospital and we are trying our absolute hardest for her second to be at home.
We also learned that Katlyn will be able to play with Cole, another child with SCID who had a transplant in April. Their doctor said that we'll take a look at her bloodwork when we get back from the US, and everything is good then we can go on a pass to visit him. We know his parents, Jenn and Mark very well, and know how clean their environment is. We also know we are going to have a blast. It's so exciting to think that Katlyn and Cole are going to finally meet. We have been all going through this together, with both of our children sick. It's so neat how they will meet very soon and will both be each others first little person to play with. We are also planning on visiting them when Katlyn has her followup appointments at the IWK.
As you'll see in the pictures, Katlyn has taken a liking to playing in the lockers amongst a million other things. She now climbs everything and anything, just like a little monkey. In other words, Katlyn is able to be your typical two-year-old--with the attitude and everything, despite all the isolation in her life.
Katlyn is our little angel and she is such a little trooper to go through all of this. She always has a smile on her face. She is so awesome.

Friday, November 16, 2007

I know that it has been awhile since I have updated Katlyn's blog but well a lot just hasn't been happening. I was hoping that when I updated Katlyn's blog I would be able to come here and let everyone know that we were finally going to be getting Katlyn out of the hospital. Unfortunately that is not the case yet.
We are still in the hospital because right now this is the safest place for Katlyn. Ideally we would like to live in with my mother for some extra help in all areas. Basically we need to start over from scratch. The problem is my mother's home is not safe for Katlyn. Her home is equipped with a forced air oil furnace, which means that all kinds of bad stuff would get blown through the rooms and possibly make Katlyn sick. It looks like we will need to have baseboard electric heating installed, the carpets removed and some kind of HEPA filtration in place before we move in. We have no idea what a project like this would cost, but frankly we don't have much at all. We have been going at this for a very long time and it has been incredibly financially straining and neither of us are working. Fifteen months is a long time, and we would like to keep adding to the time we have to spend here.
I wish we would be home for Christmas. Katlyn had to spend her first Christmas here and it was very hard. I would love for Katlyn to be able to wake up in her own home and be super surprised and have a nice turkey dinner.
Katlyn is doing great. Today her neutrophil count was up to 1100 and her lymphocytes were 100. That is the highest her neutrophils have ever been without assistance. We are very excited to see Katlyn making progress. This weekend we will be taking Katlyn outside, weather permitting. Tomorrow night there will be the parade of lights in Halifax and they just so happen to past right in front of the IWK, so we hope to take Katlyn to see it. She won't be able to stand on the side of the road with everyone else, because there are just too many people, but we are hoping that we can get a good view inside the parkade and no one will be around us.
I think Katlyn will absolutely love it. I will make sure to post some pictures of this weekend as soon as I get a chance.

Monday, November 5, 2007

Katlyn's first time outside in N.S.

It is so nice to be back in Canada. I knew I really missed being close to home, but now I know just how much I did miss it. Right now the IWK is the closest thing that we know to home and it is so nice to come back here to everyone waiting for us. It was nice to be able to see our families too. The visit with all the Grammies, Grampie and Haley was great. We missed everyone so much. It was very interesting to watch Katlyn's reaction to Haley. She was really fascinated by her.
While we were at the NIH, Katlyn was allowed to go outside, so long as all her numbers were at safe levels. We were very unsure how that would work once we came back to the IWK. This is a completely different environment, and frankly I couldn't even understand how we would safely get er from her room to the outside. After careful consideration we decided that it could actually be done safely by putting Katlyn's plastic shield over her and heading the least travelled and practically vacant part of the hospital. It wasn't so much the outdoors that scares us. It was getting Katlyn from her room on the 7th floor, all the way down on an elevator , and through the halls and out the building.
We discussed our ideas with Katlyn's doctor and he felt comfortable enough allowing her to go outside. We are so happy. Thank you so much Dr. Issekutz. Katlyn is so happy when she is outdoors. She gets these huge bursts of energy and I find that she glows after one of our adventures. I'm glad that her doctor here felt that because Katlyn had been going outside at NIH, that she could do the same here.
We had an awesome day yesterday. We went out to the play garden and Katlyn absolutely loved it. At first she was a little slow getting started, maybe because she hasn't been outside for so long. However, once we started to play soccer, she was off. She played on the swing, went up the stairs to the jungle gym by herself (with supervision of course) and down the slide by herself. After playing in the playground for awhile, we decided to take a walk to the waterfront to see some oats. Sure enough there were a couple out there as well as some ducks. Katlyn really enjoyed herself. I find that every time I'm that close to the ocean, I get a very overwhelming relaxing feeling. Apparently Katlyn did too, because she fell asleep on the way back. It was fantastic.
Katlyn is doing very well clinically too. Really we don't have any concerns. Like usual her numbers are slow climbing up, but they are going up. She hasn't needed GCSF for about a month now. Her neautrophils as of today were 740. Unfortunately her lymphocytes were only 70 today, so we will not be able to go outside until she is over 100. I'm going to talk to her doctor to see when we can repeat the test, hopefully Thursday or Friday. He has only been checking her on Mondays since we have been here. Also, Katlyn will have an infusion of IVIG tomorrow as well as an ultrasound of her thymus gland. They want to see if it has got any bigger since the gene therapy. The thymus glad is where t-cells are produced.
Katlyn's research numbers were great also. Her ADA activity is 20, her toxic metabolites are down to 4 and her t-cell function was 10,000.

Happy Halloween

Katlyn, you have grown so much!!!!!

Katlyn last year on Halloween.
What a sweety!!!!

Wednesday, October 31, 2007

Thanks to the NIH and Children's Inn

I would like to thank the NIH for the most obvious thing first of all. Thank you so much for accepting our little girl into the protocol and giving her a fighting chance at life. I think that everyone has agreed that the gene therapy is working. It may be slow coming, but Katlyn's immune system is getting stronger and stronger everyday. I really hope that Katlyn's doctors at the NIH realize what they have done for her. With a bone marrow transplant, the outcome was questionable and very scary. You have saved our little girl's life. Each of you have a part in that, and we thank you from the deepest depths of our heart. We look foward to working with you over the following years to watch Katlyn's progress.
I'm so glad that Katlyn was able to benifit from her treatment, but also be able to help children that come after her with this diagnosis. Participating in a research study is very difficult because you have a lot of unanswered questions, but Katlyn's doctors did their absolute best in trying to provide us with as much information as possible.
We also thank you for trying to work with us to make our stay as comfortable as possible. We understand that our practices were not what you were used to, but I think that you tried your best to help put our minds at ease. Some of the nurses that worked with Katlyn are some of the most fantastic people we have ever met, and we are going to miss seeing you and will look foward to seeing you when we come back for Katlyn's checkups.
I don't really think I could ever let the Children's Inn know how thankful we are to them either. You gave us a support network and leaning post when we needed it most. You really took care of us in so many different ways. We loved all your hugs and kind words over the six months we spent there. You were there for us when things got stressful and always did everything you could to take the stress off our shoudlers as much as possible. I think everything you do is amazing and everyone who has a part in making the Children's Inn what it is, is so special.
Thank you to everyone at NIH and the Children's Inn who had a part in Katlyn's treatment and helping to make our stay as comfortable as possible.
Some of you really touched our hearts and we will never forget you.

Friday, October 26, 2007

I am happy to update Katlyn's blog with the news that we are back in Canada. YEAH!!!!Katlyn is at the IWK Children's Hospital in Halifax, N.S., for an unknown amount of time. We know one thing for sure. We still have to get things ready for her. Katlyn needs a safe place to live first. So right now we are looking at my mother's home to decide if that would be safe enough. If it isn't we have to find an apartment in Moncton, along with new jobs and the whole deal.
Katlyn is doing great though. She seems to have transitioned very well. When we came back here, it almost felt as though we never left. They were definitely waiting for us with open arms. We will be returning to the NIH on Nov. 26, for Katlyn's research blood.
Today is a very exciting day because John's mother, father, two grammies and super special daughter Haley, will be coming to visit. We have missed them so much. It will be very interesting to see how Katlyn and Haley interact with each other. I think it's going to be a blast. My mother will be coming to visit on Sunday, and I can't wait. We have missed everyone so much. It will be so refreshing to have people we love surrounding us.
Katlyn's neautrophil count as of Wednesday was 740, so it's looking like she may be ready to leave the GCSF behind (knock on wood). It has now been over two weeks since she has received her last injection. We are still waiting to hear about some of the research blood that they drew before we left. I'm thinking we should get some of the results at anytime now. Katlyn is on a double isolation right now, the first being her condition and the second because she came from another hospital. They have tested Katlyn to see if she has the antibiotic resistant super bugs. It's their policy to do this will all patients coming from another hospital. It shouldn't be much longer and she will lose that isolation.
Her doctor here has been fantastic in allowing Katlyn to still continue with her very open diet. She is allowed to get meal trays from the kitchen here. He even OK'd her stuffed animal, which she was very pleased with.
It's so great to be back. I LOVE CANADA!!!!!!!!!!! It's very nice to look at the big picture too, and see that that chapter of Katlyn's life is behind us now. That light at the end of the tunnel just keeps getting brighter and brighter. Someday soon we will be able to take Katlyn out of the hospital and that day is get closer.

Friday, October 19, 2007

So Katlyn is doing very well and just to let you all know her burn has cleared up very well. In one spot on her face, it must have been where the burn was the worse, the skin dried out and we were a little scared that it might start peeling off and scabbing. So we stopped using the burn cream and started to apply some special cream that we got from Canada (Eucerin Glycerin- not anywhere in this Country). So the rest of the dry skin eventually came off and it looks fantastic. She has one tiny little red spot, which I think is going to fade out. Luckily she never got it her eyes, developed an infection or is going to have any scarring.
She is doing FANTASTIC, her new word by the way. Katlyn's last t-cell function came back at 28,000 and her research blood is going to be drawn a bit early, on Monday Oct. 22. So that means that we will be returning to Canada on Tuesday. We are not waiting on any test results, so it should be a go ahead. We are extremely excited. The last week has been really wonderful for us because Katlyn has been staying at the Children's Inn every night and only coming back here every second day. We can tell she really loves it too. She actually get pretty upset when her she rolls up in her little red car in front of her hospital room door. She has seen what it is like to be in a warmer, more homey setting.
Her speech is coming along very nicely. I actually don't think there is anything she won't say. New words are coming out all the time. We are actually going to get her hearing tested as soon as we get back to Canada, because we have our suspicions that it may be a little better than her last hearing test (which was done a long time ago now). It will nice to check it anyway.
So we are looking forward to going back to the IWK. Although Katlyn will still be hospitalized, we are very excited to be closer to home. As soon as we get home we are going to plan a visit with Katlyn's sister Haley, all her Grammies and Grampy. We are so excited. We will not have to be back until Nov. 26, and then after that Katlyn's appointments will change to every two months. I'm going to post a bunch of pictures of our girl because I know I have been slacking in that area. We have just been so busy having our little girl at the Children's Inn, and having a great time

Sunday, October 14, 2007

It was a pretty tough weekend for our little sweety. On Friday we were at the clinical centre and all set to come over to the Children's Inn with Katlyn. We had Saturday completely off, which meant that for the first time in over a year, Katlyn would not have to go to the hospital all day. So we though. Katlyn was at the door anxiously waiting to get out with a couple of her toys in her hands, including her giggly wiggly and a Halloween flashlight that we had recently found for her. Anyway I had to put a mask on her so I took the toys our of her hands and she forgot all about them, so they were left behind. When we got to the Children's Inn we took of the mask to find that Katlyn's cheeks we red. It was windy outside, so we thought it could be possibly that.
She was fussy, but also very tired and went for a nap. When she woke up, she had these very defined red marks on her face. Upon taking a closer it look, it looked like a chemical burn to me. I lightly wiped at it with some baby soap and water, and she freaked out. We rushed Katlyn back up to the Clinical Centre to get it looked at. The doctor came in and we were all scratching our heads trying to figure out what could have made such a mess of her face. Katlyn was fussing so I grabbed her giggly wiggly toy, which was covered in an oily substance. I then quickly grabbed the flashlight, which was completely covered in it. We opened it up to find the inside was also covered. The batteries had leaked, resulting in a chemical burn on Katlyn's face.
Friday night was a very long night. Katlyn was very uncomfortable and I felt as though I only got minutes of sleep. I had to apply some ointment to her face all through the night to prevent infection and to soothe the burn. Also we had to give Katlyn some benadril because it looked as though her body was having a reaction to the chemical. The Yesterday the burn looked a bit better and hadn't blistered. We have to be very careful with it so that it does not get infected and it scares us.
Now we're Sunday and again the burn looks a bit better. Hopefully it heals up without any infection and no scarring.
She's been a trooper though. Even though it hurts for us to wipe at it and apply the lotion, we are still able to, even though she gets upset. I can only imagine how much it hurts. So we can't take her outside right now because the sun on the burn could make it worse. She is now back at the Children's Inn with us, but Poison Control and the doctors check on her regularly.
What a scare. This toy was made in China and put on the shelf by the store where I purchased it. I am now working on getting them to rectify the situation. I hope to get the toys pulled from the shelf for starts. I need answers and I'm going to their corporate offices for some. If I don't feel as though they have made their best effort to rectify the situation I will be seeking some legal advice and possibly going to the media. That should not have been on the shelves for starters, and who knows how many parents have bought that same flashlight for their child.

Thursday, October 11, 2007

No Nap for Katlyn

Today I was putting Katlyn for a much needed nap when I noticed one of Katlyn's doctors and a nurse at her window looking in. They stood there for a sec and then barged in. It was obvious that I was putting my little angel for a nap, but it was obvious they didn't care. Why they didn't care? They were coming to give us some fantastic news. Katlyn's t-cell function test results came back today and was an all time high of 28,000. YEAH!!!! The doctor told us that we could go back to Canada, we could stay at the Children's Inn, whatever we wanted. So here we are tonight with our little sweetie at the Children's Inn. We are in our glory and Katlyn, although very sleepy, is too.
So now we are faced with a decison of wheather we should stay here until the end of the month when her research blood is drawn, or go back to Canada for two and half weeks and come back. The thing is the government will be sending a special private aircraft to pick Katlyn up, and we don't want to put her in danger by sticking her on a commercial flight so soon afterwards. So we are checking to see if it is possible for the next research blood to be drawn in Canada, as a one time exception. I'm sure we will be able to id that is even an option, but there are rules and we need to find out if this is one of them.
Regardless, right now we are very happy. We have our little girl at the Children's Inn with us, and it feels really great. She had spent two nights here but the doctors felt it was in Katlyn's best interests to stay in the postive pressure room at the hospital because of her numbers. However after the results came back today they felt comfortable allowing her to come here. While Katlyn is here we don't allow her to go in any of the common areas. She is only in our room, which we have thourghouly cleaned from top to bottom. Besides that she goes outside and she will now make daily visits to the clinical centre, across the street.
It's hard to say right now when we will be coming back to Canada. Based on her numbers, she is ready to go now. However, we just want to make sure that first and foremost we put Katlyn's interests first.
She is doing great though. We still do have a long road ahead of us, but Katlyn is getting better and that's the most important thing. When we get back to Canada, Katlyn will be back at the IWK until she her ready clinically and we have a place safe enough for her to live. We have so much work to do, but we will get there.

Monday, October 8, 2007

Happy Thanksgiving

This weekend has been incredible. Yesterday was the Talladega Nascar race so Johnathan and I got the huge idea that we would clean our room at the Children's Inn from top to bottom and bring Katlyn over. She had a blast. It was so amazing. It was really nice to feel normal for the day. We had no worries really, it was actually pretty easy. As soon as Katlyn came in the room she pulled her socks off and took off, running back and forth. It was funny. She seems to like it here. I also cooked Katlyn's supper for the first time ever. I made chicken, potaoes and vegatbles. I was so nervous. I really think I washed my handss like 50 times. I knew her chicken was done cooking at a certain point, but I still cooked it for a little longer, just to make sure.
It was so nice for us to all be eating supper at the same time. It was so special. When it came time to bring Katlyn back to the hospital we didn't want to very badly. It felt so strange. It almost felt as though we had done something wrong and were only able to visitation with Katlyn. It was not a pleasant feeling.
This morning I discussed the idea of Katlyn spending the night with us at the Children's Inn, and the doctor was in favour of the idea. She said she felt very comfortable with us taking Katlyn and she knew that we were careful enough that she would be safe. So we were allowed to bring Katlyn to the Children's Inn again today.
We didn't have a nice turkey dinner and yes we are still not home, but today was so great. I don't know how I could come close to describing it. Basically we feel a little normal. We feel as though we had some privacy for once and weren't under a microscope all day. It was so nice to have our little girl running around playing and getting into everything. What joy!!!!!!!!
Now she's asleep and we are going to join her shortly. It's so nice to be able to sleep in the room all three of us together for once. A little bit of normalcy goes a long way. We will have to take her back early in the morning to meet with the doctors. We don't know if this will be a regular thing, or just a one shot deal. It's so great though and we know that someday soon, things will be normal. Katlyn is doing very well right now and she is going to get a little better everyday.
Happy Thanksgiving to Everyone.

Saturday, October 6, 2007

I know probably a lot of you have been waiting for on an update about if we're back in Canada or not. And for those of you who know we're not, you're waiting to hear why. It's actually rather complicated, but here goes. Katlyn's t-cell proliferation test came back and was 8,000, and she needed to be 10,000 in order to be discharged. We were extremely upset about the decision about not going home. You see, on one hand we have been told that there is a lot of probability of error with such test and they don't even necessarily know what this test means because it's not a commonly done test. On the other hand we have been told that we are unable to leave three times because of this test alone. Because Katlyn's t-cell function was so close to 10,000, we felt it wasn't enough to keep her here. Actually a lot of people were in agreement. Katlyn will not be literally going home. She will still be in isolation at the IWK in Halifax, N.S..
Now here's where it gets tricky. Because the doctors taking care of Katlyn are the ones who set up the protocol and all the guidelines for discharge, officially they have to stand by that. It does make sense. Where would they draw the line. What if the next child was say 7,000. They set those numbers up for a reason and they should stand by them. So we are still at the National Institute of Health. For how long? Who really knows. We know that they would like to keep Katlyn here to monitor her progress for as long as they can. We know that we are going to base our decisions about when we leave on Katlyn and what's best for her. If being here is the safest thing, then we'll have to stay here. Ultimately we would like to get Katlyn out of the hospital altogether. A hospital is not the best environment for an immune compromised child. At this time however, we don't have a safe place set up. Our hands are kind of tied right now. We are looking at the possibility of living with my mother, but we are still unsure if that's the best plan. We need to look at the cost of preparing the house, and if it's at all doable first of all, and if the fund raised dollars are going to be able to cover it. If it's a large costs it's doubtful that they will because there just isn't that much. We have been going at this for over a year now and to tell the truth, it has been a huge financial stress for us. Other than that we might have look at finding an apartment that will be safe enough for Katlyn to live. We have to make the smartest move for Katlyn. We have come to far to make any silly decisions. Besides that we will need to look for a new source of income. We have so much to do before Katlyn will be able to officially go home.
At this time I would like to thank my friend Sandy who is busy right now trying to organize a fundraising even for Katlyn. She seems really busy at it and I'm sure it's going to turn out to be a huge success. She's planning on having a raffle. Also a big thanks goes out to Duane from Duane's furniture in Woodstock, N.B., for donating a very nice wooden rocking chair for the event.
Katlyn is doing very well as usual. She is loving the time she gets exploring the outdoor. Today was a hot day so we waited until this evening before going out and it was great fun. Katlyn ran around with her little flashlights. I think this outing gave Katyln a new perspective on things a bit. Also when we came back I was undressing Katlyn from her dirty clothes and getting her ready for a bath. I asked her if she had fun and she immediately gripped on to me tightly, giving me one of the biggest hugs ever. She just kept saying "thank you, thank you." Then when Johnathan came in she blew some kisses his way again saying "thank you, thank you." It was so cute!!!
So tomorrow is a big day for us because we are going to begin potty training Katlyn. It seems like she's ready and we are able to devote our time 100% right now, so it's seems perfect. Hopefully she won't give us too hard a time. It's hard to say, but I think that a little girl who knows how to call 911 several times and program the hospital bed so that if get out of it the alarm will go off, is definitely smart enough. We love you Katlyn.

Wednesday, October 3, 2007

Monday, October 1, 2007

Day 131 Post Transplant

Today was a pretty wonderful day. Katlyn's neautrophils went up a bit on their own and her lympocytes also increased a bit. She was able to go outside, so of course that is where we spent most of our day. It was an adventure. Katlyn was the most excited I have ever seen her when I told her she could go outside. It seems as though every time we go outdoors, she gets more and more comfortable out there. Today she was all over the place exploring. She was hammering things with her sticks and now has a new found love for rocks. She played and played with rocks forever. She counted them, then counted them again. She scraped them along the walkway, so that she was drawing a little picture. She had so much fun. I think we spent about 5 hours out there today.
Tomorrow is IVIG day and that means it is going to not only prevent Katlyn from going outside, but also keep her very close to her IV pole, restricting her mobility and freedom.
So Wednesday we'll find out what Katlyn's t-cell function is and then we'll go from there. She is doing great though. I really think the gene therapy is working. Someday soon Katlyn is going to be able to lead a normal life.
I would also like to thank everyone that comes on here and reads Katlyn's blog and keeps us in their prayers. Having a sick child is a very stressful and heartbreaking situation to be in. Some days I find I have lows, whereas other days I have this happy buzz. It really is a rollar coaster we are riding on. But thank you to everyone who does continue to supprt us through this very difficult time. We really do need all of the help and support we can get, and we do appreciate every bit of it.
Thank you all.

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.