There nothing really new and exciting to report. Now we just wait for our date. I am so excited and can't wait. Our little girl will have a chance at a normal life. Well, I shouldn't be so quick at saying that. I believe that Katlyn is a very special girl and is going to continue to amaze us always. She's only 14 months old and can already do puzzles. I just found this out a few days ago. The Child Life play friend of Katlyn's, Debbie, mentioned that Katlyn was an extraordinary girl. She plays with pretty much any toy you put in front of her, but she finds the older children's toys much more amusing. We think they're a better challenge for her. I knew she was smart, but puzzle smart already. Like I said she is amazing.
She can walk too, but she is really taking her time with it. It's almost as if she is perfecting it before she really takes off. I have no doubt that if we were home and all was well living a normal life, Katlyn would be walking already. It really is amazing that despite the isolation she is still developing at such a rapid rate. Nothing seems to hold Katlyn back. She just adapts to an situation it seems. And thank God. We are so lucky to have such a little trooper. She is never going to be ordinary. I think that we will have a very outgoing and enthusiastic child. She will probably be very laid back and easy going, not letting a whole lot faze her. I love her so much. We are so lucky to have her.
All is well health wise. The stopped the antibiotics that she was taking as a precaution for her tooth that is giving her trouble. It still hasn't broke through the gum yet, but it doesn't really look infected either. We also have to take in account the other things that accompany antibiotics, like loose stools. I just hope the tooth breaks through soon. Her gum is so huge and sore. We have been using Tylenol and Orajel often to give her a little bit of relief. And yeas of course, the Popsicles. I was thinking about it one day and decided that teethers are just to germy, but a sealed Popsicle should be okay. I ran it by the nutritionist and she said it was fine. I found some really good ones by Del Monte. The are individually wrapped Popsicles just the right size for Katlyn. Not to mention, she love the mango, strawberry and raspberry tastes.
I did a little bit of reading up on Bethesda, the National Institute of Health and the Children's Inn. It all seems very nice. We're not really sure about what is included in our stay with Katlyn, but we know we will be staying at the Children's Inn right across the street. I know it is a non-profit organization, but the Ronald McDonald house and Point Pleasant Lodge are too and they still costs money. Next week I'm going to try and smooth out all those details. It looks like a very nice place though and it's close proximity to the hospital is defiantly an advantage. They have a slide show on their website at http://www.childrensinn.org I recommend checking it out. It looks amazing. At least we know that we'll not only be close to the hospital, but at a nice caring place too. I hope that the cost is part of the research project or little cost to us. That's my goal this week, to find out details about our stay.

Looks like a Monday

So we got a little more information about when we will be heading to Maryland. The actual procedure will take place on either the 20th or the 27th. They are just basically waiting for the results in Maryland from her bone marrow biopsy. We now know that there is nothing wrong as anticipated, they just want to get the results in their hands first and don't want us sitting around there waiting. Which we do appreciate. Because of the holiday the results won't even be sent out until Tuesday. Friggin Easter.
Any who, it's looking like we will be leaving for Maryland on Monday, April 16. If something should happen, say life flight isn't available or something like that, then we will be leaving on Monday, April 23. Maryland doesn't see the sense in us coming just before the weekend because again we'd just be waiting around, so they'd like for us to come on a Monday.
We know that a lot of people are hoping ad praying for us right now and we really appreciate it. We need all the hope and prayers we can get. Everyone has been so great and really supportive, and trust me when I say we need a lot of support. Thanks.
Katlyn's story was in the Times & Transcript in Moncton, N.B. yesterday and will be in the Bugle & Observer in Woodstock, N.B. tomorrow. We are getting some media exposure so that should hep us a lot, I hope. Her story made the wire so that basically means any media can pick it up and deliver it to the public. Her story was even in the The Daily News in Halifax, N.S. It's pretty exciting. Our little girl is going to partake in such a new and promising procedure. Very few children around the world get to go. We are so lucky. I was really hoping she wouldn't have to go to Montreal for a bone marrow transplant. I prayed day after day and cried so many tears. It's just too invasive. I didn't want her to have to go through that. And look, our prayers have been answered.
All of our stuff has been packed and sent home. Even the car is home already. Now we just wait for the call to go. We were very fortunate that Haley, Katlyn's sister, came to visit recently. Also, John's mom, dad, and both Grammies and even his uncle Emery from Vancouver came to visit. And then my sweet mom. The funny thing is all these people were already planning on coming before we knew we were going. It was very nice to be able to spend some time with our family before we have to go. I found it very refreshing. Now I'm ready, Maryland here we come.

On the Run Again

Just a quick note to let everyone know that Katlyn will be in the Times & Transcript tomorrow. I also noticed that she is on the wire by the Canadian Press which means that anyone can pick her story up if they want to and put it in their newspaper. This is so exciting. I really hope our story reaches a lot of people. Maybe someone is at home right now and their child could be displaying symptoms like Katlyn and they might get a CBC done to test their immune system. It would be really nice if her story would touch someones life. I want to make a difference. Maybe make a few people a little aware of this deficiency.

Katlyn is good. She will be going to the OR tomorrow for the bone marrow biopsy. They don't except any surprises and neither do I. She will also get some more IVIG.

So Busy, and Overwhelmed

I have been so busy the last few days I think if I stopped I would fall over so quick I wouldn't know what hit me. All of our stuff is packed and already home. It's so nice that all of the packing is out of the way. We just have to pack our stuff to go to Maryland. I skimmed Katlyn's clothes down to one drawer. It was really hard because a lot of the clothes still fit her, but I had no choice. We can't be lugging 800lbs of clothes there, and we'll only be gone for about three months. Can you imagine if we both weren't able to go on the plane because we packed too many clothes. LOL.

So what I know so far is that Katlyn has been accepted and we will be leaving really son. She will either have the gene therapy on the 20th or the 27th, which means Katlyn has to be there in plenty of time for that. Dr. Issekutz thinks we'll be leaving sometime next week. She has a bone marrow biopsy in the O.R. on Wednesday. It's just routine. They don't expect to find anything to be alarmed about. It's just protocol and it has been awhile since the last bone marrow biopsy was done. She will be sedated for the procedure and therefore have to get an IV put in. They figure at the same time she has the IV in they'll also fill her up on some IVIG. It's nice that they'll do do both the same day. I'd say it will be a pretty hectic day for all of us. She can't eat starting at 12 a.m., and the procedure is scheduled for 1 p.m. I'm really not looking forward to that part. I was thinking we might be better of trying to keep Katlyn up nice and late and then feeding her and putting her to bed so that she sleeps through some of the hunger anyway.

We are so excited!!!! It's really happening this time. Words cannot describe how happy I am. She was on Television today. Global called me this morning at 10 a.m. and wanted to do an interview with us at 11 a.m. I hadn't even fed Katlyn yet and I still had to shower. I was frantically running around trying to get everything done within the short time I had. The interview was amazing and they did a really great job. I hope the media exposure helps out a bit. As soon as I can figure out how to do it, I'm going to post it on here. Also, she'll be in the Times and Transcript, the Moncton paper, on Wednesday. Katlyn is so cute.

Just a quick note

I will be posting new news on this site throughout Katlyn's journey. Just be patient with me, I have so little time to do so much!!! Everything is really good though. I'm really motoring and getting a lot accomplished. We still don't know what day we'll be going but I'm sure we'll find out really soon that we're leaving really soon. We're thrilled. Finally, one step closer to getting Katlyn better. I promise I'l write longer really soon. As soon as I get a spare moment. I'll also make sure to post some pictures too.