Sunday, April 29, 2007

Katlyn is doing very well today. I think that she's starting to think she doesn't need to do anything we tell her. ha ha!! She is a little bugger. Today during her intravenous antibiotic Miss Katlyn decided that she was going to start some trouble. She split the line in two. I couldn't believe it. I had to quickly re gown myself as she decided to do this. I was hurrying as fast as I could and Katlyn was laughing at me in hysterics. She has been into everything today. Playing with plugs and trying to run in the hall. It's crazy. The days really go by so fast because she keeps us so busy chasing after her. She just wakes in the morning and before you know it, it's time to put her to bed again.

John told me about something really funny that she did today. He was sitting on the bed watching his race and Katlyn was playing on the floor. She was on one side of the bed and then she wasn't. He could her laughing like crazy and before he knew it she was on the other side of the bed. She had crawled underneath the bed. What a crazy little girl. That cuddly little Katlyn that everyone used to know is changing before my very eyes. She wants her independence. She wants run free around this room and she refuses to let anything hold her back. I love it.

Today she tried pizza for the first time and I really think she enjoyed it. She really enjoyed the piece of carrot cake that followed. We don't really give Katlyn sweets so I decided that today would be special. Every little girl needs a little sweet stuff sometimes. She loved to stick her finger in the icing and lick it the most. Mmmmm.....all the way. I love her so much. It's so hard to believe that with how much I do love her that I could love her anymore, but I do every moment. I fall more and more in the with who she is and who she is becoming, even if she is bad sometimes. Ha ha!!

Sorry the pictures I posted were a little dark. I'm just figuring out our camcorder and how to take pictures. The ones I took today are a lot better. I'm going to replace the video as well because it's not as dark as the previous one.

I'm feeling about the same. Not really in that much pain, but I am uncomfortable and I'm really excited that Tuesday is so close. I'm sure that there will be no problems this time because we got a pre-approved letter from the insurance company. Thank goodness.

John seems to be doing well too. He is tired but seems to be adjusting to the change well. At first we hated it and just wanted to go home, but now it's not so bad. The going home part hasn't changed though. However, we know that we have to stay here and get her gene therapy done in order to have her healthy and home, where she needs to be. Well I better go. Katlyn has a big problem when I'm not completely devoted to her. She can't stand it when I'm busy typing on the computer. It's really funny, the rest of the time she barely pays any attention to me anymore. John went to the Inn to fire up the barbecue because we're grilling chicken tonight. So Katlyn has to go to bed now and in the morning the dentist will be visiting her because I noticed there was a little discoloration on one of her teeth. I'm not sure why, but hopefully we'll find out tomorrow.

Saturday, April 28, 2007

Well it turns out that Katlyn's blood is okay. I am so happy. A huge weight has been lifted off my shoulders. Here's a few pictures as I promised. Yes, he remembered. Now all I have to do is figure out how to upload the video.
Yesterday Katlyn's line wasn't drawing back any blood so they decided to use this blood thinning agent in her lines. This whole idea made me really nervous, but they assured us that they used this stuff all the time. So they put 0.5 ml of this stuff in the main line and we waited an hour and drew it out no problem. After that we gave her her antibiotic intravenously. They came the second line. Because the line is a bit smaller, they only put 0.4 ml this time. So we let that sit in the line for about an hour and then the nurse came in. She could get that stuff out but still couldn't pull back any blood, so she decided to leave it in for a bit longer. There is a two hour maximum on this stuff being in her lines but the doctor said we'd only do an hour. Anyway, after two hours the nurse came back in and couldn't get that stuff out at all. She tried everything. When I spoke with Katlyn's doctor today I let him know that I wasn't exactly thrilled about the idea of this stuff sitting in her line. He said he wasn't either and actually thinks the stuff was infused. This makes me so nervous because this is a blood thinning product. There's no reason to thin Katlyn's blood. So today she got a little bit of blood taken to test and see if that stuff has had any effect on Katlyn. If it hasn't, then everything is okay. But if it has, we will have to infuse a clotting agent. Yeah!!! I know it is very important to have Katlyn's line open because we need it, but I think we should have gave up after the first hour with the second line. I think getting a little to sure about removing that clot was foolish. Anyway, what do you do? Hopefully there is no problems. We'll find out in a couple of hours anyway.

Katlyn is doing very well. Her doctor had a meeting yesterday about her gene therapy. He let us know that so far everything is in the clear for the gene therapy. He said there are still some tests that need to come back, but he really doesn't expect any surprises. And yes I almost forgot, Katlyn had a little bit of a rash when she first got here, but we figured it out and now it's all gone. We think it was the baby wipes we were using from here. The are actually perfumed. So I went out and got her some very sensitive ones and now the rash is all gone. She is developing so beautifully. She seems to be adjusting to this hospital very well. I think she has a lot of fun running around this room. She gets awfully disappointed if there is ever a reason why we have to take her off the floor. Like for instance, if someone walk right in here with no booties on. Sometimes that happens. Like this morning for example the kitchen lady brought Katlyn's meal tray right in the room and didn't even read the sign first. It was unfortunate, but we just cleaned the floor very quickly afterwards and Katlyn was back at it. She is so funny. Actually, as I've been writing this message on her blog she has come over and stole the mouse from me and is now playing with it on the floor--like it's a truck or something. ha ha!!

I have been feeling a bit better myself.I'm not really in pain that much today. I'm just uncomfortable. Hopefully that will all be fixed on Tuesday. I was talking with the surgical coordinator of urology and she told me she already go a pre-approved letter from our insurance company. This is great. Now I know the procedure will actually be done this time. The surgery will be done at 10:45. What they do is send something like sound waves up there and hopefully they break up the stone. If it all works as it should then I should be left with sand. That's easy enough for me. I just can't wait for all of this to be over and behind us. My job is way to important taking care of Katlyn, to be slowed down this much. I got stuff to do.

So Johnathan went on the shopping trip in Washington with the Children's Inn today. I think he will have a lot of fun. He was hoping that they would at least drive past the White House,but I don't think they do. I think they are going to a completely different end. Anyway, hopefully while he is at the mall he remembers to pick up a memory card reader and hopefully that will allow me to do what I need to do to get some pictures on here for everyone. Here's hoping. I don't think he will forget since I reminded him about 50 times, but I think I'm scared it won't work. I'm going to cross my fingers.

Hello Again

I know probably everyone that follows Katlyn's Blog is wondering where all the pictures are. Well, there's actually a story behind it. Right before we left Canada I dropped our digital camera. I think it's totalled. Anyway, it's not the end of the world because we have a camcorder too. Well I just figured out how to work it and take still photos. I have been taking pictures all day, and Johnathan took some really great footage of Katlyn walking yesterday. So anyway, today I went to upload all this stuff on the computer and it wouldn't work. John then informs me that our software for the camcorder is at home. That's a bummer. So I was thinking about what we're going to next and I think a card reader will do the trick. Who knows but we're going to try anyway. I just want everyone to see how great Katlyn looks. She looks amazing. She has got a lot taller and skinnier too. Don't worry though. It's not for a bad reason. She is losing some of her weight from running around this room all day long. That child never stops. From the time she gets up in the morning, until the time you lay her down to rest, she wants to play. I think it's so funny because she runs around with this little Dora lunchbox. ha ha!!!

Katlyn is doing really great. I talked to her doctor this morning about drawing so much blood from her. He said that the reason they have needed so much blood is because of her infection. They need a larger quantity of blood to see if anything grows. So we have agreed on blood draws every Monday, Wednesday and Friday. He told me that she will also be getting a lot of blood taken during the time of Chemo. There is no fear right now that Katlyn will become anemic because her platelet count hasn't changed at all. Although, during her chemo she may need a transfusion because it will affect her count. He told me that he will always explain himself fully about anything at all, and if he feels that Johnathan or I are leaning in the wrong direction he will strongly express his opinion. He said he only has Katlyn's best interests in mind. As long as we have that in common, we'll do just great. He is a very nice doctor. It's really amazing how smart he is, and how he can still come down to our level.

So let me tall you a little about this place. The weather is beautiful It is like our summer here. Everyone here finds it really cold and I am just loving it. The only thing that I fear is that it's going to get hotter and hotter and I'm not used to that. I will probably be spending a lot of time indoors during that time. You should see the equipment around here. Right now I am sitting in bed in Katlyn room with the flat screen television hanging in front of me and I'm typing in computer mode. It's so nice. Oh yeah and the IV pumps here are pretty neat too. They are touch screen and are equipped with light so you can tell by looking in Katlyn's window if the pump is running fine. Green means good and red means for some reason this are halted. The elevators talk, they have their own bank, several cafeterias and a barber shop to name a few things. They also have a shuttle service to ride you around the compound. And yeas of course. The NIH clinical centre building is the largest red brick building in the world.

I like where Katlyn room is situated. She has almost a whole wall of windows and we're on the ground floor and there are lot of trees just outside her window. She loves to look out there. It really is something. The even have a light outside Katlyn's door to let you know if something is wrong with the pressure in this room, again read and green. We're starting to get to know some of the nurses and some of them are very nice. I'm glad we're getting more comfortable because I think we're here for a long stay and it's nice to be able to tell them how you like things done....just to make things a little more comfortable. I know John is driving them crazy from breathing down their necks watching their every mood. ha ha!!!!

I promise I will post pictures as soon as I possibly can.

Thursday, April 26, 2007

I'm pretty sure thins are starting to settle down a bit for us now. I'm starting to feel quite a bit better. I'm in a little pain. I wouldn't describe it as pain compared to how I did feel though. I'm uncomfortable. I had been scheduled to have the lithography on Tuesday. I was stoked. Finally, one step closer to feeling better. Well, I was at the appointment and the receptionist called our insurance company. They said they hadn't finalized things yet, so the doctor's office4 wouldn't do the procedure. Apparently, the procedure costs about $5000. If I was an insurance company, I wouldn't want to pay for that either. So the procedure was cancelled and I came back to the hospital. John got on the phone with the insurance company and gave them some thick words. I swear in total I have spent hours on the phone with the insurance company. John gets on the phone with the insurance company for two minutes and they say everything will be okay. So I have to reschedule the appointment for next Tuesday because they will only do the procedure once a week because the machine in so expensive. Here's hoping we won't have any problem.

Katlyn is doing a lot better. She is acting a lot more like herself, now that she is getting some more sleep. Her new central line seems to be working ( let's cross our fingers that we have no problems). They have drawn quite a bit of blood from Katlyn since we have been here. Actually, an over abundance. I let her nurse know tonight that I didn't want any blood drawn in the morning until I talked to the doctor. There is a limit of 7cc per kilo for a six week period and they are almost at their limit now. We haven't even started the gene therapy yet. Johnathan and I just don't want something like this to compromise Katlyn's health. Her neutrophils did drop when she started her antibiotics (to 1300), but now she's back up to 1700. I'd say it probably had to do with the fact that she was fighting an infection. She looks so great though!!!

I went shopping for some new clothes for her today. When we first got here Katlyn's dirty clothes were taken out when her room got cleaned. We kept asking about them and people kept saying they were looking into. Well, when the cleaning lady came in we ask her about the clothes, and she let us know that we'd never get them back. They actually go to a huge cleaning facility. So, Katlyn had almost nothing to wear. Luckily the Children's Inn gave us a $100 gift card for Old Navy. So, I went today and got her a bunch of very sweet things. I'm going to wear her new dress on her tomorrow.

The mall I went to was very nice. I thought it was great. When the taxi picked me up, I expressed to him how much I liked it. He said it was a low-class mall. If I wanted to see a nice mall then I should go to Montgomery Mall. I told him if I was window shopping then maybe, but I had to buy some stuff and we definitely can't afford to shop expensive. Bethesda is such a rich place. I'm not even kidding. This place is rolling in diamonds. ha ha!!! It's beautiful, but very very expensive. I did get to see where the president goes to see the doctor today-- right across the street from the NIH.

We are so homesick right now. It really didn't help that all of this crazy stuff has happened to us within the first week of being here. It's not that bad here. Now that we are getting used to it, I do like it. The way I see it, is that we have to spend this time here in order to get our little girl home. As much as I love the IWK, I still don't want her there. I want to be home with her so badly. That day will come soon.....I know it will....and then we'll have the rest of our lives at home.

Monday, April 23, 2007

Hey Everyone. I just wanted to give a little more of an update. We are starting to see how things work at this hospital. This place is amazing. They have state of the art equipment and the it seems the best...well...everything, but they are missing probably the most important thing in my eyes. This place is so cold. It's not like the IWK with all the smiling nurses and caring people. Trust me when I say there's no little shindig by the nurses station late at night. It just doesn't happen. They are very professional here. They're here to work and get their job done, and it mostly seems like that's the way it's going to be.
I miss Debbie so bad, I know Katlyn does too. I met the recreational therapist at the hospital here and she was so distant, she wouldn't even look me in the eye. She came in to meet Katlyn and I could tell Katlyn was having a hard time warming up to her too. She had the stranger radars on all the way around. I thought it would be important for her to meet with Katlyn for the first few times with John or myself there. Well, after about 2 mins I decided that she was not going to come in everyday and spend that hour everyday doing god knows what. She told me that she couldn't really remember how long it's been since she's played with a child young like Katlyn. She was basically looking at me for guidance in the room. It wasn't long after I let Katlyn's doctor know that our idea of recreational therapy was different. We were looking for ideas ourselves...we already know what to do...just tips on teaching Katlyn in such an isolated atmosphere (what Debbie did). I think here the RT is more a break for the parents. I 'm sorry but if it's not in Katlyn's best interests, than there's no need. Sure, we will still have the RT in our life, but in a different way. I'll just basically let her know what kinds of toys I'm looking for and such.
OH MY!!!!!! I almost forgot!!!!!!
KATLYN STARTED TO WALK YESTERDAY!!!!! It's was the most amazing thing I have ever seen. Now she walks everywhere you don't want her to. LOL!!!! When you put her down on the floor she never stops. She's pulling cords out of everywhere. I LOVE IT!!!!!!!

Wednesday, April 18, 2007

I'm so sorry if it seems as though I have neglected Katlyn's blog. I haven't. I found out on Monday, the day we arrived, that I have a kidney stone. A rather large on the is causing quite a bit of pain right now. On Tuesday I'll be getting it lasered so that I can pass it and so hopefully the pain goes away. When that happens I will give everybody all the details.
Katlyn is doing great.
I don't even know where to start. How about I start by saying that we're okay. It's really nice here. The trip here went pretty good. When we were coming in to the Baltimore airport,the ride was pretty rocky. Katlyn was okay though. I think that it was because we are always playing rough with her. She never even cried. We were on a very small plane and the wind made the ride almost feel like we were hitting a brick wall. We just kind of made it a game for Katlyn and she didn't cry once. She was actually laughing. I know the flight was hard on my belly. I can imagine how hers felt. So after we arrived in Baltimore we had to drive about 45 mins the Bethesda. That part of the trip went pretty easy. Katlyn was so tired, she just slept most of the was anyway.
She we now live at the NIH. WOW!!!! There is now way to actually describe this place and do justice. The hospital is spectacular. As soon as we got here they got right on the ball. She had an x-ray, EKG, and an IV put in. She was very tired when it was finally time to let her head down. The isolation is very different here. We do have to gown, mask, glove and put booties on. Katlyn is allowed to play on the bare floor because we wear booties and her floor is cleaned twice a day. She loves it. She's actually on the floor right now as we speak. The funny thing is she never really plays with her toys that much. She still finds more interest in the things she shouldn't be playing with, like for example right now she's playing with the blood pressure machine. I think that Katlyn will be walking at any time now. Now that she's able to climb up stuff like a regular child in some sens4e, I think it's only a couple of weeks before we see Katlyn walking.
Katlyn is on a low neutrophenic diet. Her doctor explained it to me and they don't even have some called low-bacteria. Instead, they use the neutrophenic diet to feed all their SCIDs patient, cancer patients and children that are at risk for germ. It's nice because now she can eat a lot of the things that she wasn't allowed to before.
Katlyn has been getting so many tests done to see if she qualifies for the gene therapy. I'm pretty sure she's going to and her doctors so to. She has a little infection in her arm because of an IV line that was there. The infection is under control, but this will set us back a couple of weeks. She now has a new line in to give her antibiotics which she will get for about 14 days.
All of the tests have been perfect so far. Again, sorry if I seem rushed. I'm just in a lot of pain and just wanted to at least give somewhat of an update. Katlyn seems very happy though. We miss everyone so much!!!!

Friday, April 13, 2007

A quick Update

I'll write more later. I just wanted to let everyone know that it has been confirmed that we will be leaving for Maryland on Monday at 10:30 a.m. Johnathan will be able to board the plane with us as well, which is great news. I didn't want him to have to go home to catch the plane there, and possibly arrive at a completely different time than us. I should find out a lot of details today so I'll update tonight. I got to go and pack and do laundry now. We have so much to be done.

Wednesday, April 11, 2007

Oh wow. I'm so excited right now. In just a few days we'll be going to Maryland. I can't wait. I am a bit nervous, but the excitement over powers that. Finally, Katlyn will have the chance at life the she deserves so badly. It's really difficult to bring a little person into this world and for them to have to fight so hard to stay here. She doesn't even know really what she's fighting for, or even that she's fighting at all for that matter. I know Ive mentioned this over and over again, but I'm going to say it again. Katlyn is the strongest person I know. If only I could have one ounce of her courage, I would be a better person. The small thing sin life don't bother her. Well, to me they wouldn't be small, but for Katlyn they're just small little annoying occurrences....and when they're over that girl is back full force playing harder than before. She give me my strength. Every time I look into those beautiful eyes, I get the most amazing feeling inside of me. We do all of this for her. Every time I see her little her little face smiling back at me< class="blsp-spelling-error" id="SPELLING_ERROR_3">Katlyn hasn't. And for that I can't even express how grateful I am. I'd sooner be robber bare to nothing, even my own life than for her to lose hers.
That's not going to happen though. In exactly 15 days Katlyn will get her lifeline. The procedure will take place on that day, and I'm just so excited for her.
Today I went down to the IWK radiothon and told Katlyn's story. It was very nice of them to allow me to speak up for the IWK. If there is any way possible that I could get even one person to help this hospital, this amazing hospital, I'd do it. Especially if it's just by opening up people eyes to how amazing this place really is. When all this is done, and we're not in such financial hardship, we would too like to give back to this place. However, right now is defiantly not the right time. We've got a whole trip to fund. When things are over though, and our lives are somewhat back to normal I'm going to try my best to help.

Tuesday, April 10, 2007


Katlyn is doing very well. Her neutrophil count yesterday was 2000 and 1500 is in the normal range, so that is great. She is as crazy as ever, giving her mommy and daddy a hard time when it's time to sleep. She didn't want to nap today. After two hours of trying, we threw in our hats and let her stay up. She was a pretty tired little bugger too. Now dad is trying to get her to sleep. He has had her to sleep twice already and I think he's getting a little frustrated because our supper is waiting. What a little turkey. Like I said she's your typical 1-year-old. I love her so much.

So we will be taking off for Maryland in less than a week and we're pretty excited, but my nerves are getting a little rattled now. Right now we are pretty comfortable at the IWK. This has been our home for the past eight months and I must say we're in our comfort zone. It's going to be a little crazy trying to adjust to a new hospital, new people, and basically a new way of living. I imagine that a lot of things will be different. We'll adjust nicely though.

It is really going to happen this time. New Brunswick has charted a plane to take us there and so hopefully both Johnathan and I will be able to go will Katlyn. Maryland has already purchased a flight for John and it will leave out of Presque-Isle ME, which is a little unfortunate since he's here in Halifax. I guess if that is what we have to do then he'll just have to go home. Life Flight called today to find out our weights and everything, and they're thinking we'll both be able to go. Here's hoping that we'll at least find out asap, so John has enough time to get home if need be.

We had a phone interview will Buffy, she the head nurse in Maryland, today and she seems great. We are so excited. The days are really going by pretty quickly. Before we know it we'll be on a plane arriving in the U.S. Finally, Katlyn is going to have a new chance at life. It's so wonderful!!!!

Sunday, April 8, 2007

Happy Easter

Today was a barrel of fun. Katlyn was a riot. I just love her so much. The date is really creeping up on very quickly to go. We just can't wait, we are so excited. Oh yeah, Katlyn's neutrophils were 3500 on Thursday and she will get her CBC done again tomorrow. I'm positive everything is going to be fine. And her gum looks a lot better. I was putting some Orajel in her mouth last night and and it felt tighter and sharper, so I took a look at it with fight from Katlyn and noticed the gum looks pretty normal. There is no more blueness and it's not all swollen. It actually looks just like a normal tooth coming in. Yeah!!!!
Easter was great. Katlyn makes everyday in my life so amazing. She is the greatest. She couldn't have chocolate, so we gave her a Popsicle and she just loved it. She couldn't have a stuffed bunny, but she got two and a stuffed lamb for later on, and we just found her some bath toys and a bubble maker. She loved them. As soon as she saw the duck she was saying "duck" and "quack quack." I have to say it was so cute. Happy Easter everyone!!!!

Friday, April 6, 2007

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 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.

Thursday, April 5, 2007

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.

Tuesday, April 3, 2007

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.

Monday, April 2, 2007

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.

Sunday, April 1, 2007

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.