Friday, March 30, 2007


Just a quick not to let everyone know that Katlyn will be participating in Gene Therapy in Maryland. We are so excited. I have no idea when we will be leaving. All we were told is that we have the weekend for sure so to get packing.

YEAH!!!! Finally I can see a light through the tunnel...and a lot to do before then. I have to go because I have so much to do and try to fit sleep somewhere in there. I will write some more as soon as I get a chance explaining what will take place.

Thursday, March 29, 2007

No Worry

Just a quick note to let everyone know Katlyn's neutrophils were 2200 today. That's very good. I was pretty worried, but now I can go back to real life until Monday. We are getting some great visitors tomorrow. John's uncle Emery from Vancouver, his mother and father and both of Katlyn's Great Garndmothers. I am so excited....oH YEAH!!! And I musn't forget John, the love of my life. And to top it all off my mother will be coming to visit on Tuesday. What a great weekend and early next week we'll have. Katlyn's tooth is about the same, still giving her a hard time. Sorry I can't write long tonight, I have to eat supper and take a shower and it's 12am.

Wednesday, March 28, 2007

Sorry I didn't get a chance to write yesterday. Things were pretty hectic. Katlyn has been fussy for the past few days over her teeth. Last night when I was ready to put her to bed she was fussing about a tooth, so I took a look. The gum was really inflamed and a blueish colour, so I got the resident to take a look in her mouth and she wasn't really sure if it was infected or not. I have never seen one of Katlyn's teeth do this to her gums before. So the resident got on the phone with Dr. Issekutz to discuss Katlyn's tooth. Dr. Issekutz felt it was practical to start Katlyn on antibiotics, just to be on the safe side. I'm with him there. So she didn't get to go to bed until late because we had to wait for the antibiotics.

Tomorrow Katlyn has to get blood work done and I must say I'm a little worried about her neutrophils. There hasn't been any actual signs in my eyes as to why I should be worried. It's just because she started the antibiotics that I'm a little nervous. I just hope it doesn't compromise anything. She just hasn't been on antibiotics for awhile and I just hate changing anything because I'm so scared a change will affect her neutrophils. It's probably because we have been so disappointed in the past that I'm feeling this way.

I just hope that this time we actually get moving and get some treatment for Katlyn. I just want her to be okay. I really have a good feeling that this time we will be moving along, but I can't help but think what if? I got to stop doing that. If you don't have hope, then what do you have anyway? Nothing!!!!

Other than the tooth incident the girl is doing real good. I swear it's almost like having a little parrot in the room with me all the time. She is getting more and more vocal all the time. Copying everything I say. I LOVE IT.

I just wanted to express how I feel about a certain subject. A lot of people probably think that being in the hospital day in and day out sucks. Well you know being here is not where I want us to be most of all, but I am so grateful we are. I sometimes think about what would have happened if we didn't make it here when we did. I can remember that day like it was yesterday. Katlyn wasn't her usual self that day. I though it could be her teeth come in because she had one already and another on its way. I gave her some Tylenol because she had a fever. The fever went down but she was borderline fever all day long. She wasn't the usual playful Katlyn. She just basically layed there.

John came home from work and I let him know what was going on. The fever came back in about 4 hours from when I gave her the Tylenol, so off we went to the hospital for the umpteenth million time. When we got there we entered a whole new world. I can remember Katlyn panting for air, her check sucking in and her nostrils flaring in and out. It was the scariest thing I have ever encountered in my whole life. They took us seriously and took care of her.

Thank GOD!!!!

What would have happened if we got there earlier, or later. I hate to think about it, but when I do it makes me realize just how fortunate we are. We have Katlyn. She could have been taken away from us on several occasions but for some reason she wasn't. And for that reason I believe Katlyn is still with us and doing well. And for that reason Katlyn will continue to do well and get better and make it through this. And for that reason we'll be able to look back on this and say "we're so lucky to have Katlyn." And for that reason we'll probably never take the huge things in life and minimize them like they are something that isn't important at all, like a kiss, a breath of fresh air, Katlyn smile or when she asks "what's that?" All of those thing are miracles and so much more.

I got this in an e-mail and thought I'd share it with the world because it relates to what I'm talking about.

To realize the value of a sister/brother: Ask someone who doesn't have one.
To realize the value of ten years: Ask a newly divorced couple.
To realize the value of four years: Ask a graduate.
To realize the value of one year: Ask a student who has failed a final exam.
To realize the value of nine months: Ask a mother who gave birth to a stillborn.
To realize the value of one month: Ask a mother who has given birth to a premature baby.
To realize the value of one week: Ask an editor of a weekly newspaper.
To realize the value of one minute: Ask a person who has missed the train, bus or plane.
To realize the value of one-second: Ask a person who has survived an accident.

Time waits for no one. Treasure every moment you have. You will treasure it even more when you can share it with someone special. To realize the value of a friend or family member: LOSE ONE.

The origin of this is unknown, but I just that it so fit in with what I'm talking about.

Most people don't realize what the have until it's gone. Don't be one of those people. Just take everything in and be so grateful. You can never tell someone that you love them too many times. Life is so precious and anyone or anything can be taken away from you in an instant.

Thank You

Monday, March 26, 2007

Uplifting News

Today was a very exciting day for us. Katlyn's neutrophils were 3300!!!!! She has never been that high before. I just couldn't believe it. When I saw the 3.3 on the screen I thought one of two things was happening. Either she was sick for the numbers to be so high, or there was just some kind of mistake. I just couldn't wait to talk to her doctor to make sure everything was okay, and when I saw the huge smile on his face I knew a dream had come true.

Dr. Issekutz told me that he was still waiting to here back from Maryland on a date. He said that distance wasn't going to be a factor in deciding where we go. We will be choosing the place that will take Katlyn the soonest. I asked him if he was pretty optimistic that Katlyn would be going with the gene therapy and he is. GOOD, GOOD!!!!

I am just so excited. I really have this great feeling inside me that we will be going really soon. I've already started to pack some stuff up to be sent home with John. The way I see it is if we're not using it then there's no sense in it being here anyway. We have so much stuff here, it's so crazy. You wouldn't believe the amount of things we've accumulated in the 7 months that we've been here. Besides if we get the same kind of notice that we got the last time we were supposed to go, we'll have day not weeks to get ready. I can remember how quickly Maryland wanted Katlyn there. I just don't want to be all stressed out trying to do this and do that. We have so much to do like for example get our taxes done. I'm probably just going to send our stuff to an accountant. I'm so scared to do something wrong. It's different than last year because we have all these hospital expenses to claim.

Katlyn is doing really great. She took a couple of steps for Debbie, a Godsend from Child Life, today and I missed it. But Debbie agreed with me that our girl will be walking really soon. She said that it seems as though Katlyn is taking her time with it, a perfectionist as usual.. I think she take after her mother for that one. She said that a lot of children rush themselves into it and therefore are always falling down, almost like their feet are going to fast for their body. She said Katlyn taking her time is a good thing and it's right around the corner. It will be so exciting.

So all is good in Katlyn Land today. She will get her PEG ADA injection tomorrow and next week she'll get an IV put in for some more IVIG. Dr. Issekutz said he was also going to order some blood work to see the effects of the PEG ADA on Katlyn's system are going good. I should say so!!!!

Friday, March 23, 2007

A Day in Colour

There isn't really any new news today for Katlyn except that she was coloring pictures with crayons. I thought it might be pretty tricky to do something like that with her for sterile reasons. But all I did was get a brand new package of paper and crayons, never opened, and wiped them off. You wouldn't believe the amount of fun she had. She had me giggling hysterically. That girl is just so funny. Luckily the crayons were non-toxic, because she just kept sticking them in her mouth at first. LOL!!!! Eventually she got the gist of it and we had a great time. I would draw her picture of stick men and she was kissing them. CUTE!!!!

I know that isolation defiantly limits the amount of things you can do with a child at that age, but my goal has always been to make the best of it. So what if we can't go outside? We just make the inside of her room super special. I try my best not to think about the things we are missing out on. It doesn't help when I think like that. All I can think about is how lucky we are. We have Katlyn. We are so lucky that that girl is so healthy and so happy. She's 13 months old and weighs in at 26lbs 8oz. It is so incredible.

When we first got here the doctors didn't think that Katlyn had SCID because of how healthy she was. When they learned her diagnosis they were fascinated with how great of shape she was in. We kept getting told over and over again how we were great parents. I guess when these kids usually come in they are extremely sick, weighing about half Katlyn's weight because they have a failure to thrive.

We are so LUCKY!!!!!

And talk about happy. It just doesn't matter to Katlyn. You would think with the amount of poking and prodding that she has encountered so far in her little life, she would be miserable. She's not. I have really never ever seen a child happier than my daughter. She just has such a sparkling personality. She's my little jokester.

Someday soon we will be able to do all of things that we are missing out on like give her a kiss or take her for a walk in the fresh air. But for right now I'm just focusing on what is in my control. I can't control the fact that Katlyn is confined to her room. Jeez if I took her out I think her doctor would have a conniption. He's almost as careful as I am. All I can do right now is try to spend every moment with Katlyn in the best way that I can, having fun. If she doesn't see me upset than she has no reason to think that anything is wrong, and I am going to keep it that way.

Thursday, March 22, 2007

He's Working Miracles Up There

I must say that today wasn't your average run of the mill day. Katlyn's neutrophils were 2000. She has never been that high before. We are just so excited. Dr. Issekutz said he was going to contact the doctor in Maryland tonight and try to get some information, maybe a date. I just can't wait. I want to get Katlyn better right now. She has been here for so long. I know that it will be a huge adjustment going somewhere else, but we're more than ready. I am going to miss this place so much. The nurses, doctors and all the staff are awesome.

I was talking about how I needed some kind of gate or something to keep Katlyn enclosed because she will be walking really soon, and Child Life will be purchasing something for that reason. The way they see it is that they will need it again in the future and it is something that they should have already. Thank goodness.

Wow!!!! I am just so excited. This has been such a great day!!!

The Cox family left today and it makes me a little sad. We had a family that was going through almost the same thing and they actually understood what you were talking about. I'm going to miss them so much, but they are where they need to be. They need to get their son better. Just like we need to get Katlyn better too. I have a feeling that something will be happening soon. And for anyone who knows me well enough, my feeling tend to right lately it seems.

I must go to bed now. I woke up so early this morning to see the Cox family off to Montreal. I am so tired!!!!

Wednesday, March 21, 2007

Just a Little Note

All is well for Katlyn and ourselves today. I went to BINGO with my friend last night and John went go-karting with his today. It really does help to reset yourself every once in awhile. Katlyn gets blood work done tomorrow and I'm pretty sure all will be great. So far if you look at the numbers it is really liking like the gene therapy is what we'll be venturing to. Katlyn did a really good job eating today. I purchased these little graduate entree dishes (just like a microwave dinner that we would eat but everything was smaller) and she ate a great deal of it. Some babies apparently don't like the mushy chunky food so much as going straight to the solid food. I think our Katlyn is one of those babies.

Of course Katlyn is cuter than other again today. Just when you think she couldn't get any cuter, she surprises you and does just that. I'm making this short tonight because we have an early morning. The Cox family will be leaving to go to Montreal so their son Cole can get a bone marrow transplant and we would like to see them off. We are really going to miss them.

I'll make sure I post what her blood work is tomorrow just as soon as I get a chance. No worries though, she's going to do great.

Tuesday, March 20, 2007

Cleaning Up the Germs

There isn't really any new news today so I thought I'd talk about our day-to-day life and cleaning her room and things. I used think it wasn't very much fun doing housework, I thought it was too much...the more times you did it, the more times you had to do it again. It wasn't as though our place was a mess, or that I hated cleaning for that matter. It was that it just wasn't my favourite thing to do and it always seemed as though there was so much laundry, dishes, dusting and scrubbing to be done. Now I live in a whole new world. A world where forgetting to clean something could be so dangerous for Katlyn that it could make her seriously ill, or worse.

First off, going into Katlyn's room we have to gown, mask and glove. Anything going into her room has to be completely cleaned with a peroxide-based cleaner. Masks have to be changed every 20 minutes and gloves have to be changed as often as they are dirty. Dirty means anything that is on the floor, may have come in contact with the floor, come into contact with yourself or possibly something dirty. If you're unsure you better clean it anyway. The whole day basically consists of cleaning and more cleaning. Trust me when I say that a one-year-old child just loves to throw her toys on the floor to here them crash....More cleaning.

Bum changes take a lot of practice, changing your gloves an endless amount of times. She has to be cleaned in sterile water, both changes and cleaning. When she plays on the floor she cannot touch the actual floor. She has to play on the mats that you put down for her (cleaned completely each time). And we also have to clean the walls and anything else that she could possibly come into contact with.


Her room is her bubble. Only the necessary people are allowed in the room to see our daughter. Anyone displaying or feeling any symptoms of a cold or flu, have to steer clear of Katlyn's corner room. Even a little tickle in your throat can mean staying away from the DeMerchant family. I remember once I had a sore throat and I had to stay away from Katlyn for a week. I didn't go home, of course, but I defiantly couldn't see her.

Al of her food has to be packaged, frozen or boiled. It's insane the amount of work that goes into making Katlyn a piece of toast. We're not allowed to have a toaster in her room because it could cause a fire. Therefore, we have to keep her toast at the nurses station. When we want a piece, we grab it with a glove on of course and put it in a Ziploc bag then head down the hall down to the pantry (and of course the obvious toasting).

We do all of this every single day, day in and day out, trying our best to keep the germs away from our girl. We do it because we love Katlyn so much. There is nothing that I wouldn't do for her. I'd walk to hell and back for her or change places with her in a heartbeat. She's my daughter.

Monday, March 19, 2007

We need a miracle


KATLYN'S NEUTROPHILS WERE 1700 TODAY!!!!! I am so excited. I really had a good feeling about today's blood work. I am feeling so optimistic that she will be going to Maryland or Italy for Gene Therapy. I just don't want her to go to Montreal for a bone marrow transplant because the outcome isn't as good as it should be for her. I just don't want to lose her. Mommy loves you so much Katlyn and I hope you get better soon. I'm always praying for you. We need a miracle

It really is quite remarkable the amount of support that we're receiving. Just from Katlyn's blog alone. I haven't even had it going that Long and have already has a lot of views. Thanks so much to everybody. Today John's mother recieved a check in the mail from the Aleisha Lucci Trust Fund. Aleisha was my best friend in the whole world. I miss her every single day of life. Her was life was taken tragically in a car accident one horrible night. In the town of Dorchester, N.B., there has been tremendous support for Aliesha's family with the start up of a trust in her name to help families and sick children in the hospital. I am so thankful that they thought of us. I know Aleisha would have probably done anything in her power to help us. I know she would have. God I miss her. It really did come as quite a big surprise to me.

We do need a lot of help. We have already been here for 7 months and between gas and food especially, the expenses are extremely high. Not having a proper kitchen to cook and stuff like at home has been hard. Basically living out of a microwave from day-to-day. It really is way too expensive to eat out all of the time. Plus, the rising cost of gas makes it really hard for John to go home. His daughter Haley is at home so he really needs to see her too. As it is, he already doesn't see her enough. Hopefully the fundraising will continue to be as great as it has already been. Thank you Centreville (and surrounding areas) and Moncton. If we go to Italy or Maryland I know it will be very expensive. Really, money should be the last thing we think about in the whole scheme of things. We just need to get Katlyn better. No matter what. It may cost us a lot of money to do it, but no amount of money in the world is worth Katlyn. I wouldn't trade her for anything. I have no idea if I'm making any sense at all. The gist of it is, we appreciate all the help we have got so far. It has made the past 7 months a little easier financially, and we still have a long road ahead of us. We really need all the help we can get, and thanks so much to everyone who has been there for us.

Oh god I can't wait to go home. Just please send us home with Katlyn. Healthy and Happy!!!

Sunday, March 18, 2007

7 Months

Well we only have three weeks to go before we know more about where we have to take Katlyn. She will have some blood work done tomorrow and I can almost say that I know her neutrophils will be great. I am so happy that finally it seems as though she's moving in the right direction now. Finally, hopefully, we'll know something. I'm not really sure how they will determine where she goes based on her numbers. I don't know if they're going to take an average or if they will just look and see if she over 1500 for the majority of the time (1500 means Maryland), or if she's below 1500 that means Italy. I have no idea. I have no choice but to wait three weeks to find out. For most three weeks would seem like forever, but for us it really isn't that long at all. We have been here for 7 months now. Wow!!! 7 months.

Our friends will be leaving with their son on Tuesday. I am going to miss them so much. I'm actually going to write a little something for them today.

To Jenn, Mark and Cole.
I wish you and your family all the best of luck. It's so strange. You never wish that any other child would be sick or have almost the same thing as your child, but we have been so lucky to have you. It has been so nice to have someone to talk to who is going through the same thing. Talking to others isn't the same because most people don't understand. I've always felt like you guys have always got it. Even before Cole was diagnosed. You lost your daughter and taught me that whatever happens is out of our hands. Your living proof that a person can move on and still breathe after something as devastating as that happens. I'm so sorry that you lost your daughter. I'm even getting teared up as I write this. I have no idea what you go through every day of life, I can only imagine. When your child is sick, you have no choice but try and prepare yourself for the worse. And every time I think about it, it makes me cry. I don't know what I would do if we lost Katlyn. I would be so lost.

And you guys are two of the strongest people I have ever met. You deal with that whole in your heart every day and you still manage to force a smile on your faces. And now your son Cole is sick. I know how hard it is to have a child in the hospital fighting for their life and not being able to do anything about it. You wish more than anything that you could trade places with them, you would in a heartbeat. But it's out of your hands. You have to do your job as a parent and give them the best chance at a healthy life you possibly can. It's so hard though. I think that you guys are great parents.

I am going to miss you everyday until we see each other again. I'm going to miss going shopping with you Jenn and going on huge adventures. It's so funny that every time the two of us got together something would happen, something to make us laugh our butts off. I'm going to miss the four of us going on our late night adventures and having a nice laugh....hahaha!!!! The drive to Citadel. Oh my!!!! I'm going to miss just talking the most. Being able to get away, even only for a few minutes, and having someone to confide in.

Your son is going to do great. He is going to get through his bone marrow transplant with flying colours and soon we'll all be able to look back on this. We'll always know how lucky we are to have our children. We'll never take things like an outdoor walk for granted or even being able touch our kids. Oh to give them a kiss!!! We defiantly have a lot to look forward to.

I am so glad I have met you guys. I'm so glad that we can have each other to lean on and grow with.

I'm going to miss you guys so much!!!!!

Good Luck, and God bless. We'll be praying everyday!!

Daisy, John and Katlyn

Saturday, March 17, 2007

Easter Shopping

Today was a great day. My friend Jenn and I went shopping and I picked up a few things for Katlyn. Not only was I faced with the problem that my girl can't have a lot of the regular Easter surprises, like chocolate mainly, I was faced with an even bigger challenge. First off, I was buying for a 1-year-old and noticed that most Easter things are targeted towards older children, except of course the stuffed animals. Katlyn is not allowed to have anything stuffed. They just collect dust. It's kind of sad really. The first time Katlyn went in the hospital, at two months old, she got a teddy from her grammy and grampy and has held on to all the time. That is until she was diagnosed. So stuffed anything is totally out of the question. Instead, I found her a Winnie the Pooh bubble maker. I got the idea when the hospital's therapeutic clown was at Katlyn's window blowing bubbles. She loved it. Pointing and say "what's that." I can't really be blowing bubbles in her room because it's germy, but a bubble machine can do the work. Besides that I got her a Easter bucket along with some bath toys. It's amazing how the simplest toys, like a bucket or box, can brings hours and hours of fun for her.

I saw these really cute shoes when I was shopping and was thinking that my girl would look so cute in them. All I kept thinking is that I wish my girl was with me. I wish so much. That time will come I know.

So, today is St. Patrick's Day and we have absolutely no plans at all. It's really hard to just ignore the fact that our little girl is in the hospital going through so much. We have a hard enough time going out to eat for that matter. Who knows maybe we can convince ourselves to do just that. I can remember when this day was nothing but a big party, drinking green beer. Ha Ha!!! Those days are totally gone. Not just that we have a hard time doing things, financially it's hard too. Gas and food are so expensive, especially when you're living in a hospital.

Oh well, we can worry about stuff like that, normal things I mean not so much drinking beer, when our lives are a little back to normal. We do try our best to get out as much as we can just so that we don't go crazy. It really is hard being stuck in the in the confines of four walls, a floor and ceiling (mind you germ-free).

Friday, March 16, 2007

A little break

So I know I haven't written in Katlyn's blog for a couple of days, but I was taking a little break. Sometimes a girl just needs to sit around and do nothing. And I must say it has been pretty relaxing and fun trying to catch up on Heroes while the show is on a hold for a few weeks. Friends of ours burnt the episodes up till now, so we're trying to get on track, and I must say the show is awesome. Now I have to try to catch everyone up on what's going on.

Wednesday was a pretty stressful day and I expected it would be. IVIG days are always so stressful. The day started off really great. Katlyn got to play really hard for the whole morning and right before her nap the nurses from NICU came up to put her IV in. It was a textbook IV. One poke, no wiggling around and her IV was in place. I swear I must jinx the situation or something. I was saying that we never really have a problem with her IVIG. I went to get my prescription filled at the drug store and tanning and when I came back my girl was quite upset. She looked as though something was really wrong. At first glance I thought it might have been because she wanted me to come in the room. When she has IVIG she doesn't really have the freedom that she usually does. She's not able to just play. Instead she has to be watched 24/7 to make sure she doesn't pull her IV out. Well, when I came in the room John notified me that they had a hell of a time since I left. The vein that Katlyn had the IV in blew, so the NICU nurses had to come back up and put another one in. The did get it in, but it was secured well enough. John said that it was just flopping around. So she lost that one too and they had to come back up again. So the third one had to go in. Poor girl. Meanwhile, the IVIG was put on hold and it's only good for so long. Her nurse did the calculation and notified us that the IVIG would be expired before the infusion was done. Great. So he had to order another bottle, and luckily it was from the same lot. She finished her infusion around 10:30. I know we were pretty glad, but I bet Katlyn was even more (I could sense the relief).

Yesterday was a pretty good day also. Katlyn's neutrophils were 1300. I'm sure that we'll be going to do the gene therapy. I would almost go as far as saying I'm positive. The question really is just where are we going. I don't really have a preference. Maryland is closer than Italy, yes. I don't care so much. I just know that I want the gene therapy done and not a bone marrow transplant. So far her numbers have been perfect. She gets the PEG ADA again today. Our pooh girl is going through so much.

It's really funny how here at the IWK we see some of the most ill children. And the funny thing is that they are the happiest kids I have even seen. I have met a lot of families with children that are going through so much, and when you see them they have the biggest glowing smiles you'd ever see. They get picked at and poked so much that you'd think that they'd be miserable. But they're not. I'm telling you, if I could have just one ounce of courage that Katlyn has I would be an incredibly strong person. That little girl smiles so much. She really is such a blessing. it does make it a little easier to see that she isn't miserable. Despite everything that she goes through, she is really the happiest, most easy-going baby I have ever seen. What a strong girl.

Tuesday, March 13, 2007

Oh wow!!!! The day is almost ever, and I must say it was a highly stressful day. I had an appointment for 9 o'clock this morning and I had asked the nurse from last night if she could get someone to wake me up in the morning because I don't have an alarm clock here (mental note: get an alarm clock from home!!!). Well, it didn't happen. At 10 o'clock John woke me up very suddenly with news that it was 10 o'clock. I was very upset. The new nurse had no idea. Anyway, I rushed over to the VG and waited three hours to finally see someone. I didn't care if it took all week, I was going to see someone. The appointment was initially booked for May. Well, we have no idea where we'll be in May or what we'll be doing, so I was kind of both scared and relieved that it was going to be today. I have been having some trouble with my thyroid since late November and today I found out why. I have been diagnosed with Graves disease. YEAH!!!! I'm okay. It just basically means that my thyroid is unstable right now and by taking medicine it should slow down the amount of hormone being expressed from my thyroid. I am glad that we got this taken care of now and not have a problem with my health when we get to Italy or Maryland. Mama's gotta take care of herself too!

Other than that I'd say it was an okay day. That really did mess our day up, and on top of that we're still suffering from the time change. I find it's so difficult to stay with the same schedule when we spring ahead. It always seems to make me just so tired.

Tomorrow will be a very long day for us. Katlyn will need to get an IV put in so that she can get some IVIG(a solution of globulins that contain antibodies that are usually found in human blood, except in immune compromised Katlyn. The IVIG will help to elevate Katlyn's platelet count and protect her a little bit.) I find IVIG days are just so chaotic, but she will get the IV taken out just as soon as the solution is done (it usually takes 6-10 hours). I guess the most challenging thing really is getting the IV in place. We also have to monitor her very closely. Because it's a blood product she could have a reaction to it. The only thing that has happened so far was that her blood pressure was low.

I found a Dora blanket for Katlyn today at Wal-Mart today. She is going to love it. I can just see her now giving her kisses all the time. What a cutey!!!!

Our friends that we met since we've been here found a bone-marrow for their son Cole. They just need to do some DNA testing to make sure that his deficiency is what it seems and not something else. Cole has been diagnosed with a different type of SCID than Katlyn, and a bone marrow transplant is the best option for him. I am so excited for them. I can see us all being real good friends for a long time to come. I am really going to miss them when they leave.

Well I gotta say today was another amazing day. Before I give a summary of our day I'd like to mention that Kaylyn's neutrophils are 1700!!!!!!! Yeah!!!! 1500 is normal so I am just so excited. I could tell today was going to be good even before she had the blood drawn. If she stays above 1000, then gene therapy will be the road we are going to take. Then the question of where we'll g comes into play. I have no preference. I just want our little girl to go home and get back to living a normal life.

John came back today so he spent most his day driving. Katlyn and I had a blast. She played on her mat most of the day. I can't believe how fast she's learning. She'll stand all by herself. Before we knw it that girl will be running around and that will be so exciting but also a problem. I know how hard it is right now to contain her. She needs to live as normal as possible, but not being able to touch the flor is a challenge. Right now we figured out how to accomodate her, but when she starts walking it's going to be a whole new world. I don't know what we'll do to ensure she is safe as well able to develop on track.

I also think it's pretty funny how she'll drive her along saying "vroom." She'll also sit very quietly reading a book, flipping the pages, and pointing at stuff. It's so great. Our girl is so smart!!!!

Katlyn was able to try pudding for the first time today, and that was a blast. She seemed to enjoy that nice creamy chocolatey surprise. Saying mmmmm....all the way. We had to get Katlyn soy pudding because she is on a lactose-free diet. I'm not really convinced that Katlyn in lactose intolerant. However, ever since we switched her formula a few months it has so much with stoos and bum rashes. Basically it seemed as though it was sugary acid that she was drinking. My theory beind it is why wake a sleeping giant??? Meaning if there's no problem, I don't want to take any risks right now. She's happy and therefore I'm happy too. After she was done eating her pudding I gave it to her and let her play. It was so messy, but so much fun. I had created a lot of work for myself cleaning up that mess, but it was totally worth it. Anything is worth seeing that toothy smile all the time.

The weather here was very nice today. It would have been a perfect day to take Katlyn for a walk. I really can't wait for those days to come. It will be so great for her to get a nice breath of fresh air after being stuck in this place for so long.

Monday, March 12, 2007

I cant send a lt of time working on the blog tonight. I am so tired. Katlyn just went to sleep. I think her teeth are bother her. She was fussing while holding her mouth so I gave a bit of oragel. When I was rubbing it on her gum she was chewing down on my finger and it hurt in a couple of places in her mouth. The teeth are just below the gumline and ready to pop out at anytime.

Hopefuly tomorrow I will have some good news. Katlyn get's her bloodwork of her cbc done. I really hpe her neutrophils are good. I think that they will be. Like I've mentioned before, it seems as though her stools are somehow linked to her neutrophils. When her stools are loose and more frequent, she has low neutrophils. When her stools are mushier or formed and less frequent, the neutrophils are normal. yesterday she had two and today she had one. From what I know so far from what has happened in the past, her neutrophils should be great. We'll see.

She had a very good day today. She was roughhousing me. She wanted me to tip her upside down, so she would burrow herself semi-upside down laughing and hoping I would do it. And of course I did. John went home on thursday and he'll be back again tomorrow. I can't wait. I miss him so much and it will be so nice to have him around to help me out. It really is stressful when your girl is teething. I also think that because she spends so much time with me, she has a really hard time even if I leave for a few minutes. Well no, I shouldn't say that. Katlyn is very good at amusing herself, but when she's cranky, tired or not feeling good she wants me to stay put. I don't blame her. I'm the same way. I want my mommy too. I really do miss my mom. I LOVE YOU!!!

Saturday, March 10, 2007

Today was a really wonderful day. It is so awesome to have such an amazing child. Everyday I learn more and more about this amazing little girl. It's great to have a child that looks so healthy on the outside, despite her ADA deficiency. She really looks healthier than most healthy kids. We really are blessed to have such a little trooper for a daughter. Each and everyday is just like getting the best present all over again. I am such a happy mother, who couldn't ask for a better daughter.

Today she ate half of a piece of whole wheat toast. If I would have known how much she would like it, I would have started it awhile ago. I thought she would like English muffins better, boy was I wrong. She just loved it, "mmmm" all the way. I've noticed that her appetite is changing a bit. Today she only drank 75ml of formula before passing out for the night. I'm not worried though. Children at this age seem to get less and less interested with eating, and Katlyn has plenty of reserve. When she tells me no I listen and don't try to push her. I'm kind of hoping by doing this she'll always think of food in a positive way. Also, maybe she'll start to understand the no word and listen to me. ha ha!!!! Yeah right!!! I just wish she'd leave her hearing aids alone. I'm so worried that she's missing too much when she has them out. I don't want her learning and speech to be delayed because she was too stubborn to keep her hearing aids in. It could possibly because Katlyn is going through so much right now that she can't control, and maybe the hearing aids are something that she can control. If she doesn't want them in, she can just take them out. Whereas if she doesn't want to be poked, it still has to be done anyway. I don't know. I just wish we could get to the bottom of this. Apparently, the audiologist will be referring Katlyn to a behavioural specialist. Sometimes they can help children accept things in their life that they need to. I haven't heard anything back yet, but I hope something happens soon.

Right now one of her hearing aids is being sent back because she broke it and the other one doesn't fit her ear properly, so it's constantly squealing. We fitted a new mold for that ear and it should take a week or two before she has that one back. It really is a constant daily struggle. I don't know how other parents don't lose their mind. She really thinks its funny when she takes it out. I'll tell her to give it to me and then when she does I say thank you. She looks so proud when I say that. It's pretty cute, even though she's being a little bugger.

I had a little bit of a scare this evening. I was giving Katlyn a bath. I had her all washed up and I was just getting things ready for when she got out of the tub. I hit the call button for the nurse to bring me some linen and at the very instant Katlyn pooped in the the tub. I surprisingly remained relatively calm. I just took her out of the tub and wrapped her up. I asked the nurse to heat up some more sterile water while I was cleaning up the mess. The hardest part was trying to keep her on the mat while I cleaned up. She wanted to crawl around. So I cleaned everything up and gave her a new bath all over again. Lucky for Katlyn I guess (she loves to take a bath). Well, lucky for me too. I would really have my hands full if she didn't.

Other than that the day went pretty normal. I managed to squeeze in a nap at the same time as Katlyn. On the weekends this place isn't as hectic, therefore relaxing a bit is a little easier. During the week I have to do everything just to try and get a shower in my day. I'm really hoping tomorrow is relaxed too.

Friday, March 9, 2007

Good News

Well we are finally moving in the right direction. I was talking to Katlyn's doctor today to try and get a feel for what might happen. The increased her dose of PEG ADA to not only twce a week, but increased the actual dose as well. She will be gettng almost twice as much as she used to. He said he had been talking with Dr. Aiuti and Dr. Candotti about what has been going on with Katlyn. They both agreed that things are going really great with Katlyn. They recommended we increase thhe dose of PEG ADA and wait another 4 weeks to see what her counts will be.

If she does well we will do some tests on her bone marrw just t mae sure there isn't a bigger problem we're overlooking. If everything is fine they'll go by her counts. If she's 100 and up but not 1500, shhe go to Italy, but if she's over 1500 se'll go to Maryland.

I am so excited. This looks great. I know we have to wait 4 weeks to see what is going to happen, but we've waited this long...what's a little longer. Besides, we still have a lot of waiting ahead of us. We just can't rush this. The right decision will be made by taking the time that an important decision like this needs.

Also, Dr. Issekutz (Katlyn's Doctor) mentioned that her immne system is responding to the PEG ADA. Her B cells are already up which means that with each day Katyn will just be even stronger. This news makes me so happy. I'm nt sure why her neutrophils have had a bad run. It may have been the loose stools or possibly the antibiotics she was on. Let's all cross our fingers this is it.
I am so tired today. I really think the no sleep is reallycatching up with me. Oh wel, I'll prbably get my second wind again (I hope).

Terrible 1's

My girl is going to drive me crazy. I can already tell I'm going to have my hands full. What a girl. Tonight I put her to sleep and went to the grocery store to get her some food. Well, I came back and apparently she woke up within minutes of me leaving. What a little bugger. I came back a while later to see that she must have thought it was day time and was roaring to go. hahaha!!!!

Once I got in that room she really didn't want me to leave. I had to kick some linen out of the room and she growled at me?!?!? grrrrrrrr!!!! She actually did that several times tonight. She is so funny. I think she is going to give John and I a run for our money.

Haley had to leave today. I really hated to see her go. When it was time for her to say goodbye to Katlyn, she had tears in her eyes. What a doll. Then, when she had to say goodbye to me, I could tell it was really hard on her. She was crying and it was breaking my heart. It must be so hard for her. Poor sweety. I wish we could see her all the time. I explained to her that we have to stay here for however long it takes to make sure that her sister was safe and healthy.

It really is very hard to be away from everyone. The way that I deal with it is by just trying not to think about it. I just try to focus on the things in front of me instead of thinking about home. It's almost as though I'm mourning a loss. It really does upset me. What can I do about it though? Nothing. It's in God's hands.

Sometimes I wonder why this is happening. I have no idea. I think it is so unfair that children get sick. My little girl is so happy and has no idea that something so wrong is hapening to her. How fair is that a one year old child should have to spend day after day locked in a room. She doesn't even have the freedom to even run free within her room. Katlyn hasn't even tasted the fresh air in 6 months. I can't wait until things are normal. I just want her to be able to do all the things other children can do, like being touched.

It really is pretty hard. You don't really understand this type of lifestyle until you're thrown into it. I don't feel as though you can. I didnt. Our poor little girl. Every minute is just so precious. I don't even know what I would do.

OK!!!! Enough whining. Today was actually a pretty good day. Katlyn's neautrophil's are 1400. That makes me feel even better than winning the lottery. This is it, another step in the right direction.

Tuesday, March 6, 2007

Another Great Day!!!

Today was a great and last night was another story. You'd think with the little sleep I got I would barely be able to function properly. Day after day I function on only a few hours of sleep. I don't know how I do it. Last night Katlyn would not go to sleep. I don't know why. She was awake until 5:30 am, and then up again at 10:00 am. That just wasn't enough sleep for me, however I was still able to function and have a great day (mind you the coffee intake was higher than normal).

The doctors increased her dose of PEG ADA and now she's getting it twice a week. I think this is a good thing. I really hope things keep going this way. It's so stressful when things always seem to go downhill. One minute your so happy because things seem to be going in the right direction for once, then it's all taken away from you with something else going wrong. It's really stressful. It's a wonder we haven't lost our minds. You might think that we'd lose hope, but if we don't have hope then we don't have anything. We'd be lost. We just take everything day by day, and enjoy our girl as much as we can every single day. Loving her is the easiest part, getting a great big atomic bomb in your life is the hard.

Katlyn is so funny. She'll stand up against the wall and let herself stand without holding on to anything. It's awesome. On the 26th she took her first steps. I was so freaked out that she was walking on the floor with no shoes on, I brushed right up and didn't have that chance to take it in. She was walking by herself. I don't know how far she would have went. She walked to two steps and was going for her third when I picked her up. It was awesome.

Also today we took Haley to Build-a-Bear and swimming. She really seemed as though she was having a great day. I really miss seeing her. It makes me sad to think that she will be leaving son. I find having her around is so refreshing. It's really to bad she has to leave. Well I guess we'll be home someday. Hopefully we'll all be able to go to Italy once a year for Katlyn's annual check up.

I just can't wait for that day, but I have to. Sometimes I dream that we're home. It's so great. I just want to be able to take our girl for walks in the nice fresh air. WOW!!!! The things we take advantage of in life. I always find it kind of funny when another parent is complaining about being here for a few days or a week. They don't understand what living in the hospital is like. They'll never understand unless they live. I never really understand how a parent deals with having a child with cancer or another life threatening illness. Not until I was put in that situation. God gives me the strength everyday to get through this.

A Great Day

Today was a pretty great day. Katlyn had an appointment downstairs. We used to transport her by putting her in the incubator, but now she's just too big for it, so we had to pt her in her stroller with a plastic weather cover over it. I think that she really enjoyed herself. She kept saying "what's that?"...It was so cute. What a cutey.

Anyway the audiologist notified us that her hearing isn't quite as bad as they first anticipated. She will still have to wear the hearing aids of course, but he needed to adjust them. He explained it as the bass being higher than necessary for Katlyn. I wonder if this is why she keeps throwing them? (Probably because she is one years old.) Oh yeah! The audiologist asked me if I wanted him to refer Katlyn to a behaviour specialist.

At first I was a bit reluctant because he mentioned that sometimes they get children to take pills and stuff like that. I thought that he meant Katlyn might have to take pills in order to keep her hearing aids in. And for anyone who knows me, you know that I dont believe pills are the answer to everything. I just misunderstood the comment though. He meant that they will help children do things that are out of their control, hearng aids sometimes being the thing. I said yeah, of course. I can't wait It is so frustrating to try and ke them in. Most of the time she only has one in at a time because the other one is off getting fixed. It really is just so crazy.

I almost forgot. Katlyn's neutrophils where 1900 today!!!!! I am so excited. This is great. I dodn't have a chane to talk to her doctor but hopefully I'll be able to tomorrow. I really hope we get to go to Italy. Oh everyone, here's some info about neutrophils just in case you're interested because I know I have been talking about them a lot

Also here is a couple of links about ADA SCID for you to read about.

Sunday, March 4, 2007

Katlyn's Doctor came to see her today and seemed to be in a great mood. He said he and his brother were going to talk about what we'll be doing with Katlyn, whether we keep her on the PEG ADA or not. The type of SCID that Katlyn has is ADA ,there is a lack of the enzyme adenosine deaminase (ADA). They take ADA enzymes from cattle and boost the full of sugar (so that Katlyn doesn't just pee them out), and this temporarily replaces her ADA enzyme.

I imagine that they'll speak with Dr. Aiuti some time this week and maybe (cross my fingers) they'll know something, anything would be great. It would be really nice to hear that Katlyn will be going to Italy. That is really what I want so badly.

She really is a complicated child. I have a feeling that even when she is feeling better and older, she'll continue to take me on an adventure for the rest of her life. What a doll!!!

She was a littlle cranky today. I think it's because she's getting her first molars and eye teeth coming in. I can't even imagine the amount of pain teeth would cause. Daddy just put a little oragel in her mouth and she was great. What a trooper.

The feeding is going really well too. Until fairly recently, Katlyn was only allowed to drink formula, eat puree bananas and cereal. Because she was stilleating the same food as a baby, she was gaining at the same rate, which was too much for a one-year-old. Now she is able to eat english muffins, zoodles, toast, oatmeal, peaches, pears and real cereals...just to name a few things. She is loving it. At forst it was really hard for her, making her gag. Now she actually trying her best to chew her food. I have seen a lot of changes since her food changed. Her formula intake is less, stools are more formed (stinkier too!) and she's eating a lot less. I really feel as those she is satisfied.

Right now I'm cooking some supper down at the Ronald McDonald room. They have a stove and everything to use here, whereas the rest of the hospital only has a microwave. When I'm done eating I have to bath my girl. What an adventure that is!!!!!

Just to be on the safe side we bath Katlyn in sterile water. What work, but the girl has to get clean. She loves her baths so much. she plays and plays in the tub, and she gets so mad when I take her out. What a girl!!!

Tonight we're taking Haley to a movie at the IMAX. I think I'm more excited that she is.

Visit with Sissy

We live a hour drive away from the hospital so it's really hard to commute. I haven't even been home in all that time. I decided that if my little girl was going through this I was going to go through every day with her. And that I have.

After six months of being in the hospital with barely any family contact, Katlyn gets to see her big sister. She acts like a completely different little girl. It's almost like she is showing of for Haley. She laughs at evry single thing her sister does and stares at her constantly. It's just so cute. Katlyn hasn't been around any children at all for that matter. It must be amazing for her to see a little person just a little bigger than her.

At first Haley coming to visit her sister was pretty much out of the question. I just thought it would be so hard for a child to grasp this whole concept. I know a lot of adults have a hard time. We have to gown, glove and mask in order to enter her room. But after 6 months of being here and basically spending more time in the hospital than out, I felt as though it was long over due.
The both seem as though they are having such a great time. I know I am.

And I guess they will always have this. When Katlyn is home and well, Haley will be able to tell her that she can remember her being in the hospital, and was here to visit her.

Yesterday I took Haley to the clay cafe. What a great time. She really seemed to enjoy herself. I think the best part for her was riding in a taxi for the first time. She was just so excited. I had a lot of fun!!!! Thanks Haley.

Well, I better go to bed now. It's way past my bedtime and I have a little girl to get up with in the morning.

Saturday, March 3, 2007

Another Day Goes By

I met a couple of parents that are writing on these bogs and I thought, why not? I might as well too. Who knows, I could reach out to someone somewhere.....or something.
Where to start????
I guess I could give a quick rundown of what has been going on in my daughter's life in the past year.
Katlyn Lee DeMerchant was born Feb. 5, 2006 at 2:30 p.m., and everything was just so perfect. I thought we are going to be so happy having this little girls in our lives. Little did I know that that was so true in so many ways.
Katlyn was born a little mucousey. I never really thought anything of it cause a lot of babies are mucousey, and this should pass within a couple of weeks. Well, it didn't. And two months later was a nightmare.
A baby at two months isn't very big. I can remember being horrified that my little bundle of joy could be so hot. I knew something was very wrong. Babies this young should not get sick. We brought her to emergency. She had a fever of 104 degrees. They detected e-coli in her system so started to treat her for that. Two weeks later we found out the e-coli was detected in her throat.
Besides what brought us here, that was the sickest she ever got. I had her in emergency a couple times a weeks and to the doctors at least once. I knew something was wrong. I was so scared that I might wake up and find my girl gone. It just seemed to me that she was having a hard time breathing.
Believe me when I say I tried my best to get to the bottom of what was wrong with my daughter, but ignorance stood in my way. There is just so much more education and awareness needed for this condition. The doctor's that we had seen just didn't know about this.
My girl was diagnosed when she was 7 months old. She was extremely ill. She had PCP Pneumonia. Those days were so scary. She was on oxygen for a month. I can still ear her panting for air.
We could have lost our little girl.

Katlyn looks just like your average 1-year-old, but on the inside something is very wrong. She has been at the IWK, in Halifax, N.S., for 6 months. Each day is a constant risk for my daughter. She is isolated to her room. She can't leave. She can't touch the floor, and everything has to be cleaned continuously. Basically, she is in a bubble and her room is her bubble.

Right now we have no idea what's going to happen. Bone marrow transplant is an option, but only as a last resort. Gene therapy is the other. It's very exciting and promising for Katlyn, but her neutrophils have been standing in her way. Her doctor here contacted the doctor in Italy to see if they might take her. He said he would if she could maintain a level over 1000 for one month. Well she has. And still we wait with no idea. After waiting for a month Katlyn went down to 600, then 800. I really don't know why. Maybe she was fighting something or other. We can only test for the known.
The great news is Katlyn's numbers are again really very good. 1200. And so we wait. We wait to see what will happen tomorrow, next week, month and for the rest of lives.