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.
Friday, March 30, 2007
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
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!!!!
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. 
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.
Subscribe to:
Posts (Atom)