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Old 10-19-2007, 01:56 PM   #136
Iluvmickeymouse!
Proud mama to a DD who beat HLH
 
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Do you ever have one of those days where you just don't know how to feel???? Exactly four years ago today my daughter was diagnosed with HLH. It was a day when my world came crashing down around me. How can my 2 month old be dying?????? I had never felt such dispair but yet I knew that we had to overcome it because I was not going to lose my baby!! I was relieved that we finally knew what was going on with her. We had spent two weeks in a different hospital (where they could not figure out what was going on) before they transferred us to Iowa City. But my relief quickly went away when I found out that she was going to have to recieve chemo. Chemo in a two month old???? You want me to put that poison in my baby???? Then to find out that chemo alone was not going to cure her, that she needed a bone marrow transplant to save her life. All I could think was how am I going to get through this, but I knew I needed to, for my daughter, and that I would with the help of family and friends.

Looking back, that day changed the rest of my life and my daughter's life. Seeing how far she has come since then just amazes me. And to be going on her Wish Trip in 4 days.....just amazing.

Thank you for listening to me ramble. Here are some pictures of DD when she was first diagnosed. The one thing that always got me was that she never "looked" sick. (yup that is my DH in the one photo)



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Old 10-19-2007, 02:23 PM   #137
patticake3
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Those baby pictures are precious! She is obviously quite the fighter - all our kids are such heroes, they really are. Enjoy every second of your wish trip!
-Patti
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Old 10-19-2007, 03:18 PM   #138
patticake3
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Hi Camster! Your wish trip is so close! You must be so excited! I need to find some more of your posts to learn your story. I have been reading many trip reports and have already gotten great info from the wish trip reports! I've been laughing and crying through all of them!

By the way, we have a ton of family in New England (MA and RI) and we've got quite a baseball rivalry going on! We sure are going to miss Joe T, that is for sure!
-Patti
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Old 10-19-2007, 03:44 PM   #139
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Quote:
Do you ever have one of those days where you just don't know how to feel????
I know just what you mean, Karla. Last week I was feeling very mixed feelings about our Wish Trip.. Not that I wasn't grateful or happy we're going, just sad that we are able to do this b/c this disease will kill my baby one day. I don't think I can explain it, it's just hard sometimes... I'm better now, and I wouldn't say that to just anyone, I'm hoping you guys know what I mean.
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DH- 43, DL 2x
me- 38 DL 8x
DS- 17 DL 4x
DD- 8 DL 4x (Wish kid)
First Trip to WDW October 21-28 2007!!!

Link to my TR:
http://www.disboards.com/showthread....2#post21543422
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Old 10-19-2007, 04:43 PM   #140
Camster0307
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Iluvmickeymouse - You're daughter is beautiful! Never underestimate her strength - or yours! Have a wonderful trip!

patticake3 - I'm fairly new to these boards and have really never posted "our story", so I guess this is as good as time as any.

Amanda started seizing at 3 days of age. By 3 months, she was in ICU on a ventilator. We went thru so many diagnosis - but nothing definitive. She has been labeled as having a "metobolic disorder" although no test confirms exactly that. She underwent a tracheotomy and also received a g-tube by 4 months. We were told she would never breathe on her own and should put her in a residential facility. NO WAY! With 24 hr.a day homecare nursing we took her 2 days before her first xmas. I'm proud to say that by her first birthday, she was breathing on her own and not using the ventilator! By the age of 3, her trach was removed.

She is still seriously disabled and cognitively functions at an infant level. She is very much aware of her surroundings and her mom and little sis of course! Unfortunatey, the past few years have been tough. Amanda has an inoperable severe scoliosis which affects her respiratory funtion. She became very ill last fall and needed a tracheotomy again - it's made a world of difference for her and I'm so glad we did it. I know her scoliosis will continue to worsen which will eventually make it harder and harder to breathe, but we all just take it one day at a time. She is truly an angel and I believe this child came into my life for a reason. My younger daughter and I are truly better people for having Amanda to take care of. If there's one thing I've learned through all of this is that doctors DO NOT know everything and our children are stronger than we could ever realize! (ok, that's 2 things!)
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Old 10-19-2007, 06:11 PM   #141
palpluto
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I can so relate! i had been happily planning all these wonderful things for the trip and have been so excited, as are the kids. Then, one day last week, I was getting pics together to email to the person at Coral Reef for the personalized menus and thinking about our schedule and it just came out of the blue and I started thinking about why we are going on this great trip. I had not really allowed myself to think about it before that I guess. But, I was a wreck the rest of the day+. Usually, I just keep going thinking he is going to prove them wrong again and praying for that miracle. That day I happened to be home by myself for the first time in a long time, because my son has not been able to go to school unless I go until we had a trained nurse. Now he is going 2 days a week without me, and that was the first day.
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Old 10-19-2007, 10:10 PM   #142
Momof2wCF
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to everyone! And thanks Karla for bringing this up. I thought I was just weird to feel that way. No more sad thoughts. We are going to have an awesome trip
Our kids are going to do great, after all, they have us...AND MICKEY!!
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Kirsten

DH- 43, DL 2x
me- 38 DL 8x
DS- 17 DL 4x
DD- 8 DL 4x (Wish kid)
First Trip to WDW October 21-28 2007!!!

Link to my TR:
http://www.disboards.com/showthread....2#post21543422
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Old 10-19-2007, 10:23 PM   #143
palpluto
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Originally Posted by palpluto View Post
I can so relate! i had been happily planning all these wonderful things for the trip and have been so excited, as are the kids. Then, one day last week, I was getting pics together to email to the person at Coral Reef for the personalized menus and thinking about our schedule and it just came out of the blue and I started thinking about why we are going on this great trip. I had not really allowed myself to think about it before that I guess. But, I was a wreck the rest of the day+. Usually, I just keep going thinking he is going to prove them wrong again and praying for that miracle. That day I happened to be home by myself for the first time in a long time, because my son has not been able to go to school unless I go until we had a trained nurse. Now he is going 2 days a week without me, and that was the first day.
Oh, btw, the point about being home by myself wasn't that I don't want to be home alone, but that when you are with kids you just keep going and are happy. Didn't want people to think I was on the wimpy side.
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Old 10-19-2007, 10:36 PM   #144
Eeyore's Mom
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palpluto- I knew exactally what you ment because I feel the same way. I don't have time to think or at least don't let myself think about those dark feelings often but it is when I am alone or things are real quite that my mind will start to wonder off in that direction. Now I have Mickey to wonder off to

We are actually at a really good place with my son's health. In fact the best that he has ever been since birth but I still have lot's of concerns that I don't have with my other kids (I have plenty with them too but they are different). So I had a tinge of guilt that my son was too healthy to be taking this trip and we actually postponed it until I decided that we wouldn't be offered this chance if he didn't deserve it. I know others have felt that way too. I have lots of other thoughts and emotions on it as well but now I just feel pure joy and excitement!
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Old 10-20-2007, 07:01 AM   #145
patticake3
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Camster, thanks for sharing your story. I am amazed by the stories, the kids, the parents, the siblings, everything. I am also inspired by the positive attitudes and strength that I see time and time again. I know we all do what we have to do, but there is a real light that shines through all these families I read about (and that I've met along the way in our personal journey).

I can also relate to those of you that have been hit every now and then with the reason for your trips and feeling a bit overwhelmed or down about it. I have a tendency to push thoughts aside and just move ahead, but there is fear and worry and just 'I cannot even believe what my son has been through' always on the surface. I am so happy for all of you that you have these trips to look forward to! The kids deserve all the fun and magic in such a big way, and so do you!

Off to read more wish trip reports! I'm totally hooked!
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Old 10-20-2007, 07:10 AM   #146
patticake3
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Kirsten, by your signature I see that you are leaving tomorrow! If I got that right, have an amazing and fabulous trip!!!!!!!
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Old 10-20-2007, 07:42 AM   #147
Camster0307
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Kirsten - Have a wonderful and magical trip!

Hope all have a good weekend also (even though it won't be in Disney!) I'm off for a 5 hour drive to NJ this weekend for my nephew's christening - I'm the godmother! patticake3 - I'll honk the horn to you while I'm driving down the parkway!
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Old 10-20-2007, 08:14 AM   #148
Momof2wCF
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Quote:
Kirsten, by your signature I see that you are leaving tomorrow! If I got that right, have an amazing and fabulous trip!!!!!!!
Quote:
Kirsten - Have a wonderful and magical trip!
Thanks guys! I woke up at 5 am and couldn't go back to sleep, I'm too excited!!!

I've got to get off of the DIS boards and go finish the last minute packing or DH will be thinking I don't want to go
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Kirsten

DH- 43, DL 2x
me- 38 DL 8x
DS- 17 DL 4x
DD- 8 DL 4x (Wish kid)
First Trip to WDW October 21-28 2007!!!

Link to my TR:
http://www.disboards.com/showthread....2#post21543422
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Old 10-20-2007, 08:46 AM   #149
wendygrace
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Kirsten have a Magical Trip!!

I am also, pretty regularly, struck with the reason for our trip. I know that I struggle with going about my/our life. I always say "I'll get to that after Michael's next surgery". Don't mind me, I'm in a dark place today.

In other news, there is no news. Been a quiet week, relatively, here. LOL I'm working on all my Christmas shopping.

Hey Kirsten, don't forget to shop for Christmas while you're out there!

Can you believe its almost the end of the month!?!
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Old 10-20-2007, 08:50 AM   #150
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Quote:
Originally Posted by Momof2wCF View Post
Thanks guys! I woke up at 5 am and couldn't go back to sleep, I'm too excited!!!

I've got to get off of the DIS boards and go finish the last minute packing or DH will be thinking I don't want to go
You are going to have an awesome time!! Just roll with the flow and the interuptions to "The Plan" Isn't that what all of us have to do daily?? Is there any one of us that doesn't have constant interuptions our our OH SO Calm and Controlled lives?????
Have lots of un and REPORT here first when you get back!!!!!
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