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Old 12-16-2008, 02:26 PM   #1
dmbfan
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Jakob's Pre Make-A-Wish Trip ( Big Give Photos 3/13/09)

I hope I am doing this, after reading a TON of pre Wish trip reports, I think I can do this...

My son Jake was approved for MAW out of the Boston Chapter a month ago. I guess we are still in the beginning stages of this process, and kind of like Jake's medical stuff, it is moving slow. Jake's GI dr at Children's had put Jake in for a referral and we heard about a month ago that he was approved.

They called again today and told me that we should be getting a call from two volunteers that will be signed to his case in the next week or so. They asked me if Jake had any ideas of what he was going to wish for, and I laughed and said, "well, we really have not said anything more to him yet, but knowing that he is a Disney obsessed 8 year old, my guess is Disney World" She started laughing and told us that Disney was one of the most common wish's, and that they do a 7 days, 6 nights and that he would love it. So hopefully we can get the process starting soon, as I would to aim for sometime at the end of March. Mostly due to the weather. He struggles with heat, as we had a gone a couple years ago in Mid July and he spent most of the time in the stroller with the dry heaves. So hopefully the dates we want will not already be filled up.

As for our family, I am Christine, been married to Kevin for 11 years this Aug, we have been together for 13 total. We have a almost 10 year daughter Hannah, she is a great big sister to Jake, and has been thru alot herself due to Jake's medical illness. Than their is Jake, who will be 8 at the end of next month. Jake was born with medical issues, but over time have progressively got worse. These last two years have been really hard for our family. Jake has been in and out Children's Hospital over 60 times in the last 2.5 years. On top of having major GI issues, he was dx in July of 06 with Cyclic vomiting syndrome.

This is what took a toll on our family and more so Jake as he was admitted every two weeks due to these vomiting cycles. Everytime we got a cycle, they would have to sedate him in order to get the vomiting to stop. After about 6 months of his dx, we took Jake to a dr who deals with CVS in MO, he was wonderful, he was able to help us come up with a plan that would make Jake's cycles less violent and easier on him. His Drs at Children's, followed this plan and we had a central line placed ( port-a-cath) and added new meds that would help. Both of these things worked wonderful. Soon as the vomiting started now, we were able to get an IV started, give him fluids and sedate him. After about 12 or so hours he would wake up feeling much better. The worst part was because he was solely J tube feed, we could not leave the hospital until we knew he could tolerate his feeds. This went on for a year and a a half until his drs finally gave us the ok to be able to do this care at home..

Than in this past June, Jake ended up back in the hospital for vomiting, but after days of vomiting we learned it was not a cycle but a small bowel obstruction. We sat in the hospital for 14 days with no success of getting him back on J feeds. He was finally placed on TPN and was able to go home. We did think it was going to be short lived and that he would be back to his J feeds in not time, but here we are 6 months later and actually doing worse than we were just two months ago. He has since been in and out of the hospital with a line infection that never cleared, there for needed his line pulled and replaced again. He is struggling with what little J feeds he is getting to just keep his gut moving, that we have to turn his pump off and give him a brake. He spends most of his days with a puke bucket in front of his face, his leg are always in cramps, and he is hooked up to his IV with either TPN or IV fluids. He has missed so much school, but thankfully second grade has come to him, both in the hospital and at home. He has spent many holidays, and birthday's inpt. Just this year, he had missed the Big Apple Circus we had tickets too, he was in the hospital this past Halloween due to his line infection, and we thankfully were able to get out before Thanksgiving a couple of weeks ago. Yet we know at anytime, as soon as he starts to go downhill, bringing Jake back in is always the best thing for him. More so cause of the gut shut down. We have to be very carefully if the vomiting does not get better and the IV fluids do not help, than we need to take him in.

For Jake this is a very special thing for him ( as it is for all the wish children). For him to be told he can make any wish in the whole world and it will come true is amazing. The first thing he said was to not get sick anymore, and not have to go to the hospital anymore. I had to let him know that that is one wish we just can not get right now, but in time we will. The next thing out of his mouth was Disney. I think he thought I was kidding, when I said " well if that is your wish, than that is your wish", he looked at me and said, "yeah right only in my dreams", I said " really if that is what you want to wish for, than that is what you can wish for". He looked at me and said "REALLY", I said "Yes Really"....and he hugged me shaking and crying...of course I started crying, for the first time in a long time I saw such happiness in Jake that I have not seen in so long.

Of course all of this will seem much more real after the volunteers come. I think it will for Jake too. Well I just wanted to share a little bit of Jake's story and how grateful our whole family is that Jake is able to be granted a wish, let alone be able to go to his favorite place in the whole world.

Please feel free and visit Jake over on his CB site, he loves when people sign his guest book, he has made friends with some many people from ALL over the world due to his Youtube "your beautiful" video, I know he would love to see others that are obsessed with Disney also sign his book. I will however will be sharing his MAW news on his webpage this Thursday after a big Drs appt...

Thanks for letting me share our story with you all.
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Jake's Make-A-Wish Disney Trip 3/09 (alot of pictures)

Last edited by dmbfan; 03-13-2009 at 05:50 PM.
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Old 12-16-2008, 02:59 PM   #2
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I'm definately subscribing and can't wait to hear more
Sorry to hear of all the struggles lately. Right now we are off TPN, but the struggles continue. It is so exciting to have something tangible to look forward to though!
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Old 12-16-2008, 03:35 PM   #3
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this is seems like it will be great!
:D
i started crying when i read the part about how YA'LL started crying.
it was so sweet. i am so glad he is so excited about disney, you will have a blast!
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Old 12-16-2008, 03:56 PM   #4
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Oh what a story! I'm so excited for him and ya'll! I'm off to read his cb site.. Our daughter has one too (emy)
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Old 12-16-2008, 04:37 PM   #5
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Ding, Ding, Ding...

I think I hear the train bell ringing, consider us on this ride.
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Old 12-16-2008, 06:28 PM   #6
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Thank you for reading his story...I will be sure to most as soon as I hear when the volunteers will be coming....
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Jake's Make-A-Wish Disney Trip 3/09 (alot of pictures)
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Old 12-16-2008, 08:21 PM   #7
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cant wait to hear more
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Old 12-16-2008, 10:13 PM   #8
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Hey Christine! You know I am along for the ride! I have "known" Jake since forever (in cyberworld) if anyone is deserving of a wish.. it is this family! I can't wait to hear all about the wonderful time that Jake will have.
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Old 12-17-2008, 01:43 PM   #9
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Quote:
Originally Posted by mom2lilnick View Post
Hey Christine! You know I am along for the ride! I have "known" Jake since forever (in cyberworld) if anyone is deserving of a wish.. it is this family! I can't wait to hear all about the wonderful time that Jake will have.
Amy thank you so much... I know we have know each other for quite sometime now...and here we both are...Thanks for helping me with all of this... Can't wait to follow your trip when your home!!!
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Jake's Make-A-Wish Disney Trip 3/09 (alot of pictures)
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Old 12-17-2008, 05:50 PM   #10
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Thanks for sharing- you all have been through so much. You all are so deserving of this trip. A Make A Wish trip to Disney World is pure magic! I can't wait to hear all about your plans as they unfold.

Carol
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Old 12-18-2008, 07:03 AM   #11
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Is anyone here from the MA area? I know all MAW chapters are different, so I would love to hear how the MA ones works.
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Old 12-18-2008, 11:46 AM   #12
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i hope your trip works out great!!!
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Old 12-18-2008, 06:09 PM   #13
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subbing!!

can't wait to hear about your trip!!!
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Old 12-19-2008, 05:44 PM   #14
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Just updating Jake's CB site with his big GI appt today and the annoucement on Make-A-Wish. If anyone would like to read it, please click on the link below.

I just MAW the kids Birth C and my dh and mine ID's...hopefully the volunteers will call soon, I am guessing I won't hear anything until after the new year...it is so hard waiting...I just want to get the dates in...ahhhh, I know in due time right...
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Old 12-19-2008, 11:36 PM   #15
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Gosh...I don't remember anyone from the MA area...You might be the first!! At least to do a full TR on the disboards!
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