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Old 06-28-2008, 02:18 PM   #1
Robin+5
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Nathan's Wish Trip Aug. 2008

Thanks to Bill Lin I was able to set up this thread.
I am married (21 years) and we have 5 children. We have 4 girls: Kim 18, Courtney 16, Morgan 10, Katelyn 9 and Nathan who is 14. Nathan is our wish child. He was bit by a mosquito that was infected with Eastern Equine Enchepalitis (EEE) in August 2007. He went to the first day of school (8th grade) and the next day he was in the hospital. He was transfered from our local hospital to Boston Children's when they had no idea what was wrong. The next morning he had a seizure and was placed in a medically induced coma. The seizure was caused by the brain swelling. We were told a few days later that Nathan had EEE and that there was a 50/50 chance of survival. The doctors were worried that the brain would swell so much that his brain would herniate and the damage would be irreversable. We lived minute by minute for about 1 week wondering if he would live or die. My husband and I took turns, one staying with Nathan and the other going home to be with our 4 daughters. He was in ICU for 3 weeks and then on the neurology floor for 1 week after that. He was then transfered to an inpatient Pedi rehab facility, where he was for about 5 weeks. The virus caused a brain injury. There have only been about 270 cases of EEE in the US and about half of those died. A major portion of the survivors have severe physical and mental disablities. There is no treatment and no cure for EEE. Because EEE is considered a public health threat, we were bombarded by the media. Nathan made the front pages of the papers for about 2 months. The local police had to ride the school bus because the reportes were trying to get interviews with Nathan's friends.
We all call Nathan our "Miricle Boy" . He has very minor physical disabilities. He has a lot of cognitive issues. He has short and long term memory loss, attention and focus issues, he is impulive, has no intuition and knows no boundaries. He is 14ys old, 5'10" and can't be left alone. He is a sweet as pie though. He would give the shirt off is back to anyone that asked. He was discharged finally in November and we were able to all be together again, except for our 18 year old daughter. I forgot to mention that our 18 year old went off to her freshman year at college during all this. She went 1 1/2 wekks late because she insisted that she would not leave her brother just in case something happened. It was a very tough time for all our kids and us. After returning home, Nathan received OT. PT and Speech/Language through a pedi rehab facility 3 times a week. He went back to school in January on a very limited schedule with a one on one tutor. I have had to give up my job as a nurse to be home and take care of him and take Nathan to all of his therapies. This is where MAW comes in.
Last June 07, we went to Disney. We saved and planned and finally went. We stayed at Pop Century and had a blast. It was the first time for our younger girls and older kids remembered very little of our trip in 1997. Unfortunately, with Nathan's memory loss, he remembers very little about the trip. He would ask us questions over and over again about the trip trying to remember it. One of this therapists mentioned MAW so that he could make new memories. We contacted the New Hampshire MAW office and went from there. We were not sure if he would qualify. They has never has a request for a person that has contracted EEE. Nathan qualified and we had our wish granters come to the house to find our more about Nathan and the rest of us. They came with a basket of goodies for ice cream sundies. Joanne and Linda were the sweetest people and really listened to Nathan's wish. We just found our that our wish has been granted and we are going to Disney from August 16-August 23. The flight is all booked and the hotel is booked (Carebbean Beach Resport). Now I am a planner and I am having a hard time letting someone else plan this trip. We are truly gratful for this trip. I searched everywhere on line about found this site. What a wealth of knowledge here. I have been on line for hours reading all of your wonderful stories. I am gathering all kinds fo info. Thanks. I will keep you posted about our pre-trip plans.

Robin
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Old 06-28-2008, 04:47 PM   #2
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As a pediatric nurse and grandmother to a MAW child, I know somewhat of where you are coming from. My daughter and her husband have struggled so long to make things wonderful for their family and their Miracle daughter. You will surely be blessed for your love toward your son and daughters. Hope you trip is truly magical.

MAW is wonderful!

Denise
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Old 06-28-2008, 05:04 PM   #3
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Great Start

Great Start to your TR Robin. Are you comfortable with how to post pictures?

Keep up the good work.

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Old 06-28-2008, 06:38 PM   #4
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First of all, welcome to the DIS!

I'm subbing. I'm so glad to hear that Nathan made it through - what a scare for all of you, especially for you being a nurse. Sometimes you wish you didn't know so much but it's a good thing that you do.
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Old 06-28-2008, 08:38 PM   #5
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Great start to your pre-TR!!!! I can't wait to read more!!
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Old 06-29-2008, 01:13 PM   #6
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Thanks for making me feel welcome!!

Bill,
I have no idea how to post pictures. Help would be greatly appreciated.

Well, we spent the morning on the computer looking at all the parks and rides in those parks. We have come up with a list of must do rides and some rides that if it fits, it would be good. A lot will depend on Nathan. He tires easy and needs frequent breaks. His brain is still healing and he gets overstimulated easy. I also took your advise and make some dinner reservations. It was very easy. I was surprised. The only one that was full was Mickey's Backyard BBQ. We made reservation at Crystal Palace, Rose and Crown Pub (for my daughters 19th birthday), 50"s Prime Time Cafe and the Hoop Dee Doo Revue.

Will keep updating!

Robin
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Old 06-29-2008, 02:57 PM   #7
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can't wait to read more about you and your family.

becca
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Old 06-29-2008, 03:27 PM   #8
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Posting Pictures

Dear Robin,

I am sure there is a thread somewhere the deals with posting pictures, but I can never seem to find it.

Go to photobucket.com and open a free account. Next upload your pictures from your computer to photobucket. Edit each picture so you resize it below 600 by 600. Go back to view albums and click the last link under the picture. That will copy the url to your clipboard.

Start a post in DISboards. Click on the globe icon at the top of the window. Paste the link from your clipboard into the window that appears. When you close that, it will have the link in your post. Now submit the post and you should see your picture(s).

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Old 06-29-2008, 03:33 PM   #9
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Wow, it certainly seems like you all have been through so much! Nathan seems like quite an amazing kid with a lot of fighting spirit! I LOVE boston Childrens hospital. That is where Hannah had her open heart surgery.How exciting that you are going soon and are going to make some wonderful new memories.Looking forward to reading all about your experience!
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Old 07-01-2008, 10:40 AM   #11
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Just found your thread...
I have a DS Nathan 14 also..and my dd just finished her first year in college...

I can't believe your story.... life can turn on a dime....

I am so glad your Nathan pulled thru and is recovering!

Have a fantastic time on your trip!!
CBR is our favorite resort!!!
we were there in august and it can be pretty hot and sticky...
we brought those misting fans and I filled the bottles with ice in the am...it kept the mist cool a bit longer... and we wet bandanas and put them around our necks on really hot afternoons...

have fun!!!
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Old 07-01-2008, 10:22 PM   #12
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akhenaten
Wow, I like your DS name. great minds think alike Where did your dd go to school? How was her first year?
Thanks for the words of encouragment and the great tips. I am looking for the gel filled neck coolers. I think that will help.
We have been looking on line at the pictures of CBR. It looks like an awsome place. How was the food?

Robin
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Old 07-05-2008, 08:22 PM   #13
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pictures

I am trying to post pictures. We will see how it works
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Last edited by Robin+5; 07-05-2008 at 08:42 PM.
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Old 07-05-2008, 08:40 PM   #14
Robin+5
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wow I did it

Here is my boy Nathan with his Goofy.
We went to WDW in June 07, before he got sick. Unfortunately, Nathan does not remember much of that trip due to the brain injury.




Here is the rest of my gang.


Morgan,10; Kim, 18; Courtney,16; Nathan,14; and Katelyn, 9 (in front)

It only took me about 2 hours to figure out how to do this. I am a slow learner!!

Robin
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Old 07-05-2008, 08:48 PM   #15
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Can't wait to hear about Nathan's trip!
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