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Old 06-27-2009, 11:44 PM   #1
MomTo4+more
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Smile Deyki's Make-A-Wish - 12/15 - Maybe not

Hi everyone Wow! These boards can be overwhelming with all the awesome info and incredible stories! I am glad I stumbled upon it in my on-line searches today.

I guess I will introduce my crew first. I am a single mom to three adopted children - maybe soon to be four. Nidra is 10. She was my first foster child, and I was happily surprised to be able to adopt her. She is friendly, helpful, inquisitive, and a joy to be around. Chantae is 7. She is a smart, articulate, gentle hearted child. Michelle may be my fourth child. I have had guardianship of her since February, and her mom just asked me if I would keep her. We will be talking more next week. Michelle is profoundly deaf because of meningitis and two strokes in infancy. She is a year old now and recently got bilateral cochlear implants. She is doing amazingly well and is even starting to use a few words!

Then there is Deyki - my make-a-wish child. Deyki is 5. He came to me at 6 months old after spending 3 months in a nursing home for children. He was born addicted to cocaine and was diagnosed with sickle cell disease at a week old. Deyki has had about 36 hospital admissions for pain, blood transfusions, acute chest syndrome, asthma, pneumonia, spleen sequestrations, and other sickle cell complications. At two years old they removed his spleen because of repeated life threatening events where he almost bled out into his damaged, greatly enlarged spleen. Living without a spleen leaves him immune compromised, but it was the best option. At three years old Deyki was diagnosed with Chiari 1 Malformation. At four he was diagnosed with moya moya syndrome. A year ago this week we started Deyki on hydroxyurea, an oral chemotherapy med to help with his blood counts. It has worked really well. His moya moya is improving - almost gone. He has only been admitted once for pain and three times for illness this past year. He isn't in as often now, but when he is admitted he is a lot sicker. We spent this Christmas in the PICU and were back there again a week or so after Easter. To top it all off, Deyki has multiple life-threatening food allergies that make it tough to feed him anywhere but at home.

Last week Deyki asked his hematologist if he could have a Make-A-Wish, and she said yes. I e-mailed a referral to our local branch and heard back from them the next day. They faxed the paperwork to his doctor on Thursday and said they would call again when she sends it back.

Deyki wants to go to Disney and spend his birthday with Spidey. He hopes to ride the Spiderman ride with Spidey himself. He wants to fight Darth Vadar with a light saber. We are eagerly awaiting the call back from MAW. I don't know if it's unrealistic to hope they could coordinate all this by his birthday in October or not. We will be at the hospital for the baby next week. Maybe I will be able to find out if they receive the FAX from MAW this week. It all seems fairly surreal right now!

Last edited by MomTo4+more; 12-15-2009 at 12:31 PM. Reason: revised title
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Old 06-28-2009, 08:06 AM   #2
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I would love to hear from anyone who has done the parks with little ones and older ones. I am debating whether or not to bring our one year old. I am sure there are parts of it she would enjoy, but I think she would end up spending a lot of time sitting in the stroller while the older children have fun. I have thought about maybe bringing a sitter along for her, but then I wonder if it wouldn't be better for her to stay here and continue her therapies. Then I look at her sweet brown eyes, and I know I would miss her.

We have plenty of time to decide. I would love to read about anyone's experience in this area.
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Old 06-28-2009, 11:37 AM   #3
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Hi, I am from the wish tripper's thread and I am happy you guys are getting a wish. I am doing Disney in July with a two year old. I have no doubt that you will be able to get October. Mya was supposed to go on her wish trip then, but then she relapsed and in a day they moved her trip up to July. Make A Wish is very capable and flexible. Feel free to stop by Mya's thread or pm me if you have any questions or need anything.
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Old 06-28-2009, 01:41 PM   #4
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Thank you. I have read through Mya's thread and have been praying for your little darling. She is just adorable. I hope your time in July is fantastic. I will keep checking in on your thread. How do I find all the Wish Trippers threads?
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Old 06-28-2009, 01:57 PM   #5
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Hello!!

I can answer the Wish Trippers question...

Click on the BLUE link in my siggie... It will take you to the Wish Trippers thread...and first check post 2 and follow the hints for new DISboarders.

Then...if you have a LOT of time!...you can check out some of the Trip Reports from Wish Families on post 1.
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Old 06-28-2009, 02:04 PM   #6
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I answered the question first and then read your story.

Wow...I just have a huge heart for you guys that adopt special needs kids. I can't imagine anyone living their childhood in a nursing home. Makes me want to buy a huge house and bring them all home to live with me. I digress.


It sounds like Deyki (how do you pronounce that? DEE-key?) has had his share of very difficult times. I am so glad that you guys are going to be able to go to Disney!

I do think they will be able to work it out so that you guys are able to go in October. They seem to be moving very fast on your paperwork so far.

I am not sure what state you are in...but we have had families from across the country and Canada and I think most were able to be granted a wish fairly quickly. October is a great time to go to Disney. Anytime is a great time to go to Disney, really!
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Old 06-28-2009, 02:22 PM   #7
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Thanks Maroo. I did find that link in your sig and read LOTS yesterday. I didn't know if there was a seperate category or just threads within categories. I love reading the stories of the wish families. They make me so eager to go and enjoy time without the hospital and daily concerns.

We pronounce his name "day-key". We are in IL. I saw another family or two from IL on here.

It's funny that you mention getting a big house and getting the kids out of nursing homes. It's not too far off from what happened to us! I had a small two bedroom condo with the three children I have adopted, but I wanted to care for more children. Amazingly, the agency I am with had a big 4 bedroom Victorian with a large yard right in the city that they were able to give me. I moved in two years ago and have cared for lots of children for short terms since then. The baby I have now is our 53rd child - including the three I adopted. It's been a wonderful time - never a dull moment!

And to think that when I started the foster care journey, I didn't think I could handle special needs. I didn't think I would adopt either for that matter. Life is full of surprises!
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Follow Deyki's Wish Trip here:
http://www.disboards.com/showthread.php?p=32472981
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Old 06-28-2009, 02:49 PM   #8
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My first attempt at posting a pic of my wonderful children.


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Mom of three (maybe four?) awesome kids!
"Lilo" (almost 11)
"Boo" (7)
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Follow Deyki's Wish Trip here:
http://www.disboards.com/showthread.php?p=32472981
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Old 06-28-2009, 06:24 PM   #9
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Welcome!!! Your children are precious. I really liked your pictures
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Old 06-28-2009, 08:13 PM   #10
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Hi! I was an Angel (volunteer) at Give Kids the World and a Cast Member at Disney. I currently volunteer with MAW. You state that your trip is through them. If you are a single parent MAW should pay for another adult to go. At least, our chapter does. I would definitely ask so that you can take Michelle.

One thing I witnessed over and over again as a Cast Member was the healing power of Disney. So many kids with special needs will have breakthroughs there- it is its own kind of therapy. She may not remember, but if she is going to be your forever child, I think that in the future she will love looking at pictures of this special time.

As for your dates, I don't think coordinating for Deyki's birthday would be much of a problem. I'm assuming he's not considered terminal so there would be no rush on his dates. The only snafu might be if Give Kids the World is already booked up, but because so many kids are school aged I can't imagine October being much of an issue. Hopefully he'll be able to go on his birthday!
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Old 06-28-2009, 09:26 PM   #11
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Yeah, somebody else from Illinois!!!!!!

We are from the Round Lake area just west of Gurnee.

Working currently with the Illinois Chapter of MaW, feel free to ask any questions. I found that getting accepted and meeting the Wish cordinator's happened very first. (With in two weeks) but then we ended up waiting for almost three months to get out dates. Now that being said, I think they look at every case seperatly and try to fit the needs of the families. Though my son has CF, he is doing real good and there is no real rush to get down there.

I am also a single parent, and they will definatly let you bring another adult. Trust me, I only have three and I don't think I would have my sanity in tact when I returned from Florida.

Can't wait to hear more!!!!!
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Old 06-28-2009, 09:34 PM   #12
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Your children are gorgeous!!!! Can't wait to hear what MAW says!!!!! You guys are going to have a blast. We just came back from our first trip last month. I just wanted to say that we have 4 kids and they range in age from 5 to 12.I know you said you were not sure if you were going to take your 1 yr old. I don't have a 1 yr old, but I can say that our big age gaps were not a problem at all. My 12 yr old was more than happy to stand in lines for the Princesses for his little sisters and my 5 yr old little girl was more than happy to watch Lights Motor Action for her big brother. We were in Disney and we were all Happy there together and all was well.

Can't wait to hear more about the trip. And keep the pics coming, the kids are too cute.
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Old 06-28-2009, 10:14 PM   #13
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Here is a picture that just captures Deyki's personality.
Hmm. That didn't work. Let me try again.


Okay. Can anyone tell me why the same pic would keep coming up instead of the new oone from my photobucket? I am new to all this.
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Follow Deyki's Wish Trip here:
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Last edited by MomTo4+more; 06-28-2009 at 10:20 PM. Reason: posted the wrong pic
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Old 06-29-2009, 08:51 AM   #14
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Welcome!

The picture you posted is beautiful! Great shot! Congratulations to Deyki! ( may have misspelled his name, but I can't see it right now)

Your question about bringing your 1 year old.....I brought our 2 year old and sadly she spent most of her time waiting around while the 2 older ones were hopping on rides. On most of the rides, we had to take turns going on them, as one of us would stay with the 2 year old. It was a pain, but, like you said, you don't want to leave without her either! Go with your gut on this one. It's a tough decision!

I hope you get the October dates that you want!
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Old 06-29-2009, 05:30 PM   #15
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We just got a call from Make-A-Wish! The doctor sent the forms back and now we just wait for his initial visit with the wish granters! Tthe kids (and I) are very happy and excited.

I will try again now to post another pic. Let's see how that goes.
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"Boo" (7)
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Follow Deyki's Wish Trip here:
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