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Old 02-17-2013, 12:57 PM   #1
SixUnderSix
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Talking Baby Jake's MAW trip 2013

Hey everyone, I'm so excited to be here. I'm Melissa, and I'm 32 years old and married to Eric, age 37. We got a call on Friday from MAW that our little man was going to be granted a wish and we are so excited for him.

Jake was born to a 15 year old girl who abused drugs and didn't receive prenatal care. When he was born he had HLHS (Hypoplastic Left Heart Syndrome), a terminal condition that only has three treatment options: 1. Transplant 2. A series of three operations to help extend their lives 3. Comfort care until the child passes away.

His biological family chose the route of the three surgeries; however, Jake was in foster care from birth because of the drug exposure and lack of ability by his family to care for him. He went home at two months old to the most awesome foster family ever (they are now his GodParents); however, they were an emergency foster home and an older couple who couldn't adopt.

When Jake was 11 months old, we (we are a foster family that was open to adoption) got the call to see if we'd like to adopt this sweet angel. We said yes in a heartbeat. Jake moved in 8 days before his 1st birthday and 8 months later, our adoption was official.

Meanwhile, Jake's condition was deteriorating - he's been hospitalized more times than we can count. He can't walk or crawl (he's wheelchair bound), and he's on a feeding tube. We got the news 2 months after his adoption, that there was nothing left for the doctors to do and to just enjoy the time we had left - they guessed we'd have about 6 months before deterioration and ultimately, the end of his life.

We traveled to two different states for different opinions and we finally found a surgeon that was willing to attempt the third surgery (it is scheduled for the end of cold/flu season this year - probably late April) but the likelihood of success isn't great, although we are MORE than hopeful.

Jake is now 2 1/2 and we are soooo excited to get to experience this with him. He loves Mickey Mouse, Cars, Buzz Lightyear, etc. so this is going to be the highlight of his life.

We have some unique challenges in planning for our trip as we have 6 total children. Join me in meeting the children:

Nikki, age 8, and is just a total princess who loves her baby brother more than life.

Mikey, age 7, and is obsessed with pirates...lol. I can't wait for him to go see Jack Sparrow.

Christopher, age 5, who LOVES Buzz - he's Jake's closest buddy.

Jake, of course, age 2 1/2 currently (3 in July).

Princess Cocoa Puff is our foster daughter (not allowed to use their real names online) is 17 months old and:

Princess Cocoa Pebbles is our other foster daughter (Princess Cocoa Puff's baby sister - they are 10 months apart) is 7 months old.

We don't have any dates yet, we are waiting for our volunteer team to come out so Jake can make his official wish (even though he doesn't speak but he can sign a bit) but because of the dynamics of our family and the special needs that Jake has, I am doing as much planning and research as possible.

I can't wait to learn all I can from everyone. We've been to Disney before but not with our little man and all his equipment.

Hope to get to know many of you and learn from your experiences. The kids are SOOOO excited and we are excited for him to have the opportunity for the trip of a lifetime!!!

We aren't allowed to post pictures of our foster daughters but here's a pic of Jake and his siblings and then one with me and the our sweet baby boy. Join us as we prepare to take this trip from start to finish - can't wait to follow along on your trips as well!!!





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Old 02-17-2013, 01:25 PM   #2
Jakentysmom
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What a great story!! So glad baby Jake has you guys as a family. Your kids are beautiful. Your family sounds like my best friends family. She did foster care for a while and ended up adopting 4 kids from foster care. All have special needs of some sort. I would love to do foster care for kids with special needs. I hope you guys get contacted soon!! It took us a month for the wish granters to call and meet with us. But it could happen any time.
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Old 02-17-2013, 01:35 PM   #3
SixUnderSix
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Quote:
Originally Posted by Jakentysmom View Post
What a great story!! So glad baby Jake has you guys as a family. Your kids are beautiful. Your family sounds like my best friends family. She did foster care for a while and ended up adopting 4 kids from foster care. All have special needs of some sort. I would love to do foster care for kids with special needs. I hope you guys get contacted soon!! It took us a month for the wish granters to call and meet with us. But it could happen any time.
Thanks - all of our foster children have had special needs (or just about all of them). Our two youngest right now have Fetal Alcohol Syndrome and are very delayed. We've had 28 kids and have been open to adopting any of them but all but Jake have gone back home or to a family member willing to raise them. We've been so blessed by all of our kiddos - it's definitely a hard emotional road but I recommend it to anyone who has the heart for it. They said it would take 2-4 weeks for us to be assigned our volunteers to come out to the home - they have completed all the medical paperwork already on their end...so I have to get paperwork together on our end and just wait for the call for them to come meet our crazy family ;-)
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Nikki (age 9)
Mikey (age 8)
Christopher (age 6)
Previous Wish kid, Jake (age 3 1/2)
Samuel (age 3 1/2):
"Charming" - foster son (13 months)
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Old 02-18-2013, 12:59 AM   #4
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Welcome!! I am so glad that Jake will be getting his wish! I am a heart momma too. My heart kiddo has Pulmonary Atresia W/IVS. Praying the Fontan will be a success! What hospital are you using?

Jackie
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Old 02-18-2013, 01:45 AM   #5
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What a cutie!
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Old 02-18-2013, 02:11 PM   #6
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Cute kids Wonderful that baby Jake is getting a wish. So glad you found a surgeon willing to do the surgery. Praying it's successful
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Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
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Old 02-18-2013, 10:27 PM   #7
Sorcerer Jody
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Your little boy is adorable - I am so glad he is getting a special wish! I am a foster mom too - I have fostered babies and toddlers with special needs for almost 8 years now. I have adopted one and am hoping to adopt another. I hope you have fun planning!
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Old 02-19-2013, 09:42 PM   #8
SixUnderSix
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Quote:
Originally Posted by Lilfoot93 View Post
Welcome!! I am so glad that Jake will be getting his wish! I am a heart momma too. My heart kiddo has Pulmonary Atresia W/IVS. Praying the Fontan will be a success! What hospital are you using?

Jackie
I love meeting other heart mamas! The one we found willing to attempt the Fontan is St. Louis Children's Hospital. Children's Medical Center in Dallas was willing to consider transplantation but we couldn't get insurance to cover us there and after paying $8000 out of pocket (that we had to fundraise and fundraise for) we wound up having to pursue care in St. Louis since our insurance WOULD cover us there.....ugh.

The concern is a very unstable tricuspid valve that they're not sure they can repair during the Fontan. If they can't repair while in there, they may have to cancel the Fontan altogether. He's not a candidate for an artificial because of 1.) the shape of his heart 2.) He doesn't walk and therefore doesn't return blood flow from his legs well and they feel it would be too great a strain on anything but a natural valve - UGH again.

I hope your little one is doing well - it's a crazy ride but he is the light of our lives!!!
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Nikki (age 9)
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Previous Wish kid, Jake (age 3 1/2)
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Old 02-19-2013, 09:44 PM   #9
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Originally Posted by Sorcerer Jody View Post
Your little boy is adorable - I am so glad he is getting a special wish! I am a foster mom too - I have fostered babies and toddlers with special needs for almost 8 years now. I have adopted one and am hoping to adopt another. I hope you have fun planning!
Thanks - we've been trying to adopt from child #1 and Jake was #26 (our state is very pro-reunification which is great but hard on us at the same time).

We love fostering and it LOOKS like we may get to adopt the younger sister (older sister is likely going to Dad - they have different ones)....we are just waiting to see if Princess Cocoa Pebble's Dad winds up coming forward to parent as well .....

Good luck on your next adoption - I'd love to be updated now and again ;-)
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Melissa - stay at home mom to 6 amazing kiddos:

Nikki (age 9)
Mikey (age 8)
Christopher (age 6)
Previous Wish kid, Jake (age 3 1/2)
Samuel (age 3 1/2):
"Charming" - foster son (13 months)
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Old 02-19-2013, 09:46 PM   #10
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Originally Posted by angel's momma View Post
Cute kids Wonderful that baby Jake is getting a wish. So glad you found a surgeon willing to do the surgery. Praying it's successful
Thanks so much, mama - hugs to you and your wish child too :-)
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Melissa - stay at home mom to 6 amazing kiddos:

Nikki (age 9)
Mikey (age 8)
Christopher (age 6)
Previous Wish kid, Jake (age 3 1/2)
Samuel (age 3 1/2):
"Charming" - foster son (13 months)
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Old 02-19-2013, 10:46 PM   #11
angel's momma
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Thanks Melissa

Sorry you had insurance craziness to go through. Hope it works out for you to adopt Princess Cocoa Pebble
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Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
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Old 02-19-2013, 11:29 PM   #12
Sorcerer Jody
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Quote:
Originally Posted by SixUnderSix View Post
Thanks - we've been trying to adopt from child #1 and Jake was #26 (our state is very pro-reunification which is great but hard on us at the same time).

We love fostering and it LOOKS like we may get to adopt the younger sister (older sister is likely going to Dad - they have different ones)....we are just waiting to see if Princess Cocoa Pebble's Dad winds up coming forward to parent as well .....

Good luck on your next adoption - I'd love to be updated now and again ;-)
Wow - that must have been really hard to wait until child #26!! I have had 6 placements - and then several more emergency, very short-term placements - in 8 years, and it breaks my heart every time one leaves, even though I know it will happen. My current little one is four years old and has been with me since birth, and he has still not been transferred to the adoption team. It is hard to wait, and it will continue to be hard until, hopefully one day, the adoption is finalized. I hope your second adoption works out, too! Do your foster daughters get to come on the trip with you?
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Old 02-20-2013, 08:37 PM   #13
NEmel
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So glad little Jake is getting a wish! He is so adorable!!! I love his smile!!! I'm sure all your kiddos will have an awesome time. Can't wait to hear more about his wish!
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Old 02-22-2013, 09:56 AM   #14
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Congratulations on Jakes wish !! My wish chikd is Jayden .. he got his wish last April and it was amazing. Jayden is also a heart kid. He was born with Tetralogy of Fallot and has an ID twin brother (no health issues).
Looking forward to hearing all about your plans !
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Old 03-06-2013, 01:05 PM   #15
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Update....sort of

Well, so much has been happening here that I've scarcely had a free moment. SOOO here's a brief update. My husband's adoptive mom passed away (biologically she was his grandmother). So we all drove down to Texas to say goodbye. The day we buried her, we found out that our older foster daughter (age 17 months - Princess Cocoa Puff) was ordered to return home to her dad. We got back into town last Tuesday and said goodbye to her on Friday.

It's been SUPER hard on Jake. He was only with us for a little while before Princess Cocoa Puff came to us (she was a newborn). He'd never seen any foster children leave before and he really just doesn't understand what's going on. We spoke with a therapist yesterday who gave us some decent tips for helping Jake cope.

Princess Cocoa Pebbles is still here (they have different dads) so at least Jake still one of his baby playmates. We all miss her so so so much.

NOW, onto the good news. We got a call last Sunday from our Wish coordinator. I've only spoken to one of the two ladies but she seemed very very nice. They're taking us all out for ice cream on Sunday so Jake can make his official wish!!! We are so excited :-) He can't speak so we've kind of made the wish for him based on his interests. They confirmed on the phone that he wanted to go to Disney World :-)

So excited to see what Jake thinks of all of this :-)

Here is the last picture of Jake with his Nana - so bittersweet!

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Nikki (age 9)
Mikey (age 8)
Christopher (age 6)
Previous Wish kid, Jake (age 3 1/2)
Samuel (age 3 1/2):
"Charming" - foster son (13 months)
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