Our Mickey Wish Trip - MAW/Disney Cruise 10/29 - 11/5

[torge29]

Oh My Gosh. This is happening so fast!!

On July 18 we met with Marty and Linda, DD's wish team. Already on July 26, we found out the the wish has been approved and the suggested dates look like they can happen. OH MY GOSH!!

I just can't believe any of it.

DD wants to meet Mickey and swim with dolphins so we've opted for the cruise instead of WDW.

DD is SUPER EXCITED as is the rest of the family.

I really can't believe it.

Passports are the first order of business.



OH MY GOSH!!

 

[torge29]

So now that the kids are up to bed, more about Alissa and the family.

We are

Me - 42 - FT Mom and PT accounting professional happily married for 22 years to DH - 44 - Hard working, loving, laid back husband
DS - 17 - Typical teenager who doesn't like his parents at the moment
DD - 7 - Spoiled daddy's girl - our bonus baby;

DD - 13 - Our fabulous "wish kid"

DH and I married when we were just babies
We were pregnant at the time but at 32 weeks I gave birth to a stillborn boy.

Five years later and having gotten a chance to play house for enough time, DS was born. Things were perfect!

Three years later, Hurray the sonogram shows it's a girl.

DD was a typical pregnancy until the moment she was born. Obviously there was an issue as she was wisked away to NICU before we even saw her. Lots of testing yields "Unknown Dysmorphic Syndrome" with no real answers. Three weeks in NICU shows PDA, VSD, enlarged kidneys, possibly blind, low muscle tone, and everyone thinks she is odd looking except for Mom and Dad, who obviously think she is spectacular but are not sure how in the world we are going to deal with all of this.

Through the last 13 years the diagnoses continue but DD is the HAPPIEST child that I have ever met. Three to four times a week at bedtime she tells us "Today was the best day EVER!" When we started this journey I couldn't fathom how I/We would do it. We weren't prepared to do this but in hindsight who is?!? and I wouldn't change any of it. DD is the light of our lives!

Her medical diagnosis currently:

Unknown dysmorphic syndrome;
Mental retardation;
Benign rolandic epilepsy
Cervical spinal stenosis;
Aqueductal stenosis;
Congenital Heart Defects - Aortic Regurgitation, PDA, VSD;
High blood pressure - ongoing testing to find the cause
Thrombocytopenia;
Perthes disease of right hip;
Hypotonia;
Chronic ear/sinus infection and reflux;
Endocrynology is currently doing some testing because she hasn;t grown in 24 months.

She has an extreme love of life and all those around her. She is a big hugger and doesn't believe in strangers because "once you say Hi, you've made a friend".

I am so excited to start planning and will look to the board for all my answers. There is such a wealth of information here.

Thanks.

 

[katieb4]

Welcome to the Dis!

and WOWZER, thats quite a list for one little girl!!

We'll miss you on trips as you will be coming a week or so after we leave. Bumemr!

Have fun planning!!

 

[torge29]

The good news or the bad

The bad news - after 13 years of having an obscure diagnosis, on Friday we found out that DD has a chromosomal abnormality - #9 deletion.
When she was born we were followed by genetics for over two years, they did all the requisite testing but weren't able to find any definite issues with the testing and the Dr. recommended that we no longer needed to be followed because we were already being followed by so many specialists. Low and behold, what progress medicine makes. The testing has gotten better and so we have this new diagnosis. About every three years on top of all the other things that were diagnosed in her first three years, we get a new diagnosis. When she was seven it was epilepsy that is well controlled by meds. When she was ten she started limping and complaining of hip pain on a Friday morning. Incredibly, that evening we had her in the ER because she could no longer bear weight on her hip. By the end of the week she was diagnosed with Perthes Disease and using a wheelchair. Perthes is a degenerative bone disease of the hips. DD's is in her right hip. The perthes has been the hardest thing for her to deal with because she was always a pretty activity kid despite her developmental disabilities. Perthes is rare in girls and even more rare that it started when she was ten. We are still using the wheelchair for long distances (school, shopping, parks, etc) and we have a chair lift installed in our two story farmhouse because she can't climb stairs. That is one of the reasons we chose the cruise over Disney, less time in the chair.
So now Chromosome 9 Deletion Syndrome is another three year diagnosis. More specialists and more testing.

I have been researching this all weekend and looking for info on the net so the cruise took a back seat but we got and email that the dates look good in addition to probable Dolphin Swim in the Grand Caymans.

I hope to post some pics soon of my smiling, darling Wisher.

 

[torge29]

Our wish granters emailed today and our dates are good!! DD called everyone I would let her, to let them know "We are booked for our cruise".
We have a reservation and instructions on how to book excursions. We will be on the Magic from 10/29/11 - 11/5/11.
Flights aren't booked yet as we might try to stay an extra day and maybe spend that day at WDW since we will already be there and don't expect to be back for a loooong time.
WOO HOO!

 

[Happy Dreams1]

Wow, you wish child/teen has gone through a lot! Bless her! I am also a wish child/teen and I'm having my wish granted to go to Disney World soon! In fact, very short notice. You can read my latest updates in My PTR( which is in my signature) on pgs. 3 and 4. I'm very glad things are moving along swiftly. Please keep us updated! Planning, although tiresome, can be very fuN!