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-   -   Ashley's MAW PTR Cruise May 9th-May 13th, 2010 (http://www.disboards.com/showthread.php?t=2395656)

Mtopher4 02-12-2010 04:23 PM

Ashley's MAW PTR Cruise May 9th-May 13th, 2010
 
Hi,
I'm Lisa, Mom to make a wish kid Ashley age 5 and Jessica her twin sister and Christopher age 8. Last time I was on his board I was gatherig valuable information or our Disney World trip for Sept. 2008.

After trying to concieve for 4 years and using ovulation meds we switched to injectables and got Topher and then tried for number two for a year and then did injectables and IUI's and after 3 misscarriges... Finally I was Pregnant :-) Not just one with Twins :-)

When I was pregnant with my girls I was high risk and had many ultrasounds and not one caught anything.
Ashley was born with Apert Syndrome. You can see her pics at www.apert.org/bock . She just finished her 18th surgery and has more to go.
You can read more about Apert at www.apert.org.
Apert is fairly rare only occurring in 1 in 160,000 to 200,000 births

I'll go back and see how to post pictures. We are now waiting to see what dates we will be going on the cruise..Can't wait .... Would LOVE some tips and advise..
Than you :goodvibes

UGH I just typed Ashley's whole story and the computer lost it :(

Anyway..It was horrible not to be able to enjoy the birth of my twins. Both were born and taken to the NICU..C-section and 35 weeks gestation. My Son had been an emergency C-section (Meconium pneumonia).
Ash actually got to come home with me from the hospital but Jessica had to stay for 11 days. My son stayed for 11 days after his birth too.
I treated Ashley like a doll for the first month of her life, until I met another child with Apert. She had 9 surgeries that year. Jessica stopped breastfeeding because I was away from her too much. Christopher started having huge temper tantrums. My house has been chaos to say the least. With all the therapies, etc...We live in Houston and travel to Dallas for all Dr. appointments and surgeries because that is the place to be when you have Apert.
Ash has:
Sleep apnea..Obstructive and Central, Hydrocephalus, Chiari Malformation, Fused skull sutures at birth, fused fingers and toes, PDA, retruded midface, sub mucosal cleft palate with bifid uvula, constant Sinus infections, Asthma and a severe allergy to gelatin.
She has had 18 surgeries..

Some of these below were combined so to try to limit the number of surgeries she will have in her lifetime.
2 cranial remoldelings, 1 orbital advancement, endoscopic 3rd ventriculostomy, external Ventrical drain, VP Shunt, 3 strabismus surgeries, 2 sets of ear tubes, 2 tonsil removals (Yes they did grow back :(, 6 finger separations with skin grafts, 1st stage toe separartion with skin grafts, sinus surgery.
More surgeries this year will be 2nd stage toe release and RED Midface advancement.
She was very delayed..even more noticeable having a twin sister..not able to hold up her head that first year of life, not sitting up until 18 months, crawling at 20 months, not having any teeth until 24 months, not walking until 3 years old and still isn't potty trained. I feel like I have missed out on so much with my girls. I hate to say it but the first two years of their lives I was in survival mode. I wish I could go back and redo it and enjoy it more :(
Our family is so looking forward to getting away and being able to create some happy memories :-)

Mtopher4 02-12-2010 04:45 PM

Pics
 
http://i2.photobucket.com/albums/y4/...4/100_0090.jpg
Jessica, Christopher ad Ashley Dec. 2009

Mtopher4 02-12-2010 04:54 PM

http://i2.photobucket.com/albums/y4/...Birth003-2.jpg
Ashley at birth
Are thesetoo big? They are 800 x 600?
http://i2.photobucket.com/albums/y4/...0/100_0390.jpg
Testing thumbnail of Child life
http://i2.photobucket.com/albums/y4/...h_100_0336.jpg

Mtopher4 02-12-2010 05:05 PM

Got the thumbnail thing figured out :-)

Mtopher4 02-12-2010 05:10 PM

Test

cmp1111 02-12-2010 10:36 PM

Wow, I'm so glad you're getting to go to WDW. What a lot to deal with. :hug: My twins were born at 32 weeks, so we had a bunch of NICU experience, but thankfully now they are both well.

I'll be looking forward to hearing more plans.

Mtopher4 02-12-2010 10:47 PM

Thank you :-) Glad to hear your twins are doing Well :-)

The suspence (sp?) on waiting for the dates is killing me :-):tinker:

Deb T. 02-12-2010 11:25 PM

Just wanted to pop in and say that I like the full-size photos better than the thumbnails. Your daughters and son are precious! I know you will all have a fabulous time on your MAW cruise! :goodvibes

Mtopher4 02-13-2010 12:32 PM

Thank you Deb :-) I see you have been on several cruises.. Any advise?

Mtopher4 02-13-2010 12:58 PM

Ok I had to post this picture bigger :-) This was taken at Medical City Dallas in the Child Life Dept right before Ashley's surgery in Jan. It's amazing how quikly they learn exactly where all ths real Dr. Stuff goes. Child Life gave her a Dr. kit full of real Dr. stuff that she uses to play Dr. on her bear and dolls.It's so cute. She also has her pulse ox and suction machine she plays with too.
http://i2.photobucket.com/albums/y4/...0/100_0336.jpg
http://i2.photobucket.com/albums/y4/...0/100_0370.jpg waiting for surgery after getting some goofy juice aka versed

Mtopher4 02-14-2010 01:53 PM

:upsidedow
I'm going crazy... waiting..waiting....waiting for them to give me some dates for the cruise to choose from.

I'd like to go before the end of May. Hoping it's not too hot but not too soon because I'd rather it be a little warmer.

pipersmom 02-14-2010 02:15 PM

Hi, Lisa! Not sure why no other wish families have found your PTR, but there are a bunch of us hanging about. :goodvibes: Your girls are very cute (as is your son!), and I can only imagine what you've gone through with Ashley, she's certainly a strong little girl to go through all that (as is her Momma!). I'm excited you're going on a cruise, and hope you'll post a TR when you're done..I tried to talk Piper into a land/cruise combo, and she wasn't having it, lol..it's straight WDW for us, which is great also. Have you checked out the wish trippers thread in the disabilities forum? There are a ton of us over there also. Anywa, keeping my fingers crossed that you get dates soon, and looking forward to following along!

Mtopher4 02-14-2010 02:47 PM

Thank you Amanda. I was actually looking at your MAW PTR the other night when the board closed for two hours for an update :( Your daughter is beautiful. I'm going to ask our local MAW if we can change it to the land and sea option but I have heard they don't offer it here :( I KNow Ashley would love to eat a meal in the castle :-)

pipersmom 02-14-2010 03:36 PM

You're welcome :) I know some chapters offer it and some don't. Maybe you can tack on a night once you get back into port and go? I do know some chapters will let you extend the trip on your own dime and still pay for the return flight, might be something to think about. :goodvibes:

Mtopher4 02-15-2010 05:32 PM

Looking at dates
 
They are looking into dates April 18th, May 9th and May 16th :-) They said their chapter doesn't do the land and sea :( But she is asking about adding a couple of days at our cost.. I'm praying


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