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Old 03-09-2009, 03:51 PM   #1
Somer
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Goodbye Hospital Hello Disney!!! October pre-wish trip report

I decided to sign my daugher up for make-a-wish foundation after I met Linda (mom to adorable Lydia and Tobias) through another website. She encouraged me and I'm so glad I did. I signed Jozlynn(4 yrs old) up and the very next morning I got word that her doctor had already approved her! Yesterday the wish granters came to talk to Jozlynn and she opened the door in her princess crown and tutu and said DISNEY WORLD!!!! She made a picture of sleeping beauty wearing a hat made of cheese. She was so excited to show her picture to our new "wish granter" friends. They were great, they brought a little teddy bear holding a baby teddy bear for Jozlynn(she named them "Nanna" and "Spongebob") and they also brought a little gift for our other daughter Arianna(2 yrs old) a little stuffed lamb, she calls it "monkey."

We will end up going to Disney World in October when Jozlynn will be more able to handle the heat. Jozlynn's "Nanna" will also be going. She's always a blast to have around, she dosn't seem like the typical "grandma." She's the singer in a rock/blues band

OK, a little about us. My name is Somer I am 25 years old. I have been married to my best friend Derik (28 yrs old) for almost 9 years now. I know, it sounds like I'm lying about my age, but I'm not I swear. Married VERY young (I was 16 ) but we are very happily married. Derik also happens to be the BEST daddy ever!!

When we found out that we were pregnant we were sooo happy. Then when I was 5 months along we found out that our daughter had such severe heart defects that she would probably never see life outside those hospital walls. They were not expecting her to make it through her first surgery.

To make a long story short(well, kinda) emotionally it was an extremely difficult pregnancy.I ended up staying at the Ronald McDonald House about 3 hours from home for about a month before Jozlynn was born.

Jozlynn was born with rare congenital heart defects, Hypoplastic Right Heart Syndrome (HRHS, half a heart) Pulmonary Atresia with Intact Ventricular Septum (PAIVS, Pulmonary Valve completely closed). This situation cannot support life, since oxygen-poor (blue) blood cannot meet the body's demands, Tricuspid Stenosis (Tricuspid Valve not working properly), Pulmonary Artery Stenosis (exremely narrowed Pulmonary Arteries), PFO (Patent Forman Ovale), ASD (Atrial Septal Defect) ,and Congestive Heart Failure. These defects are among the most complex and rare congenital heart problems know.

On her second day of life she had her first Open Heart Surgery. It was supposed to be a 3 hour surgery, and it ended up being 9 1/2 hours. They couldn't get the shunt to work, it kept clotting. Her vitals crashed two times then they thought that they finally fixed her so they closed her chest up and her vitals crashed again. So they immediately had to reopen her little chest and stabilize her heart. The surgeon came to talk to us and told us that he could only attempt it one more time, needless to say for the next couple of hours we were just in one constant prayer. There were a lot of tears, but in that moment was when we really felt the most calm. We had spent most of the day before just telling her all about how much we loved her, and all about our wonderful God who had helped us out to this point. We knew that if Jozlynn's little heart just wasn't strong enough, we at least had the opportunity to give her all of our love and tell her that she has already changed our lives for the better. We have a strong faith in knowing that we would be together again someday.

Meanwhile, Dr.Starr had tried to do the shunt one more time and she crashed again. It seemed like that was the end, but once they got her stable again her surgeon was able to talk the rest of the team into trying to put a larger shunt than they have ever used on a baby and it worked!! "Jozlynn is still with us, she made it through," those words from Lesley, the nurse who gave us updates every hour, still echo through my mind down to this day. She recovered nicely from her surgery, it just took her a little longer because of an infection in her incision. We had to keep her secluded at home until she was 3 months old. She wasn't gaining weight, and she looked so weak. Looking back I felt like I should have realized that the darkness around her eyes was so prominent and she never really even made any noise, she was just too weak.

Her second surgery became an emergency when she was 5 months after the pressure in her heart became dangerously high and she was having congestive heart failure. All went well, and we were glad to know that she didn't develop any tumors from the high pressure. After that, our little Jozlynn finally started thriving, although her weight was still under the 6th percentile. Less than a month later she had another heart surgery when she was 12 months. And then for the most recent open-heart she had to have injections every day for a few months to build up her red blood count and hopefully make her stronger. Mommy and daddy had to learn to give the shots, and although she dreaded them, she never complained. She even said "thank you daddy" after every one. Then she had her fourth open heart surgery just a few weeks before she turned 3 years old. (she also has had numorous caths and another surgery on her eyes)

Unfortunately, only a couple of weeks before her 4th open heart surgery, we had a housefire that took everything we owned including all of Jozlynn's toys and her beloved blankie. It started from an elecrtrical problem in the shed and VERY quickly spread to the house. I still can't belive how quickly it all went up, thankfully we all escaped with our lives. Although we had no renters insurance, we have the best friends and family in the world that were able to step up and help us any way they could. Also, we were on several different Seattle news channels and people from all over Washington donated enough for us to get back on our feet. We are extremely grateful for everyone's help.

Surgery day came and it went smoothly. The first time we went in to see her after surgery, she looked a little different from other times. Her hands and feet were warm, but the were purple. They had no idea why. They thought that her little body didn't handle being on the heart and lung machine. She was still not able to breath on her own. All we could do was wait and see if she would pull through. After a long couple of days of not knowing, she was finally stable enough to breath and her color got better.

The older she gets, the harder it is to watch her have to go through such a traumatic surgery. We are glad to say that Jozlynn is now a very happy, active little girl. She can light up a room and capture everyone's attention by her amazing, sweet personality. She loves to go swimming and go to preschool. She can just about keep up with all of the other kids. In fact, most people can't even tell there was ever anything wrong with her unless they see her scars. She also has such a great compassion for other people, especially when they are hurt. I guess she knows what it's like.

We are waiting to find out if she will need a heart transplant. We know eventually she will, but we are hoping to get through her childhood first. We are unsure how many more surgeries she will have. For now we are thankful for every moment we have with our little miracle.
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and Ariana,6 Heart Healthy!

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Old 03-09-2009, 04:39 PM   #2
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WOW, that last post was really LONG. I guess I could have just said my daughter has had 4 open heart surgeries. I'm usually alot more to the point. Maybe I just had too much coffee this morning.

Anyways, here are some pics

Jozlynn right before first surgery
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Old 03-09-2009, 05:04 PM   #3
Somer
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Here is one of her after surgery if you want to see. It's a little too graphic to just post, so here's the link http://i714.photobucket.com/albums/w...l/SCAN0010.jpg


playing with her wires


Sometime in between surgeries

These are her "sunshine days"




Our other little princess Ariana

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MAW pre-trip report Goodbye Hospital Hello Disney!!! MAW video http://vimeo.com/7210389

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and Ariana,6 Heart Healthy!

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Old 03-09-2009, 05:53 PM   #4
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Aww, your daughter is so beautiful, you sure have been through alot.
Can't wait to hear all about your plans for your awesome wish trip.
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Old 03-09-2009, 06:12 PM   #5
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Oh my gosh, your girls are absolutely gorgeous! Have an awesome amazing trip!!
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Old 03-09-2009, 06:43 PM   #6
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First of all...

Woo Hoo on the Wish Trip! Sounds like you guys deserve it!

I will put a link to it on the first page of the Wish Trippers Thread!

Do you have dates? Are you staying at GKTW? Do you know how many nights you guys will be staying?

Married at 16! Wow. Sounds like you knew exactly what you were doing! Many people that get married at 26 don't make it 9 years...especially going through all that you guys went through.

Sounds like you have faith that has taken you through.

Jozlynn is so cute! I love the fact that she met her wish granters at the door all dressed up telling them she wanted to go to Disney World! That is awesome.

Great job on your pre-trip report! Perfect pictures! Love it all! Can't wait to read all about your planning and trip!
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Old 03-09-2009, 07:44 PM   #7
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Wow- your little girl sounds like she has been through so much! What a good role model....children like her are so heroic to me, they go through so much yet complain so little and are so satisfied to just have the smallest thing. I am looking forward to your progress in trip planning!!
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Old 03-10-2009, 02:45 AM   #8
Somer
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Thank you guys so much for all the compliments about my girls. I think they are beautiful too, and their fun personalities are the best!

We don't have any dates yet, but they said that we will probably be staying for 7 days, 2 of which are travel days. We will be staying at GKTW. I am just so excited because we haven't even had a vacation since Jozlynn was born. We have always saved ALL of our vacation time for hospital stays. I can't even believe that we have so much good to look forward to now!!

I know Oct is a long wait, but it should give us plenty of time to prepare since none of us have ever been to Disney World. My first order of business will be to find out about the different parks and figure out which ones we would like to go to. Also, MAW said that if we know of anything else we want to do in the area, they will make arrangements.

So, here I go off to research Disney parks....
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MAW pre-trip report Goodbye Hospital Hello Disney!!! MAW video http://vimeo.com/7210389

Mommy to Jozlynn,8 HRHS,PAIVS,TS,PAS,PFO,ASD(heart defects) www.littlezippers.com
and Ariana,6 Heart Healthy!

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Old 03-10-2009, 08:29 AM   #9
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Quote:
Originally Posted by Somer View Post
Thank you guys so much for all the compliments about my girls. I think they are beautiful too, and their fun personalities are the best!

We don't have any dates yet, but they said that we will probably be staying for 7 days, 2 of which are travel days. We will be staying at GKTW. I am just so excited because we haven't even had a vacation since Jozlynn was born. We have always saved ALL of our vacation time for hospital stays. I can't even believe that we have so much good to look forward to now!!

I know Oct is a long wait, but it should give us plenty of time to prepare since none of us have ever been to Disney World. My first order of business will be to find out about the different parks and figure out which ones we would like to go to. Also, MAW said that if we know of anything else we want to do in the area, they will make arrangements.

So, here I go off to research Disney parks....
That is awesome! That gives you 5 good park days, which is great!

You will have so much fun!

Some suggestions for things that MAW could "make arrangements for" (i.e. - they will pay for it! ) would be: BBB makeover complete with costume (this was over $200 for the full deal for Lauren), Some sort of Princess lunch or breakfast (can be pricey) - she could go to the breakfast or lunch after she gets all made up!


For planning purposes...since you have some time...
I would highly recommend the book "Passporters Open Mouse" ...you can buy it here - it has all of the parks and rides explained with hints for people traveling with any type of special needs:

http://www.passporter.com/wdw/specialneeds/

I got one shipped and all for 20 something dollars, I think...I used some coupon code that is on the website and in a newsletter that they send out (you can sign up for it online).


You are going to have a blast!!!!!
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Old 03-20-2009, 01:29 PM   #10
Somer
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Hi everyone, sorry I havn't posted in a while. Last weekend was GREAT, both our girls went to a slumber party and my DH and I had our first night alone in 5 years!!!!! We are still on cloud 9. Tomorrow we are going to see pixar's Aliens and Monsters at Imax through the Starlight Foundation, should be FUN. Jozlynn has had a migraine for the past 3 days though(not unusual due to her PFO hole in her heart), so I hope she feels better.

OK, here are some things that we want to do....
BBB, definitely Jozlynn would LOVE that
and of course, Breakfast or Lunch w/princess
....Thanks Maroo
also, Pirates Dinner Adventure
and maybe Cirque Du Soleil(circus at DisneyWorld Resort)

I don't think we will be going to Epcot because it probably won't be very exciting for a 2 and 4 year old(actually they will be turning 3 and 5 on Sept.19). I know the food and wine festival will be going on, and Derik makes wine, but he said he doesn't want to go for fear that we will be wasting a lot of time and energy on something that the kids will not enjoy.

I hope we get dates soon, but I'll try not to obsess over it

Oh, one more thing that I just have to mention. We met a lady who was very nice and we told her that Jozlynn was going to have her wish granted in Oct. and she handed us $300 and said "Make Great Memories"!!!!!!!!!!!!!! I told her that I couldn't accept that and she assured us that her and her husband donate $25,000 a year in different charities. What a blessing for our family, what amazing thoughtfulness and generosity. I am writing her a thank you letter right now.
Believe it or not, a couple of days later, my husband met someone who gave him $100 for Jozlynn to enjoy on our trip.
We both agree now that maybe we shouldn't mention it anymore(I feel kinda guilty taking money), even though it is such a wonderful thing to see how much people care!!!
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MAW pre-trip report Goodbye Hospital Hello Disney!!! MAW video http://vimeo.com/7210389

Mommy to Jozlynn,8 HRHS,PAIVS,TS,PAS,PFO,ASD(heart defects) www.littlezippers.com
and Ariana,6 Heart Healthy!

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Old 03-20-2009, 02:02 PM   #11
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We had a couple of people on our trip give Lauren money. I say...SPEND IT! They obviously have it if they are giving it away!

If you get lots, you can always make a donation to GKTW in her honor. I think they still "sell" bricks (they are actually walking stones) that are on the ground at GKTW, they pave the roads...and I think you can even order one before you go and then she can see it when she is there! That would be cool!

One thought on Pirates Dinner Adventure. (Ok, several thoughts...well, LOTS of thoughts...I know, I talk to much.) I reamed them in my TR. I feel kinda bad about that now, as it was hopefully an isolated incident and won't affect you guys because your child is ambulatory...but...anyway. We went (long story) and Lauren and I had to leave; but Rick, Lisa and William enjoyed it (although not as much as Disney and we would never pay full price for it). You can't do it the first 2 nights you are there because GKTW has to request tickets...so it will have to be night 3 or later. We really wanted to go our first night, but it was not possible.

Also...make sure you pay for the upgrade (maybe you can use some of that cash!) It really makes a difference (for about $10 per person) in the show. They "pick" the kids that have the upgrade to participate in the show, you get to sit closer to the show and you get a souvie. The show staff don't really "get" Wish Kids...they don't really understand it...it's not like Disney where they see the button and know about the trip...so you will have to pay for the upgrade to get special treatment for her, if that makes sense. If you paid regular price, she could end up in the back and not get to participate in the show by going up...what a bummer that would be on a wish trip!

It is also sort of in a not so good area of town. I remember being a little uncomfortable when I got lost taking Lauren back to our hotel (we stayed in Disney, GKTW was full). So bring good directions and a real map just in case. It wasn't a BAD area...just not Disney...if that makes sense.

I am really not trying to discourage you from going to the Pirate Show. The food was good. The show was good, too! We just had a bad experience.



Cirque de Soleil, though...MUST SEE, if you can afford the tickets. Gosh, we are finding lots of uses for that cash!

You are going to have a great trip. And now I will be quiet!
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Old 03-20-2009, 04:06 PM   #12
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Hello! Sounds like you have lots of exciting planning done already! we went on our son mark's Wish Trip in November and had a wonderful time. (Ahem...don't go looking for that Trip report, I'm embarrassed to admit that it isn't written yet!)

Our boys are twins, age 10, so our WDW is quite a bit different than yours. I will just provide one bit of input. I agree with Maroo that Cirque de Soleil is fabulous - we went during our first WDW family trip 2 years ago. It's definitely designed to be family friendly - shorter, faster paced etc. However, I did feel that at age 8 (their age at time of trip), the boys were really ready to appreciate it. I am sure that younger children can enjoy the show, but the tickets aren't cheap, and I think your children might be a wee bit young. Maybe others can give their advice - anyone have younger kids who have experienced Cirque?

We look forward to hearing more!

Alison
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Sorry, there is just a Pre-Trip Report for Mark's Starlight Wish Trip:
November 2008: http://www.disboards.com/showthread.php?t=1883215
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Old 04-01-2009, 02:05 PM   #13
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Hi! I'm a fellow Heart Mom to an HRHS baby as well! It's a pleasure to "meet" you. My daughter Olivia is also four and post Fontan (I'm assuming one of the heart surgeries was the Fontan since you had the shunt as well?)

I'm subscribing so I can follow along on your journey!
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Old 04-01-2009, 02:19 PM   #14
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So glad to see your PTR. I just saw your post on the Wish Tripper's thread. I hope that little Jozlynn feels better soon. Glad you are all out of the hospital for now. I am looking forward to reading more of your PTR. October will be a great time to go. Don't forget the MMNSSHP (or something close to that). You will need special tickets for the Halloween party after hours (and most wish agencies don't buy them for you.)
~Elisa
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Old 04-02-2009, 06:44 AM   #15
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Hi,

I am also a fellow Heart Mom my daughter was born Transposition of the Great Vessels. She is 8 years old. We signed up for her MAW last fall, at that time she was in good health. We weren't sure if she would qualify and were somewhat guilty thinking that she wasn't deserving it. Since then in December we found out that she wasn't as healthy as we thought. She is having moderate impairment in her left ventricle.

So now we think she is deserving since her condition is more serious then when we signed her up.

I look forward to reading more and if there is anything I can help you with after we take our trip let me know. Have fun making your plans. Your girls are so precious and hope they stay healthy.

Diane
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