Zoe's Make a Wish Cruise Pre Trip report!!!!

[candicenicole19]

Well to start off with, I am not good with this sort of thing so Please forgive me!

Almost a year ago, I got a phone call from Make A Wish. Seems a Doctor had put Zoe's name in for a wish! I was Happy and Sad at the same time. I was just full of emotion!

A little background info:

Our Cast:

Kris-Is Grumpy for SURE! He is not into the whole Disney thing but is super excited for the Wish Cruise!

Zoe- Wish child 9- Has Biliary Atresia, a liver condition but is doing wonderful currently (Praise God!) But we know at any moment it could change.

Abby- My 6 year old who I will just say is, umm, Unique.... No outgoing..... Hmm no words seem to suit her well.

Olivia- the baby. Well she is 3 but will forever be the baby.

Me- Disney loving, hard core sewing, fun loving Momma to the best kids ever!

We live in Northern Maryland. My husband and I have been married for just over 8 years now. He is not Zoe's Bio Father (More on that later) however she does call him Daddy and she is the only Father she knows.


OKay now back to the Wish!

So the Doctor returned the paper work the same day it was sent to them (According to MAW that is rare) and Our Wish Granters came out for a visit!

Zoe made her first wish, A disney Cruise. She also had to make a back up wish which was to visit Hawaii. Her first wish was Granted! She was ALL SMILES the day we found out her wish was going to be granted!

We were told at first that we woulw not need passports however that changed quickly. We had many bumps in the road to get Zoes! First of all, Her bio fathers name is on her Birth cert. so when I went to get the passports I found out I needed a court order stating I had full custody. Not an Issue, right?? WRONG! I found the paper work, went back to the passport office, it was not signed by a Judge. So, I was told I had to get something signed by her Father saying I can take her out of the country. Kinda hard when I dont know where he is! lol, So in the end, We got the passport just MANY MANY months later!

So now we are playing the waiting game! The wish has been approved, we have our passports in hand and we are waiting a date for our Disney Cruise! We are so excited and Zoe is just beside herself that Make a Wish is going out of their way to Grant her wish! Here is a picture of Zoe with her Wish Granters:

and a few pictures of the kids from our last Disney World Trip in Dec of 08

Me and my Girls <3 (I promise I am not 16 like the picture makes me look!)

Anyway, More to come in a few on Zoes struggle with BA and her story!

 

[candicenicole19]

OKay first a few things about me! lol, I LOVE pictures and I am sure this thread will have TONS of them! Sorry, I am sure you will get sick of seeing my kids! Okay now more on the background and Why Zoe was granted a Wish!

When Zoe was born, I was 17 years old and scared to death. When she was born, I thought she was a perfect 4.8 pound bundle of Joy. 2 days later the reality hit me hard. Something was wrong with my baby girl and the doctors had NO clue what it was!

Zoe was tranfered from the OB section to the Peds section so I was able to stay with her. It was Weeks and weeks of tests, Needles, blood work and even shaving her head once the veins in her tiny arms and feet could not longer provide the blood needed so they had to shave her tiny little head and put in IVs and draw blood from the veins in her head (I swear that is why her hair is SO thick now! lol) Each time they stuck her, it was like getting the needle through my heart and for each tear that she cried, I cried a hundred more. Test after test and nothing came back as being wrong but they knew something was wrong with her.

When Zoe was 6 weeks old, a new Doctor came into the hospital and our lives and saved my Babies life. I owe my Daughters continued good health to several Doctors but he will always hold a special place in my heart. Dr K stated that he thought he knew what was wrong and the most important thing to do is transfer her to a different hospital where they could do a Biopsy of her Liver.

The following day Zoe was discharged from the hospital and saw outside for teh first time in her short 6 week life. We drove to the other hospital that was about 30 minutes away. Upon arriving we were checked in and Zoe was off for her Biopsy.

It only lasted about 2 hours and we had to stay the night. If all goes well, I would be taking my baby girl home for the first time in the morning and I could not be happier! The following morning, while feeding her her first bottle of the day, the Doctor came in and ordered me to stop feeding her and told me that it was confirmed, She had Biliary Atresia (She was born without Bile Ducts in her liver) A short time later she was whisked away for the 6 hour operation that felt like it lasted days!

Zoe came through the operation well. She was so yellow and her eyes were grey. I could not hold her, She could not eat, she could not move, She was give a saddle block so she was unable to move from the chest down. All I could do was hold her tiny hand in mine. By this time she was around 3 1/2 pounds. They opted not to stitch her because she was so tiny and choose to tape the site closed!

After a week in the Peds ICU we were finally able to move to a reg. room in the Peds ward and I was finally able to hold my baby again!

The first year after her operation was rough. Her operation was called the Kasai Procedure. They removed her Gullbladder and connected a portion of her intestions to her liver to allow the bile to drian from her liver. Well, Because of this, the bacteria from her intestions would enter her blood stream and she would get blood infection after blood infection which means a 2 week (At least) hospital stay at a time to treat Via IV meds. THe first year of Zoe's life was basicly spent in the hospital.

After Zoe turned one, Her medical condition seemed to improve greatly! She is almost 10 years old now and has been doing excellent. She is off all of her meds and only visits the transplant Doctor once a year, her GU dr 2 times a year and her peds dr 4 times a year and has blood work done 4 times a year.
We have been more then blessed with Zoe's continued health and know that the Kasai operation that Zoe has is normally just a temp. hold until a donor liver can be found. However, with Zoe, we have been blessed. She has been able to go 10 years almost so far with her own liver and is doing great but we also know that at any minute the reality is, that it could change ans she could go down hill fast. We thank God every day for her health and know that without him watching over her that things could be different. I also know that should the day come that Zoe does need a transplant, even though I am scared to death of that day, I do know that God will be guiding the Doctors had and holdings Zoe's hand as well. She is a strong little girl and a fighter. Zoe faces each day with a s mile on her face and looks for the positive in everything anf everyone.

Because of the exended hospital stay, Zoe has severl other medical conditions. She is behind physically, She has a speech Problem, she is behind emotionly and she has emotional problems as well. It has recently came out that because of these issues, among others, Zoe has been getting picked on in school, so this wish trip will be a great thing for her! We hope that it will help her to regain her sense of self worth and help to improve the way she feels about herself!

Okay that is enough for now! Thank you for allowing me to share our Wish Trip Pre Trip report!

 

[mommy_lisa]

I am glad to hear that Zoe has done well with the kasai only. She looks great. She does not appear to have any jaundice or ascites.
My son Lucas was also diagnosed with Biliary Atresia. He was diagnosed late at 3 1/2 months and went into complete liver failure when he was 6 months old. Luckily I was able to donate part of my liver. He is now 2 years post transplant and has done well so far. His pediatrician referred him to MAW and he was approved. His wish is to go to Disney World. We just found out last week that his disney trip is approved. We are planning on going in October.

 

[mncherokee]

My Zoe is 3... we named her Zoe (life) because in her pre-natal ultrasound she had lung issues and we didn't know if she would make it (she proved the doctors all wrong!)

I also have a daughter (Calista) who is about the same age as your Zoe. I will be very interested to hear about your trip planning as it progresses!