Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Disney Trip Planning Forums > Disney Trip Reports > Pre-Trip Reports and Plans
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS UpdatesDIS email updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read





Reply
 
Thread Tools Rate Thread Display Modes
Old 02-28-2011, 08:58 PM   #1
mommy2girlswv
Mouseketeer
 
mommy2girlswv's Avatar
 
Join Date: Feb 2011
Location: West Virginia
Posts: 433

Oh Toodles!!!

Our family: Myself(April) stay at mom 25, my wonderful husband(Drew) 24, and our two daughters, January 3-wish child, Kaitlyn 8months old(10months time of trip)

The crazy last three years:
January was 8 lbs 3 oz when she was born. The hospital sent her home a few days after birth thinking she was fine.. At 5 days old, we took her to her pediatrician for a newborn check-up. After her exam, her Dr. told us she was going to schedule an appt to see the local cardiologist. Her Dr. told us that she scheduled an appt first thing the next morning (8 am) with the cardiologist. I was worried about what could be wrong with her . Our family told us that it was probably just a heart murmur and told us several names of people in the family that have had one. That helped relieve some of the worry. I told my husband to go ahead and work the day of the appt and that my grandma and mom would go with me. When we went to the appt the first thing they did was a ekg. After many tries with the EKG they told me that it wasn't working right. We went with the Dr. to do the Echo. I will never forget the faces the Dr. was making when she was looking at my daughters heart. I started to cry before she said a word, because I could tell the Dr. couldn't believe what she was looking at. She asked me if I had someone here with me I told her that my grandmother and mom were in the waiting room. She went and got them. When they returned she started to tell us a bunch of info that I don't remember, but the part that she showed us a picture of the heart. She said your daughter doesn't have this part, I don't think she has this part, and your daughter has the worst heart that I have ever saw. She told us that she made some phone calls and that WVU Ruby Memorial (the state children's hospital which was a 3 hour drive) is waiting for us. While we were waiting for the ambulance I called my husband to meet us at the hospital. When we got to Ruby Memorial they took us back to wait for the Drs. to come talk to us (worst wait ever). They came and got us and put us in a huge room with one box of tissues in the middle of the table. It is the most horrible feeling to know something is wrong with your kid and be sat at a table with a box of tissues in front of you. They told us our daughter had DORV, TGA, and VSD. To make a long story short.. She had the PA Band surgery at one week old, Glenn surgery at 5 months and the Fontan at 2yrs old. She now has a single ventricle. She had alot of Dr. appts and before the last surgery her o2 level was never higher than 72 and is now around 94. She was 22lbs for her last surgery and it's been little over a year now and she is 35lbs. Since the last surgery you can really tell it worked. She is still on meds and some days she still looks pale sometimes. To us we were young parents(21) and to go through this made us strong and better parents. It's not the easiest thing to do at any age.

How MAW comes in- Her Pediatrician told us about it and we didn't think she would be a MAW kid. We had to wait til' she turned 2 1/2 yrs old. After everything went through it was only a few weeks before we met with the volunteers. They came to the house in Oct to meet the family. She said disney because of playhouse disney. They asked January what her favorite color was and she told them "Black". We all looked at her.. I told her that her favorite color is not black..She said yeah, mommy this color. (At this time she was coloring for the volunteers.) and it was black. Her whole picture that she colored was black. The volunteers said that it was the first time a kid told them black. I have to tell you her favorite color now is purple, but for awhile it was black. We picked may because my husband just started his new job and by that time he will be able to take vacation time. In late Dec, we recieved a letter with our date (May 6th-May 12th).

UPDATE!!!!
I read a lot PTR and most of them gave info about each family member. I'm April stay at home wife/mom now. I was full time college student and work full time. I met my dh three months before we grad high school. We went to huge school and never met before. We went to our senior prom together. We both went different ways after high school(04). We got back together in 05' and was planning to get married after I grad college, but guess what January came first. January was born in 07'. I had all the plans to go back to school(only had one yr) and work. After she was born, I didn't care about anything but getting her better. I believe her being sick brought us closer together. We went to the court house the day January turn three months old to get married and had party year later. My dh is Andrew. He worked a job that he hated til' all January surgeries was finished because they would let him off anytime he wanted. He went to every appt and stay with her for all the hospital visits. After her last surgery, he started to look for a new job. He is now a cable guy. I think he enjoys it.. We always plan on having one more. We want them to be close in age because I have one sister and she is 11. We found out that we were having Kaitlyn on January 2nd birthday. The next day, she went home from just having her last surgery. We are family that enjoys getting at the house. Oh yea, January was the first granddaughter, great-granddaughter, and great-great granddaughter on both sides. I can say the family took one whole waiting room up and she is spoiled.




Links for PTR:
Pictures of the girls
Our flight schedule
Hollywood & Vine
I love Handy Manny(Pic)
Pictures
Dr. Gust
The Crystal Palace
Day at the Park(Pic)
Sister Love(Pic)
Disney Easter Baskets?
Rough Draft
Dream about WDW
See you next year
Sea World

Question about the trip:
Kilimanjaro Safaris at AK
Must Do List
Travel w/10month old
Umbrella Stroller
Mother's Day 2011
Food at WDW


Big Gives
It's from Minnie Mouse
Girls loves purses
I Spy the letter J
You have a friend in me
Love in the air
Taking Rocket all the way to H&V
Airplane bags
Mommy, HATS
Daddy I think it for you

Last edited by mommy2girlswv; 04-02-2011 at 10:26 PM.
mommy2girlswv is offline   Reply With Quote
Old 02-28-2011, 09:13 PM   #2
blessedmom4
WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
blessedmom4's Avatar
 
Join Date: Apr 2010
Location: I am not religious, I have a relationship with God.
Posts: 4,460

April Another heart Mom here. Looking forward to learning more about your sweet family!
blessedmom4 is offline   Reply With Quote
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 02-28-2011, 09:20 PM   #3
Bill_Lin
Grateful to God
 
Bill_Lin's Avatar
 
Join Date: May 2007
Location: Great Northwest
Posts: 747

Your Wish Trip

Quote:
Originally Posted by mommy2girlswv View Post
Our family: Myself(April) stay at mom 25, my wonderful husband(Drew) 24, and our two daughters, January 3-wish child, Kaitlyn 8months old(10months time of trip)

The crazy last three years:
January was 8 lbs 3 oz when she was born. The hospital sent her home a few days after birth thinking she was fine.. At 5 days old, we took her to her pediatrician for a newborn check-up. After her exam, her Dr. told us she was going to schedule an appt to see the local cardiologist. Her Dr. told us that she scheduled an appt first thing the next morning (8 am) with the cardiologist. I was worried about what could be wrong with her . Our family told us that it was probably just a heart murmur and told us several names of people in the family that have had one. That helped relieve some of the worry. I told my husband to go ahead and work the day of the appt and that my grandma and mom would go with me. When we went to the appt the first thing they did was a ekg. After many tries with the EKG they told me that it wasn't working right. We went with the Dr. to do the Echo. I will never forget the faces the Dr. was making when she was looking at my daughters heart. I started to cry before she said a word, because I could tell the Dr. couldn't believe what she was looking at. She asked me if I had someone here with me I told her that my grandmother and mom were in the waiting room. She went and got them. When they returned she started to tell us a bunch of info that I don't remember, but the part that she showed us a picture of the heart. She said your daughter doesn't have this part, I don't think she has this part, and your daughter has the worst heart that I have ever saw. She told us that she made some phone calls and that WVU Ruby Memorial (the state children's hospital which was a 3 hour drive) is waiting for us. While we were waiting for the ambulance I called my husband to meet us at the hospital. When we got to Ruby Memorial they took us back to wait for the Drs. to come talk to us (worst wait ever). They came and got us and put us in a huge room with one box of tissues in the middle of the table. It is the most horrible feeling to know something is wrong with your kid and be sat at a table with a box of tissues in front of you. They told us our daughter had DORV, TGA, and VSD. To make a long story short.. She had the PA Band surgery at one week old, Glenn surgery at 5 months and the Fontan at 2yrs old. She now has a single ventricle. She had alot of Dr. appts and before the last surgery her o2 level was never higher than 72 and is now around 94. She was 22lbs for her last surgery and it's been little over a year now and she is 35lbs. Since the last surgery you can really tell it worked. She is still on meds and some days she still looks pale sometimes. To us we were young parents(21) and to go through this made us strong and better parents. It's not the easiest thing to do at any age.

How MAW comes in- Her Pediatrician told us about it and we didn't think she would be a MAW kid. We had to wait til' she turned 2 1/2 yrs old. After everything went through it was only a few weeks before we met with the volunteers. They came to the house in Oct to meet the family. She said disney because of playhouse disney. They asked January what her favorite color was and she told them "Black". We all looked at her.. I told her that her favorite color is not black..She said yeah, mommy this color. (At this time she was coloring for the volunteers.) and it was black. Her whole picture that she colored was black. The volunteers said that it was the first time a kid told them black. I have to tell you her favorite color now is purple, but for awhile it was black. We picked may because my husband just started his new job and by that time he will be able to take vacation time. In late Dec, we recieved a letter with our date (May 6th-May 12th).
I am excited to hear about your Wish Trip. Your story touched me deeply. I can relate to some of what you dealt with, all of us here share that burden for our kids.

I am really glad that Playhouse Disney will be open when you are there. We really enjoyed it and I am sure it will be special for you all.
Bill_Lin is offline   Reply With Quote
Old 02-28-2011, 09:28 PM   #4
mommy2girlswv
Mouseketeer
 
mommy2girlswv's Avatar
 
Join Date: Feb 2011
Location: West Virginia
Posts: 433

My girls

Our Family


Me(April)


DH(Drew)



DD-January-(Wish kid) right before Disney on Ice.




DD-Kaitlyn-few months ago(I don't know why her picture is smaller)

We don't have many pictures of us without the girls in them..

Last edited by mommy2girlswv; 03-19-2011 at 09:34 PM.
mommy2girlswv is offline   Reply With Quote
Old 02-28-2011, 09:42 PM   #5
blessedmom4
WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
blessedmom4's Avatar
 
Join Date: Apr 2010
Location: I am not religious, I have a relationship with God.
Posts: 4,460

They are so pretty!
blessedmom4 is offline   Reply With Quote
Old 02-28-2011, 10:56 PM   #6
Bill_Lin
Grateful to God
 
Bill_Lin's Avatar
 
Join Date: May 2007
Location: Great Northwest
Posts: 747

Awwww

Quote:
Originally Posted by mommy2girlswv View Post


January-(Wish kid) right before Disney on Ice.




Kaitlyn-few months ago(I don't know why here picture is smaller)
How Sweet. She is obviously a true and genuine DISNEY FAN. She is going to have an amazingly magical time. So will you, by the way.
Bill_Lin is offline   Reply With Quote
Old 03-01-2011, 07:34 AM   #7
wishin' on a star
DIS Veteran
 
wishin' on a star's Avatar
 
Join Date: Mar 2010
Location: Olney, Maryland
Posts: 508

Hi April! Welcome to the DIS...I'm sure you all are so excited to go on January's wish trip, and I can tell you that the time will go very quickly now! My DD has a CHD, among many other things, and we went on a wish trip last May. It was a great time of year to go!! I can't wait to hear more. Your girls are beautiful!!
__________________
Laura (me!) Dave (DH) Carmella 11 Catherine 10 (MAW princess in 2010!) John 8
Make-A-Wish PTR Catherine's MAW TR
wishin' on a star is offline   Reply With Quote
Old 03-01-2011, 07:58 AM   #8
cogero
DIS Veteran
 
cogero's Avatar
 
Join Date: Jun 2008
Location: Queens NY
Posts: 4,528

Oh how scary. I went through something similar with the surgery aspect. My son was born with a congenital defect and had surgery at 2 days old to repair it.

So happy you are going to Disney and your girls are beautiful
__________________
Chiara
DVC Member since 7/08 Cast Chiara , Gerard , Chiara Michelle (12), Jimmy (6) Sami (6/5/13)

Etsy ID: ChiarasCouture2014 here we come... WDW, a cruise, F&G and more!!! Why don't we make this trip report about 2012 & 2013.
Christmas & My Happy Place Equals Perfection. - A Dec 2011 PTR
cogero is offline   Reply With Quote
Old 03-01-2011, 09:17 AM   #9
mommy2girlswv
Mouseketeer
 
mommy2girlswv's Avatar
 
Join Date: Feb 2011
Location: West Virginia
Posts: 433

Quote:
Originally Posted by blessedmom4 View Post
They are so pretty!
Thank you
mommy2girlswv is offline   Reply With Quote
Old 03-01-2011, 09:21 AM   #10
mommy2girlswv
Mouseketeer
 
mommy2girlswv's Avatar
 
Join Date: Feb 2011
Location: West Virginia
Posts: 433

Quote:
Originally Posted by Bill_Lin View Post
How Sweet. She is obviously a true and genuine DISNEY FAN. She is going to have an amazingly magical time. So will you, by the way.
She loves her Disney and Nick jr. I heard Universal haves Dora walking around. I can't wait to go disney to hear "Mommy look!"
mommy2girlswv is offline   Reply With Quote
Old 03-01-2011, 09:24 AM   #11
mommy2girlswv
Mouseketeer
 
mommy2girlswv's Avatar
 
Join Date: Feb 2011
Location: West Virginia
Posts: 433

Quote:
Originally Posted by wishin' on a star View Post
Hi April! Welcome to the DIS...I'm sure you all are so excited to go on January's wish trip, and I can tell you that the time will go very quickly now! My DD has a CHD, among many other things, and we went on a wish trip last May. It was a great time of year to go!! I can't wait to hear more. Your girls are beautiful!!
We picked May because it would be hot, but not too hot. Did it rain much when your family went?
mommy2girlswv is offline   Reply With Quote
Old 03-01-2011, 09:36 AM   #12
mommy2girlswv
Mouseketeer
 
mommy2girlswv's Avatar
 
Join Date: Feb 2011
Location: West Virginia
Posts: 433

Quote:
Originally Posted by cogero View Post
Oh how scary. I went through something similar with the surgery aspect. My son was born with a congenital defect and had surgery at 2 days old to repair it.

So happy you are going to Disney and your girls are beautiful
I was scaried. At least she was so young at the times of each surgery because She doesn't remember it much. But I can tell details about each day. Baby recovery time is faster. She was home in week after the first surgery. They told us 6 months. How long was your son in Hospital after?
mommy2girlswv is offline   Reply With Quote
Old 03-01-2011, 09:39 AM   #13
mommy2girlswv
Mouseketeer
 
mommy2girlswv's Avatar
 
Join Date: Feb 2011
Location: West Virginia
Posts: 433

Rides

I've been looking at attractions details like height requirement and age group. I've came across the attraction called Kilimanjaro Safaris at AK. Under
guest policies it saids "For safety, you should be in good health and free from high blood pressure, heart, back or neck problems, motion sickness or other conditions that could be aggravated by this adventure" Is it that bad of ride? My daughter also have high blood pressure and takes meds three times a day for it. My husband tells me your thinking to much?
mommy2girlswv is offline   Reply With Quote
Old 03-01-2011, 09:47 AM   #14
cogero
DIS Veteran
 
cogero's Avatar
 
Join Date: Jun 2008
Location: Queens NY
Posts: 4,528

Quote:
Originally Posted by mommy2girlswv View Post
I was scaried. At least she was so young at the times of each surgery because She doesn't remember it much. But I can tell details about each day. Baby recovery time is faster. She was home in week after the first surgery. They told us 6 months. How long was your son in Hospital after?
He was home with in 11 days of birth. He actually came home on his due date. He is physically fine now with no side effects from his defect so that is a blessing.
__________________
Chiara
DVC Member since 7/08 Cast Chiara , Gerard , Chiara Michelle (12), Jimmy (6) Sami (6/5/13)

Etsy ID: ChiarasCouture2014 here we come... WDW, a cruise, F&G and more!!! Why don't we make this trip report about 2012 & 2013.
Christmas & My Happy Place Equals Perfection. - A Dec 2011 PTR
cogero is offline   Reply With Quote
Old 03-01-2011, 10:10 AM   #15
wishin' on a star
DIS Veteran
 
wishin' on a star's Avatar
 
Join Date: Mar 2010
Location: Olney, Maryland
Posts: 508

Quote:
Originally Posted by mommy2girlswv View Post
We picked May because it would be hot, but not too hot. Did it rain much when your family went?
I didn't rain at all on our trip, except for one evening after we were already back at GKTW. We were swimming, and they did have to close the pool early because of lightning, but it really didn't bother us at all. It was hot, I will tell you that...but really, there are so many shaded lines and rides that are inside and air conditioned, that you can always take a break from the heat. We got a lot of use out of the battery operated spray fan, too! We bought ours at the park, but you can get them cheaper at places like Walmart. And we were able to refill it with ice water all over the park all day long.
__________________
Laura (me!) Dave (DH) Carmella 11 Catherine 10 (MAW princess in 2010!) John 8
Make-A-Wish PTR Catherine's MAW TR
wishin' on a star is offline   Reply With Quote
Reply



Thread Tools
Display Modes Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 09:13 PM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.