Oh Toodles!!!

Discussion in 'Pre-Trip Reports and Plans' started by mommy2girlswv, Feb 28, 2011.

  1. mommy2girlswv

    mommy2girlswv Mouseketeer

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    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
     
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  3. blessedmom4

    blessedmom4 WE BELIEVE IN MIRACLES! ~~Nearly twice as many chi

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    :welcome: April :welcome: Another heart Mom here. :goodvibes Looking forward to learning more about your sweet family! :flower3:
     
  4. Bill_Lin

    Bill_Lin Grateful to God

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    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.
     
  5. mommy2girlswv

    mommy2girlswv Mouseketeer

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    Our Family

    [​IMG]
    Me(April)

    [​IMG]
    DH(Drew)

    [​IMG]

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


    [​IMG]

    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..
     
  6. blessedmom4

    blessedmom4 WE BELIEVE IN MIRACLES! ~~Nearly twice as many chi

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    They are so pretty! :goodvibes
     
  7. Bill_Lin

    Bill_Lin Grateful to God

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    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.
     
  8. wishin' on a star

    wishin' on a star DIS Veteran

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    :goodvibesHi 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!!:goodvibes
     
  9. cogero

    cogero DIS Veteran

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    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
     
  10. mommy2girlswv

    mommy2girlswv Mouseketeer

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    Thank you
     
  11. mommy2girlswv

    mommy2girlswv Mouseketeer

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    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!"
     
  12. mommy2girlswv

    mommy2girlswv Mouseketeer

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    We picked May because it would be hot, but not too hot. Did it rain much when your family went?
     
  13. mommy2girlswv

    mommy2girlswv Mouseketeer

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    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?
     
  14. mommy2girlswv

    mommy2girlswv Mouseketeer

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    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?
     
  15. cogero

    cogero DIS Veteran

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    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.
     
  16. wishin' on a star

    wishin' on a star DIS Veteran

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    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.
     
  17. brookerene

    brookerene DIS Veteran

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    Welcome and I'm glad you have started sharing your story.... that is a good question about BP... my son is on BP meds and is fairly stable except when sickness hits ( like recently) and I do plan to take him on those rides! I think part of would be how January responds to things... does her BP rise quickly due to things around home? I have not been to DW but I have been in a truck ride similar and I think it's more due to the bumpiness of the ride...I think you will have to judge each ride independently. Sorry that i'm not much help, but I'm glad you are here!
     
  18. mommy2girlswv

    mommy2girlswv Mouseketeer

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    That great. January physically looks fine on outside and doing great health wise. We just have to live for each day. The oldest peson alive that had the Fontan done in their 30's, but they just start doing that surgery in 1969. She will be 30 in 2037 and who knows what going to be out their for her.
     
  19. mommy2girlswv

    mommy2girlswv Mouseketeer

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    Thanks going to add that to my list. Everybody told me to pick up ponchos at the dollar store because it will cost you at disney
     
  20. mommy2girlswv

    mommy2girlswv Mouseketeer

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    Thank you, I'm glad I found this website. I've found out great info for our trip. Is your son on Captopril? She doesn't have a huge problem with her blood pressure and we hope they lower captopril this month appt. It was huge problem after her last surgery. She started on 6times day at the hospital and we left on 4times day. Only problem she haves is shortness of breath. (Ex. we go to the park for hr. After each activity, she needs a drink. She drinks about 32ozs of water in that hr.) Space Mountain haves the same guest Policies, but I would never let her ride that at any age because of her heart. She doesn't really like animals, but we think she would really enjoy the ride. We watch an dvd that shows the ride and we don't think were going to take our little one on it.
     
  21. Bill_Lin

    Bill_Lin Grateful to God

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    Mission Space (the intense version) is something to stay away from with heart issues. It is a centrifuge with intense g forces.
     

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