Planning Emma's Make a Wish

[Emmaswishtrip]

We are so excited to be going on a Make a Wish trip to Disney World!! Emma is a 4 year old twin who everyday asks” are we going to Disney today?”

A little background on Emma and our family! Emma and her twin brother Drew were born at 31 weeks unexpectedly. Drew weighed 3lbs 1 oz. and Emma 2lbs 6.5 oz. both we fighters! We learned the day after Emma was born that her esophagus was not attached to her stomach and would need to be repaired the next day. Emma did very well through surgery and we thought everything was going to go uphill! After many attempts Emma was unable to breathe on her own and the hospital we were at, were out of answers for us. Her brother was doing well growing, eating and gaining weight with talks of coming home! We decided to move Emma to Children’s Hospital Boston, it was the best decision we have made for her.
Once Emma transferred hospitals, her new doctors found that Emma had a laryngeal cleft and every time she would swallow she had a chance of aspirating into her lungs. The positive was they were able to get Emma to breathe on her own with the help of oxygen. It was decided Emma need a gj tube in her stomach in case she would reflux and aspirate as we were trying to keep her as healthy as possible and have her grow so we could repair her cleft. Emma’s twin Drew came home at just over 4 lbs. and daily made trips to visit his sister to keep her strong. We had some glimmers of light thinking she was getting better and might come home but one night a few days before our first family Christmas we had gotten a call that Emma had gotten very sick very quickly and needed to be intubated again. We talked to her doctors and knew that Emma would need a tracheostomy. We say that Emma’s 1st Christmas gift was her trach. This would help Emma get strong for the surgery she needs. After many days and nights we were able to take Emma home. Unfortunately Emma only stayed home for one night and was rushed back to Children’s Hospital Boston with aspirating pneumonia. A few weeks later she came home again and this time made it 2 nights before being rushed back with aspirating pneumonia. This went on a few more times until Emma turned blue at home and we decided with the doctors it was not safe to have our princess home with us. Emma spent a total of 265 days in the NICU to receive 1 of 3 laryngeal cleft repairs.
Throughout Emma’s journey we have found an immunodeficiency and now is being treated monthly with an IV transfusion. Emma is a child we call a frequent flier at Children’s Hospital Boston. We are followed by many physicians with lists of diagnosis. The one thing we haven’t been able to find is a way to remove Emma’s tracheostomy. We have tried twice now and while “everything looks good” there are unanswered reasons of why she is requiring oxygen daily and cannot breathe without her trach.
Emma is a typical little girl who loves to go to preschool and play with her brother! The one thing Emma does notice is how different she is then everyone else. When we told Emma that she was going to be able to make wish for anything she would want she looked down and said “Disney”, but then pointed to her trach and said “I still have my trach”. My husband and I said well “let’s go to Disney with a trach”, her brother was so excited and Emma said “call the doctor and ask” in a whispering voice. We said “Emma, we did and you can go”, the smile on her face lit up the room like the fourth of July.

We are waiting to meet with our wish grantor next week to plan this amazing experience!

[carebearkidney]

Aww - my wish child is also 4 and was born at 31 weeks. Born to be special gifts in our lives right!
I'm so glad she is getting her wish! We met our wish granters just last Saturday and we are now 100% approved for our Disney wish! Can't wait to read some more about your fighter - both of them! Hugs to all!

[Lilfoot93]

I am so glad that sweet Emma gets a wish

Jackie

[maroo]

I found your pretrippie report!

So glad you found the DIS! And the Wish Trippers thread!

Can't wait to see how this all unfolds!

Welcome!!!

[alizesmom]

Pixie dust for a magical wish trip!

[Emmaswishtrip]

Thank you so much! I will upload pictures soon! Emma and her twin Drew can't wait! I love they have something so positive to look forward to as Emma's life has been mostly in a hospital!

[Emmaswishtrip]

Our Wish Grantors came over tonight to meet Emma! They were two of the nicest people! Somehow it got past everyone that Emma is a twin and apologized up and down that they didn't bring a present for Drew. Drew didn't mind as he shares with Emma and Emma shares with Drew! The paperwork was completed and we are hoping to hear sooner then later! Here is a picture of Emma with her amazing wish grantors!

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[carebearkidney]

Oh yay! What a happy little face.

[justgeorgi]

Originally Posted by Emmaswishtrip

We are so excited to be going on a Make a Wish trip to Disney World!! Emma is a 4 year old twin who everyday asks” are we going to Disney today?”

A little background on Emma and our family! Emma and her twin brother Drew were born at 31 weeks unexpectedly. Drew weighed 3lbs 1 oz. and Emma 2lbs 6.5 oz. both we fighters! We learned the day after Emma was born that her esophagus was not attached to her stomach and would need to be repaired the next day. Emma did very well through surgery and we thought everything was going to go uphill! After many attempts Emma was unable to breathe on her own and the hospital we were at, were out of answers for us. Her brother was doing well growing, eating and gaining weight with talks of coming home! We decided to move Emma to Children’s Hospital Boston, it was the best decision we have made for her.
Once Emma transferred hospitals, her new doctors found that Emma had a laryngeal cleft and every time she would swallow she had a chance of aspirating into her lungs. The positive was they were able to get Emma to breathe on her own with the help of oxygen. It was decided Emma need a gj tube in her stomach in case she would reflux and aspirate as we were trying to keep her as healthy as possible and have her grow so we could repair her cleft. Emma’s twin Drew came home at just over 4 lbs. and daily made trips to visit his sister to keep her strong. We had some glimmers of light thinking she was getting better and might come home but one night a few days before our first family Christmas we had gotten a call that Emma had gotten very sick very quickly and needed to be intubated again. We talked to her doctors and knew that Emma would need a tracheostomy. We say that Emma’s 1st Christmas gift was her trach. This would help Emma get strong for the surgery she needs. After many days and nights we were able to take Emma home. Unfortunately Emma only stayed home for one night and was rushed back to Children’s Hospital Boston with aspirating pneumonia. A few weeks later she came home again and this time made it 2 nights before being rushed back with aspirating pneumonia. This went on a few more times until Emma turned blue at home and we decided with the doctors it was not safe to have our princess home with us. Emma spent a total of 265 days in the NICU to receive 1 of 3 laryngeal cleft repairs.
Throughout Emma’s journey we have found an immunodeficiency and now is being treated monthly with an IV transfusion. Emma is a child we call a frequent flier at Children’s Hospital Boston. We are followed by many physicians with lists of diagnosis. The one thing we haven’t been able to find is a way to remove Emma’s tracheostomy. We have tried twice now and while “everything looks good” there are unanswered reasons of why she is requiring oxygen daily and cannot breathe without her trach.
Emma is a typical little girl who loves to go to preschool and play with her brother! The one thing Emma does notice is how different she is then everyone else. When we told Emma that she was going to be able to make wish for anything she would want she looked down and said “Disney”, but then pointed to her trach and said “I still have my trach”. My husband and I said well “let’s go to Disney with a trach”, her brother was so excited and Emma said “call the doctor and ask” in a whispering voice. We said “Emma, we did and you can go”, the smile on her face lit up the room like the fourth of July.

We are waiting to meet with our wish grantor next week to plan this amazing experience!

Can't wait to hear more about the trip!!! Emma sounds like a little trooper!!!

[Emmaswishtrip]

We just found out our dates! November 10-17!! I can't believe in 2 months we will be in Disney! Now I have some planning to do! We are so excited to see Christmas at Disney!!

[ccgirl]

I am so glad Emma got her wish. Children's Hospital is really an amazing place! I bet she would love the BBB. I wish you a magical trip!

[Emmaswishtrip]

Originally Posted by ccgirl

I am so glad Emma got her wish. Children's Hospital is really an amazing place! I bet she would love the BBB. I wish you a magical trip!

We do love our Children's Hospital! We are lucky to have such an amazing hospital so close to home!

[Lilfoot93]

Yay for dates! It sounds like a great time to be in Disney World!

Jackie

[Emmaswishtrip]

So excited that our flights are booked! We are only going from the 10th-16th but we think that will be easier on the kids!

[tiffrobyn]

Originally Posted by Emmaswishtrip

So excited that our flights are booked! We are only going from the 10th-16th but we think that will be easier on the kids!

We will be in Disney at the same time!