Sebastian's Make A Wish Trip to Disney

[LuvGoing2Disney7]

Been thinking of you guys this morning. I hope you all are having the BEST TIME EVER!! And that the kids are feeling better and you've gotten at least a little bit of rest

 

[LuvGoing2Disney7]

This just has me sobbing. The poor, poor woman. Hospitals are so STUPID sometimes! Serious idiots!
.

I totally agree. When Drew was born and in the PICU they insisted I attend the breastfeeding and new mom classes before they would discharge me. I hadn't even gotten to hold him yet. I was the only mom sitting in there without a baby. They were loving on their babies and I was sitting there in tears begging God to let my son just live

 

[oklamomof4boys]

I totally agree. When Drew was born and in the PICU they insisted I attend the breastfeeding and new mom classes before they would discharge me. I hadn't even gotten to hold him yet. I was the only mom sitting in there without a baby. They were loving on their babies and I was sitting there in tears begging God to let my son just live

Same thing almost happened to me with Nathan. They were going to make me go to the class but when I was in my room crying before it, a wonderful nurse came to me and said, " I'm the one doing the class, I'm going to write down that you were there-just hang out in your room until we are done." I appreciated that so much.

Amber-can't wait until we hear all about your trip! I'm sure it was wonderful!

Carol

 

[twinmum]

Good morning - just popping in, hoping we had work about Amber and family. Add me to the list - I didn't have to go to the breast-feeding class, but the room was 2 doors down. I lay there in my bed, waiting for any word that would give me more hope that Douglas and Mark would survive, and I had to listen to all the excited new others sharing stories, heard all the gurgling, happy and healthy babies, and watched the parade of happy families going back and forth. I wasn't able to get out of bed by myself. Eventually a kind, older nurse came by, said gently, "Now dear, you don't need to hear all that today, do you? Let's have you rest so you can get over and see your little babies as soon as possible." And she quietly closed the door. I remember her words exactly.

At least the hospital had the good sense to transfer me from a shared room (with a happy, healthy baby and mother) into a private room before the morphine wore off some - and I was truly aware of the fragile state of my babies.

I've been upset this weekend. My mother's cognitive condition is declining very rapidly - yesterdat she knew Douglas, but couldn't think of his name. He was so upset, and too young (10) to really understand that she cannot help it. My sister and husband are off to South America/Patagonia for a month (!), not that they are able to do much to help anyway because they live elsewhere. For whatever reason it's been tougher emotionally managing Mark's needs (the holidays just seem to do this for some reason, but I think it's just everything all together).

But there's a good side to this. Now I can think back to Mark's Wish Trip, remember all the happy times, and all the people - staff and volunteers - at GKTW, SeaWorld, Kennedy Space Center, Universal and of course our beloved WDW, who went out of their way to help us have a magical trip. For that time, we felt that all of them were sharing our journey with us, and helping to ease our load.

BUT I JUST WANT TO GO BACK!!! TODAY, PLEASE!!!

Thinking of you all, and listening to Chirstmas music in an effort to cheer up,
Alison

 

[maroo]

Good morning - just popping in, hoping we had work about Amber and family. Add me to the list - I didn't have to go to the breast-feeding class, but the room was 2 doors down. I lay there in my bed, waiting for any word that would give me more hope that Douglas and Mark would survive, and I had to listen to all the excited new others sharing stories, heard all the gurgling, happy and healthy babies, and watched the parade of happy families going back and forth. I wasn't able to get out of bed by myself. Eventually a kind, older nurse came by, said gently, "Now dear, you don't need to hear all that today, do you? Let's have you rest so you can get over and see your little babies as soon as possible." And she quietly closed the door. I remember her words exactly.

At least the hospital had the good sense to transfer me from a shared room (with a happy, healthy baby and mother) into a private room before the morphine wore off some - and I was truly aware of the fragile state of my babies.

I've been upset this weekend. My mother's cognitive condition is declining very rapidly - yesterdat she knew Douglas, but couldn't think of his name. He was so upset, and too young (10) to really understand that she cannot help it. My sister and husband are off to South America/Patagonia for a month (!), not that they are able to do much to help anyway because they live elsewhere. For whatever reason it's been tougher emotionally managing Mark's needs (the holidays just seem to do this for some reason, but I think it's just everything all together).

But there's a good side to this. Now I can think back to Mark's Wish Trip, remember all the happy times, and all the people - staff and volunteers - at GKTW, SeaWorld, Kennedy Space Center, Universal and of course our beloved WDW, who went out of their way to help us have a magical trip. For that time, we felt that all of them were sharing our journey with us, and helping to ease our load.

BUT I JUST WANT TO GO BACK!!! TODAY, PLEASE!!!

Thinking of you all, and listening to Chirstmas music in an effort to cheer up,
Alison

All of you guys...with the stories about your pregnancy, birth experiences...I think someone seriously needs to evaluate how they handle teaching classes, etc. That is totally insane.

Alison...We (those of us that have already been) totally understand where you are coming from...wanting to go back! I would pack up today and be there tonight, if I could. I remember it like it was yesterday. For some reason, I don't think I will ever forget it.

Anyway...

Hoping to hear from Amber soon.

 

[macntosh]

Good morning - just popping in, hoping we had work about Amber and family. Add me to the list - I didn't have to go to the breast-feeding class, but the room was 2 doors down. I lay there in my bed, waiting for any word that would give me more hope that Douglas and Mark would survive, and I had to listen to all the excited new others sharing stories, heard all the gurgling, happy and healthy babies, and watched the parade of happy families going back and forth. I wasn't able to get out of bed by myself. Eventually a kind, older nurse came by, said gently, "Now dear, you don't need to hear all that today, do you? Let's have you rest so you can get over and see your little babies as soon as possible." And she quietly closed the door. I remember her words exactly.

At least the hospital had the good sense to transfer me from a shared room (with a happy, healthy baby and mother) into a private room before the morphine wore off some - and I was truly aware of the fragile state of my babies.

I've been upset this weekend. My mother's cognitive condition is declining very rapidly - yesterdat she knew Douglas, but couldn't think of his name. He was so upset, and too young (10) to really understand that she cannot help it. My sister and husband are off to South America/Patagonia for a month (!), not that they are able to do much to help anyway because they live elsewhere. For whatever reason it's been tougher emotionally managing Mark's needs (the holidays just seem to do this for some reason, but I think it's just everything all together).

But there's a good side to this. Now I can think back to Mark's Wish Trip, remember all the happy times, and all the people - staff and volunteers - at GKTW, SeaWorld, Kennedy Space Center, Universal and of course our beloved WDW, who went out of their way to help us have a magical trip. For that time, we felt that all of them were sharing our journey with us, and helping to ease our load.

BUT I JUST WANT TO GO BACK!!! TODAY, PLEASE!!!

Thinking of you all, and listening to Chirstmas music in an effort to cheer up,
Alison

I just can't wait to go... and am anxious to hear from this gang.

 

[twob4him]

Let me be the first to say.........




WELCOME HOME !!!!!!!!

I am praying that everything went well and your vacation was a dream come true!!!

 

[twob4him]

I totally agree. When Drew was born and in the PICU they insisted I attend the breastfeeding and new mom classes before they would discharge me. I hadn't even gotten to hold him yet. I was the only mom sitting in there without a baby. They were loving on their babies and I was sitting there in tears begging God to let my son just live

Wow...this really surprised me. After all, you are in a hospital. I thought you were allowed to leave. Sure if you sign out early you probably have to sign a bunch of paperwork saying you won't sue or something. But you are not in prison or such. If you don't want to go to a class, I don't think they have the right or ability to "make you go", especially under the circumstances. I mean really.

 

[AmberGreenawalt]

We are home!!!!

PHENOMENAL...STUPENDOUS...AMAZING...INCREDIBLE...these adjectives can't even describe the magic and joy (well mostly---we did have toddlers remember) of it all!

I took well over a 1000 photos plus video and photo pass plus the CD that GKTW gives you so it is going to take me awhile to sort through it all but I promise I AM going to do a trip report because I felt so blessed over and over again to have had the Wish Trippers thread and all the other previous trip reports of the people who went before us to read and learn from....we had a leg up on how to make the magic happen and where to find it and I want to pay forward any knowledge that we picked up and of course showcase my plethora of photos and the AWESOME Big Give outfits...

The top three things we got comments on were:

1) Our Clothes---so many people--men, women, cast members, volunteers commented on our adorable outfits. There was considerable pointing

2) Our strollers---two orange BOB strollers drew a lot of Ooos and Ahhs They rocked...we could not have done it without them...I've never felt that way about a opiece of baby equiptment before...seriously I would do a commercial if I could.

3) Our tiny baby---I can't tell you how many people asked us how old Savannah was and when told them 4 and a half months followed with "She's so tiny" --some seemed mortified we would bring a baby that age to Disney. Whatever. She had fun!...and so did the rest of us!!!!!

I was up at 4:30 a.m. this morning (thanks Savannah!) and slept no later than 6:30 a.m. every other day of the vacation so I am pooped. I fell asleep on at the way to the airport...and at the airport...and on the airplane...We're back at the Doctor's again tomorrow and Wednesday so I'm off to do some unpacking and catch up some sleep....Disney is not relaxing...at least not "The Greenawalts do Disney" is not relaxing...Zzzzzz Zzzzz Zzzz

 

[maroo]

We are home!!!!

PHENOMENAL...STUPENDOUS...AMAZING...INCREDIBLE...these adjectives can't even describe the magic and joy (well mostly---we did have toddlers remember) of it all!

I took well over a 1000 photos plus video and photo pass plus the CD that GKTW gives you so it is going to take me awhile to sort through it all but I promise I AM going to do a trip report because I felt so blessed over and over again to have had the Wish Trippers thread and all the other previous trip reports of the people who went before us to read and learn from....we had a leg up on how to make the magic happen and where to find it and I want to pay forward any knowledge that we picked up and of course showcase my plethora of photos and the AWESOME Big Give outfits...

The top three things we got comments on were:

1) Our Clothes---so many people--men, women, cast members, volunteers commented on our adorable outfits. There was considerable pointing

2) Our strollers---two orange BOB strollers drew a lot of Ooos and Ahhs They rocked...we could not have done it without them...I've never felt that way about a opiece of baby equiptment before...seriously I would do a commercial if I could.

3) Our tiny baby---I can't tell you how many people asked us how old Savannah was and when told them 4 and a half months followed with "She's so tiny" --some seemed mortified we would bring a baby that age to Disney. Whatever. She had fun!...and so did the rest of us!!!!!

I was up at 4:30 a.m. this morning (thanks Savannah!) and slept no later than 6:30 a.m. every other day of the vacation so I am pooped. I fell asleep on at the way to the airport...and at the airport...and on the airplane...We're back at the Doctor's again tomorrow and Wednesday so I'm off to do some unpacking and catch up some sleep....Disney is not relaxing...at least not "The Greenawalts do Disney" is not relaxing...Zzzzzz Zzzzz Zzzz

YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am so glad you are home!!


Oh...it sounds wonderful! And I am so glad you are determined to do a TR. It will be a wonderful experience for you. And us!! Double bonus!!!


We are glad you are home, safe and had a good time!

 

[tinytreasures]

Welcome home
I am so glad you had a wonderful time
I can't wait to hear all about it

 

[mrsksomeday]

Amber, I am so happy you had a great time!!! Get rested up then tell us all about it.

 

[AmberGreenawalt]

I can't go to bed without sharing this with ya'll!...I meant to post it before we left but couln't get the picture to upload. I recieved the photo below in an e-mail. I’m not the type to forward stuff on en masse and I always check stuff out that is sent to me on snopes.com... But in this case I actually know the woman who wrote it. Her name Katy and she is Sebastian's Child-Life Specialist. She used to work over at Hemby Children’s Hospital where Sebastian has had his surgeries but now she works out of the Blume Pediatric Oncology Clinic where we take Sebastian.

At first I scrolled down through the e-mail to the photo. My breath caught in my throat. Was I looking at what I thought I was looking at? I recognized the floor and the doors as those of the PICU at Hemby Children’s Hospital....These types of inspirational e-mails always make me tear up but I was shaking in my chair. Having stood right in that spot waiting for the PICU doors to open it the photo below is very faith affirming.

I think about the many times I’ve asked our family and friends to pray for Sebastian (and more recently Savannah) believing that by storming the heavens with prayer God would deliver one of his many miracles. I don’t consider myself to be great at “praying”. I shy away from even leading grace at meals. So my prayer has always been simple…”Lord please heal Sebastian and send your angels to watch over him.” This is what I have repeated in my heart and from my lips.

Here in this photo, I can see, captured, what we have felt…that God has indeed sent his angels. For Sebastian, for the little girl in the story, for the kids on these Wish Tripper threads and for countless others who have needed Him.

With Love,
Amber

Here is Katy's e-mail...picture below of the PICU Angel guarding the door:

So many of you have heard me tell the story, but I wanted to pass it along anyway to those who didn't hear it and for those who wanted it in email.

A couple of Wednesdays ago, I got an evening phone call from the pediatric ICU at Presbyterian Hospital, where I work as a child life specialist. Usually when they call at night, it means something bad has happened. This, however, was different. My coworker told me that the most amazing thing had just happened and she just had to call to tell me.

We had a patient who has really grown up in and out of the hospital. All the staff knows her and her family. She had been in the Pediatric Intensive Care Unit (PICU) for about a month, and had been intubated - on life support. She was not doing well. The doctors had approached mom about taking her off life support the Saturday before. Mom was okay with it, and said that she'd been through so much and if was her time to go she wanted to honor that. So they had taken her off.

It was Wednesday and she was still alive. Amazing. The doctors approached mom about taking off her oxygen mask. Mom was supportive, and began praying over her daughter. The mother of another young patient who was in the bed next to her began praying with her.

The nurse practitioner went to the nurses station to chart that she had taken off the oxygen mask. While doing so, she looked up at the security monitor that videotapes the double doors leading into the PICU. It records anyone who may be waiting outside the doors to get in since it is a secure unit. She saw a man standing there, and it looked a little funny to her, so she decided to walk down the hall to open the double doors personally. When she opened them, no one was standing there.

She walked back down to the nurses station to finish charting, assuming he had walked away, but saw him still standing there on the monitor. So she opened the doors with a button near the nurses station and leaned over to see him walk in, but no one was standing there.

She pulled over another nurse and both stood staring at this man on the monitor and opening the doors to find no one there. The nurse practitioner leaned in closely to look at the man on the monitor and said, 'Oh my gosh. That's an angel. You can see his wings!'

They said that the sun starting shining so brightly and the whole PICU was strangely filled with light. They said he was a tall man and you could see wings behind him.

They pulled over all the staff of the PICU and the two praying mothers and everyone was staring at this man on the monitor and opening the doors to find no one there. Crying, everyone pulled out their camera phones to take pictures, but no one could get it to show up on their camera. The mother of the girl pulled out her camera phone and finally got a picture of the angel who was guarding the doors to the PICU. He turned out as a man of light. I have attached the picture from her phone.

The girl was later discharged from the hospital to go home.
A Miracle.

This story makes me so grateful for the way that God reveals himself to us, and the how Great He is really is. We have much to be thankful for this holiday.

 

[macntosh]

We are home!!!!

PHENOMENAL...STUPENDOUS...AMAZING...INCREDIBLE...these adjectives can't even describe the magic and joy (well mostly---we did have toddlers remember) of it all!

I took well over a 1000 photos plus video and photo pass plus the CD that GKTW gives you so it is going to take me awhile to sort through it all but I promise I AM going to do a trip report because I felt so blessed over and over again to have had the Wish Trippers thread and all the other previous trip reports of the people who went before us to read and learn from....we had a leg up on how to make the magic happen and where to find it and I want to pay forward any knowledge that we picked up and of course showcase my plethora of photos and the AWESOME Big Give outfits...

The top three things we got comments on were:

1) Our Clothes---so many people--men, women, cast members, volunteers commented on our adorable outfits. There was considerable pointing

2) Our strollers---two orange BOB strollers drew a lot of Ooos and Ahhs They rocked...we could not have done it without them...I've never felt that way about a opiece of baby equiptment before...seriously I would do a commercial if I could.

3) Our tiny baby---I can't tell you how many people asked us how old Savannah was and when told them 4 and a half months followed with "She's so tiny" --some seemed mortified we would bring a baby that age to Disney. Whatever. She had fun!...and so did the rest of us!!!!!

I was up at 4:30 a.m. this morning (thanks Savannah!) and slept no later than 6:30 a.m. every other day of the vacation so I am pooped. I fell asleep on at the way to the airport...and at the airport...and on the airplane...We're back at the Doctor's again tomorrow and Wednesday so I'm off to do some unpacking and catch up some sleep....Disney is not relaxing...at least not "The Greenawalts do Disney" is not relaxing...Zzzzzz Zzzzz Zzzz

Welcome back, now on to questions.

Were those your own strollers? What is a BOB?

 

[AmberGreenawalt]

Welcome back, now on to questions.

Were those your own strollers? What is a BOB?

Yes, those were our own strollers. "BOB" is the brand. They are running strollers with front wheels that "ocilate" or turn. They are EXPENSIVE but 100% worth every penny. You can push them around the parks with your pinky! and they turn on a dime. Very well made! I saved for months to buy them. I had an envelope that I kept in my dresser drawer and I would sock away a little bit at a time until we could afford the Dualie (the double). I also consigned a bunch of old stuff to get some cash for it. Then we liked it so much that I sold all of our other strollers (Duo Glider, umbrella etc.) on Craig's list so that we could buy the single version.

 

[jham]

Welcome home! I'm glad you had a wonderful trip and can't wait to hear about it!

 

[ndloewen]

Oh my gosh...the tears are pouring at your angel story...WOW! I have always believed there are angels surrounding my son when we are in hospital. Once my mom called in the middle of the night, the night before he was to go into a particularly difficult surgery, telling me she had just had the most vivid dream. She had seen Noah on the OR table, with the surgeon and nurses around him, and every inch of the rest of the room was packed with angels. It gave me so much peace to send him into the OR.

Oh, and of course...WELCOME HOME!!!! I am SO excited to read all about your trip!!

 

[mom2lilnick]

Welcome home! I am so glad you had an awesome trip! I can't wait to read all about it.

 

[AmberGreenawalt]

Took the kids to the doctor today. Good news is all three sets of ears are looking great!

Bad news is Savannah is still not growing. Dr. Queen is sending us to Pediatric GI...say's he will want to scope her....don't know what all that involves. Anyone? She's also ordering the Cystic Fibrosis sweat test after all. One in 1000 whose pregnacy test was negative do end up having it. I just want the mystery solved.

She is still spitting up like crazy. Doesn't matter what it is, breast milk, formula, cereal, sweet potatoes...
I took some more picturs of the puddles she left all over Disney. One kid almost sat in a pool of her spit up

I'm still unpacking and have not even had a chance to down load the pictures from the camera. I don't have a single present wrapped for Christmas either. Brian and my in-law are headed out of town so just me wit hthe three kiddos...ACK!

I think I have PDD...Post Disney Depression

 

[NicoleDisneyFan]

Amber-Welcome back! Glad to hear that you all had a good time.
Don't feel bad about not wrapping presents because I still haven't even touched my wrapping paper and I usually end up doing it Christmas eve and worry that it won't be done and it always happens. I always want to save up and just bring it to our local mall and have them wrap it up but I wouldn't have fun on Christmas day when the kids tear the presents open and I say "All that time wrapping and 2 seconds to open"

Also that PDD is hard to get over!! I am still trying to get over it and we just went to disneyland and it just wasn't the same but it did help..lol

I am not sure about the scope test but I think it is when they put the kids under general anesthetic and put a thin tube down the mouth to look around the stomach area for GERDS. My dd Sasha had a bad case of GERDS when she was a infant and use to throw up so much that I would have to bring a whole bag and a half of extra cloths when we went out and a lot of burp rags. She didn't gain weight fast but she was born over 9lbs. I breastfeed her and had to give her formula for her to try and gain more weight. I think they gave her tagament for the GERDS. When she started eating solids for most of her meals then she was over the throwing up and the GERDS and out grew it. She also had a lot of colic because of it.

I hope all goes well!