Noah's Wish Trip (Wings ~ July 29, 2009)

[BrandyC1974]

Just thought I'd post a little update on us...

We spent the morning at Rehab Center for Children. Our physiotherapist has been trying to get us in there for a while, and there happened to be a cancellation today. Noah saw the new orthopedic doctor to assess his weight bearing issues. His left hip and knee are very, very tight, which is what is keeping Noah from progressing to fully standing on his own. The xrays showed that his hip is slightly out of place, but not enough to do anything about it...the good new is that it's more of a muscle issue. Because it is only on one side, it is very difficult for him to even try and compensate. So the best thing we can do is to work on stretching and positioning. They decided to fit him for a stander...a device in which Noah will be forced to stand and weight bear. Ok, that sounds a bit barbaric...actually, they do look a bit like some barbaric torturing device, but it's really not that bad. It will have a nice tray in front, so basically like a high chair, only he will have to stand rather than sit. I'm thinking this will probably be a challenge to confine him. We will have to think of some fun activities to do when he is in it.

He was also fitted for AFOs (ankle foot orthotics, or braces) to help position his ankles better. This involved casting both of Noah's feet up to his knees to make molds. This was NOT fun. Noah was VERY mad about this procedure and it was quite the wrestling match trying to get these casts on. Wish I'd had my camera...we were quite the sight, with Noah kicking and screaming...plaster EVERYWHERE! So in about 4-6 weeks, we should get the stander and braces. The stander he will spend short periods each day in, and the braces he will wear as much as possible, even for sleeping if he will tolerate them. Just another thing to add to the mix! We did get to pick a custom design for them which was fun...Noah's will be blue with cars, trucks and airplanes on them.

CPAP is going much better. At our appointment last week, we got a different mask to try, which has different pressure points. It fits him so much better and his nose is healing, with no further skin breakdown. We are now getting very little leak in the mask, which means much fewer alarms during the night. The way things were going when we first came home, I did not know how we could do this long term. But things are so much better and Noah is getting used to his nightly ritual.

Off to work on my next trip update...gatorland!

My daughter Liz had a stander. It was torture for her!! She hated it. She was very happy when me and the doctor decided that she did not have to use it anymore.

Also, she wears AFO's. She does fine with them, but you do have to watch out for skin breakdowns. She has had problems with them in the past (due to her growing); but she is at a stand still with growth so the current ones have not been giving her any problems. She doesn't like wearing them at night (and she can't feel her legs at all).

I hope Noah does well with his stander and the AFO's.

 

[ndloewen]

oh thats awsome!
i was like how did you get the son's into the spa but thats cool that there is something for both boys and girls.

hope everyone is doing well

Joshua wasn't too sure about the spa at first, but loved the tatoos and the nascar outfit.

Thank goodness you threw in some comic relief with those Gator pics. LOL
I swear I can't read any WISH trips without crying, and I don't even have a WISH kid.
I do, however, have a boy with AFOs. His are currently green with camoflauged straps. Very manly. LOL

LOVE, love, love the pic of Noah and Mickey. That is JOY on his face! Sigh.
Thanks for the updates!

I know what you mean about crying over these wish trip reports... They are just so special! Oh, those camoflauged AFOs sound cute! (Ummm...I mean, manly )

Just stumbled on your report. The name Noah caught my eye. I have a little Noah too who is the youngest of three. Your children are precious and sending prayers to you and your family for all that you have been through

I cant wait to see some more great pics.

Thank you!

Great photos of the Dino putt-putt. I love the spa for the kids. The race driver costume was great. I can't wait for the Christmas update!

The spa is quite new at GKTW, but it's such a fantastic idea!

My daughter Liz had a stander. It was torture for her!! She hated it. She was very happy when me and the doctor decided that she did not have to use it anymore.

Also, she wears AFO's. She does fine with them, but you do have to watch out for skin breakdowns. She has had problems with them in the past (due to her growing); but she is at a stand still with growth so the current ones have not been giving her any problems. She doesn't like wearing them at night (and she can't feel her legs at all).

I hope Noah does well with his stander and the AFO's.

I'm worried it will be torturous for Noah too And thanks for the heads up on the skin breakdown issue. We are having that problem with Noah's cpap right now, but it's improving.

 

[ndloewen]

Ah...

Christmas is coming!

It looks like you guys had a great time! I am so glad you guys got to take some time and really enjoy GKTW!! How wonderful!! That makeover places looks fabulous!

Yes, Christmas is coming!! I'm actually having a hard time writing about it. The tears keep getting in the way

 

[3princesses+aprince]

Glad to see more updates from your wonderful trip. It does look like Kailyn was holding a real snake especially with the expression she has on her face.

 

[maroo]

Yes, Christmas is coming!! I'm actually having a hard time writing about it. The tears keep getting in the way

Aw....

And I ran out of kleenex beside my desk. I better go get some.

I can't wait to read about it. Tears are ok, sometimes...especially happy tears!

Noah's picture - the two of us playing with those blue drums on the playground - is still my desktop picture on my computer. I still smile every time I think about how much fun we had! And how stinking cute your kids are! I wish I could hear Noah giggle right now!

Do you have any videos you want to post? I remember when I showed Lauren and Lisa the pics of Noah you sent - and they were like, "Gosh, he IS cute!" Like they thought I was lying or something!

Take your time writing it...and we will be patient!

 

[kdzbear]

I did not go back and find the quote about the AFOs, but Tyler has worn them for almost three years now. We are down to night time for the moment again. He has some special grey tight fitting socks that the orthodist sold us to wear with them. They are moisture wicking and silver in them to help with circulation. I can't think of the brand, but I saved the package somewhere. I will look for it. They still do stink when they come off his feet each morning, but they do prevent most of the redness and they prevent all of the sores. Good luck with them. I am jealous that he has a patterned pair while Tyler's are plain white.

 

[RunningGirl]

I am coming out of lurkdom to let you know how much I have loved reading your TR! I'm so glad your family had the opportunity to enjoy such a wonderful time together. Now I wish I lived in Orlando, not to visit WDW more but so I could spend time volunteering at GKTW. What a great place!

 

[MRNsMommy]

I thought she was holding a real one until I realized where she was standing.

I thought the same thing! And I didn't even catch that they were in the gift shop! Doh!
That spa looks amazing! Can't wait to hear about Christmas!!!

 

[ndloewen]

I thought the same thing! And I didn't even catch that they were in the gift shop! Doh!
That spa looks amazing! Can't wait to hear about Christmas!!!

I'll have to tell Kailyn that!

I am coming out of lurkdom to let you know how much I have loved reading your TR! I'm so glad your family had the opportunity to enjoy such a wonderful time together. Now I wish I lived in Orlando, not to visit WDW more but so I could spend time volunteering at GKTW. What a great place!

I already have my parents convinced to go down next winter and volunteer. I think it would be a blast to volunteer there. Someday I hope we can do that too...for now, I just hope we can go back to visit!

I did not go back and find the quote about the AFOs, but Tyler has worn them for almost three years now. We are down to night time for the moment again. He has some special grey tight fitting socks that the orthodist sold us to wear with them. They are moisture wicking and silver in them to help with circulation. I can't think of the brand, but I saved the package somewhere. I will look for it. They still do stink when they come off his feet each morning, but they do prevent most of the redness and they prevent all of the sores. Good luck with them. I am jealous that he has a patterned pair while Tyler's are plain white.

Thanks for the tip about the socks. I'll have to keep an eye out for them.

Glad to see more updates from your wonderful trip. It does look like Kailyn was holding a real snake especially with the expression she has on her face.

Aw....

And I ran out of kleenex beside my desk. I better go get some.

I can't wait to read about it. Tears are ok, sometimes...especially happy tears!

Noah's picture - the two of us playing with those blue drums on the playground - is still my desktop picture on my computer. I still smile every time I think about how much fun we had! And how stinking cute your kids are! I wish I could hear Noah giggle right now!

Do you have any videos you want to post? I remember when I showed Lauren and Lisa the pics of Noah you sent - and they were like, "Gosh, he IS cute!" Like they thought I was lying or something!

Take your time writing it...and we will be patient!

Awww...I LOVE that you have that picture on your desktop I have no idea how to post videos. Are we able to do that on here??

I finished Christmas...it's up next!

 

[ndloewen]

Christmas comes once a week at GKTW...for no child's fantasy would be complete without Christmas! Every Thursday the place is transformed into a Winter Wonderland...Christmas music plays, decorations and lights are everywhere, and even some snow falls. After spending this past Christmas in PICU, I was really looking forward to this evening. I am a huge fan of Christmas and to have our family separated this past year, with Noah doing so poorly, was such a difficult time. So I had high expectations of this evening, and it was everything I had hoped it would be...it truly did feel like the Christmas we had missed.

After the spa, and a ride or two on the carousel of course, we headed to the Gingerbread House for Christmas dinner...yep, traditional turkey dinner complete with all the trimmings, right down to the pumpkin pie! Mmmm! Outside the party was starting and we got word that Santa had arrived in the theatre...

After the pictures, each child is allowed to pick a gift from a wall of toys, generously donated each week by Hasbro. This was an agonizing decision for Kailyn & Joshua...there was just so much to choose from! They both finally decided on fur real pets. We chose a glow worm for Noah (which has since become his favorite bedtime toy).

After Santa, and more candy from the theatre, there were very messy snowcones...

beautiful carriage rides...

fun cookie decorating...

and wonderful elves to read stories while we enjoyed more ice cream. The kids even got to keep the books that they chose to read...

That was about all of Christmas Noah could handle. It had been another long day. He spent the rest of the party in this position...

While Noah slept, there was a parade and then dancing to Christmas music with the characters. So he missed out on the characters that night, but I was very glad he was getting some much needed rest...

What a wonderful evening it was! Many of the children who come here will never see another Christmas. They cannot wait another year...we know Noah may be one of them. But GKTW, with the help of an incredible amount of volunteers, make sure that Noah and so many other children don't have to wait. They get to celebrate one more time! The tears come even as I write this...it was just such a special night for us...words cannot describe. The memories from this evening we will treasure always.

I am sure we all fell into bed that night, exhausted once again. Tomorrow Islands of Adventure awaits...

 

[kdzbear]

Now I have more tears streaming down my face. Christmas looks and sounds amazing. I could not imagine what those parents who are celebrating the last Christmas with their children must be feeling. I love the photo of Noah all tuckered out. Thank you for sharing more of your memories with us!

I found the insert that came with the socks. They are call "SmartKnit" AFO socks. We paid $10 for ours about a year and a half ago. I searched on the web for them and they seem to be around $15 a pair. Maybe your orthodist can get them cheaper for you. I know that they have helped Tyler a lot.

 

[MRNsMommy]

Once again I am amazed! Christmas once a week? Love it! How special, too, that you got to have a Christmas together after Noah being in the hospital for the "real" Christmas. The pictures were all great! Especially the whole family shot with Santa!
Can't wait for the next update!

 

[maroo]

Oh my gosh....I am totally squalling.

I will have to really comment later.

You were so right...

 

[WishMom09]

LOVE your Christmas pics...and I too am crying! SO very true...we should ALL remember to treasure each and every day...or holiday!
Looks like your kids had a blast with all the celebrating!
Can't wait to hear about your trip to IOA!

 

[maroo]

Ok. I am composed now!

I loved all of the pics - and I am not going to back and look at them right now (like I usually do as I comment) because I am afraid the water works will start again...But I am so glad you got pictures of the "closet" where the toys are - I always wondered that looked like!

I am so, so glad you had a wonderful family Christmas!

And I am so thankful for a place like GKTW that really gets it. A kids dream place...of course...would have Christmas!

But you are so right...many families have spent Christmas and other important family holidays and family time in the hospital...so they miss that family gathering or Santa or picking out toys. How cool for GKTW to give that back to the family. I love that place. Just love it.

But even more than that...to think that they will make sure a child gets another Christmas........



Ok...that's all again...for now.

 

[kimmylaj]

thats how i feel about give kids the world even more so after reading this. they do really think of anything. those pics brought many tears to my eyes. the family pics are wonderful. i am so glad you had this special time together.

 

[dpuck1998]

Thanks for sharing your wonderful story! I will think of your family Saturday when we are running the muddy buddy!! Thanks!!

 

[ndloewen]

Now I have more tears streaming down my face. Christmas looks and sounds amazing. I could not imagine what those parents who are celebrating the last Christmas with their children must be feeling. I love the photo of Noah all tuckered out. Thank you for sharing more of your memories with us!

I found the insert that came with the socks. They are call "SmartKnit" AFO socks. We paid $10 for ours about a year and a half ago. I searched on the web for them and they seem to be around $15 a pair. Maybe your orthodist can get them cheaper for you. I know that they have helped Tyler a lot.

Thanks for the sock info. Wonder if they come in teeny sizes??

Once again I am amazed! Christmas once a week? Love it! How special, too, that you got to have a Christmas together after Noah being in the hospital for the "real" Christmas. The pictures were all great! Especially the whole family shot with Santa!
Can't wait for the next update!

I am so thankful for that night.

Oh my gosh....I am totally squalling.

I will have to really comment later.

You were so right...

LOVE your Christmas pics...and I too am crying! SO very true...we should ALL remember to treasure each and every day...or holiday!
Looks like your kids had a blast with all the celebrating!
Can't wait to hear about your trip to IOA!

The kids had a blast. They got spoiled rotten...they SO deserved it!!

Ok. I am composed now!

I loved all of the pics - and I am not going to back and look at them right now (like I usually do as I comment) because I am afraid the water works will start again...But I am so glad you got pictures of the "closet" where the toys are - I always wondered that looked like!

When I was planning out trip, I really wanted to know what that looked like too. Wish I could have gotten a picture of the entire wall of toys just to show how much there was to choose from.

I am so, so glad you had a wonderful family Christmas!

And I am so thankful for a place like GKTW that really gets it. A kids dream place...of course...would have Christmas!

They SO get it!

But you are so right...many families have spent Christmas and other important family holidays and family time in the hospital...so they miss that family gathering or Santa or picking out toys. How cool for GKTW to give that back to the family. I love that place. Just love it.

But even more than that...to think that they will make sure a child gets another Christmas........

Ok...that's all again...for now.

I know...after our Christmas spent in hospital, made so much harder knowing that we may not get another. But if our GKTW Christmas is his last, it will have been perfect...because we were all together...as a family.

thats how i feel about give kids the world even more so after reading this. they do really think of anything. those pics brought many tears to my eyes. the family pics are wonderful. i am so glad you had this special time together.

Thank you!

Thanks for sharing your wonderful story! I will think of your family Saturday when we are running the muddy buddy!! Thanks!!

I will be thinking of YOU on Saturday! Thank you for support GKTW!!

 

[RunningGirl]

Well, you made me cry. You really amaze me - having a child with such challenges and you always seem to be finding the positive in everything and counting your blessings. I need to do the same thing with my healthy children. So glad you got to celebrate Christmas! I love the photo on Santa's lap.

 

[eyor44]

WOW! This place is incredible. and just when I thought it was perfect, you show us Christmas. Where do I sign up? I know where I will be volunteering if I get to move to Orlando.....in 18 years.