It took me a while longe rot put it on here...sorry!
A quick update on the experimental treatment:
She had her 2nd treatment a week ago today. The IV poke went better. One long poke instead of mulitples...so that was good. Still very hard on Ayla but better than the first.
She handles the benadryl better than last time and i think even had some fun while we were there. One for the highlights is that she gets to order breakfast like in a restaraunt...yes, hospital pancakes and home fries. Surprisingly tastey:)
Despite the actual treatment...it's almost "fun". Ryan's parents come down to help with Ezra b/c Ayla requested that he's there with her. So we all play in and out of the room and do crafts and color. When we are there is also the same day the therapy dog comes for a visit and the clowns:) So all in all...it's an okay day. It was actually about and hour and a half shorter this time, which we are very thankful for.
Her next treatment is november 10th and then she see's her Rhuematologist on the 18th...and we will see if she notices any difference.
Please continue to pray for this experimental med...that it would work for Ayla.
Lots of love and thanks.
Lacy
Okay, so we've been back for almost 2 weeks now...i've made many attempts to sit down and write this update.
So here i am...hopefully this is my final attempt. Part of what i think makes it hard is that i can't even convey in words out loud or written how amazing our trip was. I don't think i realized how much it was needed until we returned home.
We all felt really rested and restored despite the constant entertainment and excitment our Make A Wish week held. This coming 2 weeks later...
I understand that many of you probably don't need every specific detail of our trip...but i can't possibly explain to you without giving some details about the blessings we were showered with.
I'm fairly certain that i told you all that the Ezra and Ayla did not know about this trip in the least bit. We were able to keep everything a surprise! Which was amazing in and of itself b/c in a small house pack 4 people to go away for a week is not easy!
Every detail was not given to them until they were faced with the surprise. The morning we left, the limo pulled up and the kids stared at it...until Ryan said, "Well....get in." They were extatic...big smiles all around!
They didn't know where we were going when we got to the airport, until we were in the air the pilot announced, they didn't know about Give Kids the World Village and all that that entails until we arrived, they didn't know about Disney, Star Wars Jedi training, meeting Mickey and Minnie, Santa, Sea World...none of it until it was happening.
Give Kids the World met us at the airport with a little special sign that said, "Ayla Hewitt."
For those of you that don't know, Give kids the world is a village built for wish children from all over the world. It really has an amazing story behind it. It really is a special little village where all the worries and struggles families face with children who are ill face disappear for a week. All you see on every families face is joy and hope. The sorrow and worry is gone for that time spent there. The village itself fills 1500 volunteer hours every week, with only 30 paid employees. I would say there are about 100 villa's or so. There are 2 pools, one with a huge splash pad, fishing, ice cream from early morning until late night, a boundless playground, arcade, mini golf, nature trails, castle of miracles, carosel, horseback riding, and the list goes on with events that they plan every day. We were able to celebrate Halloween as well as Christmas at the village.
Every thursday was Christmas in the village, so they play Christmas music, set out Christmas decorations, and have parade and Santa after dinner. After you meet Santa you step outside where the kids are faced with 2 great big racks of toys that they get to choose a toy from.
I should also add, that everything at the village is free. They take care of everything...all you could think of for that amazing week. I didn't have to cook for the whole week...not even pour cereal! We had a hot breakfast, lunch, di
nner every day that was deliscious. Not the mention ice cream whenever we wanted!
They provided us with tickets for all the disney parks, sea world, and universal. We did Magic Kingdom first and we able to see everything we wanted and still be back for dinner b/c of our Make a Wish pass, we didn't have to wait in lines at all...which was great! We did Hollywood Studios where Ezra got to attend the Jedi training academy and fight Darth Vader, which would not have happened had it not been for Make A Wish, at Universal we enjoyed Suess Landing (where the Dr. Suess village is) as well as the Curious George play area (Ayla's fav b/c she got to play in the water in her clothes!!!), as well as we got to go to Disney Downtown and spend money that they gave us for Souveneirs...it was nice to for once not to have to avoid a store b/c you know you don't have enough money to buy anything there. Ezra got to build his own to take home Lightsaber and Ayla bought a pair of sparkley sleeping beauty dancing shoes.
Each day when we returned home there were little "treats" left in our villa. They ranged from board games to movies, stuffed animals to small toys. I was so glad a friend suggested to bring an Extra bag for the "stuff" we would get while staying there. Good thing we brought a hockey bag...
I would say Ayla had two favorite things in the village. The first was a carosel with all different kinds of animals...you could ride it every day as many times as you wanted. I'm almost sure she rode every animal on it. The second, was a spa they had open every evening. There you could get spray tattoos, face painting (her ultimate fav), manicures, and hand massages...(and also a surprise My Little Pony lunch box which she carries almost every where now). She and Ezra had their face painted almost every night.
A couple mornings a week characters from the different parks come to the village. We met Mickey and Minnie (Ayla played shy) and got pictures with them, as well as Goofy, Pluto and Belle (from Beauty and the Beast...Ezra's favorite princess b/c she said she knows all about Jedis." Also for The Pirate and Princess party they have every friday night, SHamu and Dolly the Dolphin come dressed up for the party. Ayla preferred the be a pirate by the way...i'll include a picture:)
There's much more i could say but i won't carry on any longer...other than to say that we are truly thankful for this opporunity. We thank the Lord for the rest that we had and the restoration that he provided through it. We were growing quite weery the week before we left.
He knew that...
So here i am...hopefully this is my final attempt. Part of what i think makes it hard is that i can't even convey in words out loud or written how amazing our trip was. I don't think i realized how much it was needed until we returned home.
We all felt really rested and restored despite the constant entertainment and excitment our Make A Wish week held. This coming 2 weeks later...
I understand that many of you probably don't need every specific detail of our trip...but i can't possibly explain to you without giving some details about the blessings we were showered with.
I'm fairly certain that i told you all that the Ezra and Ayla did not know about this trip in the least bit. We were able to keep everything a surprise! Which was amazing in and of itself b/c in a small house pack 4 people to go away for a week is not easy!
Every detail was not given to them until they were faced with the surprise. The morning we left, the limo pulled up and the kids stared at it...until Ryan said, "Well....get in." They were extatic...big smiles all around!
They didn't know where we were going when we got to the airport, until we were in the air the pilot announced, they didn't know about Give Kids the World Village and all that that entails until we arrived, they didn't know about Disney, Star Wars Jedi training, meeting Mickey and Minnie, Santa, Sea World...none of it until it was happening.
Give Kids the World met us at the airport with a little special sign that said, "Ayla Hewitt."
For those of you that don't know, Give kids the world is a village built for wish children from all over the world. It really has an amazing story behind it. It really is a special little village where all the worries and struggles families face with children who are ill face disappear for a week. All you see on every families face is joy and hope. The sorrow and worry is gone for that time spent there. The village itself fills 1500 volunteer hours every week, with only 30 paid employees. I would say there are about 100 villa's or so. There are 2 pools, one with a huge splash pad, fishing, ice cream from early morning until late night, a boundless playground, arcade, mini golf, nature trails, castle of miracles, carosel, horseback riding, and the list goes on with events that they plan every day. We were able to celebrate Halloween as well as Christmas at the village.
Every thursday was Christmas in the village, so they play Christmas music, set out Christmas decorations, and have parade and Santa after dinner. After you meet Santa you step outside where the kids are faced with 2 great big racks of toys that they get to choose a toy from.
I should also add, that everything at the village is free. They take care of everything...all you could think of for that amazing week. I didn't have to cook for the whole week...not even pour cereal! We had a hot breakfast, lunch, di
nner every day that was deliscious. Not the mention ice cream whenever we wanted!They provided us with tickets for all the disney parks, sea world, and universal. We did Magic Kingdom first and we able to see everything we wanted and still be back for dinner b/c of our Make a Wish pass, we didn't have to wait in lines at all...which was great! We did Hollywood Studios where Ezra got to attend the Jedi training academy and fight Darth Vader, which would not have happened had it not been for Make A Wish, at Universal we enjoyed Suess Landing (where the Dr. Suess village is) as well as the Curious George play area (Ayla's fav b/c she got to play in the water in her clothes!!!), as well as we got to go to Disney Downtown and spend money that they gave us for Souveneirs...it was nice to for once not to have to avoid a store b/c you know you don't have enough money to buy anything there. Ezra got to build his own to take home Lightsaber and Ayla bought a pair of sparkley sleeping beauty dancing shoes.
Each day when we returned home there were little "treats" left in our villa. They ranged from board games to movies, stuffed animals to small toys. I was so glad a friend suggested to bring an Extra bag for the "stuff" we would get while staying there. Good thing we brought a hockey bag...
I would say Ayla had two favorite things in the village. The first was a carosel with all different kinds of animals...you could ride it every day as many times as you wanted. I'm almost sure she rode every animal on it. The second, was a spa they had open every evening. There you could get spray tattoos, face painting (her ultimate fav), manicures, and hand massages...(and also a surprise My Little Pony lunch box which she carries almost every where now). She and Ezra had their face painted almost every night.
A couple mornings a week characters from the different parks come to the village. We met Mickey and Minnie (Ayla played shy) and got pictures with them, as well as Goofy, Pluto and Belle (from Beauty and the Beast...Ezra's favorite princess b/c she said she knows all about Jedis." Also for The Pirate and Princess party they have every friday night, SHamu and Dolly the Dolphin come dressed up for the party. Ayla preferred the be a pirate by the way...i'll include a picture:)
There's much more i could say but i won't carry on any longer...other than to say that we are truly thankful for this opporunity. We thank the Lord for the rest that we had and the restoration that he provided through it. We were growing quite weery the week before we left.
He knew that...
A quick update on the experimental treatment:
She had her 2nd treatment a week ago today. The IV poke went better. One long poke instead of mulitples...so that was good. Still very hard on Ayla but better than the first.
She handles the benadryl better than last time and i think even had some fun while we were there. One for the highlights is that she gets to order breakfast like in a restaraunt...yes, hospital pancakes and home fries. Surprisingly tastey:)
Despite the actual treatment...it's almost "fun". Ryan's parents come down to help with Ezra b/c Ayla requested that he's there with her. So we all play in and out of the room and do crafts and color. When we are there is also the same day the therapy dog comes for a visit and the clowns:) So all in all...it's an okay day. It was actually about and hour and a half shorter this time, which we are very thankful for.
Her next treatment is november 10th and then she see's her Rhuematologist on the 18th...and we will see if she notices any difference.
Please continue to pray for this experimental med...that it would work for Ayla.
Lots of love and thanks.
Lacy
That sounds like a wonderful charity! Thanks for sharing. I'm so glad that you guys had a wonderful time. I'm also glad things are going okay for Ayla's treatment.
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