Jonah's wish trip *pictures added*

[zeppy68]

I dont even know where to begin when it comes to packing.

You guys have a few days on us but our suitcases are still in the attic.


I'm more concerned how to pack weather wise in Florida



Joe

ians pre trip report
http://www.disboards.com/showthread.php?t=1958228

 

[HeatherSue]

I love the new pictures!! It's so sweet that Jonah wants to hug his stuffed animals now. Sawyer just likes to throw his on the floor!

 

[bex271]

I dont even know where to begin when it comes to packing.

You guys have a few days on us but our suitcases are still in the attic.

I'm more concerned how to pack weather wise in Florida

Joe

ians pre trip report
http://www.disboards.com/showthread.php?t=1958228

Joe,
i'm packing a little bit of everything. For Jonah i'm packing a couple pair of shorts, jeans, long and short sleeve shirts. For me I'm packing jeans and capri pants and long and short sleeve shirts and for Kristian jeans shorts and long and short sleeve shirts. Light jackets for all of us. On another board i found accuweather.com it has weather forecast for up to 15 days so i keep checking it and see what the weather is doing.

I love the new pictures!! It's so sweet that Jonah wants to hug his stuffed animals now. Sawyer just likes to throw his on the floor!

If Jonah doesn't want them he will throw his down on the floor too, but the ones that are really fluffy and soft he holds on to those the longest.

becca

 

[bex271]

I got another email from our MAW coordinator yesterday and we are just waiting now to hear from our MAW volunteers about when the Wish Presentation sis going to be. She told us that they did get us a minivan so that it'll accommodate Jonah wheelchair instead of a car, I was so happy to hear that. I'm hoping to hear from the volunteer soon and i'm going to try and get the presentation set up for next Saturday, when DH is home.

We have something exciting planned for this saturday. We have a local children charity that only helps kids in our community that have medical issues. They will help cover hospital bills or what insurance doesn't cover or they will help buy equipment for kids too. Every year they have a motorcycle ride and a concert that follows. We are planning to watch the ride (it comes right in front of our house) We watch it every year. I get all teary eyed watching it because they all wave to Jonah and some of them throw beads to him. We've never been to the concert but we do enjoy watching the bikes. There 100s of them. We have to turn Jonah's hearing aids off because it gets so loud but it is a wonderful sight to see and know what they are raising money for, I've even seen some of the guys shed a tear when they see Jonah. O.k. this is long enough and I'm getting teary eyed just thinking about it.

becca

 

[bex271]

Thank you Karen (Karebear1) for the scrapbook. I can't wait to put pictures in it of our trip. It is the neatest scrapbook I've ever seen. I will finish it and would love to share it with you and the disboutique gang.

Thank you Amy (clutterbug) for Jonah's autograph book. I've already been working with him on handing the character the pen. He's getting the hang of it already.

I'll have to post pictures later because my batteries have run out and i can't find any right now.

becca

 

[bex271]

Amy, I wanted to ask you where you got the pen so we can have some extras on the trip and they are the perfect size for Jonah's hand too.

becca

 

[Clutterbug]

Hi Becca! I haven't checked your TR in a while and I love the new pictures!

I'm glad you and Jonah like the autograph book. I honestly don't know for sure where I got that pen. It was a multi-pack that I picked up when I was looking for books for Clay and Shay Lynne. I want to say that they came from the dollar store, but I went several places at the time looking for the supplies that I wanted. If I am over that way again in the next few days, I'll check for you.

 

[bex271]

Maroo,
thank you so much for the bracelet it fits perfectly. I've got to get batteries for my camera so i can take pictures.

On to Jonah news, I had to take him back to the peds office today, he has been on antibiotics for 20 days now and he is still having stuff coming from his trach and nose. So he is on musinex (sp) for the weekend to see if that will help any and if it doesn't then he'll have to go to the hospital and have is trach cultured so we know what we're dealing with and he can get the right antibiotic if needed. So far though it's clearing up a little so keep your fingers crossed that it is going to pass and we aren't going to have cultures done. I'm thinking it's because of the crazy weather we're having that doing it to him but I don't know. He's never had to be put two different antibiotics before.

becca

 

[maroo]

Maroo,
thank you so much for the bracelet it fits perfectly. I've got to get batteries for my camera so i can take pictures.

On to Jonah news, I had to take him back to the peds office today, he has been on antibiotics for 20 days now and he is still having stuff coming from his trach and nose. So he is on musinex (sp) for the weekend to see if that will help any and if it doesn't then he'll have to go to the hospital and have is trach cultured so we know what we're dealing with and he can get the right antibiotic if needed. So far though it's clearing up a little so keep your fingers crossed that it is going to pass and we aren't going to have cultures done. I'm thinking it's because of the crazy weather we're having that doing it to him but I don't know. He's never had to be put two different antibiotics before.

becca

Yikes!! I will definitely be praying for him and you guys!!

You are very welcome for the bracelet! I am so glad that you like it!

 

[oklamomof4boys]

Maroo,
thank you so much for the bracelet it fits perfectly. I've got to get batteries for my camera so i can take pictures.

On to Jonah news, I had to take him back to the peds office today, he has been on antibiotics for 20 days now and he is still having stuff coming from his trach and nose. So he is on musinex (sp) for the weekend to see if that will help any and if it doesn't then he'll have to go to the hospital and have is trach cultured so we know what we're dealing with and he can get the right antibiotic if needed. So far though it's clearing up a little so keep your fingers crossed that it is going to pass and we aren't going to have cultures done. I'm thinking it's because of the crazy weather we're having that doing it to him but I don't know. He's never had to be put two different antibiotics before.

becca

Oh, poor Jonah! I hope he gets better soon! We'll be praying for him. The motorcycle ride sounds so cool. Have a great time!

Carol

 

[macntosh]

Maroo,
thank you so much for the bracelet it fits perfectly. I've got to get batteries for my camera so i can take pictures.

On to Jonah news, I had to take him back to the peds office today, he has been on antibiotics for 20 days now and he is still having stuff coming from his trach and nose. So he is on musinex (sp) for the weekend to see if that will help any and if it doesn't then he'll have to go to the hospital and have is trach cultured so we know what we're dealing with and he can get the right antibiotic if needed. So far though it's clearing up a little so keep your fingers crossed that it is going to pass and we aren't going to have cultures done. I'm thinking it's because of the crazy weather we're having that doing it to him but I don't know. He's never had to be put two different antibiotics before.

becca

We are in the same boat. Aidan has had so much snot, that I think we could build a mountain out of it. Fun Trach Jokes huh? Hope he get's feeling better. We are targeting his with better bronchial cleaning stratagy. He had not used albuteral in so long we didn't know even if he doesn't need it to use it to keep the airway clean of foreign substance.

 

[bex271]

We are in the same boat. Aidan has had so much snot, that I think we could build a mountain out of it. Fun Trach Jokes huh? Hope he get's feeling better. We are targeting his with better bronchial cleaning stratagy. He had not used albuteral in so long we didn't know even if he doesn't need it to use it to keep the airway clean of foreign substance.

You gotta love a good trach joke. We've never used albuteral with Jonah. He is rarely sick so this is what has us so confused. We are using a lot more saline and suctioning a lot. So far the musinex has worked. His snot has gone from yellow to clear so that's a good sign. I'm going to have to remember to pack his musinex for the trip. We're having to empty the snot trap on the suction machine 2 times a day right now when normally we only empty it first thing in the morning. I hope Aidan starts to feel better soon too.

becca

 

[bex271]

My arm is so tired right now, after waving and helping jonah wave to over 1000 bikes. Our neighbor's daughter came and sat with us, her brother was riding in it and said there were at least 1500 bikes registered this year. I'm sorry i didn't get any pictures of it because i was holding Jonah and waving. We got our picture taken though by a couple who rides every year and recognized us and wanted a picture of Jonah. We sat outside waving for 45 mins. They even have police escorts leading the way. We had a good time watching them and seeing the different style bikes. Our favorite was Santa Claus and one that had a trailer for his dog. This is the web site angel-ride.com they have pictures from the last few years if you want to see what i'm talking about. There were so many going the the ground was vibrating and that really got Jonah going. He even waved a couple of times by himself. I get teary eyed every year they come by because they all either rev up their engines for him or beep their horns.

becca

 

[RobinFabulous]

I know. The way he acts it seems like NO ONE (being sarcastic) pays attention to him at home or at school. I think he doesn't like sharing his nurse,teacher, or aid with the other 2 kids in his class. He has 2 days a week when it's just him and the three ladies and of course they spoil him rotten. Friday was a day he had to share them. He's a mess. He's been happy all weekend.


I think that's one of my new favorite pictures of him. He's just getting to where he wants to hug stuffed toys and i love it. I'm happy too that our financial situation is getting resolved. It's a huge weight lifted our shoulders right now.


Robin, I love your son's name LOL Thank you for reading about his trip. We're really excited too. He's going to have a fun time in December. Where in alabama are you?

becca

We're really close to Auburn, but on the GA/AL border. I've seen more Jonah's lately. The other day we saw a family with a huge monogrammed diaper bag and I got really excited because I thought it said "Jonah" but when we got closer it was "Josiah"

 

[bex271]

We're really close to Auburn, but on the GA/AL border. I've seen more Jonah's lately. The other day we saw a family with a huge monogrammed diaper bag and I got really excited because I thought it said "Jonah" but when we got closer it was "Josiah"

We live on the coast now but i grew up near auburn on the AL/GA border, Phenix City. Jonah has become a popular name lately. I'm hearing it more and more

becca

 

[bex271]

The bracelet that maroo made for me THANK YOU!!!!!!

Jonah and his autograph book made by Amy (clutterbug) THANK YOU!!!!!

better picture of the autograph book

Jonah and our scrapbook made by Karen (Karebear) THANK YOU!!!!!

picture of the scrapbook

I think that's enough pictures for this post

becca

 

[oklamomof4boys]

My arm is so tired right now, after waving and helping jonah wave to over 1000 bikes. Our neighbor's daughter came and sat with us, her brother was riding in it and said there were at least 1500 bikes registered this year. I'm sorry i didn't get any pictures of it because i was holding Jonah and waving. We got our picture taken though by a couple who rides every year and recognized us and wanted a picture of Jonah. We sat outside waving for 45 mins. They even have police escorts leading the way. We had a good time watching them and seeing the different style bikes. Our favorite was Santa Claus and one that had a trailer for his dog. This is the web site angel-ride.com they have pictures from the last few years if you want to see what i'm talking about. There were so many going the the ground was vibrating and that really got Jonah going. He even waved a couple of times by himself. I get teary eyed every year they come by because they all either rev up their engines for him or beep their horns.

becca

Very cool! Thank you for sharing that with us!

Carol

 

[maroo]

1000 motorcycles!!!!!! WOW...

We used to have something like that that would come by my old job...and we would watch from our windows...but no where NEAR that many motorcycles!!!! Wow!!

Loved the pics of the Big Give stuff!! I am glad you like the bracelet. I wanted to do something nice for you for your trip! I know you guys are going to have a wonderful time!!!!!

 

[bex271]

Jonah finally had a good night free of snot and slobber, but i woke up with it. I'm taking musinex and I feel o.k. I'm just going through a box of tissues and hand sanitizer like crazy. I'm hoping we get it kicked this week so we can have a sick free vacation.

becca

 

[oklamomof4boys]

Jonah finally had a good night free of snot and slobber, but i woke up with it. I'm taking musinex and I feel o.k. I'm just going through a box of tissues and hand sanitizer like crazy. I'm hoping we get it kicked this week so we can have a sick free vacation.

becca

I am so happy Jonah is better- I hope you get better soon! Have you ever tried a sinus rinse? It is wonderful for colds/allergies. When I worked for a rehab company we had an ENT come and talk to us and he said a sinus rinse is the singlemost effective treatment for allergies, colds and the best prevention for a number of things. Last weekend, I was coming down with something- my nose was running constantly and I was sneezing, etc. I hadn't used my sinus rinse in a while. I started using it 2x a day and in 2 days was completely fine. Now I am using it preventively. It is a little difficult for some to get used to at first ( I have a hard time getting my boys to do it) but once you are used to it, you will absolutely love it.

Carol