Jonah's wish trip *pictures added*

[mom2lilnick]

Great pics!

 

[zeppy68]

hi we will also be going to gktw same time as your family.

I also started zeppy 68 ians wish trip thread.
We are counting down also excitemnt is coming soon

 

[Stephres]

Oh I am so happy the outfit fits him! I can't wait to show Megan in the morning, she will be so excited!

His Cars pillowcase is awesome too, very beautifully personalized for him too!

I have a hard time finding clothes to fit Megan too; she is a skinny minnie! That's why it's nice to sew for her. Jonah just needs more custom clothes!

That is so nice they are going to have a lot of equipment he needs right there for you. I am sure that takes a lot of your mind.

 

[bex271]

hi we will also be going to gktw same time as your family.
I also started zeppy 68 ians wish trip thread.
We are counting down also excitemnt is coming soon

That is so cool, maybe we can see meet up for ice cream.

becca

 

[bex271]

Oh I am so happy the outfit fits him! I can't wait to show Megan in the morning, she will be so excited!

His Cars pillowcase is awesome too, very beautifully personalized for him too!

I have a hard time finding clothes to fit Megan too; she is a skinny minnie! That's why it's nice to sew for her. Jonah just needs more custom clothes!

That is so nice they are going to have a lot of equipment he needs right there for you. I am sure that takes a lot of your mind.

Jonah is a tall skinny guy. I have to buy him 4T and take the waist up. I'm going to ask for a sewing machine for christmas (i think) and try to teach myself while he's at school.
The last time that we flew with Jonah was 3 years ago and they ended up loosing his equipment and didn't find if for 2 or 3 days, so we are so happy that we're not having to worry with it and it will free up a suitcase too.

becca

 

[bigdisgrandma]

Great that they made those equipment arrangements for Jonah! When we got to the villa, the oxygen concentrator that they had arranged for Karlyn was already in her bedroom! It was so nice not to have to worry about it!

Love Jonah's new clothes. He will certainly be a hit on his trip!

Have a wonderful day!
Denise

 

[bex271]

I can't wait till Friday, because we are going to bring jonah's stander home from school for the weekend. I'll actually get to put him in it and watch his enjoyment. His nurse and teacher say it's has helped him a lot at school and if they could they would leave him in it all the time because something in his brain wakes up and he does better with his work and his play. This is his nurses second year with him so she has seen a huge improvement in him. I can't wait to get pictures and be able to show everyone what a big boy he is.
His PT said Tuesday that she would love to be able to teach him how to walk. That is music to my years that she thinks she might be able to teach him to do that one day.

On the trip front the planning has come has slowed quite a bit, we have 42 days left and I actually got DH to sit down and help pick out where he wants to eat while at the park.

Animal Kingdom
Yak and Yeti (Counter Service)

MGM
Toy Story Pizza Planet

Epcot
Tagierine Cafe

Magic Kingdom
Crystal Palace ADR is 2:10

I'm going to start transferring all my notes from my big notebook to either index cards or my little notebook and start making my packing list

 

[bex271]

Everyone
Clothes (pants, shirts, shorts, and jonah's big give outfits)
Shoes
Toiletries (shampoo, conditioner, toothpaste, toothbrush, deodorant)

Jonah's Supplies
diapers and wipes
Suction catheters (about 20 or 30)
feeding bags (6)
Bolus syringes (7)
Saline
Filters (7)
Pedi Sure (32 cans)
Suction Machine
Feeding pump
extra g-tube
extra trach
"go bag" for the trach
MAW is getting the rest of his equipment, I'm going to take on bottle of sterile water just in case they don't have it and if they don't we can use distilled water.

I know i'm missing something but that's why i'm making my list now so i can add to it as time goes by. I'm looking at past packing lists of when we go to my mom's or go for dr visits in birmingham.

I'm hoping to be able to fit everything in 2 suitcases and take an extra duffel bag for all his souvenirs or i might ask if i can ship some of the supplies down the week before we leave.
We're getting excited around here we have a little over a month left to go.

becca

 

[mom2lilnick]

How exciting! You are starting to get closer!

 

[bex271]

this is Jonah in his stander last night. He loves being in that thing and plays with his toys better just thought i would share our excitement of him being up right.

becca

 

[Stephres]

Megan told me to tell you that Jonah looks cute in his clothes, lying on the floor. And his stander is cute!

Hope you have a great trip!

 

[bex271]

please tell Megan thank you from Jonah and I.

Becca

 

[bex271]

We are at 39 days so we have broken into the 30s now OMG I can't believe it is getting closer.

becca

 

[bex271]

I went to get jonah from pre-k yesterday and he had gotten sick while at school, he had yellow junk coming out every where, so i called the doc and was able to get in 20 mins later. He has a bad sinus infection, so he is on augmentin, for 10 days, but she said he should be good to go back to school on monday if he hasn't run a fever by then. He didn't show any signs of this when i sent him so school, so i asked his nurse to call me next time so i can pick him and not get the other kids sick. He also got his flu shot yesterday too and we are going to have to make sure we give him his vitamin everyday to hopefully keep him from getting sick before our trip. Now that he's gotten his shot he should be o.k. We are lucky that even with him having the trach he doesn't get sick to often, the last time he was on antibiotics for an infections april or may. The season changes seem to be when he gets sick. Well, that's enough of that. We haven't done anymore planning right now just counting down the days. I'm going to call MAW next week and see what time our flights are so we can decide whether or not to get someone to take us to the airport or drive and the van.

becca

 

[oklamomof4boys]

I hope Jonah is feeling better soon! I love all the pictures-Johah looks so cute in all his clothes!

Carol

 

[bex271]

We only have a month to go before we are off to the magical world of disney and GKTW. We're getting excited. Jonah is feeling better, but is staying home one more day just to be on the safe side.
I forgot (i think) to mention that Jonah got student of the month at his school for pre-k class. He has his picture hanging up in the hallway. I think it's one of the best pictures he's ever taken. He like the asst principal and that's who took his picture. We're just so proud of our little guy i have to brag on him a little bit.

becca

 

[oklamomof4boys]

We only have a month to go before we are off to the magical world of disney and GKTW. We're getting excited. Jonah is feeling better, but is staying home one more day just to be on the safe side.
I forgot (i think) to mention that Jonah got student of the month at his school for pre-k class. He has his picture hanging up in the hallway. I think it's one of the best pictures he's ever taken. He like the asst principal and that's who took his picture. We're just so proud of our little guy i have to brag on him a little bit.

becca

Yea for Jonah-both on feeling better and being student of the month!

Can you believe our trips are almost here?

 

[bex271]

Yea for Jonah-both on feeling better and being student of the month!
Can you believe our trips are almost here?

No i can't, I'm getting so excited about it . We need to meet up while we're down there.



On a bad note, i've got to take jonah back to birmingham the abutment they just did the revision on came loose last night and so i'm having to take him back up to have it looked at, and we're worried that it didn't take like we thought it did. The only other option is to redo the whole thing over again. We're not going to do that right now. He needs a break from surgery and i don't think i could handle it again right either. I'm hoping they can fix it and not have to have surgery, but it's won't tighten at all with the screwdriver, they gave me. So I'm packing our things up and then off we'll go.
This is the first time i've gone by myself too, so that has me a little worried too. I normally have my mom or dh with me to help. so this is going to be new adventure for us.
Well, i've got to go finish packing. i'll up date when i get home

becca

 

[mom2lilnick]

Hugs, I hope everything goes okay and he doesn't need another surgery. Thinking of you both.

 

[bex271]

Jonah is doing o.k. we're still at my parents house. We saw the doctor yesterday and while sitting in the exam room the darn abutment fell out, and the doctor came in 10-20 mins later and couldn't get it back in because Jonah heals so fast the soft tissue had already closed around what is in the skull. My son has super human healing powers LOL. The only way to be able to get to screwed back in now is for him to open the hole again in surgery so we opted to let him heal up for now and then go back and put it in after our trip or wait a little bit longer, maybe after christmas and just let him have a little time not to be having surgery.
We only have 28 days left before we leave for WDW. I talked to MAW today and we are leaving at 10:34 am central time have a 50 min lay over in Atlanta and then get to Orlando at 2:53 p.m.
Well i'm going to get back to Jonah. I just wanted to give y'all a brief up date

becca