Jonah's wish trip *pictures added*

[bex271]

o.k. now that the in-laws are on their way home and i can get to the computer and have a little quiet time here is what happened with all this appointments.
We saw all of Jonah's specialist, last week except the neurologist. We saw his urologist, a couple years ago we found out that his right kidney was slightly turned and that he had fluid around it also, so he was going to be prone for kidney stones, they did an ultrasound and the kidney is back to normal and we just have to see this doctor once a year We saw his plastic surgeon and everything still looks good from his end and no surgeries planned for several years and we have to see him just once a year. Then we saw his ENT who follows him for his trach and his hearing. Everything looked good to him so far but we're going to have the trach for a very long time, they scoped him in the office (which Jonah was not a happy camper at all during the procedure) and he has so many secretions that he can't handle so that's one big reason to have the trach and then with his airway already being so small with his tonsils and tongue being fused together he just has a double whammy and the ENT doesn't want to put him through anything else right now but he did say everything is looking trach wise is looking good and we don't have to see him for another year.
We also saw the g-tube nurse and the nutritionist and got his feeds upped so he can gain weight and height and the g-tube still fits and we don't have to see them until the tube fits tight against his tummy.
In all we don't have to see his docs for year which is great since we've been seeing the ENT every month since march it's going to be nice to be able to finally unpack the suit case and stay home.
The only person we have to see up there is the audiologist in sept. and hopefully she'll say see you next year too.
We had a good trip over all and it's nice to know that he's healthy.
Now we can start getting ready for school to start knowing we don't have anything new to worry about and he can be kid for a while.

As far as on the planning front it's taken a back seat for now with school starting next week I've gotta start getting uniforms together and i still haven't gotten a supply list and stocking up on diapers and wipes and medical supplies for him to have a school.

I think i've talked enough for now so i'm going to hopefully get caught up with all my ptr and tr that i missed while we were gone. Have a happy monday.

becca

 

[bex271]

Ugh- just when I thought I was caught up with reading all the PTRs, I find out that I'm not! I remember someone telling me that their trip was going to overlap with ours. Then when I saw Amber's list of all the trips, I started searching out all the PTRs ( my 3 oldest are at church camp so I have a little extra time).

I too am a SLP who loves Disney! I love hearing reports of good therapists and it sounds like you have some great ones. You mentioned driving to therapy once and then remembering it was cancelled. Once I drove 50 miles to one of the schools I work at and found an empty parking lot. They forgot to tell me school was out that day!

Do you know your flight times yet? Will you be to GKTW in time for the Christmas party that night? I sure hope so! We will look for you. We will also be at MVMCP on Friday!

Jonah is so cute and the progress he's making is wonderful. I have learned as a therapist a lot of the time, the amount of progress children make is due to the carry over work the parents do at home. You are doing a wonderful job with your beautiful son!

No, we don't have a flight schedule yet I'm hoping we're going to get in before the christmas party because i really don't want to miss it. If we don't get there in time maybe we'll bump into each other around the village or at MVMCP.

We love our therapist, we are actually seeing one of his old therapist today because his ot is going to be out of town so his old one is coming in to see her patients (or her kids as she calls them).

We're proud of his progress too. I try to work with him with whatever we're doing at that time. I've learned taking him shopping is a good teaching tool. He loves looking colors, he helps me pick out what color shirts i'm going to get that time.

becca

 

[bex271]

Jonah is getting a new bed. He is going to officially be a big boy. He is finally getting out of the crib. Thanks to my in-laws. We went saturday and spent most of the day in rooms to go figuring out which bed would be the best and last him longest. We finally decided on a daybed and got so bed rails to secure him in on the open side. I can't believe my little baby is now a big boy. It's going to be delivered saturday at some time. We have a set a sheets already, but we are going this weekend to pick up more stuff for his room and turn it from a winnie the pooh to a cars room (i think). We rent our house so painting the room is out of the question. So any suggestions of where we can find some cool disney posters would be wonderful.

becca

 

[Goofyluver]

Yay for all of the good news from the docs. Doesn't it feel soooo good to walk away satisfied!!!

And yay for the big boy bed!

 

[bex271]

I'm back now that the in-laws have gone home, kristian is back at work and jonah is back in school. I can start looking at things to do at universal and IOA again. I can't believe we are almost in the double digits here.

Jonah started school today, here is a picture before we left.

We're hoping for a descent year because all his friends from last year are in a different preschool class so i'm hoping he'll adjust to the ones in his class year and not let their behavior rub off on him.

He has enjoyed his new big boy bed and is sleeping pretty good in it.

Can you tell he likes cars. I think we watch the movie at least once a week. I'm going to start getting posters for his room and get him a new night light. I can't believe his a big boy now.

 

[Goofyluver]

Ohhhh...that boy of yours...I could just squeeze him!

Now plan away sistah friend. And have fun!!!

 

[bex271]

We are in the double digits now 99 days to go.
Planning taking another back seat. We're having to deal with some issues at school already, which is taking up most of time that i could be putting towards planning.

becca

 

[bigdisgrandma]

Yeah for double digits.

I love the pictures. What a fun big bed. It is amazing how changing a bed makes a child seem so much bigger. Sorry about the school issues. I hope that they are easily fixed and Jonah can have a great year.

Denise

 

[bex271]

Amber,
Thank you so much for the package. We enjoyed helping jonah tear into it. We didn't think to take pictures because we were so focused on helping him that we just forgot to snap pictures. His favorite thing is the spiderman dry erase board. When we pulled it out and showed him, he took it from me and hugged it and wouldn't let go. He liked the goofy figurine and held it for a while and looked at it. I can't thank you enough. The picture the Sebastian colored was great too.
Here is the only picture i did get(taken this morning) and he did let me put stamps on him. I'm hoping we can get some today of him playing his presents

Thank you again
Becca

 

[bex271]

Well, while jonah is sleeping I've been looking at some of the universal/IOA and i think we are going on cat in the hat for sure and spending a lot of time in suess landing and gonna make sure that dh gets to ride spider man and hop over to universal and ride e.t. We haven't decided about barney yet, we really don't watch it that much but we'll see how it goes.
I'm still working on a plan for that day, but it's a nice break to look at website.

I'm having a meeting with Jonah's resource teacher and head nurse in hopes that we can get the safety issues in class taken care of soon. He is in a class with few children then last year and even the year before and we have never had a safety issue and this year it's have a size and we're having safety issues. You know it's bad when it's suggested for your child to leave the classroom just to be able to get on the floor and stretch out. I don't blame the teacher at all. In fact we love his teacher. The kids in his class were never part of the big group of last year because of their behavior problems and now it's affecting jonah. I'm getting off my soap box right now before my blood pressure gets any higher just thinking of what i've got to do today.

becca

 

[mom2lilnick]

What a sweetie! Love the pics and the big boy bed. I just found these board when we heard that my son was getting a MAW trip last week. They come out on Sun to hear what he wants.. lol, like there is a doubt. I can't wait to read more.

 

[bex271]

Amy,
welcome and thank you for reading. I know you'll find a whole lot of info on the boards. He loves his big boy bed and i can't wait to hear how sunday goes. I'm looking forward to getting to know you and your family.

becca

 

[bex271]

I know i needed this, I talked to our wish granter (haven't talked to her since early this year) tonight, she just called to see how Jonah was doing. She is going to talk to the wish coordinator about putting us on an early flight down to orlando so we can be there in time for the christmas party. We have waited over a year for his wish to happen so he could get over all his surgeries and infections there after so she just wanted to make sure we haven't fallen through the cracks. We have gotten a new coordinator so I may call next week and talk to her directly, but he is going to have a little send off party one or two weeks before we go.

Jonah had an absolutely wonderful week in therapy with speech and ot, but pt was a little off for some reason. He is what he did, he had a field of four (four choices) to pick from for matching (i hope that makes since) and he did 80% or 4 out 5 matching animals. The SLP would hold up an animal toy and then he would have to find the card that matched the toy. If the toy didn't look exactly like the picture she would tell him and he still got it. He picked out which pieces of furniture went in which room, and looked at her funny when she made the wrong animal sound the toy she was hold I was on after that. Then with OT she made him push (with help) the both of them on a scooter board (a seat with wheels) away from the wall and i think they did that for 30-40 mins and he loved it. He's getting so strong.

Oh today he wanted to practice standing and we did that for about 5 mins, up/down, up/down and again. His little legs can only support him a few seconds but he's tried and that's all i ask of him when we start off with new things.

Oh and as far as school goes, they (the IEP team) are putting somethings together help us with his safety issues in his class and the we are meeting again in 2 weeks to see how things are going and if anything needs to be changed. We're hoping that it'll start improving more, but i still have my fears, but at least we got our concerns out in the open.


becca

 

[bex271]

I just talked to our Wish Granter and she talked to the Wish coordinator and we are suppose to receiving some paperwork about GKTW to fill out and then they are waiting on the last Dr. approval since we are getting closer to time to go. She (wish granter) told me to make sure I talk to the coordinator tomorrow and help with the plane reservations and give her all the info for medical equipment that is needed and our coordinator is brand new to doing this so she is probably going to go straight by the book. Only 86 days left to go. I CANNOT BELIEVE IT. It's starting to feel so real now and it's giving us little more excitement.

becca

 

[mom2lilnick]

How exciting!!!

 

[bigdisgrandma]

I know i needed this, I talked to our wish granter (haven't talked to her since early this year) tonight, she just called to see how Jonah was doing. She is going to talk to the wish coordinator about putting us on an early flight down to orlando so we can be there in time for the christmas party. We have waited over a year for his wish to happen so he could get over all his surgeries and infections there after so she just wanted to make sure we haven't fallen through the cracks. We have gotten a new coordinator so I may call next week and talk to her directly, but he is going to have a little send off party one or two weeks before we go.

Jonah had an absolutely wonderful week in therapy with speech and ot, but pt was a little off for some reason. He is what he did, he had a field of four (four choices) to pick from for matching (i hope that makes since) and he did 80% or 4 out 5 matching animals. The SLP would hold up an animal toy and then he would have to find the card that matched the toy. If the toy didn't look exactly like the picture she would tell him and he still got it. He picked out which pieces of furniture went in which room, and looked at her funny when she made the wrong animal sound the toy she was hold I was on after that. Then with OT she made him push (with help) the both of them on a scooter board (a seat with wheels) away from the wall and i think they did that for 30-40 mins and he loved it. He's getting so strong.

Oh today he wanted to practice standing and we did that for about 5 mins, up/down, up/down and again. His little legs can only support him a few seconds but he's tried and that's all i ask of him when we start off with new things.

Oh and as far as school goes, they (the IEP team) are putting somethings together help us with his safety issues in his class and the we are meeting again in 2 weeks to see how things are going and if anything needs to be changed. We're hoping that it'll start improving more, but i still have my fears, but at least we got our concerns out in the open.


becca

I just talked to our Wish Granter and she talked to the Wish coordinator and we are suppose to receiving some paperwork about GKTW to fill out and then they are waiting on the last Dr. approval since we are getting closer to time to go. She (wish granter) told me to make sure I talk to the coordinator tomorrow and help with the plane reservations and give her all the info for medical equipment that is needed and our coordinator is brand new to doing this so she is probably going to go straight by the book. Only 86 days left to go. I CANNOT BELIEVE IT. It's starting to feel so real now and it's giving us little more excitement.

becca

Becca,

What a great day you had yesterday. Or should I say week. Nothing better than Wish trip news and great progress for your "Big" boy at school. I am so glad to hear about his progress in so many different areas. That is wonderful And then to get those things going for the trip I just love good news!

Have a wonderful day today as well. Glad the last storm didn't cause you much grief but I guess that another could be on its way. Stay safe.

Denise

 

[bex271]

I just talked with our coordinator this morning and the reservations for GKTW have been made She is working on the air line reservations, I was able to give her some times that would work for jonah's schedule. They are going to try and get us there in time for Jonah to go to the GKTW christmas party. She is also going to work on getting Jonah's medical equipment set up through a company in Orlando so we don't have to take all his equipment with us if possible. She is also going to try and get us a minivan so we can have room for jonah's wheelchair. That's the update for right now. We're getting excited again

becca

 

[HeatherSue]

Hi Becca! It's so cool to learn all about Jonah! He is such an adorable little boy and you are an amazing mom. I love the picture of him with your dog. How sweet! Jonah's new bed is really nice looking. That should last him for a long time. It's happy and sad at the same time when you take that crib out of the room, isn't it?

I'm loving the pictures and I'm loving hearing about your plans and Jonah's progress. Great PTR!

I'm sure you'll get a few more disboutiquers around here shortly!

 

[bex271]

Heather, thank you, I hated taking the crib down it is 33 almost 34 years old, it was the crib that my sister, myself and my brother slept in when we were little. My mom had to get it refinished where my brother had gnawed on it when he started cutting teeth. I can't wait to meet more disboutiquers
He keeps surprising us more every day. We watch disney movies all the time (of course) but i wasn't sure if he was really paying attention to who the characters were today his speech therapist wanted to see if he could pick out characters and knew who they were. Well, he got Buzz Lightyear, Woody, Spider man, Peter Pan and the Hulk. I was so impressed with my little guy, I think we both were about in tears. Well, he's making his mommy sounds so i gotta go.

Becca

 

[bex271]

I have it in writing that the GKTW reservations have been made. I received a letter from MAW yesterday from our new coordinator and it states that the reservations have been made and she is working on the rest of his wish trip.