Ty-bugs MAW pre-trip to ride Jaws and go to Disney! July 10-16 2010

[cantwaittoseemickey]

Our son Ty was born on time(barely) but has quite a few medical conditions. He has a swallowing disorder that leaves him choking and gagging quite often. He also has a neurogenic bladder and is in the begining stages of preparing for possible reconstructive surgery. He also has spina bifida Occulta and had surgery in May to correct his teathered spinal cord. He is mostly fed by a feeding tube.

Ty was granted a WISH this past November. It did not take him long at all to know what his Wish was. To ride JAWS and go to Disney! We met with the WISH granters and he told them his Wish.His Wish was originally planned to take place on Valentines Day but we had to reschedule so this is his new ptr.

Sierra is our sweet girl who has her own struggles. So this trip will be just as special to her as to Ty. She is so excited to pet the dolphins and see Shamu.

We are arriving July 10th and we will be staying at GKTW.We are beyond excited about this. To be able to stay in a place just like home is just unreal. We just cannot imagine what lies ahead for us. We are so grateful! He has quite a few apts coming up and this will be such a great thing to think about during them.

Im looking forward to making some links and starting over with our Disney nights!!!

Here are some pics so you can put a face with the name:)

Here is our Wish child
Ty
http://i74.photobucket.com/albums/i267/snickerb/TylerdressedupforTitanicdinnerat-2.jpg

Here is big sis
Sierra
http://i74.photobucket.com/albums/i267/snickerb/TylerdressedupforTitanicdinnerat-1.jpg

[reyasmommy]

YAY!!! Hope you and your family have a wonderful, magical trip! :wizard:

[cantwaittoseemickey]

:welcome:Thank you! Wow your trip is very soon!! Have a wonderful trip! I will catch up on your ptr tonight:)


YAY!!! Hope you and your family have a wonderful, magical trip! :wizard:

[Thumper321]

:woohoo: Glad to see that you've started the new PTR. Can't wait to follow along!

[Momofwishkid]

:banana: Im so glad you got your new dates and started your PTR! Cant wait to start following again.

[pipersmom]

Woohooo! Can't wait to follow along again..the time will fly by ;) :hug:

[cantwaittoseemickey]

:woohoo: Glad to see that you've started the new PTR. Can't wait to follow along!

Thank you for finding me again Miranda:). I can't wait to REALLY get going:cool1:

[cantwaittoseemickey]

:banana: Im so glad you got your new dates and started your PTR! Cant wait to start following again.

Hi Jennifer Thanks for finding me again! Im so excited for these new dates. I cannot wait for his upcoming apts to be over with so we can have that hurdle over.

[cantwaittoseemickey]

Woohooo! Can't wait to follow along again..the time will fly by ;) :hug:

Hi Amanda! Welcome to our new PTR! I definately hope the time will fly by. I can't wait to get started!

[cantwaittoseemickey]

Ok Since my birthday is 3 days after we get back from Ty's trip:cool1: we are going to see about celebrating it while we are there. So since this is Ty's trip I am going to see if he wants to plan MY birthday. I just can't imagine what he will pick for his momma. :rotfl2:

This is going to be a very busy summer. I have 2 40th birthday parties to plan, our anniversary is the end of July, Sierra's is in June and Ty's is in September. My mom and dads anniversary will be while we are away as well.

Oh and did I mention that my mom and dad might come with us on this trip? They would be staying on property, and renting thier own vehicle. My dad has dreamed of going to Epcot for years. And my mom wants to go see her aunt so we wouldnt be spending a huge amount of time together but are hoping we could at least fly together and spend a little time together. But they never make plans and its always a "possibility kind of thing". But after Ty's apt and we are sure of thing then Im going to get on them to make their decision final. lol

[noahsketomom]

Hi Tonya!!!

I'm so glad you started a new PTR....and got your new dates! Tell Ty he's a man after my own heart --- I too can't wait for the Jaws ride!! :yay: Silly, but it's on my short list of "must do"!!!

I also can't wait for what he chooses for your bday! Will be one to remember for sure!

Can't wait to follow along....

[Momofwishkid]

How cool is that to get to celebrate your birthday at disney!! Im sure Ty is going to pick something amazing. My DH's birthday is 3 days after we get back also. I think were going to celebrate it at Margaritaville since that's somewhere both Gavin and DH will love.

How exciting that your parents might come along too and I think that will be perfect that they have their own plans but you'll still be able to spend some time with them. :thumbsup2

[kellyw8863]

Yay on revised dates!:cool1::cool1:

[maroo]

i am here!!!

and i added u to the Wish Trippers thread, too! :)

[pnutallergymom]

Soooo excited you have dates again!! Can't wait to follow the planning!! How are you all hanging in there?? :hug:

[cantwaittoseemickey]

Thank you for finding me:) Yeah he is going to LOVE that ride. I hope to get a good pic of him because I plan on putting him on the side that Jaws comes right up to :rotfl2:

I am totally not sure what he will chose probably just pick me something out for my bday that has Mickey on it. That is totally find with me cause I LOVEEEEEE MIckey!!!!
Hi Tonya!!!

I'm so glad you started a new PTR....and got your new dates! Tell Ty he's a man after my own heart --- I too can't wait for the Jaws ride!! :yay: Silly, but it's on my short list of "must do"!!!

I also can't wait for what he chooses for your bday! Will be one to remember for sure!

Can't wait to follow along....

[cantwaittoseemickey]

Thank you I hope so too. No drs. No therapy just having a great time in Disney with our favorite Characters and the most awsome rides!


YAY!!! Hope you and your family have a wonderful, magical trip! :wizard:

[cantwaittoseemickey]

Change of plans already:rotfl2: I knew it. My mom and dad has changed thier minds so lets see if it changes again. We'll see. They just dont want to be a burden on our trip since it is going to be such a once in a life time trip and so much to do they could not keep up. So I told her that is perfectly fine that we would see them as soon as we got back. We will be doing lots of things with them anyways throughout the summer.

[cantwaittoseemickey]

YAYY!! Thanks Maroo!!


i am here!!!

and i added u to the Wish Trippers thread, too! :)

[cantwaittoseemickey]

We are doing great thank you! It was a tough time there through the passing of FIL but we are doing awsome now. Dh had his knee surgery a week ago tomarrow and the difference is amazing. He had to take a little more time off work which is not good but we are glad he can have a little more time to heal. And I have someone to keep me company at home. It has be so wonderful having him home with me during the day.

Can I just say that OMG my child!! He just lost his 3RD CAP this week!! One was VERY loose. And we expected it to come out. Then the other night he found another one just barely loose. Well that one came out before the first one did:rotfl2: then that next night the original cap came out. Well he just walked in and said look. He was holding the 3RD cap:rotfl:And he didnt even know that one was loose!! Crazy I tell ya! That tooth fairy is working overtime with him :laughing:

[cantwaittoseemickey]

This is only Monday?? lol Ty has started Intervention after school in preperation for the big testing. He has that 2 days a week and he also has therapy 2 days a week at one place and another therapy at another place the opposite place (ot pt and oral motor).

Saturday he got choked while he as at my parents with dh and he said he had a really hard time catching his breath afterwards. Then after he got home he choked again and again he had a hard time getting back to baseline breathing.:(. Today he has had more "gunky" stuff and I am really hoping this doesnt mean he aspirated. He is acting fine just a lot of clearing so I think he will be ok. It has been a year ago this month he had his last Aspiration Pnemonia.

On a good note he has been so happy tonight. I love to see his smiles. He is having such a hard time at school and it really does take a toll on him. He says he hates school. Actually everytime his ot told him to print a sentence it was the same sentence over and over. "I hate school". He knows he is struggling. The multiplication facts are really hard for him. Then now we add a longer school day for him well he isnt exactly pleased bless his heart. But to see his smiles in the evening just makes me so happy.

[Momofwishkid]

Im sorry Ty is having some issues and hope it gets resolved soon with no pnumonia!!

[cantwaittoseemickey]

Thank you :)

Yesterday was just not a good day for Ty. While he isnt showing any symptoms from his choking episodes he has had a little bit of increased swallowing symptoms the last few days. Then yesterday I get another call from his teacher that he is just not being himself. He was just very slow to respond and a few other things. I have been suspecting his siezures are uncontrolled again but sometimes it is just hard to tell.That is one possibility. The other one is that I think it could be a pain response. Because when he woke up yesterday he kept falling back to sleep. And his speech was not like usual it was very slow.I had even hooked him up to some extra fluids to see if that would help. His tummy is really giving him a hard time. I will be trying to bump up his summer apt today with the GI. He will also go in for a video EEG in a few weeks just to make sure he doenst need an increase in meds.

On the Disney news (well not mine anyways lol) I just helped my best friend plan her families first Disney Vacation. They are alot like us and have a very low amount they can spend so it wasn't too hard at all. They are unfortunately arriving 3 days after we get back:sad1:Their orginal plans were to arrive a few days after us. Which would have been cool!But they had to change their dates due to his vacation dates.

[noahsketomom]

Tonya,
I'm so sorry to hear that Ty hasn't been doing well recently. :hug: I will be thinking of you and praying that the docs (both the GI and the neuro) get on top of it. I didn't realize that Ty struggled with seizures -- they can be so subtle sometimes (At least they were sometimes with Noah) so I hope that the EEG will help get to the bottom of it. Also praying the seizure beast stays at bay!!!

Prayers for you and him,

[cantwaittoseemickey]

Tonya,
I'm so sorry to hear that Ty hasn't been doing well recently. :hug: I will be thinking of you and praying that the docs (both the GI and the neuro) get on top of it. I didn't realize that Ty struggled with seizures -- they can be so subtle sometimes (At least they were sometimes with Noah) so I hope that the EEG will help get to the bottom of it. Also praying the seizure beast stays at bay!!!

Prayers for you and him,

He has had siezures since he was two. He went a few years siezure free and was taken off his meds until last year when we suspected he was having them again. His eeg and video eeg revealed he was having activity again. That was definately news we didnt want to hear. Thank you for the prayers!

Today was better and his tummy has let up some. He did go to therapy and started out kinda not good but by the end he was perking up. He got to demo a new swing and he loved it. He came home and was having some pain in his lower back. I suspect it has to do with his stomache though and not his back. I was able to get him a gi apt in a few weeks. I would just love to know why his gut seems to be slowing down more.

Ok with that aside I finally sat down to map out the park hours. I also wrote out all the things to do at GKTW and times for each so I can kind of do a tentative Itinerary. I am really leaning towards making reservations (or trying to since it is late) at Chef Mickeys. I need to figure out what park we will be at for what days and times so I can decide which day would be better to go.

Also now that Blizzard Beach will be open and it will definately be warm enough to swim:rotfl2: I would also like to schedule a day to go there. I might do that instead of DHS. As Ty has had Blizzard Beach in his little heart for a while but when we found out it would be closed we put it aside. Now it will be open I know that will be very high on his list.

[pacrosby]

Hey...............I found you! So glad you started a new PTR! Yay on the dates. You've got plenty of time to plan. I'm betting you'll have no problem getting a Chef Mickey reservation so long as you are flexible with times.

Sorry to hear about all current health issues with Ty. I hope you can get some answers, and sooner than later.

Blizzard Beach sounds like a blast ! I sooooooo wanted to do that in December (how perfect for a winter/Christmas trip) but I was afraid it would be too cold so I didn't fit it into our plans. Hurry up and go so I can see your pictures!!!!!!!!!

[cantwaittoseemickey]

We watched a show on Blizzard Beach and he was ready! It does look like alot of fun.

Chef Mickey's would be our first character dinner ever. I am a bit uneasy on how Ty will do but we wont know till we try!

[jenb1023]

:cool1::banana::yay::cheer2: for new dates and a new PTR!

Sorry to hear Ty is struggling health-wise and at school.

[cantwaittoseemickey]

Hi Jen! I was going to wait but the excitement won :rotfl:

Ty had his speech/oral motor session today. He went from talking to basically laying on the table. She had never seen him like this. She totally agrees that the lethargy is related to his constipation. She said this is going to hinder his therapy sessions and we cannot move forward with him struggling so much with it. He did perk up tonight and get his energy back.So that was good to see.

[cantwaittoseemickey]

Finally got a pic of the kids up. There will be lots more to come as the weather warms up. It's getting there! Finally getting near the 50's so I have full confidence it is on the upswing:banana:

[cantwaittoseemickey]

It's a georgous day out finally. Definately getting those Disney goosebumps going!

[jenb1023]

Hi Jen! I was going to wait but the excitement won :rotfl: He did perk up tonight and get his energy back.So that was good to see.

Glad the excitement won and that he perked up a little!

Finally got a pic of the kids up. There will be lots more to come as the weather warms up. It's getting there! Finally getting near the 50's so I have full confidence it is on the upswing:banana:

It's a georgous day out finally. Definately getting those Disney goosebumps going!

Cute kid pics! I am in PA and the weather yesterday and today is amazing!

[kellyw8863]

This is only Monday?? lol Ty has started Intervention after school in preperation for the big testing. He has that 2 days a week and he also has therapy 2 days a week at one place and another therapy at another place the opposite place (ot pt and oral motor).

Saturday he got choked while he as at my parents with dh and he said he had a really hard time catching his breath afterwards. Then after he got home he choked again and again he had a hard time getting back to baseline breathing.:(. Today he has had more "gunky" stuff and I am really hoping this doesnt mean he aspirated. He is acting fine just a lot of clearing so I think he will be ok. It has been a year ago this month he had his last Aspiration Pnemonia.

On a good note he has been so happy tonight. I love to see his smiles. He is having such a hard time at school and it really does take a toll on him. He says he hates school. Actually everytime his ot told him to print a sentence it was the same sentence over and over. "I hate school". He knows he is struggling. The multiplication facts are really hard for him. Then now we add a longer school day for him well he isnt exactly pleased bless his heart. But to see his smiles in the evening just makes me so happy.

This makes me so sad for you guys. What grade is Ty in? This is honestly my biggest fear with Ali. She's just starting to realize that she's different from other kids her age, and she doesn't like it. At all. She's always been my sweet and innocent "baby," and I'm so worried that will all change once she starts school next fall. I'm sorry you guys are dealing with this now.:hug:

Hi Jen! I was going to wait but the excitement won :rotfl:

Ty had his speech/oral motor session today. He went from talking to basically laying on the table. She had never seen him like this. She totally agrees that the lethargy is related to his constipation. She said this is going to hinder his therapy sessions and we cannot move forward with him struggling so much with it. He did perk up tonight and get his energy back.So that was good to see.

We see the same thing with Ali. When her constipation is bad, all bets are off. To look at her, you would think that she's having a mito crash, but within minutes of finally going, she's like a totally different kid. What does Ty take for meds?

I'm glad you're having beautiful weather there. Feel free to send some up north!

[cantwaittoseemickey]

This makes me so sad for you guys. What grade is Ty in? This is honestly my biggest fear with Ali. She's just starting to realize that she's different from other kids her age, and she doesn't like it. At all. She's always been my sweet and innocent "baby," and I'm so worried that will all change once she starts school next fall. I'm sorry you guys are dealing with this now.:hug:


Ty is in 4th grade. He started understanding that he was different last year. And honestly he has no idea what to say when kids ask him questions. We have tried to work with him on it but he rather just not say anything. I wish it was different as he has alot he could teach them. I believe most of it is steming from his swallowing. When he eats or drinks anything by mouth he has to constantly clear his throat and nasal passages and it is rather loud. The kids have told him to stop numerous times as well as some teachers. But for the most part I think we have it worked out for this year until all the new teachers and kids next year. His oral motor therapist is also working on things to say to let them know he has to do this but he just isn't as detailed when talking like that unless it is something he is really interested in;)

We see the same thing with Ali. When her constipation is bad, all bets are off. To look at her, you would think that she's having a mito crash, but within minutes of finally going, she's like a totally different kid. What does Ty take for meds?

We were orginally thinking this is siezure activity but something made me think it was pain response and it seems to add up more.His pupils get very big and he becomes so lethargic.He becomes very pale.I always think of Mito with Ty. But he had the muscle bx and it came back as nothing to do with mito. It said type I myofibers, rare which I guess didn't mean anything. His blood work has always either came up normal or with something that doesnt make sense so they dismiss it.Cleveland Clinic believes he has something genetic but that there isnt any tests for it yet and it is undiscovered. Sounds like an I don't know to me. It is all very frustrating. Ty does have alot of the Mito symptoms. Ty is on miralax, senna, benefiber and magnesium citrate for his constipation.
I'm glad you're having beautiful weather there. Feel free to send some up north!

Oh I would love to send some up to you! I think it is supposed to get cold again this weekend though:(

[cantwaittoseemickey]

Glad the excitement won and that he perked up a little!





Cute kid pics! I am in PA and the weather yesterday and today is amazing!

It is georgous isn't it? I think it is supposed to get cold again this weekend. Hopefully they bump up the temps just a little bit.

[cantwaittoseemickey]

I finally made it back to my own ptr. lol

A little update on Ty first. He is doing much better then he was last week. We did take him for an xray on Monday and he was again impacted. So next week he will go to the GI then on Thursday he will go in overnight for a video EEG. Oh how I do not look forward to this as that glue totally sets him off. I dont blame him that is some gross smelling stuff. Then on Friday morning we will be released by 7:15am for a renal ultrasound at 7:45am then to see the urology team at 11:30am so we will have quite a bit of time to spare between the last two apts. Not sure what we will do:confused3 Dh is going to meet me down there before the urology apt. So anyways I am a ball of nerves with this urology apt. They will have a plan for him before we leave and we will go home and discuss it then give them our decision. Right now I just dont think we have a handle on things with him. Gi or urology wise. So maybe after next week we will.

http://i74.photobucket.com/albums/i267/snickerb/039-1.jpg[/IMG]
The light bothers his eyes of a morning so I just turned the lamp on long enough to snap a pick so he had them closed.

[pacrosby]

Oh Tonya, that 100 days is gonna fly don't you worry LOL

Love the px :) Did you request a fairygodmailer? I did that with my kids...such a cute idea.

Good luck with the upcoming appts. Such a double edged sword those appointments arent' they? Hate them and love them at the same time. Anyway, thinking good thoughts for you all :goodvibes

[kellyw8863]

When Ty had the muscle biopsy done, did they send it out for the ETC testing, or did they just run it through pathology? Ali's pathology report was "mostly" normal, too. She had some abnormal aggregates of normal appearing mitochondria, and if we didn't do the ETC testing, it would have been dismissed. But, the ETC was very abnormal. That plus significantly increased alanine pretty much sealed the deal, but then her genetic testing came back with a specific mutation, so we know it's primary. For Ali's constipation, we do bisacodyl and Go-Lytely, though we know we're looking at an ostomy in her relatively near future. We can't keep doing Go-Lytely on a continuous basis because it messes with her electrolytes. We're just trying to put off an ostomy until she can help care for it. Supposedly it has something to do with higher patient satisfaction.

[cantwaittoseemickey]

Oh Tonya, that 100 days is gonna fly don't you worry LOL

Love the px :) Did you request a fairygodmailer? I did that with my kids...such a cute idea.

Good luck with the upcoming appts. Such a double edged sword those appointments arent' they? Hate them and love them at the same time. Anyway, thinking good thoughts for you all :goodvibes

Im not exactly sure what a fairygodmailer is but I definately think that fits her.:lovestruc

They are definately a double edged sword. I can't believe how fast last week went. :eek:

[cantwaittoseemickey]

Kelly Im going to find the copy of Ty's biopsy and I will be back to post. I am pretty sure they did the etc.

[cantwaittoseemickey]

When Ty had the muscle biopsy done, did they send it out for the ETC testing, or did they just run it through pathology? Ali's pathology report was "mostly" normal, too. She had some abnormal aggregates of normal appearing mitochondria, and if we didn't do the ETC testing, it would have been dismissed. But, the ETC was very abnormal. That plus significantly increased alanine pretty much sealed the deal, but then her genetic testing came back with a specific mutation, so we know it's primary. For Ali's constipation, we do bisacodyl and Go-Lytely, though we know we're looking at an ostomy in her relatively near future. We can't keep doing Go-Lytely on a continuous basis because it messes with her electrolytes. We're just trying to put off an ostomy until she can help care for it. Supposedly it has something to do with higher patient satisfaction.

Ty's biopsy says Right calf muscle, open biopsy: Partial atrophy of type I myofibers,rare.The neuro said that was nothing and it was normal.The ETC says everything was in the control range. All of his genetic testing this far has either came out normal or it is non specific.

I completely understand about the go-lytely and electrolytes. The amount of laxitives Ty is on has me a bit concerned. It just seems like his motility is getting slower. Yesterday he was bubbly with energy today he is back to being pale with circles under his eyes. I just don't get it:confused3
I think I need to talk to the ped about an order for sick labs.

[jenb1023]

Love seeing that smile! I am glad Goofy sent him a post card! Good luck with the appointments - it sounds like they are going to be tough and may lead to needing to make some tough decisions. :hug:

[cantwaittoseemickey]

Love seeing that smile! I am glad Goofy sent him a post card! Good luck with the appointments - it sounds like they are going to be tough and may lead to needing to make some tough decisions. :hug:

Isn't that the greatest smile!Dont see it too often right now but I know soon there will be lots more:banana:

[cantwaittoseemickey]

I bought some goodies for the kids and myself. Here are some pics

Tyler with his brand new Scooby Doo Towel
http://i74.photobucket.com/albums/i267/snickerb/MAW021.jpg

Sierra with her brand new Tinker Bell Towel
http://i74.photobucket.com/albums/i267/snickerb/MAW024.jpg

and Tonya (me) with my new Mickey Mouse Towel
http://i74.photobucket.com/albums/i267/snickerb/MAW026.jpg

Tomarrow Ty see's the Gi so I will post when we get home. It is going to be a very busy day as I need to take Sierra into our peds walk in hours as she hasnt been doing the greatest either. So we will see what they say. Hopefully have some help with Ty's motility problems that seem to be getting worse.

[Momofwishkid]

Im so sorry Ty is having a hard time. I hope you can get some answers at his appointment tomorrow. :hug:

[Mtopher4]

Hi I'm subscribing :goodvibes

Love the big smiles. I'm sorry he keeps getting so uncomfortable :(

:confused3 What is a fairygodmailer?

[cantwaittoseemickey]

The gi has come up with a "plan". He is increasing one of his constipation meds. The fact that he is on constipation causing meds for his bladder and he is low toned is working against him. Also he is increasing his water intake. His weight is down again so he is increasing his formula and he is changing it to something without fiber as right now it is working against him till we get him "over the hump". Once we do that we will revisit the fiber. He said he cannot keep going like this. His intestines will stretch and kink and cause some big problems if we dont get it under control. He was born with a malrotation that was repaired at 5 weeks old so he is at increased risk.

He did get outside and play last night and that is great to see. Tomarrow he goes in for his veeg then Friday is a big day for urology apts. Then weve got this week down whew!!

[noahsketomom]

Tonya,
I'm sorry for the recent problems, but I hope they are short lived! I'm glad the GI is on it and hopefully the changes will resolve the constipation!

I'll be praying for the rest of your week! Does Ty deal okay with the VEEG? Is it portable or does he have to stay attached to the wall? They are hoping to move to portable units at our hospital, but haven't yet. It would've been helpful this summer when Noah was hooked up for the better part of 4 weeks! :scared1:

Hoping the rest of the week goes as smoothly as it can! :hug:

Best,

[cantwaittoseemickey]

Hi I'm subscribing :goodvibes

Love the big smiles. I'm sorry he keeps getting so uncomfortable :(

:confused3 What is a fairygodmailer?

:banana: Welcome to Ty's ptr.

Hopefully we are on a good path now to keeping him painfree. It will take a while but the gi said he thinks our new plan will help.

I do believe a fairygodmailer is when someone on the boards goes to WDW they will send a postcard from one of the characters if you request it.

[pnutallergymom]

Hey Tonya,

Just wanted to let you know I am still here following along!!!

Brigitte had a malrotation too. It was found 6wks after her first open heart surgery. She had surgery to correct it and had part of her intestine removed. She has had horrible constipation since birth. She is averaging about every 11 days or so with a BM......not fun. We got a referral to urology yesterday too!!!

Hope you guys are feeling better soon.

[pipersmom]

Hey Tonya! Just peeping in once more before we go! Keeping you guys in my thoughts for the veeg and uro appts, hopefully they'll be able to figure something out. :hug: Love the beach towels..very cool!

[Momofwishkid]

Hi Tonya, just wanted to say you and Ty will be in my thoughts with all his appointments this week. I really hope they have some answers for you. :hug:

[cantwaittoseemickey]

Tonya,
I'm sorry for the recent problems, but I hope they are short lived! I'm glad the GI is on it and hopefully the changes will resolve the constipation!

I'll be praying for the rest of your week! Does Ty deal okay with the VEEG? Is it portable or does he have to stay attached to the wall? They are hoping to move to portable units at our hospital, but haven't yet. It would've been helpful this summer when Noah was hooked up for the better part of 4 weeks! :scared1:

Hoping the rest of the week goes as smoothly as it can! :hug:

Best,

He does "ok" once we get past the glue. It sends him into a rage that I do not like to see. The last one I walked out crying. He was in for a week with that one. I can't imagine 4 weeks in that room:scared1: We do not have the portable units unless they have gotten them since last May.But I do not believe they do. I usually take a ball to play with in the room so we can do something that wears him out. Although the last time they wanted a sleep deprived veeg and they got it. He didnt go to sleep till after like 6am. My kid was peddaling an excersise bike at 4am:scared1: They brought all kinds of things to keep him busy lol.

[cantwaittoseemickey]

Hey Tonya,

Just wanted to let you know I am still here following along!!!

Brigitte had a malrotation too. It was found 6wks after her first open heart surgery. She had surgery to correct it and had part of her intestine removed. She has had horrible constipation since birth. She is averaging about every 11 days or so with a BM......not fun. We got a referral to urology yesterday too!!!

Hope you guys are feeling better soon.

Thankfully they did not have to take out part of Ty's intestine but it sure left him with horrible constipation. We ended up back inpatient for another week the day after he was released just because he was so backed up. 11days:scared1: Bless her heart! Ty is going once a week and he gets miserable. But even when he is going that one time he is not entirely getting cleaned out. I hope she is ok Urology wise. Bless her heart. She doesnt need that added on:hug:

[cantwaittoseemickey]

Hey Tonya! Just peeping in once more before we go! Keeping you guys in my thoughts for the veeg and uro appts, hopefully they'll be able to figure something out. :hug: Love the beach towels..very cool!

Thank you Amanda! I hope you and Piper aren't in Club med too long! Thinking of you both. I hope she feels better soon.

[cantwaittoseemickey]

Hi Tonya, just wanted to say you and Ty will be in my thoughts with all his appointments this week. I really hope they have some answers for you. :hug:

Thank you Jennifer!



Sorry I did the posts the hard way. Still dont know how to mulitquote:rotfl2:

[kdzbear]

I am back on board and following along again! :wizard:

[Mtopher4]

I hope the Dr. has him going in a positive direction now. malrotation's are common with Ashley's syndrome too but that's one of the things she didn't have... ((((Hugs))))

[kellyw8863]

Think of you as the week and Ty's appointments are wrapping up.:hug:

[cantwaittoseemickey]

I am back on board and following along again! :wizard:

:yay::yay:Thank you for finding us again:yay:

[cantwaittoseemickey]

I hope the Dr. has him going in a positive direction now. malrotation's are common with Ashley's syndrome too but that's one of the things she didn't have... ((((Hugs))))

I am so glad she didnt have these to work with. They sure have cause Ty alot of problems with his bowels. hugs!

[cantwaittoseemickey]

so far today has been an unproductive day. Tomarrow will be the day where his so tired out of it and stairing becuase of being in here. But we will see. But we will already be unhooked and ready for the next test by then. So we will see. There have been a few instances so well go off those.

Then tomarrw its off to the big apts. Renal ultrasound an the urologist team. :eek: I will post as soon as I am able to.He has kidney reflux which is not good at al. So the Ultrasoumd will tell us if thre is damage and how big his bladder is.

THank you for all of your thoughts and prayers. They mean so much to us.

[cantwaittoseemickey]

We are back from Childrens. I am exhausted so I will update tomarrow. I have a pic to share of Ty when I get them uploaded tomarrow. Thank you for all of your thoughts and prayers.

Have a nice weekend everyone.

[Momofwishkid]

So glad your home. Get some rest and I'll be waiting to hear how everything went.

[cantwaittoseemickey]

Finally got some time to post. Ty's veeg went ok. We won't get any results of that for a few weeks as our dr is out of town and we had to leave for Ty's ultrasound before the dr that was on could come in and talk to us.

His renal ultrasound was unchanged:banana: so his kidneys still look good:cool1: We were so thrilled to hear that. First they want to do another spinal mri to make sure his spine has not retethered. The urologist said we have two options. Botox injection in his bladder or the bladder augmentation surgery. The botox injection is a newer procedure and has not been done on many kids. As a matter of fact Ty will be the 3rd patient to have this at our hospital. That certainly didnt ease my fears and the tears began to flow:( I am happy in one sense that we have another option before going to the big surgery but uneasy about something being so new and not allot of outcome studies on it. But we have made the decision to go ahead with the botox and pray for the best outcome. They will do a cystoscopy and insert the botox then a few weeks later he will have a urodynamics study. If it shows no change then they will repeat the botox then do another urodynamics study a few weeks later. If the botox is helping to lower his pressures and his bladder is growing then they will do the botox injections as needed or approx every 6-9 mos or can be as early as 3 months. We would know when we start seeing symptoms again.If there is no change then we will know that the botox isnt going to work and will start planning for the bladder augmentation.

Now about our trip. IT IS ON!!!The botox injections will not hinder the trip and if they have to do the bladder aug we can wait till after his Wish trip!!:banana::banana::banana: I will be calling our MAW ladies tomarrow to let them know:cool1::cool1: We will have something to look forward to and talk about while he goes through the botox and if he needs the Augmentation we can work on the scrap book with the pics and go back through the trip all over again:)

Some pics
http://i74.photobucket.com/albums/i267/snickerb/veegrenalultrasoundandUrologyvis-1.jpg
all smothered in shaving creme always a great thing for hospital stays:)

http://i74.photobucket.com/albums/i267/snickerb/veegrenalultrasoundandUrologyvisit0.jpg
were leaving yay! Look at my fuzzy hair:rotfl2:

http://i74.photobucket.com/albums/i267/snickerb/209.jpg
yesterday looked like it was going to not be a so great day but see next pic


http://i74.photobucket.com/albums/i267/snickerb/218.jpg
A picnic in the woods yesterday

[Momofwishkid]

Im so glad the renal ultrasound showed no change in Ty's kidney's and you have another option before considering the surgery. I am so hoping the botox is just the thing to help.

[noahsketomom]

Me too -- hoping and praying the botox will work!! Thanks for posting the pics -- LOVED seeing them!

:goodvibes great news about his kidneys and of course that the trip will go on as planned. Watch out, Jaws!!

Also I'm glad the VEEG went well -- was praying for you and him on that one. He looks great in the pic! :)

[cantwaittoseemickey]

Im so glad the renal ultrasound showed no change in Ty's kidney's and you have another option before considering the surgery. I am so hoping the botox is just the thing to help.

Thank you:)

Me too -- hoping and praying the botox will work!! Thanks for posting the pics -- LOVED seeing them!

Thank you.

:goodvibes great news about his kidneys and of course that the trip will go on as planned. Watch out, Jaws!!

Yep he better watch out for Ty unless he chickens out just before. I am going to make sure both kids are on the outter side LOL

Also I'm glad the VEEG went well -- was praying for you and him on that one. He looks great in the pic! :)

Thank you. He did pretty good. He played with the shaving creme and food coloring for quite a while till I went down and got a ball and had him all over the room:laughing:



I just spoke with the neurosurgeon nurse and she said he want's the mri done with contrast. I don't ever remember Ty getting contrast is that usually given through and iv?:confused3

Still trying to get ahold of our Wish coordinator:banana:

[cantwaittoseemickey]

We are all set:cool1: She will start working on things a little closer to our date. Our GKTW villa has already been reserved.

[pnutallergymom]

So happy to hear the news that the trip is on!!!! :cool1:

Not so great news on the surgery. I'm so sorry you guys have to go through that. Sending you a :hug:!!!

[kellyw8863]

Yah! I'm glad his kidneys look good! I hope that the botox works for him and you can avoid the big surgery. Just out of curiousity, where was Ty's cord tethered? I just thought I'd throw this out there, but last year GI really wanted neurosurgery to re-scan Ali's spine, but her neurosurgeon indicated that a tethered cord post repair will always look tethered on MRI. In other words, it's not accurate in determining whether or not a cord has retethered. I don't know if that's unique to the type of tc Ali has, but I just thought I'd share in case it's helpful!

Ty looks great in his pics. I'm so glad the trip is on!:cool1:

[cantwaittoseemickey]

Yes Kelly that is our question too. I thought once the repair was done that it always shows something. I have an email in to the nurse who is going to ask him that and also why are they doing a contrast mri this time and not last time when he went in with normal results and took a chance and it was there kwim? We wonder what difference the contrast will show and why wasnt it used last time. We love our neurosurgeon he is absolutley wonderful but we are just curious as well. Just to help us understand a bit better. He is out of the office right now so It may be a little while before we know.

I am really biting my fingers on this mri as I thought this would be something that was behind us. Ty did not react well to all of the pain meds they had him on to keep him sedated to stay still. I thought once it was over we wouldnt have to go back through this again. I know there isnt a huge chance it is retethered but last night he was bending over and he said "ouch mommy I feel like I just had my back surgery when I do this". So Im wondering about scar tissue. It hasnt even been a year:confused:

[pacrosby]

Glad to hear you're all set for the trip :cool1:

Boo on all the medical stuff :hug:

Love the px! Glad to see his spirit shine through despite all the cr*p he must endure. Looks like you've got yourself a fighter:)

[kdzbear]

I am glad to hear your trip is ready to go. I am not sure how botox works on organs, but it did great wonders on Tyler's neck to fix his severe torticollis and there were no side effects! The hospital visits are never fun! I can't wait to read more about your trip plans! :yay::woohoo::yay:

[cantwaittoseemickey]

I am glad to hear your trip is ready to go. I am not sure how botox works on organs, but it did great wonders on Tyler's neck to fix his severe torticollis and there were no side effects! The hospital visits are never fun! I can't wait to read more about your trip plans! :yay::woohoo::yay:

Hi! The main thing that I see that could be a problem is that Ty already has swollowing problems and the big side effect is that if he already has it it can make it worse for a while:scared1:

[kellyw8863]

Hi! The main thing that I see that could be a problem is that Ty already has swollowing problems and the big side effect is that if he already has it it can make it worse for a while:scared1:

I don't think that the botox would affect his swallowing if it's going to be given near his bladder. Ali also has dysphagia and her docs have talked about botox into both her pylorus and her sphincter. No one ever suggested that it would affect her swallowing. Their hope when we discussed it was that it would improve her motility so that we didn't have to worry as much about her refluxing and aspirating on that. Did you get your questions answered regarding the MRI?

[pnutallergymom]

I don't think that the botox would affect his swallowing if it's going to be given near his bladder. Ali also has dysphagia and her docs have talked about botox into both her pylorus and her sphincter. No one ever suggested that it would affect her swallowing. Their hope when we discussed it was that it would improve her motility so that we didn't have to worry as much about her refluxing and aspirating on that. Did you get your questions answered regarding the MRI?

I totally agree with Kelly on this Tonya. Brigitte has had botox to her pylorus and it was exactly for what Kelly said, to help her motility. The botox to her pylorus did help her GI motility so it did cut down on her aspiration and reflux for the time that it was working. I can totally see the idea that using Botox to his Kidneys etc. as the principal is essentially the same. In fact, that makes a great deal of sense, but kidneys and swallowing??? Never heard of the correlation. I'll be interested to hear the explanation on that one!!

[cantwaittoseemickey]

I don't think that the botox would affect his swallowing if it's going to be given near his bladder. Ali also has dysphagia and her docs have talked about botox into both her pylorus and her sphincter. No one ever suggested that it would affect her swallowing. Their hope when we discussed it was that it would improve her motility so that we didn't have to worry as much about her refluxing and aspirating on that. Did you get your questions answered regarding the MRI?

Thank you Kelly. I have heard of some not so great stories with botox and kids with CP and that had me a bit uneasy. I looked at the Botox website and in side effects it mentioned can effect swallowing but it didn't mention which body parts it was given in.

His neurosurgeon was out of town this week so I won't know till next week. I am going to do a reminder email b/c I woudl really like to get all of this done on spring break. Which right now is looking unlikely since it is a week away.Hopefully it will work out.

I totally agree with Kelly on this Tonya. Brigitte has had botox to her pylorus and it was exactly for what Kelly said, to help her motility. The botox to her pylorus did help her GI motility so it did cut down on her aspiration and reflux for the time that it was working. I can totally see the idea that using Botox to his Kidneys etc. as the principal is essentially the same. In fact, that makes a great deal of sense, but kidneys and swallowing??? Never heard of the correlation. I'll be interested to hear the explanation on that one!!

I read it on the Botox website.I'm now thinking it may have meant if it was used in other places but it didnt clarify where. You are helping me to feel more comfortable with this;)I think the with him being the third child at our hospital is what is making me so uneasy.

They had to change his formula again. He is now on Nutren 1.5 and it is 8 cans a day:scared1:He is back on night feeds which is something he just did not want to do. He's also on the pump more during the day.I just dont like backward slides.:( But this should help with his stomache tolerating things better and cut down on his constipation. Maybe this is THE one. This year is our first year working with a nutritionist with his feeds and they have been so helpful.

[cantwaittoseemickey]

Tonight we decided to rent Panyo as Ty has been really wanting to see it and it did not dissappoint at all! IT was the cutiest movie I have seen in a long time. He Even wants the cd to the music that it has and that has to be very special for him to want that.

Anyways we were going to work on our links and they proved too much for some kiddo's on a Monday so I will work on cutting them out tomarrow and have them ready to be glued together tomarrow;)

Here are a couple of pics from tonight

:lovestruc:love:
http://i74.photobucket.com/albums/i267/snickerb/DisneyNightPanyomovie008-1-1.gif

Mr. Goofy himself! He loves Goofy!!
http://i74.photobucket.com/albums/i267/snickerb/DisneyNightPanyomovie009.jpg


Tommorow night we are watching the BLack stallion. That is Sierra's pick. Then we hope to work on the Links countdown chain :banana: Its going to be about a 101 day countdown but that is fine. We are so happy Ty has been given this huge wish. To see the kids just so happy is so great. WHat a wonderful thing Make A Wish does.

THANK YOU MAKE A WISH!!!!

[wishin' on a star]

Hi Tonya,
Just wanted to say hello, and let you know I'm following along. :goodvibes Sounds like you have a few things coming up health wise, and I hope they all go well!

[cantwaittoseemickey]

Hi Laura:) Welcome to Ty's ptr. Thank you for following us:hug: Thank you for the well wishes for Ty.


Hi Tonya,
Just wanted to say hello, and let you know I'm following along. :goodvibes Sounds like you have a few things coming up health wise, and I hope they all go well!

[cantwaittoseemickey]

It is a georgous sunny day finally and I think there are more to come this week. Next week is spring break:cool1: I plan on doing a little shopping for the trip and I also need to look for a dress for my cousins wedding in May.I will also find Ty a nice suit and Sierra has a dress already as she loves dresses. We will travel to Tennessee and we are staying one night in a Bed and Breakfast with a mountain view and the other two nights I will book a hotel. I have never stayed in a bed and breakfast before and I am really looking forward to it.

I am seriously thinking about getting some new luggage. I saw this lady at Kohls yesterday with a really cool rolling suitcase. It was pretty light. She said she had another one that she totally stuffed and it was no where near the wieght limit. Only thing is it was very expensive so I think I might look for something comparable. Right now we are borrowing some from my mom and sister. Feeling the luggage sharing love:rotfl2:

[cantwaittoseemickey]

The last few days have been so pretty so outside we go:yay:

Workin hard on the wood pile
http://i74.photobucket.com/albums/i267/snickerb/004.jpg

Perfect place to cozy up for a good book
http://i74.photobucket.com/albums/i267/snickerb/002.jpg

And this one is of me because I like my hair finally:rotfl2: I would love to put it in a french braid do you think its long enough?
http://i74.photobucket.com/albums/i267/snickerb/011-1.jpg

[cantwaittoseemickey]

Yesterday I went shopping with my sister. ohh we had a good time.

I found Ty his favorite color green shirt
http://i74.photobucket.com/albums/i267/snickerb/009-3.jpg

Found myself a few shirts
http://i74.photobucket.com/albums/i267/snickerb/008.jpg

And me and my sister got a matching outfit for Easter. She bought the same shoes too but brown.
http://i74.photobucket.com/albums/i267/snickerb/005-2.jpg

I was so glad to be able to do a little shopping with her. I do believe a few people thought we were a little crazy:rotfl: She had gastric bypass surgery a few years ago and it almost took her life and she is sick 95% of the time. Before that we got out and went shopping constantly but now between her and Ty we rarely have a chance to go. So when we go we have a "good" time lol because Ty is either at school or they are both having a good day. Sierra well she is always having a good day:lovestruc So the kids were in school and she was doing great so off we went.

[cantwaittoseemickey]

So remember a few weeks ago Ty had his veeg and was to have an mri to check his spine for retether? I fully didnt expect Ty's veeg to show anything this time as he really seemed to be having a good day that day. But I guess it wasn't the case. He had some activity either while he was asleep or when they did the strobe light. I am a little confused though because the report says when they did the strobe light but the nurse said it was while he was asleep:confused3 So we will find out more when we go in this month. It also explains why we are seeing the slower processing again when he was doing better. The one thing that has me a bit concerned is that his siezures are starting to be generalized more. I really don't want to increase his med but we will see.

He also had his mri yesteray. And the good news is there is NO rether:cool1::banana: So next week we will be scheduling the botox. I am SOO relieved there is not a retether.

[pacrosby]

Whattya mean your report isn't snazzy????? Seems snazzy enough to me!!!

I think the key is to read and post on alot of other's threads...........that way you make 'friends' and they reciprocate by reading and posting on yours. Problem is......................I'm alittle too busy to be reading and posting on all sorts of people's threads all day :laughing:

Oh well. We know we're snazzy right ;)

Here's a wave to you :wave2:

and LOOK! Now you're back on page 1 :rotfl2:

[pacrosby]

oh yeah and...............

yay on the good MRI results!

I do so like your little outdoor reading nook!

and SURE you could put your hair in a french braid............if you're a talented french braider (sadly, I am not)!

[yinyanggirls]

I wasn't subscribed?!? :confused3 Did you start a new one? I'll go back to the beginning and get caught up over the weekend!

[cantwaittoseemickey]

Whattya mean your report isn't snazzy????? Seems snazzy enough to me!!! lol

I think the key is to read and post on alot of other's threads...........that way you make 'friends' and they reciprocate by reading and posting on yours. Problem is......................I'm alittle too busy to be reading and posting on all sorts of people's threads all day :laughing: Ty and myself sit and read the dis boards a little each day. Including his. He loves hearing about all of the trips and the trips coming up (wow there are quite a few!)

Oh well. We know we're snazzy right ;) Heck ya! :rotfl:

Here's a wave to you :wave2:


and LOOK! Now you're back on page 1 :rotfl2:
:rotfl:

[cantwaittoseemickey]

oh yeah and...............

yay on the good MRI results!

I do so like your little outdoor reading nook!

Thank you. Sierra built it herself with her comfortor and all. That was her way of going outside. I told her she had to go outside and that was her compromise:rotfl: She is always reading a book.

and SURE you could put your hair in a french braid............if you're a talented french braider (sadly, I am not)!

Oh I wish I was! I am definately not that talented. I can do a ponytail and that's my talent for hair lol. Can braid just a little since its been a while for Sierra to let me braid her hair. Im going to have it done that morning but I'm trying to get it long enough. It has a little over a month to grow:laughing:

[wishin' on a star]

Tonya,
Looks like you got some great finds shopping! DH has put me on a budget. :sad2: So my shopping days are quite limited these days. I'm hoping that as the trip gets closer, maybe I'll be able to go out and do a little more summer clothes shopping! The kids really need a little boost to their wardrobes...they just keep growing. :confused3

Love the outside pictures...we have been enjoying tons of sunshine here as well, and it is great to finally be enjoying spring! My tulips started opening today, so that was a great start to the day. :flower3:

Well, good news that there is no re-tether. Lots of kids with the same bowel malformation as Catherine have tethered cords, so we have been through all of the MRI's for that as well. Thankfully, she didn't have one. I'm so sorry they saw some seizure activity, I hope you get some answers about this soon. Just when you think things are going along smoothly. Good luck with the botox!

Watching all these others get ready to go and just hanging out here watching the ticker wind down is hard...our time will come too!:)

[cantwaittoseemickey]

We had a pretty good Easter. We spent it over my parents house and had lots of (too much actually) good food. Ty and Sierra hunted Easter eggs. Ty had seen the Easter bunny out in our backyard the other day. He must have been planning out how to bring the baskets in the house:rotfl2: I guess he picked a good place cause they were right there on Sunday morning. It started out with a slow day for Ty. No energy and basically wanting to lay in bed all day but after a few hours of laying around he finally went outside. He actually played some bad mitten with his Uncle. Im not sure who wore who out but they were both pretty tired that night:rotfl: Sierra enjoyed drawing on her new sketch pad and playing with clay. I will have to upload some pics later tonight. She amazes me with her clay.

Today they both got a clean bill of dental health so no dentist for another 6mos. :banana:

I cannot believe it is just over 3 months before we leave. Yesterday we had another family disney discussion at the table:laughing: So far its 3 to 1 on who's riding Expedition Everest. And Ty say's he's going on Mission Space again for his important job (I believe in 08 it was to land). I have been looking for some pics from our trip but I can't find them so far other than what's in my scrap book. Might just have to take a pic of some pics:rotfl2:

[kellyw8863]

I'm glad you had a nice Easter.:goodvibes I'm not a roller coaster person, but after watching countless EE videos on YouTube, I'm thinking I just might give it a try.:scared1:

[pacrosby]

So who's the "one" who isn't riding EE? Or "is"? LOL

Nick and I LOVED EE......................dh and Liv? Not so much :rotfl2: (Matty and Brennan were too short)


Glad to hear you had an enjoyable Easter. I just love doing the baskets and the hunts and the cookies etc. etc. Makes me sad to think that our years of that are numbered:sad2: These kids...................grow up too fast don't they?

[cantwaittoseemickey]

I'm glad you had a nice Easter.:goodvibes I'm not a roller coaster person, but after watching countless EE videos on YouTube, I'm thinking I just might give it a try.:scared1:

Ok since you get to go first you will have to tell me how you like it. ;) lol! I so want to ride it but I just don't know. It "seems" ok from what I looked at on youtube as well but Im just not sure. Now I know Tower of Terror is out for me. No way at all on that one. :rotfl2:

So who's the "one" who isn't riding EE? Or "is"? LOL

Nick and I LOVED EE......................dh and Liv? Not so much :rotfl2: (Matty and Brennan were too short)


Glad to hear you had an enjoyable Easter. I just love doing the baskets and the hunts and the cookies etc. etc. Makes me sad to think that our years of that are numbered:sad2: These kids...................grow up too fast don't they?

Um that would be me that "isn't riding" and dh and the kids that are riding :rotfl2: I want to but I don't want to. It looks innocent enough but I just don't know. I rode a roller coaster a couple of years ago at a local amusement park and well lets just say I couldn't walk a foot in front of me without fighting back barfing:rotfl:

The kids do grow up so fast. Way too fast. When my kids are ready to stop participating then they will do so at that time. But if they are like me we just took the plastic ones to the basement and hid them for years:rotfl: Anything that puts a smile on thier faces is what matters to me.

[wishin' on a star]

DH won't go on any roller coasters, but Carmella wants to go on all of them...and I LOVE :lovestruc rollercoasters! So, she and I will be doing the roller coasters, while daddy does something tamer with the little guys.

Give me any ride that doesn't spin and I am good. Upside down I can handle, but something about getting older and the body doesn't like to go round and round any more! :rotfl:

[yinyanggirls]

Hurray for a good dentist visit!

[cantwaittoseemickey]

LOL!! You sound like me. I used to ride roller coasters and all that when I was younger. As I have gotten older well that went out the door:rotfl:



DH won't go on any roller coasters, but Carmella wants to go on all of them...and I LOVE :lovestruc rollercoasters! So, she and I will be doing the roller coasters, while daddy does something tamer with the little guys.

Give me any ride that doesn't spin and I am good. Upside down I can handle, but something about getting older and the body doesn't like to go round and round any more! :rotfl:

[cantwaittoseemickey]

We are getting ready to do some much needed repairs on our house. We are trying to decide on what color to paint our livingroom.We havent painted it since we have lived here and it really needs something on it. I think we will go with a tan color kind of nuetral. But I am not a good color coridinator so we will see how that goes ;)

The kids are on spring break and I am loving it. The weather was great until today it has gotten a little cooler. We have been getting the fire pit going in the evening and sitting out side. I am so ready for summer break. I love it!

[cantwaittoseemickey]

Well Ty has decided to throw me a curve ball today. It's just after 6am and he has yet to fall alseep:scared1: I was debating on going out to look for me a dress today or stay home and get some things done so I guess we will stay home. Dh is working all day today so it's just me and the kids so we can take it easy. He does this with every break he gets during the school year. He did it during Christmas too. Hopefully he will fall asleep soon.

[cantwaittoseemickey]

We had a great Easter. It was sunny and warm. Im just wondering where the warmth went all of a sudden;)

Here's an Easter pic
http://i74.photobucket.com/albums/i267/snickerb/Easter2010beforehouseremodel008.jpg
Sierra loves to do sculpting. She constantly has clay in her hands. These are a few of my favorites.
http://i74.photobucket.com/albums/i267/snickerb/Easter2010beforehouseremodel011.jpg
My little dude having another rough day today.
http://i74.photobucket.com/albums/i267/snickerb/003-3.jpg

[kellyw8863]

I'm sorry Ty is having a rough time.:hug:

[cantwaittoseemickey]

[COLOR="Purple"] So I thought I would also do a little trip report on my pretrip report. I found some of the pictures but the picture fairy did something with the rest of them:rotfl:

So welcome to my practice trip report:cool1:Our 2008 trip


We started off by driving to the Indianapolis Airport which is a few hours away from us. We decided to drive up the night before and stay in a hotel at the airport just to make it that much more fun. Our plane took off early the next morning. We got to the hotel pretty early so the kids could go swimming and we could watch the planes come in and land. Our room had a perfect view of the planes and we stood in the window for quite a while after the kids were done swimming:rotfl2:

The next day we headed to the airport and checked our luggage and did the security thing. Somehow me and Ty were seperated from Tim and Sierra and he had Ty's pump, his cpap machine and Sierra with him. I had Ty in his wheelchair, the carryon backpack and a bag with his medical supplies in it. Everything went well except they didn't want to let me bring on Ty's pediasure cans and pedialyte.So after a bit of discussion the lady said ok only when she zipped one of my bags she zipped the zipper right off. It broke:scared1: So then we had to fill out a report and that took about a half hour for a bag that wasn't really replaceable since I got it in Chicago at Childrens Memorial when he was up there:( And the worst part is I was left to do the disney thing with a bag without a zipper on it:eek: But it worked out I just left that one in the room.I was so happy to land since it was a bit of a bumpy ride and the well me being the chicken that I am:rotfl:

When we arrived at All Star Movies they told us our room was finished and we headed up. When we opened the door there were towels on the floor and it looked like it hadn't been cleaned:sad2:So we contacted the front desk and they sent up some house keepers who took a while to decide what to do all the while we were hungry and warn out. So finally after a manager got involved we were given a room just down the hall and it was a corner room:cheer2: It was just a wee bit bigger then the regular room and the way it was situated was better for Ty's wheelchair.

Shortly after we dumped our things off we went to catch the bus to DD. We got in line behind some women and one was on an ECV. It was very hot outside that day. Apparently the lady that was with the group had been in already to complain that they had been waiting for 45mins for a bus but they just kept going by. Well little did we know what was going on. So when we were there for 45mns ourselves I started getting a little annoyed so I went to the cm at the desk and she said it would be here soon. Well I kid you not there were a ton of buses roll up and board but NONE had room for any of the ecv's or wheelchairs. The next time me and the lady went in and we both complained and the CM told us there was nothing she could do about it:mad: So then I went out again and we had waited for close to two hours and Ty was pretty much melted tired and DONE but finally a bus rolls up that we could get on. So we arrived and got some yummy McDonalds and took a few pics but I couldnt get them to turn out when I tried to take a pic of those pics.

Just had to get a pic of the broom guy
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008004.jpg

Next up Epcot...

[cantwaittoseemickey]

Ok now onto Epcot

This was our second day but first day in a park. We headed for Soarin and we all loved it. That is high on our list this time. After Soarin we headed to the Bill Nye and Ellen Dinasour ride. Now that one is NOT one of my favorites. :eek: So we were in the last car and all I could do is look behind me thinking about what would be following us:rotfl2: Ty was none to happy either and when that big Dinsour looks over the car me and Sierra just happened to jump at the same time knocking our heads into each other.:lmao:


After that we went to Turtle Talk with Crush. DUUUUDDDEEEEEE Yes I said that for the next month after our vacation lol. That was the cutest show. We enjoyed that alot. It was a nice break too.

We did alot of walking around. Then we rode Honey I shrunk the Audience and well lets just say Ty did NOT like that at all.

We went to get in line for Test Track and the line was long. We waited for quite a while. When we went to approach the CM about where to go with his wheelchair the cm asked us for a gac:confused3 I really hadn't even thought about one since I really wasn't sure what it was but none the less we waited in the regular line and Ty had so many melt downs I was ready to call it a night. But we kept on and finally made it to the ride. All was well until just before it was over the ride stopped:scared1: But after just a bit it started back up again and when we arrived the cm asked if we wanted to go again:eek: I hurriedly said NOOO and the guy that was riding with us along with my hubby and the kids all yelled simutaneously YESSSSSS so off we went again. :yay:

Then we rode Mission space the lite version. That is one I will skip this time:rotfl:

We rode a few others but I can't really remember too much else;) We sat and watched Illuminations in between the rain. We could see lightening off to a distance. It was wierd because the lightening was all up in the clouds. Really neat. Illuminations was awsome! We really liked it but it was one of those things where we learned to bring headphones to.

Here are some other pics ok well I have resized these 3 times now and they say they are medium but theres no way lol
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008027.jpg
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008030.jpg

NEXT UP... Magic Kingdom????? Maybe Maybe not...

[yinyanggirls]

Another flashback! Yay! I love how every kid has to climb into that shark. :lmao:

[cantwaittoseemickey]

Another flashback! Yay! I love how every kid has to climb into that shark. :lmao:

Lol there is something about appearing to be eaten by a shark with a big smile on its face:rotfl2:

[cantwaittoseemickey]

3 MONTHS TODAY!!!!!! :cool1::banana:

[cantwaittoseemickey]

I'm sorry Ty is having a rough time.:hug:

Thank you Kelly. How is Ali doing? I hope she is doing good and ready for her big trip!

[cantwaittoseemickey]

Our 2008 trip Day 3

We get up to go to MK board the bus raring to go. Walk through the gates and OH NO. Momma doesn't feel so well:( The nerves from the plane ride catch up to me so we have to leave. But knowing we had bought one day tickets to Epcot and MK I had to do something or we wouldnt be able to go back to MK!!:eek: I couldn't let that happen:sad2: Knowing that this probably wouldn't work I thought I would at least try. So I marched myself up to the guest services building and pleaded my case. Explained what had happened that I was feeling ill. (I knew we wouldnt be back that day because my stomache conditon usually lands me in bed for the day) and the very nice CM told me that they don't usually do this at all but they gave us another ticket:banana:Oh I was so greatful. She also had to "escort" us past the turnstiles as well to make sure we didn't come back in. She was awsome about it and actually talked to us all the way out.

So back on the bus and to the resort we went.I went to bed and dh took the kids swimming.Thank goodness for the pool! Later on I was able to get up and do a little laundry and that night we were able to go to the resort restaurant and eat a little. So it wasn't a total loss. I mean being in Disney even just at the resort is such an experience in and of its self. Just that Disney Magic I guess:wizard:

Next up..Day 4 WHAT IS THAT LOUD NOISE MOM!!!

[kdzbear]

I am caught up again. I was so confused! :confused: One post said 3 months to go and the next one said day 3. I realize now that you are recapping a previous trip! I am back on board! :wizard:

[cantwaittoseemickey]

I am caught up again. I was so confused! :confused: One post said 3 months to go and the next one said day 3. I realize now that you are recapping a previous trip! I am back on board! :wizard:

I was afraid of that. I should make sure to put 2008 trip :thumbsup2 Welcome back! :)

[kellyw8863]

Thank you Kelly. How is Ali doing? I hope she is doing good and ready for her big trip!

She's doing okay. We're still seeing a lot of fatigue and in general "offness." I'm beginning to think that maybe it's allergy related and have started her on Claritin. My allergies are a mess, so I imagine it's a distinct possibility. I'm enjoying reading about your past trip!:goodvibes

[wish_upon_a_star35]

Three months will go by so fast! Just wanted to say that you have an adorable family! Your son's wish trip will be awesome!!!

[cantwaittoseemickey]

She's doing okay. We're still seeing a lot of fatigue and in general "offness." I'm beginning to think that maybe it's allergy related and have started her on Claritin. My allergies are a mess, so I imagine it's a distinct possibility. I'm enjoying reading about your past trip!:goodvibes

Allergies are awful here too. Tim and Sierra have both had a harder time far this year. I hope the Claritin helps.

Three months will go by so fast! Just wanted to say that you have an adorable family! Your son's wish trip will be awesome!!!

In a way I want it to hurry up and get here. But yet I don't want it to rush because it is something we have to look forward to and talk about and having fun imagining. But we definately wont argue if it hurries up:rotfl2:

[cantwaittoseemickey]

Day 4 WHAT's THAT NOISE MOM!!

We slept in just a tad bit this morning. And didn't arrive at MK till after 11am. Probably not a great idea and you will find out why later.;)But Ty was all smiles and ready to go.
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008022.jpg

He is begging for something here. I have no idea what though but he was sure giving it his best try:rotfl2:
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008023.jpg

We board the bus to MK walk through the gates (again) lol and our first stop is a pic of
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008031.jpg
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008002.jpg

Then our next stop was a pic with Rafiki
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008006.jpg

After Rafiki we headed to Carousel of Progress. Now the kids know that this is NOT my favorite ride. I like the story but the song plays over and over in my head. So I like to play it up and pout when they wanted me to go on it :lmao: They had a great time making mommy "miserable" lol

So I mentioned that we probably waited too long to go to the park and "WHAT IS THAT LOUD NOISE MOM". When we went in to the Carousel of Progress it was nice and sunny outside. While we sat inside watching the "show" we began to hear some loud noises. At first we thought they were working on something outside. But then it became apparent that it was indeed storming. Quite loud I might add. When we came off of Carousel of Progress we walked into a huge amount of people all gathered around it under the awning trying to get out of the storm. So we tried to wait it out. We waited and waited and waited. It was pouring outside. We had poncho's with us thankfully but we were still getting soaked.So we got tired of standing there and figured it was Florida it will stop soon. So we ran to TTA and hopped on. That was a nice breaker. Then it was so crowded around there we had nothing to do but go walk. The rides were shutting down except for the indoor ones.

We headed to It's a Small World and Ty was pretty much done. He was soaked and the storms was so loud and was so done with it all. His favorite word of the whole trip was "WHAT"?? That is his Im irritated and grumpy sign
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008037.jpg

Sierra was being such a good sport. She was just enjoying herself no matter what.
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008035.jpg

We were so glad we could finally ride the train. Ty loves to ride the train. But he does not like the loud whistle. The most important thing we learned this trip was to bring headphones for him.
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008038.jpg


Next...TR 2008 trip..Hey Goofy I'm GOOFY and Last day already???

[yinyanggirls]

Phoebe's so sensitive to noises too. General hum of a crowd is fine, but sudden noises scare her so bad! I'm hoping the earplugs I bought will help her get through the fireworks.

[cantwaittoseemickey]

Phoebe's so sensitive to noises too. General hum of a crowd is fine, but sudden noises scare her so bad! I'm hoping the earplugs I bought will help her get through the fireworks.

We definately learned the hard way. I tried the ear plugs with Ty and he just doesnt like them:( I wish they would work for us. Sierra plays the clarinet in band and when we go to concerts there sits her brother with his headphones on:lmao: It is quite the site. At first she was embarassed but she has gotten used to it thankfully.

[cantwaittoseemickey]

End of Day 4 tr 2008 A little bit of Magic goes a long way:)

Ok so I saved the character pictures for last. These are my favorite. Goofy just has a special place in Ty's heart and it was the only time he really opened up for the characters.

As we were standing in line waiting to see Goofy, Donald Duck and Pluto Goofy comes out to see us. Well little did I know Sierra was going to grab Goofy's wiskar! Yes my daughter grabs his wiskar. So he turned and pulled her nose:rotfl2: To this day she says it wasnt her it was Ty but we know it was her. Somewhere I have a pic of it and I will find it and show it to her.;)

Here they are right after they had the wiskar/nose pulling game
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008007.jpg

And here are the rest of the character pictures. The smiles they put on my kids were awsome. After a very long rainy day these pictures made our day.:love:

http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008016.jpg

http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008009.jpg

http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008015.jpg

http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008021.jpg

Now I really wish I had a picture from the parade but unfortunately both our camera's batteries were dead. But spectro magic parade really did some magic for our family. We walk up and get our spots for the parade on the curb. A lady and her daughter sat beside us and we immediately struck up a conversation. It was like we knew each other a long time. She was asking some questions about Ty and we were talking about her daughter and just relaxing waiting for the parade. And it begins. I absolutely love this parade. It just has that sense of ahh about it. It is my favorite. I love the music and it just brings back memories of when I went when I was younger. Well the floats are going and here comes snow white and Pluto and they say Hi to Ty over the speaker. He was having NONE of it:scared1: Snow white put her hand on his shoulder and he jerked away. Pluto put his arm around Ty and gave him the BIGGEST hug I have ever seen. His face just lit up and everyone was awwing. I look over and the mom beside us is filled with tears. She was bawling so of course I had to start too. Then later on the electronic lady that has a big round dress on (the step mother?) comes over to hubby and gives him a big ole wink:laughing: That was too funny. Sierra was laughing so hard at him cause his face was red:rotfl2: We went to bed that night on :cloud9:

Next up... Last Day tr from 2008 and the Not so great flight home

[wishin' on a star]

I'm loving the past trip report! The parade story is amazing...what a great ending to a thunderstorm-y day! Three months?!! :cool1: It'll be here before you know it!

[pacrosby]

Wonderful memories Tonya!!! Great idea to do a mini-TR within your PTR :) Helps pass the time and build the anticipation!

Hey, how old are Ty and Sierra anyway? You don't list it in your signature and I didn't read it in your intro. No reason, just curious :)

[cantwaittoseemickey]

I'm loving the past trip report! The parade story is amazing...what a great ending to a thunderstorm-y day! Three months?!! :cool1: It'll be here before you know it!

Oh yes that was quite the day. I didnt put this in there but we had had so much of the rain (it litterally rained from one side of florida to the other from the time we were in Carousel of Progress till we left) that we went to the train station sat down and I called my mom ready to come home. Yes I called my mom:rotfl: And unbeknownst to me she had fallen the night before and broke her arm(elbow) and never said a word. I found out on our way home from my sister. My mom said we were so miserable she didn't want to make it worse by me worrying about her:eek:

[cantwaittoseemickey]

Wonderful memories Tonya!!! Great idea to do a mini-TR within your PTR :) Helps pass the time and build the anticipation!

Hey, how old are Ty and Sierra anyway? You don't list it in your signature and I didn't read it in your intro. No reason, just curious :)

It is definately bringing up some great memories. And how much better this trip will be. We will be better prepared for Ty and know how to handle things alot better. And if it rains how to make the most of it instead of sitting and sulking like we did alot the last time:rotfl:

Sierra is 12 1/2 and Ty is 10. I will have to add it. I must have forgot to put it in;)

[cantwaittoseemickey]

We will be off to neuro on Wednesday for Ty to discuss his veeg and some things we have seen the last few weeks. Hopefully she will be able to give us some insight on what we are seeing as far as energy goes.

[cantwaittoseemickey]

Last day in Disney 2008 tr

We are able to sleep in just a bit before we have catch ME for our flight out so we head out around the resort for some last pics. It was a really hot but sunny day so we had a little bit of fun with it. Although it was a bit bright;)

First a stop by the "love bug".
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008042.jpg

Then a quick seat in the race car (I do mean quick since it was a bit toasty on the tushy:lmao:)
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008043.jpg
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008045.jpg

Ok it's hot can we just go already?
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008047.jpg

Sporting our new tattoos
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008041.jpg

And the kids are actually taller then dh for once:rotfl2:
http://i74.photobucket.com/albums/i267/snickerb/DisneyWorld2008046.jpg

After some pics we head off to the airport and are homeward bound.

to be continued..:laughing:

[cantwaittoseemickey]

Seriously WHERE's the shuttle???This is it the 2008 tr finale


So we we board our flight homeward bound. Sierra is sitting by the window Im in the middle and dh and Ty are behind us. There was this nice gentleman sitting next to me who really tried to talk to me to keep my mind off the flight. It was a pretty bumpy and stormy flight. We had to take a different route home and it was all I could do not to shiver in front of the kids from pure fright. He kept talking to me all about his past flights and well some of the stories didn't help me at all but he didn't let one minute go by without saying something to pass the time. We had to fly around for a bit before we landed because the storm was so bad. We had a very bumpy landing and lets just say I told myself I would NOT get on another plane (you know that never say never thought comes to mind now:lmao:) We land at the airport and there were buckets everywhere catching the rain. I called my mom who informed me that we had just landed right after a tornado warning and that was the reason we had to be rerouted then back around. :scared1:

So we go out to catch the shuttle back to our hotel and we waited, talked to a nice family before their shuttle arrived. Talked to some more people. Waited some more. Um no shuttle:confused3 So I call after quite a long while of waiting in the pouring rain(we were under a shelter thankfully) and the hotel informs me I was supposed to call as soon as we arrived at the airport. Um someone forgot to tell me that part:mad: So the shuttle gets there and the guy gets Ty and his wheelchair on the lift. Ty is very capable of getting on the shuttle without his wheelchair but he was pretty warn out by this time. So the driver pushes the button to lift. Um it bounced a bit then nothing. So it was just up a little bit off the ground. Ok I say no way he is getting off this thing. So we get him off and leave his chair on it. This chair does not fold well at all so we really needed it to be on the lift. Well he tries. And nothing. Tries again nope nothing. And over and over nothing. So we are sitting at the airport for at least 2-3 hours at this point. Not happy travellers at all. Tired and tired of rain.So the guy kept calling people at the hotel, his manager on MY Cell phone because he didnt have a radio nor a cell phone:mad: So he finally calls the big boss who tells him to get this Drive with the lift down:eek::eek: So he hangs up and tells us what he said and I said I THINK NOT! That he will not put our lives on the line because that wouldnt be possible on bridges and other cars going by us. So him and dh work more on the lift and they finally figure out how to get the manual crank bar out and they finally got the lift back in. When we got to the hotel I spoke with the lady who didnt care to hear what I had to say so we decided to trek the 2 hours straight home in the pouring rain exhausted and just wanting our bed and this trip to be done and over with. So we got home at I think around 2 or 3am and took the necessities in and crashed in our nice cozy beds. I never thought we would be able to go back to Disney. Ty's Wish trip will be so much diffferent as we will be able to do things we would have never dreamed we would be able to do on a trip. We budgeted like crazy for the 2008 trip. We were so upset that it was a hard trip. Ty is really looking forward to doing alot more on his Wish trip. We are so thankful that he has his Wish to go back for a do over trip. We learned so much and will be better prepared. Now no rain allowed!! :)

So there you have it. The trip (not so magical) to Disney World

This upcoming Wish trip will really give the kids the true meaning of Disney.

[Momofwishkid]

Hi Tonya, just getting caught up around here. I havent read your whole Tr from 2008 but am so sorry that last day so such a pain. What a way to end your trip.

[cantwaittoseemickey]

It was a hard day and I was so thankful to be on the ground:lmao:. But we learned so much from that trip. Looking back it seems like there was a "reason" it was a difficult trip.Like we learned how to handle things for his Wish trip that back then we knew nothing about. But God knew what he was doing. Only he knows what is in store for us and all of the lessons he has for us to learn. And we learned alot. There were wonderful memories made that trip outside of the hard times. But memories are that. Good ones and Bad ones they are memories the same. :love:

[pacrosby]

You've got a great attitude Tonya :) I'm with ya..............everything happens for a reason and everything that happened yesterday helps you better deal with today.

I got a kick out of you saying "yes, I called my Mother". We never get too old for our mothers do we?

[cantwaittoseemickey]

You've got a great attitude Tonya :) I'm with ya..............everything happens for a reason and everything that happened yesterday helps you better deal with today.

I got a kick out of you saying "yes, I called my Mother". We never get too old for our mothers do we?

Thanks:)

LOL nope never get too old for them.

[wishin' on a star]

Hey Tonya, Sorry I've been MIA from your PTR the last couple of days. I loved your past TR. I hope this time around is full of sunshine and sweet memories!

[cantwaittoseemickey]

Hey Tonya, Sorry I've been MIA from your PTR the last couple of days. I loved your past TR. I hope this time around is full of sunshine and sweet memories!

Thank you:) Me too!

[cantwaittoseemickey]

I finally sat down and really looked at the days today. I was able to come up with a rough draft itinerary. No exact times since it is subject to change once we get there. But at least I have "sort" of a plan.

July 10-16th

Sat-Arrive, orientation and check out the Village and no doubt swim swim swim:thumbsup2 since both kids are water bugs.

Sun-Universal Studios/IOA

Mon-Sea World, IOA, Disney character meet and greet

Tues-AK, DHS

Wed-MK, Horseback riding

Thurs-Epcot,Winter Wonderland/Christmas

Fri-Come home

2 days of US, IOA is definately not set in stone. If we like them and need to we will do the 2nd day if not we will take our time at Sea World and then head back to the Village or go back to another park?

[Mtopher4]

Hi Tonya....

That would have been horrid to be stuck in the rain and waiting for a shuttle forever :(

Hope to visit here more.. if my computer holds out LOL:goodvibes

[cantwaittoseemickey]

Hi Tonya....

That would have been horrid to be stuck in the rain and waiting for a shuttle forever :(

Hope to visit here more.. if my computer holds out LOL:goodvibes

Sorry to hear about your computer:( I hope it snaps out of it;) Love having you here on my ptr.:)

[cantwaittoseemickey]

I ordered the matching bottom to my tankini today. It was even cheaper then it was 3 days ago:cool1:

Now Im on the lookout for Ty some shorts. He is so skinny but button shorts are a little hard for him. And some sandals he can wear with his afo's that's easily on and off for the airport.

[wishin' on a star]

Sounds like you are getting everybody set for the trip! I still have some last minute shopping to do...hopefully after this week I'll have some free time.

[wishin' on a star]

I almost forgot...I wanted to tell you this. We have a friend through another group (who also happens to be going to GKTW the same dates as us!). Anyway, they travel to Cincinnati Childrens from New Mexico for all of her medical care. They had tentatively scheduled a bladder augmentation for July, but all of the testing this week showed things were going well enough that they want to hold off on the augmentation at this point, and they are going to do the botox to hopefully reduce the bladder spasms and help to continue to increase the bladder capacity.

I just wanted to share with you, as I know this is similar to what you are going through with Ty. She is elated that they are avoiding the augmentation surgery for now. This little girl currently caths through a mitrofanoff every 2 1/2 hours, does bladder irrigations with gentamicin, and takes ditropan.

Many of the kids with colorectal malformations like Catherine also have uro issues. We are lucky that aside from a single kidney with a history of reflux and stones, she now has no uro issues.

ANyway, when will Ty have the botox done? Where do you go for his uro care?

[cantwaittoseemickey]

Sounds like you are getting everybody set for the trip! I still have some last minute shopping to do...hopefully after this week I'll have some free time.

Im doing a little hear and there. It seems like our trip is so far away so I do little things to keep up the momentum.

I almost forgot...I wanted to tell you this. We have a friend through another group (who also happens to be going to GKTW the same dates as us!). Anyway, they travel to Cincinnati Childrens from New Mexico for all of her medical care. They had tentatively scheduled a bladder augmentation for July, but all of the testing this week showed things were going well enough that they want to hold off on the augmentation at this point, and they are going to do the botox to hopefully reduce the bladder spasms and help to continue to increase the bladder capacity.

I just wanted to share with you, as I know this is similar to what you are going through with Ty. She is elated that they are avoiding the augmentation surgery for now. This little girl currently caths through a mitrofanoff every 2 1/2 hours, does bladder irrigations with gentamicin, and takes ditropan.

Many of the kids with colorectal malformations like Catherine also have uro issues. We are lucky that aside from a single kidney with a history of reflux and stones, she now has no uro issues.

ANyway, when will Ty have the botox done? Where do you go for his uro care?



That is great news that they may not have to do the augmentation:cool1:I hope the botox helps her. It definately seems like they are doing it more now.Are they doing the botox at Cincinnati? Ty has all of his urological care done at Cincinnati.They have been amazing through this whole thing. They even sent us up to Chicago to see if they could help. He caths every 3 hours but doesn't have a mitrofanoff. He also does the gentimycin flush's and is on ditropan as well. Does she have kidney reflux as well?

Ty has his botox on May 18th. When is your friends daughters botox?Please let them know they are in my prayers:grouphug:

Yay that Katherine has no uro issues. The reflux is pretty scary for me with him I can't imagine it in a single kidney.:hug:

[wishin' on a star]

Yes, she'll have the botox in Cincinnati. Her VCUG this time was great, and showed no reflux. She isn't have the botox done until October. We're really excited to meet them at GKTW, as their little girl and Catherine are the same age.

yes, the whole single kidney thing is hard to deal with. It limits Catherine a lot. She had grade 3 reflux when she was born, but it was gone when the tested her at 18 months old. Just one of many miracles in our life. She's not allowed to play any contact sports where the kidney could get hit though. Thankfully, in kindergarten, it's not much of a risk, and the PE teacher is so good about making the games safe for her. I don't think she's ever had to just sit out and watch. However, on the soccer field every weekend...she has to be a cheerleader for her sister and brother. She takes it all in stride, thankfully!

[cantwaittoseemickey]

Yes, she'll have the botox in Cincinnati. Her VCUG this time was great, and showed no reflux. She isn't have the botox done until October. We're really excited to meet them at GKTW, as their little girl and Catherine are the same age.

yes, the whole single kidney thing is hard to deal with. It limits Catherine a lot. She had grade 3 reflux when she was born, but it was gone when the tested her at 18 months old. Just one of many miracles in our life. She's not allowed to play any contact sports where the kidney could get hit though. Thankfully, in kindergarten, it's not much of a risk, and the PE teacher is so good about making the games safe for her. I don't think she's ever had to just sit out and watch. However, on the soccer field every weekend...she has to be a cheerleader for her sister and brother. She takes it all in stride, thankfully!

That is so good to hear her vcug didnt show any reflux. I hope the botox helps her. The Augmentation seems like such an invasive surgery. We are so thankful they have been able to hold off this long for Ty.

What a great pe teacher Catherine has. Having great teachers definately help. :hug: to her for taking it all in stride. Ty does too thankfully. With him having to have the urodynamics test every 3 months just seems like it would be hard. He never complains about one test. Never says a word about all the dr apts or anything. Its just amazing. Just brings tears to my eyes what our kids go through but they keep on going. Definately strong kiddo's:love:

[cantwaittoseemickey]

I had to post this Ty funny. He was a big helper to dh this weekend working on the cars. They went to the store for a few things. When they came home I was sitting in Sierra's room talking to her as she had just came in from a Girlscout overnight. Ty walks in and says mommy we had a "messy situation" at the store:rotfl2: Apparently dh dropped some bottles and they busted all over the floor. Poor dh but oh Ty lol. I just had to laugh. He was as serious as could be:rotfl:

[cantwaittoseemickey]

This week has been a full week. Both kids had state testing and after today they will be all over with for the year:banana: Then we can countdown till summer vacation:cool1:

We also had to get a furnace and central air. Our furnace kept coming on and shutting off coming on and shutting off. And our air wouldnt keep our house below 78 degrees and Ty gets pretty heated so we went ahead and got it before it got too hot. Our furnace was the orginal one put in. So we got that done this week.

Ive also been working on washing and sorting our summer clothes. Trying things on and getting ready for a yard sale this year for the old clothes. And going through some of my stuff around the house trying to downsize. Too bad I can't downsize all of this paperwork :laughing:

[wishin' on a star]

I hate cleaning out drawers and sorting through that stuff! Good for you for getting it out of the way now. :thumbsup2

Sorry you had to buy a new AC and furnace...that's an expensive venture! :eek:

[cantwaittoseemickey]

I hate cleaning out drawers and sorting through that stuff! Good for you for getting it out of the way now. :thumbsup2

Sorry you had to buy a new AC and furnace...that's an expensive venture! :eek:

It sure was. I am so glad that is out of the way. Now we have to get our electric converted from fuses next week before we can't get a fuse to go back in. Our fuse sockets are stripped. Ahh one less thing to have done. But wow this stuff is a hefty price!

[cantwaittoseemickey]

We have a dinner reservation!:banana:

We will be going to Garden Grille on Thursday at 4pm to dine with Chip and Dale. :cool1:

We have ressies at 4pm which I think will work out great since we will be in Epcot that day and it will be toward the end of the day for us before we head back to GKTW for the Winter Wonderland.

[The Lurker]

I tried to respond to your message, but I am not very good at figuring out these boards. I post stuff and am never sure where it will end up. If you didn't get my response, I will try again.

Katie

[cantwaittoseemickey]

I tried to respond to your message, but I am not very good at figuring out these boards. I post stuff and am never sure where it will end up. If you didn't get my response, I will try again.

Katie

humm I dont see anything:confused3 I can understand. It took me forever to figure the board out!;)

[cantwaittoseemickey]

We have been invited by the wonderful people of these boards (I call them angels;)) to be apart of the Big Give!

I can't tell you all how excited we are. :banana:We can't wait to see what great things come! And I am so greatful that the family is included. Sierra has had a hard time sometimes and feeling "left out" as when we have gone to apts and admitted she has always had to go to grandma's as my husband could not take off work to watch her. So for her to be included it just really melts my heart. I want her to enjoy this trip as much as Ty. We are so happy that Harry Potter opened when it did because she is absolutely one of the biggest fans and is looking so forward to going there.(and it opens on her birthday:cool1:)

Another happy note too! I havent spoken to my sil since my fil's passing(not by my choice) and we have been texting back and forth all day. It has broken my heart so bad. And with not seeing my niece and nephew since (even on thier birthdays:sad1: I have had a really hard time. Many tears have been shed but I cannot change things they have to work out. Well she texted me last weekend and we have just "gabbed" away all day today. And I am so happy and thankful! I just hope hearts can heal.And this is a start!!

[wishin' on a star]

Hooray for the BIG GIVE!!! :cool1::cheer2::cool1::cheer2: We all know how amazingly generous they are. I am right there with you on making this trip about all of the kids. Certainly Catherine has been through more, but really, the other kids in these families have their own struggles and deserve this wish as well. :hug:

Good news about getting back in touch with your SIL. Family can never be replaced.

[cantwaittoseemickey]

We are sleep study bound:( Ty is having problems with paleness and fatigue so the pulmo has ordered a sleep study to rule out hypopsomething?? where he would be shallow breathing at night.He really feels it is more like a vasovagal response with his reflux though. Ty is dx'd with dyautonomia by symptoms rather then tests and he wants us to persue testing which will mean another trip to Cleveland Clinic or somewhere that sees kids for it which there arent too many that I am aware of. He mentioned Familial dysautonomia. He also asked why he hasnt had the nissen for his reflux. From what I understand the Nissen is not for kids with motility issues as it can cause some big problems. As bad as I dont want him to have hypopwhatever it is it seems like it would be the easiest to treat and it would give him the better chance of getting more energy during the day.

[cantwaittoseemickey]

Hooray for the BIG GIVE!!! :cool1::cheer2::cool1::cheer2: We all know how amazingly generous they are. I am right there with you on making this trip about all of the kids. Certainly Catherine has been through more, but really, the other kids in these families have their own struggles and deserve this wish as well. :hug:

Good news about getting back in touch with your SIL. Family can never be replaced.

They have done some wonderful things haven't they? And they are the most talented group of people I have ever seen.

[jenb1023]

Hi Tonya! Sorry to have been MIA lately. I was crazy busy and not on the boards for awhile and it is taking me forever to catch up on all of my threads!

I hope the sleep study helps you figure out the fatigue issues. We need Ty to be full of energy for his trip!

Wow - that 2008 trip was something - - and not in a good way. You are a much nicer and more patient person than I am. I would have heads rolling several times over things you went through. :rolleyes1

I know your Wish trip will be amazing! That is a lot of stuff to do in not a lot of time so make sure you use your WISH buttons wherever possible and plan for your top rides/shows at each park since it will be impossible to do it all.

Looking forward to hearing more about your plans and congrats on the Big Give!!!!

[Momofwishkid]

We are sleep study bound:( Ty is having problems with paleness and fatigue so the pulmo has ordered a sleep study to rule out hypopsomething?? where he would be shallow breathing at night.He really feels it is more like a vasovagal response with his reflux though. Ty is dx'd with dyautonomia by symptoms rather then tests and he wants us to persue testing which will mean another trip to Cleveland Clinic or somewhere that sees kids for it which there arent too many that I am aware of. He mentioned Familial dysautonomia. He also asked why he hasnt had the nissen for his reflux. From what I understand the Nissen is not for kids with motility issues as it can cause some big problems. As bad as I dont want him to have hypopwhatever it is it seems like it would be the easiest to treat and it would give him the better chance of getting more energy during the day.

Keeping Ty in my thoughts for the sleep study and Congrats on the Big Give!! These women and men are absolutley amazing!

[cantwaittoseemickey]

Hi Tonya! Sorry to have been MIA lately. I was crazy busy and not on the boards for awhile and it is taking me forever to catch up on all of my threads!

:thumbsup2 It is sooo hard to catch up isn't it? I try to check daily and still have a hard time keeping up:lmao:

I hope the sleep study helps you figure out the fatigue issues. We need Ty to be full of energy for his trip!

Definately! I think he will be ok as long as we allow him to rest and pack his cooling vest. Although Im still wondering how to get the icepacks on the plane:confused3

Wow - that 2008 trip was something - - and not in a good way. You are a much nicer and more patient person than I am. I would have heads rolling several times over things you went through. :rolleyes1

lol I did let things be known but found if I lost my cool then the family lost their cool so I held it together (sort of) till we got home:rotfl2:


I know your Wish trip will be amazing! That is a lot of stuff to do in not a lot of time so make sure you use your WISH buttons wherever possible and plan for your top rides/shows at each park since it will be impossible to do it all.

Thank you for the tip. I am getting ready to sit and make out some maps of things we want to do. I read it (in my 3 hours of reading the Dis) on a tr today that it works. Now if I just don't leave it all behind at the villa:eek:

Looking forward to hearing more about your plans and congrats on the Big
Give!!!!

Thank you! We are SO excited about the Big Give!:banana: I think my mom is as excited as I am lol. I keep calling her and telling her about it :rotfl:

[cantwaittoseemickey]

Keeping Ty in my thoughts for the sleep study and Congrats on the Big Give!! These women and men are absolutley amazing!

Thank you! I think it will be a while before he will have it as they asked me if I wanted a cancellation if it happens and that was before we even scheduled it:confused3 We don't have a date as they are waiting for the dr to get back to them on a question they have.

[cantwaittoseemickey]

I so keep forgetting to hit the multiquote button:laughing:

So today I called Cleveland Clinic and the clinic doesn't see kids. So they directed me to Rainbow Babies and I spoke with a nurse who told me they have openings in July the week we leave for Disney:scared1: umm no we can't do that. So I think its going to be quite a while. I also looked up Familial Dysautonomia and well nope that's not it either for sure. But there are different types so we will see.

I also sat here for 3 hours reading ONE tr today lol. I just love reading about the past Wish Trippers and looking at all the wonderful pictures that have been posted. Believe me I shed my share of tears today;) Since dh worked all day and the kids were in school I had a little "me" time. And what better way to spend it then being on the Dis:cool1:

Also this evening I finally tackled my fireplace:cool1:It was so dusty so I got it all cleaned up for the summer. I have wanted to do that for a while now so I'm glad to have gotten that all done. One thing off my list!

Tonight Ty put on a little "show" for us. He can wiggle his ears and put one eyebrow up while the other one is down and vice versa:rotfl2:Craziest thing I've ever seen:laughing: I told him his favorite character should be Dopey! I think he is adorable.We all do like our ears as they slightly stick out. And Ty has the extra bonus to be able to move them :rotfl2:

[wishin' on a star]

You go girl, cleaning up the fireplace...my house is so neglected these days! :rolleyes: My DH is out playing baseball tonight, so here I am on the DIS...yes I should be doing laundry :laundy: since I promised Carmella she would have a clean shirt to wear tomorrow! (My girls wear uniforms, and her other option is her jumper, and I guess in 2nd grade that is now very uncool. Who knew? :confused3)

Anyway, wow...that's a long time to wait for the sleep study!

[cantwaittoseemickey]

Yes it is. I think I will give them a reminder call tomarrow:thumbsup2 I love jumpsuits!! We have not had to wear uniform clothes but sometimes it would be easier with the rules they have here.

[cantwaittoseemickey]

Today was a very special day for me. I spent two hours with my sil and my niece:love: We talked and shed tears and talked some more and shed some more tears. It was so good to talk to her and see my niece who missed her auntie!!

[wishin' on a star]

Today was a very special day for me. I spent two hours with my sil and my niece:love: We talked and shed tears and talked some more and shed some more tears. It was so good to talk to her and see my niece who missed her auntie!!

That's awesome! :goodvibes

[cantwaittoseemickey]

Dh and I were sitting on the couch today talking since they were working on our electric. We had no electric for 5 hours:scared1: He looks at me and says "NOW i'm getting excited about Disney" :rotfl2: I told him it's about time lol.

Then yesterday I was on the phone asking about our ressies for Garden Grill to make sure we had the right time (yep;)) and they have me on hold and Ty looks at me with this hilarious face. "I HEAR DISNEY MUSIC!":rotfl2: He made sure to tell me that we are taking his cooling vest. Although I need to ask on the Wish trippers thread about packing that;)

[kellyw8863]

Yay for the Big Give!:cool1::cool1: They are an amazing group of people. I'm hoping to get involved myself once I get my TR all done. As for the cooling vest, Ali's mito doc told us not to bother with her. They really only work if there is little to no humidity, as they rely on evaporation in order to cool. Instead, we put ice in her enteral bags and bought misting fans at the Wal-Mart down the street from GKTW ($7 as opposed to $20 in the parks:scared1:). And other than that, we just resigned ourselves to the fact that we would not be spending any afternoons in the parks. It all worked out, as the girls LOVED being at GKTW.

[cantwaittoseemickey]

Yay for the Big Give!:cool1::cool1: They are an amazing group of people. I'm hoping to get involved myself once I get my TR all done. As for the cooling vest, Ali's mito doc told us not to bother with her. They really only work if there is little to no humidity, as they rely on evaporation in order to cool. Instead, we put ice in her enteral bags and bought misting fans at the Wal-Mart down the street from GKTW ($7 as opposed to $20 in the parks:scared1:). And other than that, we just resigned ourselves to the fact that we would not be spending any afternoons in the parks. It all worked out, as the girls LOVED being at GKTW.

We have the one that that uses evaporation but we also have the "sta cool" vest. It actually has these little icepack things in it. There are 2 in the front and 2 in the back. He loves this one and wears it anytime it is warm outside. He has already asked for us to take it with us. I was wondering how to pack the icepacks that go with it but I think I just figured it out. As of right now we will have to take some meds that must be frozen until use. So I could use those as the icepaks to keep to keep his meds cold. I am assuming I can carry on his meds in that cooler back and they shouldn't count against our carry ons.

[yinyanggirls]

Wow, you've had so much great news lately. I'm so happy for you guys!!!

[cantwaittoseemickey]

Wow, you've had so much great news lately. I'm so happy for you guys!!!

Thank you:) We are so greatful for things looking up!

Ok so a little more good news today! The DME guy called today and he is coming to the house this week to take a look at Ty's wheelchair to see if we can swap his handles and seat from his old wheelchair and put it on his new one. His old one just will not fold as the frame is messed up and his seat has his name on it and supports him alot better when he needs it. Granted he is not in it full time but when he is a little better support can certainly help. But we just arent sure they are compatable. He is driving a LONG way and we are so greatful.

Also after a bit of persistance we can have Ty's sleep study done close to home. That saves us from having to get a hotel room for the night which really helps. They wanted it done at the main hospital b/c of his gtube. But it all worked out. It is scheduled in June.

We hope to hear about our flights very soon. I'm getting a bit nervous about flying again. Im just not a great flyer at all but I know I can do this for my Ty. (I might need a bit of encouragement from my dis family):thumbsup2

[cantwaittoseemickey]

Found Ty some sandals to go over his afo's so he wont have to wear tennis shoes through the airport:banana:

[kdzbear]

Found Ty some sandals to go over his afo's so he wont have to wear tennis shoes through the airport:banana:

This is so exciting! Where did you find them? I am always on the look out for new shoes to go over Tyler's AFOs. I found the Hatchbacks website, but the shoes for boys are quite ugly while they have cute ones for girls!

[cantwaittoseemickey]

The ones I found are actually mens sandals.I like them much better then ones I have seen lately.

Here is a pic from this morning he was worn out and slept pretty much till it was time to catch the bus. He worked hard with daddy yesterday.

http://i74.photobucket.com/albums/i267/snickerb/015.jpg

[kdzbear]

The ones I found are actually mens sandals.I like them much better then ones I have seen lately.

Here is a pic from this morning he was worn out and slept pretty much till it was time to catch the bus. He worked hard with daddy yesterday.

http://i74.photobucket.com/albums/i267/snickerb/015.jpg

Those look comfy. My Tyler still wears a 7T, which is the same size his 2 year old sister wears. It is so hard to find such tiny shoes! However, I had not given much thought to sandals. I think I will look into that.

[cantwaittoseemickey]

Sandals are so much easier in the summer. Easy on and easy off and they allow some air to get to Ty's feet. I might be able to get him in a 6boys but those are so hard to find. Im still on the lookout for another pair. I hope you find something. Ty has a big foot. I miss the kids sizes with both of my kids. Sierra wears my shoes. She grabs mine instead of hers:laughing:

[yinyanggirls]

This is so exciting! Where did you find them? I am always on the look out for new shoes to go over Tyler's AFOs. I found the Hatchbacks website, but the shoes for boys are quite ugly while they have cute ones for girls!

I love Hatchbacks, but I agree the boys aren't that cute. I have never bought the tennis shoe looking shoes from them because I don't care for the look. It's so fun to have patent leather MJ's for her to wear with the AFos though. :cutie:

Love the sandals! I am so lazy and hardly ever put her AFOs on in the summer, but now that she has a walker, I probably will have to.

[cantwaittoseemickey]

I definately give Ty breaks out of them. Especially when he has so many bruises we give them time to heal. They aren't from the braces but rather from any little bump due to his Von Willibrands so if I start noticing alot he gets a break. He also gets a break on Gym days too. He was in Big Shots for a while (the bigger version of sure steps) and those were so much easier. I wish they would have worked out.

I tried to get him some hatchbacks a few years ago and they didn't come in his size. We have been getting Keeping Pace (they are getting ready to redo their line so keep an eye out next year:thumbsup2) and tried the Answer2 but those didnt seem to hold up as well as KP. I hope KP has a few more kid friendly styles in the future.

[cantwaittoseemickey]

The kids recieved thier first BIG GIVEpackage today!!:cool1::cool1::banana:

Thank you so much to the Laxton family! I'm so sorry I do not know your DIS name. Both Ty and Sierra both got a Disney gift card for $50 each!!!

Here they are after they just opened them
http://i74.photobucket.com/albums/i267/snickerb/Tylers%20Wish%20Trip%20to%20Disney%202010/Big%20Give/BigGivepictures006.jpg

Then Ty realises what they are:rotfl:
http://i74.photobucket.com/albums/i267/snickerb/Tylers%20Wish%20Trip%20to%20Disney%202010/Big%20Give/BigGivepictures007.jpg

Thank you so much! The kids are already trying to decide what they want to buy with them. I hurried and tucked them away in the suitcase already:rotfl2:

[cantwaittoseemickey]

I just realised the paint showed up on the wall in one of the pictures. Instead of just painting a small strip of a "possible" paint color dh decides to put a huge strip of it on the wall lol:rotfl:

[wishin' on a star]

Yippee for your first Big Give package! I'm sure your kids can find somewhere to spend that money!! :goodvibes

[llaxton]

I am glad they liked them! I thought they might enjoy picking something that is special to them there. I hope you guys have an awesome time!

[Mtopher4]

AWESOME Big give ;-):love:

[kdzbear]

Great Big Give gift! I am sure the kids are planning lots of possibilities now! :wizard:

[cantwaittoseemickey]

Thank you! They were both sitting on the couch last night after we got home from Sierra's band concert "discussing" thier plans:rotfl2:

[rcq925]

Congrats on the Big Give!!:cool1:

And already got your first present, woo hoo!!!:banana:

I am really enjoying reading your PTR!!

[cantwaittoseemickey]

We got another BIG GIVE package today:banana: THANK YOU!!!!!

Today's package was from Naomi (dis name Canyon Girl) and her family. Where do you all come up with these great ideas??:thumbsup2

Sierra is working hard to get the box open. She was in a hurry:rotfl2:
http://i74.photobucket.com/albums/i267/snickerb/BigGivenumber2002.jpg
Blue wraping her favorite color
http://i74.photobucket.com/albums/i267/snickerb/BigGivenumber2004.jpg
Tylers favorite color Dis Green
http://i74.photobucket.com/albums/i267/snickerb/BigGivenumber2005.jpg
Sierra got a Tinkerbell backpack for her things! In it was a note pad, a pencil and some jolly rancher lip balm. She loves it!!
http://i74.photobucket.com/albums/i267/snickerb/BigGivenumber2007.jpg
Tyler got a whale backpack perfect for SeaWorld!Some Hershey Kiss lip balm which looks SOOO good lol, a pencil, a note pad and a game perfect for the flight
http://i74.photobucket.com/albums/i267/snickerb/BigGivenumber2009.jpg
Here is mine and Tims goodies. This is just so cool! It's a survival kid I saw this on someone elses Big Give and loved it!
It has wipes to clean the plane and the kids
gum for the Take offs and landings
sunscreen
Nuts for protien to keep up with the kids:thumbsup2
Glow sticks to be able to see the kids to keep up (Ty already tried to snatch them but it didnt work :rotfl:)
First aid kit and moleskin because we kept up
aleve for the pain after keeping up
highlighter for the wonderful highlights of our trip
and an awsome cooler bag to keep it all in:cool1:
http://i74.photobucket.com/albums/i267/snickerb/BigGivenumber2010.jpg

Ok now some funnies from this Big Give. I was across the street at my neighbors house talking in her driveway and the ups guy goes past our house and across the street. Those neighbors ALWAYS get UPS deliveries so we were wondering what they ordered this time lol Well the guy gets out of the truck and heads towards OUR driveway and I short of nothing chased him down yelling at him HELLO HELLO!! :lmao: I think he thought I was some crazy woman! My neighber was laughing so hard at me.

After we opened the box Ty got out the newspaper and started reading them. On one of the pages it says something about a treasure hunt. He says MOMMY WE MISSED THE TREASURE HUNT!! NOW WE HAVE TO WAIT TILL NEXT YEAR!:rotfl2: I told him um Ty that's not OUR state! lol. He said OOOHHHH. :laughing:

Now we are headed over to my parent's house as we have some storms heading this way. Dh is at work so we go over there and ride them out.

[Mtopher4]

Awesome big give :-) Love the survival kit....:goodvibes

[wish_upon_a_star35]

Congrats on the big give items!!! I can't believe how close it is until your big day!!! It is going to go by so quickly!!

I know how important family is so I am very happy that you are reunited with yours! Family really has a way of making hard times so much easier. I wouldn't have made it through some rough times without mine.

[Canyon girl]

We got another BIG GIVE package today:banana: THANK YOU!!!!!

Today's package was from Naomi (dis name Canyon Girl) and her family. Where do you all come up with these great ideas??:thumbsup2


After we opened the box Ty got out the newspaper and started reading them. On one of the pages it says something about a treasure hunt. He says MOMMY WE MISSED THE TREASURE HUNT!! NOW WE HAVE TO WAIT TILL NEXT YEAR!:rotfl2: I told him um Ty that's not OUR state! lol. He said OOOHHHH. :laughing:

Now we are headed over to my parent's house as we have some storms heading this way. Dh is at work so we go over there and ride them out.

We're glad you guys got it ok! I'm so sorry to "upset" Tyler about the treasure hunt. :rotfl2: I didn't even think about what was on the papers. Have a great trip!

I hope you guys stay safe from the storms! I grew up in tornado alley, so I can certainly empathize! :scared1: Right before we moved from there, my kids got to know the bathtub intimately! Stay safe!

[kellyw8863]

Great BIG GIVE! Those bags are adorable!:goodvibes

[cantwaittoseemickey]

After packing my van full last night of 2 dogs, a cat, 2 kids, a baby gate, enough supplies for a few days for Ty and etc etc etc and heading to my parents it really didnt do much to which I am very thankful for. We sat outside on the porch until it got dark then headed in to play some cards. I won:laughing: which is rare since mom and dad have been playing alot longer than me.

Then I brought it all right back home minus one (Sierra stayed with grandma and grandpa;)) and lucky for me Tim had just pulled in from work and helped me carry it all back in. :worship:

[yinyanggirls]

Glad the storm turned out to be nothing. We had a couple of sirens when we lived in DFW and it certainly got my adrenaline going!
Great BIG GIVE. I love the survival kit and the cool backpacks. :thumbsup2

[cantwaittoseemickey]

Glad the storm turned out to be nothing. We had a couple of sirens when we lived in DFW and it certainly got my adrenaline going!
Great BIG GIVE. I love the survival kit and the cool backpacks. :thumbsup2

I have gotten better with storms but we have had some pretty nasty storms that have scared me pretty good. We also have a siren just down the road it is actually right across from my parents house. For some reason I dont want to be alone with the kids in the bigger storms. Probably because when Ty was little we went to a firework show and me Ty, Sierra my cousin and her grand daughter (Ty was 2 at the time) were caught up on a hill away from my husband and the rest of our family (we went for balloons) in a really bad storm. Came on really fast and tornado's were in the area and it was in another state. I had to carry Ty as he couldn't run and hold Sierra's hand and run and we finally met up with my family. They made us all leave the park so we had to drive to my aunts house. It was :scared1:

[wishin' on a star]

Awesome Big Give!! I love the backpacks and the goodies! The survival kit was a fun one here, also!

Hope you had a great Mother's Day. Your countdown is ticking away!!

[cantwaittoseemickey]

Congrats on the big give items!!! I can't believe how close it is until your big day!!! It is going to go by so quickly!!

I know how important family is so I am very happy that you are reunited with yours! Family really has a way of making hard times so much easier. I wouldn't have made it through some rough times without mine.

:hug:We have had a rough road with dh's family but it is getting there. My sil and her family are actually coming over THIS weekend:woohoo: The kids are so excited to get to see their cousins. And we are looking forward to seeing them.

I wouldnt have made it through alot of things if it weren't for my parents and sister as well.

[cantwaittoseemickey]

Awesome Big Give!! I love the backpacks and the goodies! The survival kit was a fun one here, also!

Hope you had a great Mother's Day. Your countdown is ticking away!!

Aww I hope you had a great Mother's Day too! It sure is! Going to go by fast now and I have soo much to do :rotfl2:

We went out to dinner with my parent's and sister and bil. dh's mom had to work:( We had a pretty good time. :)

[cantwaittoseemickey]

We got another BIG GIVE package today:cool1:

This one came from Ellen (Dis name ellenbenny) Thank you!

Ty loved the green wrapping paper!

http://i74.photobucket.com/albums/i267/snickerb/BigGive3004.jpg

http://i74.photobucket.com/albums/i267/snickerb/BigGive3005.jpg

Sierra's Tinkerbell outfit. This is so cute! It looks really good on her. I love the Tinkerbell on the shorts and the applique is really cute!! she loves it!I forgot to take a pic of the back of it. But it is really cute. The straps go in two little loops then tie. It is a really cool shirt for the warm months.
http://i74.photobucket.com/albums/i267/snickerb/BigGive3008.jpg
http://i74.photobucket.com/albums/i267/snickerb/BigGive3013.jpg

Ty's is a Goofy shirt. Wow this is such a cool shirt. I love the detail on it!! He LOVES the colors and his pal Goofy! I really like the way it looks on him!
http://i74.photobucket.com/albums/i267/snickerb/BigGive3011.jpg
http://i74.photobucket.com/albums/i267/snickerb/BigGive3012.jpg

She wrote a really sweet note too:love: They fit really well!

They also each recieved a postcard from Disney World. Ty's has all of the gang on it and was signed by Donald and Goofy:woohoo: And Sierra's has Mickey and Minnie Mouse and was signed by Minnie:lovestruc That was a pleasant surpise. Thank you to the Fairy God Mailer:)

[ellenbenny]

We got another BIG GIVE package today:cool1:

This one came from Ellen (Dis name ellenbenny) Thank you!

Ty loved the green wrapping paper!

http://i74.photobucket.com/albums/i267/snickerb/BigGive3004.jpg

http://i74.photobucket.com/albums/i267/snickerb/BigGive3005.jpg

Sierra's Tinkerbell outfit. This is so cute! It looks really good on her. I love the Tinkerbell on the shorts and the applique is really cute!! she loves it!I forgot to take a pic of the back of it. But it is really cute. The straps go in two little loops then tie. It is a really cool shirt for the warm months.
http://i74.photobucket.com/albums/i267/snickerb/BigGive3008.jpg
http://i74.photobucket.com/albums/i267/snickerb/BigGive3013.jpg

Ty's is a Goofy shirt. Wow this is such a cool shirt. I love the detail on it!! He LOVES the colors and his pal Goofy! I really like the way it looks on him!
http://i74.photobucket.com/albums/i267/snickerb/BigGive3011.jpg
http://i74.photobucket.com/albums/i267/snickerb/BigGive3012.jpg

She wrote a really sweet note too:love: They fit really well!

They also each recieved a postcard from Disney World. Ty's has all of the gang on it and was signed by Donald and Goofy:woohoo: And Sierra's has Mickey and Minnie Mouse and was signed by Minnie:lovestruc That was a pleasant surpise. Thank you to the Fairy God Mailer:)

Sooo glad the kids like their clothes and that everything fit!! I think the packages help build up the excitement for your upcoming trip. I hope it is truly magical!

Ellen

[wishin' on a star]

So cute! Ellen made the same style top for Carmella...just adorable!! I love the Goofy shirt! I wish John would wear something like that, but he's all t-shirts and gym shorts!

[Momofwishkid]

Love the Big Give stuff, especially the cool Goofy shirt

[cantwaittoseemickey]

We're glad you guys got it ok! I'm so sorry to "upset" Tyler about the treasure hunt. :rotfl2: I didn't even think about what was on the papers. Have a great trip!

I hope you guys stay safe from the storms! I grew up in tornado alley, so I can certainly empathize! :scared1: Right before we moved from there, my kids got to know the bathtub intimately! Stay safe!

Lol he has your newspaper in his room:lmao: I saw it in there tonight. It is the little things with that boy I tell ya. ;)

[cantwaittoseemickey]

Sooo glad the kids like their clothes and that everything fit!! I think the packages help build up the excitement for your upcoming trip. I hope it is truly magical!

Ellen

I cannot tell you how much this has helped our family. Instead of coming home and going and climbing in bed like Ty usually does he is asking if the mail came:rotfl: It is really making it all real. As a matter of fact I broke down and called the Wish Coordinator today asking if she by any chance had our flight information yet. I know she said she was busy till the end of April and I was going to hold off till next week but I couldnt wait:rotfl2: And we have so much coming up here soon that I didnt want to miss her call anyways.

Here is my to do list:
Clean every room including the basement
Ty has pt and a pre-op this week
My hubbys' family will be over this weekend
Next week Monday help dh put insulation in the attic
Tues Ty has his cystoscopy(biting nails here!! This is the one with botox. He will be the third to get it at our hospital) Please say a prayer for us that everything goes well.
THe following week at the 45day mark We have a few apts and field trips and I will need to pack for the wedding then we are off to Tenn for my cousins wedding:cool1:

Then we will be starting into June and apts the first 2 days of June, end of school parties, a 13th bday party for Sierra, Ty's sleep study

Wow these last two months are going to go fast!!!

[cajunfan]

Hi Tonya! Where in TN is the wedding you are going to? I am in the Nashville area!
Lynn

[cantwaittoseemickey]

Hi Tonya! Where in TN is the wedding you are going to? I am in the Nashville area!
Lynn

We will be going to the Monterey(sp?) area. I think it is East of Nashville. Are you guys ok? Did you get any flooding? My cousin told me about the stadium and the big hotel there being flooded. We saw pictures of Cooters Place (from Dukes of Hazard) but he said there wasn't any damage thankfully. I hope you didnt have any flooding at your house.

[cajunfan]

We will be going to the Monterey(sp?) area. I think it is East of Nashville. Are you guys ok? Did you get any flooding? My cousin told me about the stadium and the big hotel there being flooded. We saw pictures of Cooters Place (from Dukes of Hazard) but he said there wasn't any damage thankfully. I hope you didnt have any flooding at your house.

I actually live quite close to the Opryland Hotel and Opry Mills Mall. We left on that Sunday night at 9:30 pm (me two big dogs and my 16 yr old son) with nothing but the clotehes on our back because the water was rising so QUICKLY...we spent the night in my office...did not know of any where we could go that would take the big dogs like ours...when I saw pictures of Opryland Hotel Monday afternoon, I almost got physically sick...I was not very hopeful that we would escape the water. We went back to the house about 7:30 Monday evening to find that we were extremely blessed...our house stayed dry. (We are litereally 5 houses away from major flooding! ) Things will not be back to normal in the area for quite a while. I am not a TN native, so I am not real sure where Monterey is...I will have to ask...It is a beautiful state though!

Lynn

[cantwaittoseemickey]

I actually live quite close to the Opryland Hotel and Opry Mills Mall. We left on that Sunday night at 9:30 pm (me two big dogs and my 16 yr old son) with nothing but the clotehes on our back because the water was rising so QUICKLY...we spent the night in my office...did not know of any where we could go that would take the big dogs like ours...when I saw pictures of Opryland Hotel Monday afternoon, I almost got physically sick...I was not very hopeful that we would escape the water. We went back to the house about 7:30 Monday evening to find that we were extremely blessed...our house stayed dry. (We are litereally 5 houses away from major flooding! ) Things will not be back to normal in the area for quite a while. I am not a TN native, so I am not real sure where Monterey is...I will have to ask...It is a beautiful state though!

Lynn

Oh my goodness. Bless your hearts! I can understand taking your dogs with you to your office. I often wonder if something happens what will happen with my Ratties. I always try to take them with me when I know there is going to be bad weather. One time my cousin took her pugs into walmart during a really bad storm and they told her she was welcome to. What a Blessing to be able to return home to a dry house. Monterey I believe is near Cookeville if that helps? lol I know that is a small place.

Yes it is a very pretty state. We go to Gatlinburg quite a bit. As well as Cookeville. I love it down there.

[cajunfan]

I know where Cookeville is! My puppies are my babies...just ask my son...he swears I love the dogs more than him...I always say that I do because they do not talk back as much!:rotfl:

[cantwaittoseemickey]

I know where Cookeville is! My puppies are my babies...just ask my son...he swears I love the dogs more than him...I always say that I do because they do not talk back as much!:rotfl::rotfl2:

My cousin is the same way. Me too! I love my Ratties. Have you ever gone to the "Bark in the Park in cookeville"? We will make it to it eventually lol. We have been trying to get there if nothing comes up lol.

[xanphylus]

I love Ty's Goofy shirt!! If I ever figure out how to operate my sewing machine- that is my goal, to make a bowling shirt. I love them!! :goodvibes

Love your Big Gives!

[eyor44]

They also each recieved a postcard from Disney World. Ty's has all of the gang on it and was signed by Donald and Goofy:woohoo: And Sierra's has Mickey and Minnie Mouse and was signed by Minnie:lovestruc That was a pleasant surpise. Thank you to the Fairy God Mailer:)

:wave2:

[cantwaittoseemickey]

So cute! Ellen made the same style top for Carmella...just adorable!! I love the Goofy shirt! I wish John would wear something like that, but he's all t-shirts and gym shorts!

It is so light and perfect for warm weather. Ty loves his tshirts and shorts too. But he usually doesn't mind to stray away. As long as I button the shirts;)

Love the Big Give stuff, especially the cool Goofy shirt

I love Goofy's expression. Ty puts his hand up and leans on it all the time!

I love Ty's Goofy shirt!! If I ever figure out how to operate my sewing machine- that is my goal, to make a bowling shirt. I love them!! :goodvibes

Love your Big Gives!

I have a sewing machine sitting in the corner of the livingroom collecting dust. I have no idea how to use it. I did manage to make Ty some gtube cozies but everytime I did anything the bobbin thread would break. I gave up. I am not a sewing person. I think I just had some wishful thinking:rotfl2:

I received another phone call from Ty's teacher yesterday. This one was telling me how proud she is of him. They had a new student and Ty has never seen him before. When it was time for Ty to say his name and things he likes etc he spoke right up and he even made eye contact! She also said he was chattering away during class when he was spoken too. I am just on :cloud9: with the progress he is making socially.

I had to fill out these cards for Weakly Reader for his school.He took them in yesterday and those who brought them back was allowed to pick out a small rubber duck. He picked out the one with a green hat and camafloug on it. It happened to be a prize duck. He got to keep it and recieved one of those rubber bracelets. I cannot count the hugs I got yesterday and this morning from him telling me thank you. He loves that little duck. It just tickles me when he does things like this.

[pacrosby]

YAY..................I'm all caught up with YOU now too!!!! You've certainly been a chatty Patty haven't you???

So happy to hear that you all have been chosen for the Big Give!!! Makes it all that much more "real" I bet huh? Keep those px coming.............I love seeing all the goods (and the smiling faces:))

It was nice of Ty's teacher to let you in on his recent accomplishments. I'm sure she knew how much it would mean to you. The little things often warm the heart the most don't they????

[cantwaittoseemickey]

:wave2:

:flower3::hug:

[cantwaittoseemickey]

YAY..................I'm all caught up with YOU now too!!!! You've certainly been a chatty Patty haven't you???

LOL!!! I have haven't I!! I had to so I didnt feel so lonely with everyone being gone to Disney (and going soon) :rotfl2:

So happy to hear that you all have been chosen for the Big Give!!! Makes it all that much more "real" I bet huh? Keep those px coming.............I love seeing all the goods (and the smiling faces:))

Thank you:) It sure does. I can't even begin to tell you how many smiles I have seen from Ty with these Big Gives!

It was nice of Ty's teacher to let you in on his recent accomplishments. I'm sure she knew how much it would mean to you. The little things often warm the heart the most don't they????

They sure do. I am looking for something very special for her end of the year gift. I got to let my "guard" down a little bit this year thanks to her.

[cantwaittoseemickey]

Oh and guess what!

LESS THAN TWO MONTHS!!:cool1::banana:

[Canyon girl]

Lol he has your newspaper in his room:lmao: I saw it in there tonight. It is the little things with that boy I tell ya. ;)

:rotfl2::lmao::happytv::rotfl: That is too funny!!! I find that it is the little things with my kids, too! You are on the less than 60 day countdown! Have a GREAT time! Take the time for the "little" things on the trip, too!

[cantwaittoseemickey]

I can't believe it! I have soo much to do too:eek: We have a day by day schedule but we will throw it out the door if needed. ;) Although I am getting ready to redo it b/c we have a tentative flight. But once I get confirmation then I will work on it again. Should be next week:woohoo:

[cantwaittoseemickey]

Ty and Sierra recieved another BIG GIVE package today:banana:

It was from Wendy (Dis name billwendy) Thank you!!:love:

The kids loved the Mickey Mouse paper you wrapped them in. Soo cute!
They each recieved a pillowcase. Sierra's is Tinkerbell and Ty's is Mickey Mouse. Sierra's has her name embroidered in multicolor thread and Ty's is Blue. I absolutely LOVE these pillowcases. They are a very soft flannel and oh so cozy! They wanted to take them with them to my sil's house tonight (more on that in a minute:thumbsup2) But I said nope they get packed away in with our other pixie dust for the trip.

Here are some pictures I took. This is right before Ty fell asleep for 2hours on the couch. He wasn't feeling great. He went on a field trip today and he was plumb worn out. And I think he is coming down with something (again more on that in a bit)
http://i74.photobucket.com/albums/i267/snickerb/BigGive4002.jpg

http://i74.photobucket.com/albums/i267/snickerb/BigGive4003.jpg

http://i74.photobucket.com/albums/i267/snickerb/BigGive4004.jpg


And here are some close ups
http://i74.photobucket.com/albums/i267/snickerb/biggivepillowcases001.jpg

http://i74.photobucket.com/albums/i267/snickerb/biggivepillowcases003.jpg

http://i74.photobucket.com/albums/i267/snickerb/biggivepillowcases002.jpg

To be continued....

[cantwaittoseemickey]

I am not sure what is up with my photobucket account but it is acting very wierd.:confused3

So today my sil and niece came over. I had gone in the house for a minute and came back out to find my sil and hubby hugging and crying. We talked and talked and talked and cried and cried and cried. Sierra came home and my niece ran up to her and they hugged forever. Then Ty came home and they unwrapped their BIG GIVE gifts. Ty had woken up this morning not feeling great. Sore throat and a slight cough. But he insisted on going to school on his field trip so I said ok. His teacher actually called to tell me how good he did. After they unwrapped their pillowcases Ty was out for a nap for about 2 hours. My bil and nephew came over a little later while Ty was asleep then he woke up and we all went out to eat at a local restaurant and he seemed ok. Then on our way out they all started begging to stay all night with my sil (her kids wanted my kids to stay with them):scared1: Um what? Ty has only stayed with my sister a handful of times and my mom 3 times and they just live around the corner.My sil lives in the country! Well what can I say? He wanted to stay with someone his own age (my nephew) so how could I say no? So I gave sil and crash corse in his meds, his pump and feeds, cathing and she is already familiar with siezures and knows how to use the rescue med. He knows pretty much how to do it all so he can tell her. She knows about his swallowing disorder and what to expect and is brushed up on her CPR and Heimlich. She is certified so that's good.Welcome to my world!! lol So now I sit here wondering if I made the right decision. Dh said he didnt think Ty looked good at the restaurant and Ty will keep on going and not tell her then have problems later on from exhaustion.

Why is it so hard to let them be "normal"? So hopefully he will be ok and hopefully he isnt coming down with anything. Sil will take good care of him she will call me if she notices anything but he has NEVER ever been this far away from me and dh. I actually feel a little lost tonight. Scared, nervous and happy all at the same time. But still hoping I made the right decision.
It's going to be a long night. But they will be here bright and early in the morning. And Sierra is with him too.

[cajunfan]

Well, how did it go?

[cantwaittoseemickey]

It went great! He fell asleep shortly after they got there and slept till she woke them up to come home. And I got some sleep too. ;)

We had a great visit yesterday with everyone. And after at least 4 year of trying to find a decent used treadmill I found one:banana: as well as an excersize bike :cool1: So I think I have a little over a month and a half to go strong and get my legs ready for all the walking we will do.

Sil told me about a restaurant at MK in the Pirates of the Carribean area. I am going to check it out today. We couldnt figure out the name of it though so I have some digging to do unless someone knows the name:confused3 She said it has lanterns in it and you can watch the boats go by. That sounds like something Ty might like to do.

[Canyon girl]

Tonya,

There is a restaurant like that at DLR called Blue Bayou. I don't remember one at MK. At MK, you can eat at Pinocchio Village Haus and see part of It's a Small World. Also, in Epcot, you can eat at San Angel Inn and watch part of the Mexico ride (name escapes me). Village Haus is counter service. San Angel is table service, so you might need an ADR.

[cantwaittoseemickey]

I will have to ask her again. I couldnt find anything so I am also thinking she is confusing it with DLR. But dh thought she said they ate there in 08.

[cajunfan]

Definitely not one at WDW...Previous poster is correct about Pinocchio's Village Haus and being able to see the Small World Boasts launch (it is upstairs if I am not mistaken...never actually did this one) And the Mexico pavillion at Epcot.

Glad everyone was able to get some sleep!

Lynn

[cantwaittoseemickey]

Thank you both. I will have to look them up. The Small World seems like it would be pretty neat. We have never been to the Pavillions at Epcot. We have walked by them but never went in;)

Tomorrow is the day! Ty has his botox and cystoscopy. Dh is very nervous and this is very unlike him. It is because he knows this is our last hope to keep from the augmentation surgery. If you could please spare a prayer for Ty tomarrow morning.

[cajunfan]

Sending prayers your way! I hope everyting goes smoothly for Ty! Please update us on the progress when you can!:grouphug:

Lynn

[cantwaittoseemickey]

The botox and cystoscopy went well. The dr said we should be out of the side effect window in a week so if all goes well till then it should be ok. He came home with a foley catheter which was totally unexpected. He will have it in till Friday. He was supposed to go on a field trip Thursday with his class and he is determined to go. I have no idea how they will get him there though as he cannot ride the bus and we will have to take his wheelchair. So we will see how tomarrow goes at home then decide. We will call in a month to give an update then he will go for followup testing in 3 months. So it was a changed a little bit on us which is great since now he wont have to go back till after his trip to Disney. He said the augmentation is definately not off the table which was hard to hear but we have to give this a chance to see how it goes. I am so relieved this step is done.

[billwendy]

Ty and Sierra recieved another BIG GIVE package today:banana:

It was from Wendy (Dis name billwendy) Thank you!!:love:

The kids loved the Mickey Mouse paper you wrapped them in. Soo cute!
They each recieved a pillowcase. Sierra's is Tinkerbell and Ty's is Mickey Mouse. Sierra's has her name embroidered in multicolor thread and Ty's is Blue. I absolutely LOVE these pillowcases. They are a very soft flannel and oh so cozy! They wanted to take them with them to my sil's house tonight (more on that in a minute:thumbsup2) But I said nope they get packed away in with our other pixie dust for the trip.

Here are some pictures I took. This is right before Ty fell asleep for 2hours on the couch. He wasn't feeling great. He went on a field trip today and he was plumb worn out. And I think he is coming down with something (again more on that in a bit)
http://i74.photobucket.com/albums/i267/snickerb/BigGive4002.jpg

http://i74.photobucket.com/albums/i267/snickerb/BigGive4003.jpg

http://i74.photobucket.com/albums/i267/snickerb/BigGive4004.jpg


And here are some close ups
http://i74.photobucket.com/albums/i267/snickerb/biggivepillowcases001.jpg

http://i74.photobucket.com/albums/i267/snickerb/biggivepillowcases003.jpg

http://i74.photobucket.com/albums/i267/snickerb/biggivepillowcases002.jpg

To be continued....

:cool1::cool1::cool1: Im so glad that they liked them!!! Have a wonderful trip!! GKTW is totally awesome!!!!

[cantwaittoseemickey]

Ok I feel like I'm slacking. ;) Ty has had a few rough days and nights so I have been so tired. After today it should get better since his catheter is out. That was pretty hard on him. He is still sleeping so I thought I'd do a quick update.

I am still waiting on our Wish Coordinator to give me a call with our final flight times. I was supposed to hear from her this week but she hasn't called yet. I know she is really busy right now. Hopefully we will hear from her today. I have something in the works and I need to get the flight schedule so I can let them know the days that work for us.

The kids recieved another BIG GIVE package on Wednsday.

It was from Kim from NC (I'm sorry I don't have your disboard name handy.Ty has it in his room with him)

They each recieved a bag with celebration Mickey head balloons on them.
Ty recieved a coloring book, two boxes of crayons, a mickey mouse pop out card and a blow out party favor that they plan to blow when the limo arrives:rotfl: and a pencil.
http://i74.photobucket.com/albums/i267/snickerb/011-2.jpg
http://i74.photobucket.com/albums/i267/snickerb/015-1.jpg

Sierra recieved the same bag with a Camp Rock poster,a sandal keyring, some Hannah Montana magnets and a pencil as well as a party favor to blow when the limo arrives:)
http://i74.photobucket.com/albums/i267/snickerb/020.jpg
http://i74.photobucket.com/albums/i267/snickerb/022-1.jpg
http://i74.photobucket.com/albums/i267/snickerb/024-1.jpg

They both really loved everything. Sierra put her poster on her wall already:laughing: Thank you so much!!!

Here is a pic of Ty with his doggies. Lily the black and brown one and Stormy the black and white one.
http://i74.photobucket.com/albums/i267/snickerb/016-1.jpg

[cantwaittoseemickey]

FLIGHTS ARE BOOKED!!!:banana: Our flights are booked and limo is confirmed.

The limo will pick us up at 5am and we fly out at 8:45am then on our way back we fly home at 8pm. AWSOME flight times:cool1:

Hopefully next week I will have a final tentative schedule :lmao:

[cantwaittoseemickey]

Got the final confirmation on our "surprise"! So I have the tentative Itinerary completed. We will play it all by ear depending on how its going but here it is:thumbsup2

Saturday-Arrival, check in and Walmart stop for some milk and the much needed Mountain Dew;) Orientation, plenty of swimming and checking out GKTW.Sign up for Mayor Claytons tuck in and enjoy some Dino Putt.

Sunday-Universal/IOA-Jaws, Harry Potter, Largest Candy Land game

Monday-Sea World-feed the dolphins, see Believe, and ride some cool rides. but first.... RIDEMAKERZ private building experience:banana: This is the surprise I was working on. :banana: We will arrive before they open and have plenty of time to build a car. Ty is so excited about this place. What a wonderful group of people to do this for us!! I really wanted to do this for Ty but I couldn't imagine him doing this while it was crowded in there and get to enjoy it. So now he will and get to do it at his own pace too! Then probably back to GKTW before too late so we can swim and enjoy the surroundings.

Tuesday-Animal Kingdom/Disney Hollywood Studio's-This one we have lots we'd like to do.Too much to list at AK since we have never been there and DHS one of the most important things is to get Dh, Ty and Sierra (notice I did'nt say ME:rotfl2:) on Tower of Terror

Wednesday- Horseback Riding at Keetons Corral,Magic Kingdom-This one we need to sit down and go through the map and get the most importants, BBB

Thursday-Epcot, Dinner at Garden Grille, most importants is Test Track, Mission space and a few other things. Arrive back at GKTW by 6pm for Winter Wonderland

Friday-We can stay at GKTW or go to Downtown Disney and look around. I think we will play this one by ear. Then head to the airport to head home to see our doggies who we will miss so much!

[Canyon girl]

You mentioned Lights Motor Action on your Universal day. That show is actually at Hollywood Studios. Just a heads up. Looks like a great schedule!

[cantwaittoseemickey]

Thank you! I didnt realise that. I will fix it. Thanks:)

[rcq925]

Great plan! Can't wait to hear about RIDEMAKERS!!

You guys are getting really close now!!! How exciting!:goodvibes

[cantwaittoseemickey]

Today I have been working on my trip binder. I really like how its looking. I feel like I will be able to find anything I need. And jot down things that I don't want to forget to do. I am trying to get it done this week but I have alot of copying over to do:rotfl2:

[cantwaittoseemickey]

So it's 1:30am and why am I still up? B/c Ty will not go to sleep!So what better thing to do then to see if we can get in at Chef Mickeys.

We have a ADR for CHEF MICKEY'S!!:banana::cool1:

I will update the above Itinerary tomarrow. So now I'm not sure we will keep the Garden Grill. Oh I need to do some thinking!

[The Moonk's Mom]

Ok I feel like I'm slacking. ;) Ty has had a few rough days and nights so I have been so tired. After today it should get better since his catheter is out. That was pretty hard on him. He is still sleeping so I thought I'd do a quick update.

I am still waiting on our Wish Coordinator to give me a call with our final flight times. I was supposed to hear from her this week but she hasn't called yet. I know she is really busy right now. Hopefully we will hear from her today. I have something in the works and I need to get the flight schedule so I can let them know the days that work for us.

The kids recieved another BIG GIVE package on Wednsday.

It was from Kim from NC (I'm sorry I don't have your disboard name handy.Ty has it in his room with him)

They each recieved a bag with celebration Mickey head balloons on them.
Ty recieved a coloring book, two boxes of crayons, a mickey mouse pop out card and a blow out party favor that they plan to blow when the limo arrives:rotfl: and a pencil.
http://i74.photobucket.com/albums/i267/snickerb/th_011-2.jpg
http://i74.photobucket.com/albums/i267/snickerb/th_015-1.jpg

Sierra recieved the same bag with a Camp Rock poster,a sandal keyring, some Hannah Montana magnets and a pencil as well as a party favor to blow when the limo arrives:)
http://i74.photobucket.com/albums/i267/snickerb/th_020.jpg
http://i74.photobucket.com/albums/i267/snickerb/th_022-1.jpg
http://i74.photobucket.com/albums/i267/snickerb/th_024-1.jpg

They both really loved everything. Sierra put her poster on her wall already:laughing: Thank you so much!!!

Here is a pic of Ty with his doggies. Lily the black and brown one and Stormy the black and white one.
http://i74.photobucket.com/albums/i267/snickerb/th_016-1.jpg


Hi!:wave: It's me! Kim from NC! Glad the kids liked the stuff and hope your trip is great! Love the doggies! Sooo cute!:goodvibes

[wishin' on a star]

Hey Tonya! I'm working on getting all caught up on everyone here! Looks like a couple more cute big gives. I'm glad that the botox seemed to go okay. I hope this avoids the augmentation.

Sounds like you have been doing lots of planning!! Hooray for Chef Mickey's! Whether to cancel Garden Grill? We liked our breaks for sit down meals, but it is definitely more expensive. My kids really liked the two character meals we did though. So exciting about the Ridemakerz experience! I saw Tami one day at DHS, but forgot to ask her how that went.

[cantwaittoseemickey]

Hi!:wave: It's me! Kim from NC! Glad the kids liked the stuff and hope your trip is great! Love the doggies! Sooo cute!:goodvibes

Thank you again! The kids loved it! I feel like I can't thank each of you enough. Beyond anywords :lovestruc

Hey Tonya! I'm working on getting all caught up on everyone here! Looks like a couple more cute big gives. I'm glad that the botox seemed to go okay. I hope this avoids the augmentation.

Sounds like you have been doing lots of planning!! Hooray for Chef Mickey's! Whether to cancel Garden Grill? We liked our breaks for sit down meals, but it is definitely more expensive. My kids really liked the two character meals we did though. So exciting about the Ridemakerz experience! I saw Tami one day at DHS, but forgot to ask her how that went.

To do them both would be a bit pricey for us so It will need to be one or the other unfortunately. But I did tell the kids this morning and they are excited. I told Ty about Chef Mickeys could get loud and they seem to dance around in there and he said he thinks he will be ok. Could this really be the start of him tolerating more?? Maybe because he's older? We will have his headphones with us and I'm sure if Goofy is there he will poke fun at them:rotfl2: The food definately sounds good and there seem to be something on the bar for everyone.

It's on our Sea World day at 5:05pm. I hope we are done with Sea World by then as we will be getting a late start to that as well with the Ridemakerz being that morning. Ahh oh well time will tell.

[wishin' on a star]

Thank you again! The kids loved it! I feel like I can't thank each of you enough. Beyond anywords :lovestruc



To do them both would be a bit pricey for us so It will need to be one or the other unfortunately. But I did tell the kids this morning and they are excited. I told Ty about Chef Mickeys could get loud and they seem to dance around in there and he said he thinks he will be ok. Could this really be the start of him tolerating more?? Maybe because he's older? We will have his headphones with us and I'm sure if Goofy is there he will poke fun at them:rotfl2: The food definately sounds good and there seem to be something on the bar for everyone.

It's on our Sea World day at 5:05pm. I hope we are done with Sea World by then as we will be getting a late start to that as well with the Ridemakerz being that morning. Ahh oh well time will tell.


I'd definitely go with Chef Mickey's then! We were pleasantly surprised with the amount of money Make a Wish gave us for the trip. It allowed us to do a couple of meals we definitely wouldn't have done on our own budget! Plus, being able to eat for free at GKTW when you are there really helps you to be able to use your expense money on things you might not normally do!

[Canyon girl]

I have to say that food wise, Chef Mickeys wins hands down! There are many choices for all food, including desserts. It does get extremely loud and chaotic, though. My son has some sensory problems and was able to handle it okay. The characters only come by once, and if the kids are at the buffet, the characters typically do not come back by. What I loved about Garden Grill was that the food came to us. DD is a picky eater, and they let her eat from the kids meal. The desserts, though, are limited. One item for kids, and one item for adults. The characters at Garden Grill came around several times when we were there. It is really funny because I have so many pictures from that meal. :lmao: What bothered me about Garden Grill was the rotation. Since I had my kids, I can not tolerate twirling rides. You should see my face after the teacups. Anyway, it is a really slow turn, but it really affected me. I had a severe headache by the time our meal was over! If Tyler can handle the chaotic nature of Chef Mickeys, definitely keep that one!

[cantwaittoseemickey]

I'd definitely go with Chef Mickey's then! We were pleasantly surprised with the amount of money Make a Wish gave us for the trip. It allowed us to do a couple of meals we definitely wouldn't have done on our own budget! Plus, being able to eat for free at GKTW when you are there really helps you to be able to use your expense money on things you might not normally do!

I'm not sure if our expense check will be different this time from when we were supposed to go in Feb but I was quite shocked at the amount we did receive. I am sure it is no where near the amounts others are getting at least it would seem:confused3 Regardless I am happy with any amount they offer us as this whole trip is just an unimagineable blessing. But I just know we need to be careful what we do plan and to budget very carefully.

[cantwaittoseemickey]

I have to say that food wise, Chef Mickeys wins hands down! There are many choices for all food, including desserts. It does get extremely loud and chaotic, though. My son has some sensory problems and was able to handle it okay. The characters only come by once, and if the kids are at the buffet, the characters typically do not come back by. What I loved about Garden Grill was that the food came to us. DD is a picky eater, and they let her eat from the kids meal. The desserts, though, are limited. One item for kids, and one item for adults. The characters at Garden Grill came around several times when we were there. It is really funny because I have so many pictures from that meal. :lmao: What bothered me about Garden Grill was the rotation. Since I had my kids, I can not tolerate twirling rides. You should see my face after the teacups. Anyway, it is a really slow turn, but it really affected me. I had a severe headache by the time our meal was over! If Tyler can handle the chaotic nature of Chef Mickeys, definitely keep that one!

I really would love to do the Chef Mickey's but now Im really wondering if it is doable. Since we will be in Sea World that day and not arriving till between 10-11am and needing to leave at around 4pm to get to Chef Mickeys, it seems to be cutting alot into our day at Sea World. :confused3 I have been calling and checking for another day when we are in the Disney World parks so we could just take the Monorail there but nothing yet.

[cantwaittoseemickey]

45 days:cool1::banana:

[cantwaittoseemickey]

A BIG thank you to Canyon Girl (Naomi) for helping me with a new itinerary. I will try to post it later or next week but I think I can feel safe and cancel the Garden Grille and keep Chef Mickey's now. We moved some parks around to make it easier then leaving Sea World early.

Anyways we are off to Tenn for the weekend. I hope you all have a wonderful Memorial Day weekend. I might have a bit of time later to get back on and post one more post but it depends on how much I've gotten done. I really hope Im not this bad when it comes to packing for Disney:lmao: I am looking forward to seeing my cousin (my bff) and meeting her new husband. Ty is having a really hard time not understanding that we aren't going to see Uncle S. Last night he told me I WANT TO SEE UNCLE SSS!!! :sad2:

I will try to take some pics if I remember to get the camera out. I would love to take some pics of the bluffs. hugs!

[wishin' on a star]

Have a great trip!:goodvibes

[Laurensmom2004]

I've been catching up on your ptr......you guys be there the same time as us -If I'm reading right- Your kids seem fabulous!!!!!!!!!

I'm so loving the outfits, etc. from the Big Give....there are some amazing people here!

Jeannie-Lauren's Mom MAW July 11-17

[cantwaittoseemickey]

Hi welcome to my ptr! We are happy to have you hear! I was hoping someone else would be going during our time:cool1:Maybe we can schedule a meet!Our trip is July 10-16.Would Love to meet you all!

We just got in from the wedding in Tenn. I will post tomarrow. On a funny note my sister called me to let me know the kids recieved a BIG GIVE box while we were gone. Only it was the box of his home medical supplise they were on back order . :rotfl: Glad I didnt say anything to the kids lol. We had a good time. more tomarrow:)

[Canyon girl]

A BIG thank you to Canyon Girl (Naomi) for helping me with a new itinerary. I will try to post it later or next week but I think I can feel safe and cancel the Garden Grille and keep Chef Mickey's now. We moved some parks around to make it easier then leaving Sea World early.


You are very welcome! I hope you had a great trip to TN! You so would have been in trouble if you had said something about the box!

[cantwaittoseemickey]

You are very welcome! I hope you had a great trip to TN! You so would have been in trouble if you had said something about the box!

Funny how my sister is just as excited about all of this as we are. Just goes to show you how many lives the Big Givers have touched in everything they do:love:

[cantwaittoseemickey]

We can officially say we will be in Disney NEXT MONTH!!:cool1:

[cantwaittoseemickey]

I figured I would post a little on our trip to Tenn this weekend. It was an eye opener but we had a great time.

Before we even got started I had to run Ty to the ped for a uti. So that backed us up a little which was fine. Rather take care of it before we leave then him to start having problems on the trip. Then started the packing of the van. Now little did I know I could have had the hhc ship some of his things to the first hotel but oh well live and learn. But wow we had it loaded down between Ty's things our things and my parents things.But we did it and it worked out.I figured this would be good practice for they Disney trip:rotfl2:Well lets just say I can REALLY pack! I hope I do a little better then this ;)

The wedding photographer tried several times to get Ty to smile and finally he just came up to us and said"listen little dude. You give me ONE smile and I promise I won't bother you for the rest of the night" Before he even got it all the way out Ty had a grin on his face:rotfl2:I hope my cousin gives me some copies b/c he got some really great shots of the kids looking at the pond which is where Ty spent most of his time.
On our way there Ty had remembered he seen a small cave along side the road our last trip down there 3YEARS ago :)Him and my mom spent alot of time looking for it. I looked up from reading something and well there it was. Ty got to see it but my mom missed it. She was not very happy that I just looked up and there it was after all that time:rotfl2:

We also seen a helecopter take off right beside the road between the mountain. Last place we would have thought to see a helecopter.

We had a great time. Ty had a bit of a hard time between his swallowing and the transition on the way home so it was a bit of a "long" ride for me. Everytime Sierra's doll hair touched his pillow he had to pick every strand off. We also came back with several hoarding things. :sad2: Finally not too long before we got home Sierra got him talking and not focusing on what was touching what. I did learn that with this trip it requires alot more packing and planning then I had realised for Ty but overall I am happy how it went. He didn't have any meltdowns and slept pretty well. Meds and feeds timing were a bit of a challenge but we did it:)

[Laurensmom2004]

Ok Tonya....I've looked everywhere!!!! How did you find the schedule of weekly happenings at GKTW? I've been reading your PTR and saw where you were planning on getting back in time for the Christmas party/celebration......thanks for any info!!!!!
btw I HATE all the struggles your little prince has been through....but us moms know that it's what made them what they are today....someone we wouldn't trade for anything in the world!!!!

[cantwaittoseemickey]

Ok Tonya....I've looked everywhere!!!! How did you find the schedule of weekly happenings at GKTW? I've been reading your PTR and saw where you were planning on getting back in time for the Christmas party/celebration......thanks for any info!!!!!
btw I HATE all the struggles your little prince has been through....but us moms know that it's what made them what they are today....someone we wouldn't trade for anything in the world!!!!

Thank you:hug: Yes it has definately made him what he is today. He is a teacher to me in so many ways. More then he will ever know:) Lauren has gone through so much as well. These kids really need some happiness in their lives. Something to smile about to talk about to see and do. Nothing to do with medcial. Just bright cheery and a memory they will put aside in a special place. And from what I have heard so far it is going to be quite the experience! And what a blessing MAW and other Wish granting organizations have given them and our families. I hope Lauren and your family have a FABULOUS TIME!!

Here is the schedule
http://www.gktw.org/pre/Village/schedule.asp?p=village This helped me a ton!;) There are just some things we don't want to miss at the village and Christmas is definately one of them:yay:

[cantwaittoseemickey]

We are on the final two days of school:cool1: Ty is supposed to have field day today but I am pretty sure it will be cancelled with the weather forcast showing rain and storms. He was really looking forward to it. I had went and bought some little things called Frogg Toggs CHilly Pads that you can put in water and they stay cold for quite a while. We tested them out and and planned on using today instead of taking his cool vest to school. They are definately going to Disney;)

Ty and Sierra both had thier annual eye exams yesterday. Ty's astigmatisim is a bit worse but his farsightedness is better:cool1:He said his eyes look pretty dry so he now has to have some thick gelled eye drops put in every night. He is hoping it will help with some of the light sensitivity he has as it could be the dryness irritating them when the light hits. Sierra just needs reading glasses again which wasn't unexpected as he had said before she will go through times of needing them and not needing them. She has a hard time focusing. Other than that we are good to go. Oh and Ty picked out GREEN glasses:rotfl2: So all in all not too bad. Ty did great with the eye drops last night.

Yesterday when I went out to get some teacher gifts I picked up a journal to begin to write in for Ty. I am documenting everything from the day I began my post on here till the day we get back and I am going to give it to him along with a scrap book of his trip. I want to document every day while we are there (it will make my tr easier too;)) We are doing the countdown big time now. We have 37 DAYS:banana: