Sometimes Fairies have to EARN those wings! Ty's MAW TR July 10-17 2010

[xanphylus]

Just finished reading everything! I had been keeping up, but never actually posted..... oops. Great trip and super fast posting of the whole TR! This was great!!! I felt like you were writing it just for me because every time I checked the dis, you had a new installment!! And you finished too! Is this a record or something?!?!

Seems like a great trip with memories of a lifetime!! So happy for you!!!

 

[cantwaittoseemickey]

I am enjoying your TR. I am so glad the outfits fit! Can't wait to hear about the airport adventure. Sounds interesting.

Jen

Thank you Jen It got a little hectic at the airport for a bit but we made it without too much of Ty getting out of sorts.

aw Tonya it sounds like you guys had an amazing trip and I'm so so glad!!!!!!

We did have a great trip. I still can't believe we didn't get to meet up I should have gotten your number so we could. I was so hoping for Christmas night but it really ended up being a flop with the rain and all. I felt bad for those people on the carraige ride getting drinched!

 

[cantwaittoseemickey]

Just finished reading everything! I had been keeping up, but never actually posted..... oops. Great trip and super fast posting of the whole TR! This was great!!! I felt like you were writing it just for me because every time I checked the dis, you had a new installment!! And you finished too! Is this a record or something?!?!

Seems like a great trip with memories of a lifetime!! So happy for you!!!

lol thank you I was so afraid my computer would crash before I got it done.



Ok so even though I have the TR done doesn't mean you all have to leave me I will post updates on Ty and us off and on here unless it gets totally deserted We are also planning a Non Disney trip in October for a weekend hopefully so I will add it here too. I also just found out my sil is wanting to sell her Disney Collectables and well who better to buy them from her then me?? If they aren't too much. I have decided to turn my family room into a Disney room so I will be working on that this winter.

Ty has quite a few apts coming up in the next two weeks. Gi, urology and a few tests too. Back to the grind we go. Then school starts after that. I am not ready for them to go back. I love them being home and keeping me company

 

[J'sMum]

oh wow and tears in my eyes at what your son said. I;m so glad you guys had a wonderful trip, I have really enjoyed the TR and love your writing style, How scary at the storms , If I am to have a melt down that will be it.. on the plane LOL but seriously, Thanks so much for sharing that with us, and YAY so exciting

 

[kdzbear]

Wow! What a great end to your trip report. You son is wise beyond his years. I am so glad that your family is closer now. Thank you for allowing me to read along on your trip report. I enjoyed every moment of it.

 

[yinyanggirls]

What a great last day, except for the airport part. Yikes. Glad your flight wasn't bad. I hope you do stick around and keep us updated on your family and Ty. If the report goes too long without any posts the moderators might "close" it, but you can always post to the MAW thread. Great trip! Great report!

 

[cantwaittoseemickey]

oh wow and tears in my eyes at what your son said. I;m so glad you guys had a wonderful trip, I have really enjoyed the TR and love your writing style, How scary at the storms , If I am to have a melt down that will be it.. on the plane LOL but seriously, Thanks so much for sharing that with us, and YAY so exciting

I'm not so sure I mentioned this but Ty has a favorite motto that a kind diser put on a Tshirt for him. If you look at the bottom of my post it is in green. Last night I asked if going on all of these rides as something to do with that song/fraze. He said yep that he says it before he gets on each on

Wow! What a great end to your trip report. You son is wise beyond his years. I am so glad that your family is closer now. Thank you for allowing me to read along on your trip report. I enjoyed every moment of it.

Im not really sad but more crying because I am so proud of him. He is my hero. Here I dread things for him and goes through them like nothing. Never even sheds a tear before. I had alot of things done when I was little (I was a preemie) but not to the degree he has but I sure cryed when they poked me or even mention poking me. I have to say now I do the same thing as Ty. He can do it I can do it! I am still strong on the outside for him but the inside is where I have the most trouble and that helps me get through it.

What a great last day, except for the airport part. Yikes. Glad your flight wasn't bad. I hope you do stick around and keep us updated on your family and Ty. If the report goes too long without any posts the moderators might "close" it, but you can always post to the MAW thread. Great trip! Great report!

Thank you Melissa for the tip. I do plan to stay around as you all feel like family to me. Maybe we can make an "Wishfamily Update Thread"? that would be neat. Oh I am on FB if anyone wants me to add them. Just pm me your info

 

[rcq925]

Wow! It sounds like you truly had the trip of a lifetime! I am so happy that it brought your family closer together! I truly enjoyed reading your enitre PTR andTR. Thank you so much for sharing your family and your trip!

I hope you will stick around!

 

[cantwaittoseemickey]

Wow! It sounds like you truly had the trip of a lifetime! I am so happy that it brought your family closer together! I truly enjoyed reading your enitre PTR andTR. Thank you so much for sharing your family and your trip!

I hope you will stick around!

I definately will be here

Ty went for his afo casting today. I was really hopeful he could go into the shorter braces but unfortunately he tried him without them on and still toewalked. I kind of doubted he would anyways because if he isn't toe walking he's crouching. He keeps his body so much straighter in them but as he is getting older he is really giving me a tough time with putting them on. I was so happy to hear him say that it is was ok to give him breaks out of them while we are home because I have been anyways. Today he chose the Camoflauge pattern. At least it isnt some really "out there" color like he has been getting He has a yellow sun pattern on right now but the pair before this was called "tornado" and had red, blue and I think yellow? all swirled on them. I think Camo will match his clothes just a bit better I guess if it has to be at least he can pick "cool" colors. Of course we go pick them up a week after school starts.

He has been plastered in front of the door watching the guys work on the porch and driveway. He has his chair, pillow and blanky all set so he can sit all day and watch. His sleep has been crap. And today it is catching up with him. His body is just tanked and aching. The ped is pulling one of his meds to see if it will help.

Hope everyone has a great rest of the week!

 

[balloondoggle]

Nice TR and glad you enjoyed the whole trip. I'm dreading the inevitable meltdowns, and can only hope that when it's my turn for one I don't embarrass myself too much!

 

[cantwaittoseemickey]

I have some news! Me and dh are toying around with the possibility of a trip back to Florida in December. I am very concerned my dad and mom will not be able to travel much longer. I want them as well as my mil to see Ty's star. So I haven't really asked them yet because Ty has his urology apt this week and I will make the final decision after that apt. It will depend on what procedure the surgeon decides to do and when it will need to be done and if I can convince them to go. We would be spending a day at Kennedy Space Center then heading over to GKTW then to Disney World since his mom has always dreamed of seeing the kids in Disney. I just hope it can all be done with us driving down there and having a week to do it in. We would also like to stop at the beach for a few hours. While we are at Disney we would let my parents take our van to visit my moms aunt that she has wanted to see for a long time. I am not sure of the weather during that time but will just have to pack a little bit of this and that I suppose.

 

[yinyanggirls]

That would be so awesome! I can understand not telling the kids (or the parents) yet. Too many things could change it. I think you guys would have a blast going back and showing your parents all the special things at GKTW and enjoying WDW with them. I hope it works out!

 

[J'sMum]

OOO fingers and toes crossed that you can in fact take a return trip howwww exciting

 

[cantwaittoseemickey]

An update on our travel plans and Ty. In case you haven't seen his caringbridge page Ty will be having the bladder reconstruction surgery along with the mitroffanoff and malone, and a remplimentation to fix the reflux. It will be an 8-12hr sugery. He is doing some repeat testing between now and December then we will go in with the team and sit and talk about it all for about an hour with questions and diagrams and will decide when the right time to do it is as far as school and us being prepared. I am glad we have a little bit of time to think about things.

As for our Disney trip we were making the final plans yesterday after the apt of what days to do whatand my husband called after he got to work and said they just changed his schedule completely around. So I am not sure where this leaves us. So for now we are just seeing what happens with that. If we don't make it that's ok too because I have a ton of things I want to do around the house before Ty's surgery.

 

[wishin' on a star]

Hi Tonya! I hope you can make the plans work to get back to Disney!! We are planning to go back next April (so I guess we'll experience the crowds this time!), and the kids are just SO excited. We plan to go back and see Catherine's star as well. We've invited my parents, but I'm not sure whether they are going to come or not.

I know that the mitrofanoff and malone are huge surgeries, but I hope they will be life changing in how Ty accepts a lifetime of cathing, bowel issues, etc. We know LOTS of kids who have had both, and would never turn back, given the alternatives. We are fortunate that huge daily doses of senna laxative does the trick for Catherine, but if that didn't work for her anymore, we'd definitely be looking at the malone. Does Dr. Alam do all of this surgery? Malone also?

Anyway, I just wanted to pop in and say hi!

 

[cantwaittoseemickey]

Hi Laura We are really hoping to go but I am just not sure. I think as soon as I figure out dh's schedule they will change it around on us. We would be driving this time so it will be a long trip. Especially if we all ride together We are hoping for less crowds this time because it was just a little too crowded for us but we still had a great time.

Dr. Alam does do all of these surgeries. He will be doing Ty's all in one surgery. I really didn't expect the malone and have quite a few questions about it. I pity him when I get in there with all of my questions but I want to make sure I understand it all and know what to expect and the reasons for it. I am such an analyzer to begin with but when it comes to Ty it is 10x's worse.