Korissa's Magical MAW/GKTW PTR....4 HUGE Big Give (2-18-11)..page 40

[Mom2mitokids]

Wow! You are a strong mama and your kids are fighters! Can't wait to read the rest of your PTR!

Thank you Kim for coming by.

 

[Mom2mitokids]

Have some great news to share.. MAW and Cold Stone are doing there 9th annual fundraiser on Sept. 30th. A wish child named Kate made a creation that they are promoting at all Cold Stones. Go in and you will get a free sample of Kates creation. All they ask is a donation which goes to MAW. Anyways...Korissa and Kylee are going to represent our local Cold Stone( this is our 3rd year doing it) and we were just asked if Korissa and Kylee can come up with their own creation and they will sell it half off and all proceeds will go to MAW. Wednesday we will be going there and they are going to make some creation up. The wish granter will be there taking pictures. Korissa is so excited.

 

[Mom2mitokids]

Today we went to a Starlight event. It was called End of Summer Bash. Papa Doo Run Run performed with John Stamos. Lots of food, dancing, and crafts.

"The Mighty Mito Girls"..Kylee's buddy who also has Mito

Papa Doo Run Run band, John Stamos, Ashlee Keating(singer), and I forgot the boys name. He was just in Adam Sanders new movie.

 

[cantwaittoseemickey]

Congratulations on getting to make a new creation for Cold Stone. Wow you guys do lots of neat things! Love the pics at the Starlight Foundation dance. John Stamos WOWWWWEEEEE Looks like everyone had a great time! Kylee and her mito friend were so pretty with thier scarves and glasses

 

[rcq925]

How cool to get to make their own Coldstone creation!!!

And so much fun at the Star Light event! And you got to meet John Stamos!! Hayley is going her vest and nebulizer treatments right now and watching Full House reruns! We love John Stamos!!! So glad that you guys get to participate in these events!!

Thanks for sharing the pics!

 

[that's nice]

Great pics from the dance... John Stamos????!!!!!!

I had to come by here because I wasn't getting any updates.... I have had a few of my subbed threads not show up recently.... I wonder what I am doing to myself?

 

[J'sMum]

is that the guy from the show that had danny taylor in it? I can;t think of show name off top of my head even though my kids have only seen every last show ? LOL and how cool is it that you guys have had opportunity to meet so many famous ones toooo cool

 

[Mom2mitokids]

is that the guy from the show that had danny taylor in it? I can;t think of show name off top of my head even though my kids have only seen every last show ? LOL and how cool is it that you guys have had opportunity to meet so many famous ones toooo cool

Jessie from Full House. It was funny because my kids and my friends kids commented how old he looked. They only seen him on the show. I told them we all get old. lol...He's still a hottie in my eyes.
You need to move to So Cal...that's where all the star are at

 

[J'sMum]

Jessie from Full House. It was funny because my kids and my friends kids commented how old he looked. They only seen him on the show. I told them we all get old. lol...He's still a hottie in my eyes.
You need to move to So Cal...that's where all the star are at

LOL I would love to move there , has to be warmer then Maine is ! and oh that guy will be gorgeous even when he's 80, eyes like that LOL

 

[Mom2mitokids]

Finally have the energy to post some pictures of last Wed. ice cream creation that Korissa and Kylee did. They picked... Vanilla ice cream, peanut butter cups, fudge, and bananas. looked really good.

Picking their ice cream flavors

Korissa watching

Erin..our Wish Granter. She just went to Hawaii and brought goodies to the kids.

Kylee's necklace that has sand from Hawaii

Steven with his sand. That is all he wanted from Hawaii

Erin and Kylee

The beautiful bracelet Erin bought for Korissa

Sorry for the pic overload...lol
Thanks for taking a peek

 

[J'sMum]

Great Pictures ! thanks for sharing looks like they had a great time

 

[fulseasmama]

Great pictures of your kids and what a great fundraiser for them to be such a big part of. I think the flavor they came up with sounds yuuummm!

 

[Mom2mitokids]

I was wondering...if you take a red eye(is that what it's call when you fly all night) and you get in Orlando at 10:30am, Does your vacation start that day or when you fly out. Example..fly out on March 20th at 11pm have a 1 1/2 hour layover in Atlanta at 6am and the land in Orlando at 10am something. Would you do something like this? All the fights I have looked at say if we leave on the 20th..we won't get in until 7:30pm.I demanded a direct flight. Not sure I would get back on airplane...lol but may do a layover if our trip starts on the 21st.

 

[yinyanggirls]

We flew through Chicago and with the layover our travels took all day. We left before sunrise and got to GKTW after dark. We barely made it in time for dinner. I was sad that it worked out that way. If you have a chapter that communicates well with you, I'd ask about the possibility of non stop, or the shortest closest layover possible.

Love the ice cream pics! What a sweet wish granter!

 

[Mom2mitokids]

We flew through Chicago and with the layover our travels took all day. We left before sunrise and got to GKTW after dark. We barely made it in time for dinner. I was sad that it worked out that way. If you have a chapter that communicates well with you, I'd ask about the possibility of non stop, or the shortest closest layover possible.

Love the ice cream pics! What a sweet wish granter!

This is why I'm thinking flying over night. We will get in at 10am and have all day at GKTW. If we flew in on Sunday morning we wouldn't get in till 6-7:30pm. I looked up just about all airlines. So would the trip be actually be March 21st instead on the 20th? Does this all make since?

 

[that's nice]

Great pics!!!!! If it wasn't 12:30am here I'd be digging into some ice cream!

I think if your family can handle it, the red eye flight is better. You will be wasting a full day traveling if you took a morning flight.

 

[Mom2mitokids]

Thursday was the Cold Stone-MAW Ice Cream Social that we participated in. Here's some pictures..

Kylee giving sticker to all the kids

Kylee and her teachers aides

Thank you for taking a peek

 

[Mom2mitokids]

Yesterday was MAW Bark in Park fundraiser at our local park. I'm not sure if anyone knows, but MAW has a dog Ambassador and his name is Doc Barker. He following the Original Barker who passed away in April due to cancer. They go to all these dog events to raise money for MAW. These are for wishes to be a guide dog trainers and other dog related wishes. Doc also goes to locals Children's hospital to visit sick kids. This is our 2nd time doing this. The kids love it. Today...my sinuses are not liking it. Breathing all those dog hairs yesterday.

Korissa and Kylee got to participate in the Splash pool. This is where they get to through a toy in the pool and see how far the dogs jump. Korissa had Breezy and Kylee has Nestle

Doc Barker holding the money basket

The gift bag we raffeled off

Kids with Sherry(Doc Barkers mommy), and Linda Blair(our tent was right by hers).

 

[Mom2mitokids]

Thursday Korissa and Kylee both had their Geneticist(Mito) appt.

Korissa- We discussed her weight. He wants her to eat 6 small meals a day. He upped her Prilosec and CoQ10. He is also wanting her to start Creantine for her muscle pains. She has moderate hypotonia. He wants her to have a complete blood workup including checking her Thyroid. We talked about her struggling in school. We talked about her low heart rate and what to watch for. He also talked to her about the need to exercises for her Mitochondrias. They need exercises to keep the healthy mitocondrias stay healthy. We just bought a treadmill..so she will walk 30 min. everyday.

Kylee... He gave her another diagnoses Pseudo- Obstruction. He said even though her Manometry test came back normal...he said Mito kids don't follow those rules. With Mito you can have good days and bad days. She had a good day when the test was done, but with her 2 recent hospital stay for cleanouts and for the fact she can't poop without tons of meds..he said he was putting Pseudo- Obstruction in her charts. She weighed in at 38lbs 45in. The Dr. gave us a recipe for homemade D10 to give to her when she is dragging or sick. Hopefully keeping her out of the hospital.

It was a long appt. Total was 2 1/2 hours. A lot was discussed. Overall it was a great appt. Last appt I felt rushed and didn't get much out of him.

Oh...we also talked about Kyras leg pains and her wants her to start CoQ10 and Creantine.

 

[kctwinmommy]

Man! You guys get to do some fun stuff with your chapters out there!! Great pics!!