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

[tinytreasures]

Opps...sorry...It's a Swifty.
http://www.adaptivemall.com/thswst.html

I love this SN stroller. Even Donkey from Shrek said it was the Cadillac of the strollers

I have looked at those. You are the first person I "know" to have one. Glad you like it

Sending health vibes your way

 

[blessedmom4]

Praying you all feel better soon...Disney and GKTW awaits!!!

 

[Mom2mitokids]

How fun, I love seeing that Kylee got to wear her Minnie backpack!!



So cute!



Love the view.

Looked like a fun day!!

I hope everyone gets healthy again before the trip Only 5 more days!!

Thank you Ellen She loves the Minnie Mouse. She has worn it twice already and she picked it for the plane.

 

[Mom2mitokids]

wow only 5 more days!!

hope everyone gets healthy and feels better!!!

thank you for the sweet words....being a part of the Big Gives brings so much happiness to us and is a wonderful healing for our hearts!

You are the sweetest. I can't wait to give back too.

I have looked at those. You are the first person I "know" to have one. Glad you like it

Sending health vibes your way

Thank you. My message board has a few kids that have it. No complaints from it.

Praying you all feel better soon...Disney and GKTW awaits!!!

That you Judy

 

[Mom2mitokids]

Today we got our last Big Give. This package went MIA but finally found it's way to our house. This was from xanphylus.

Korissa with the box

Whats in the box???

Lots of Pixie Dust!!!

Thank you Jenn for sending these cool toys and gum to Korissa. She loved everything

 

[Mom2mitokids]

Today Korissa and Kylee had their Mito appt. Kylee is now 47in. and weighs 42 lbs. Some of this weight is poop as she hasn't went for 4 days. Nothing much changed for her except increasing her Carnitine. Not much they can do about her gut.

Korissa was the long one. She got another diagnoses...Gastroparesis. We had a long talk about school and her struggles. Korissa had blood work done a couple of weeks ago and she was low on her Carnitine and CoQ10. She has been on CoQ10, so he increased that dosage. She is now going to be on Carnitine. Oh...and she needs B100. Since she too is having issue with BM she too will be on Miralax. I'm sure theirs more since we were there for 2 hours, but my mind is blank. I'm so exhausted.

I'm telling you..our suitcase is going to look like a pharmacy.

 

[blessedmom4]

I know what you mean about the rolling pharmacy I have a HUGE wheeled suitcase (because it is so heavy) to transport everything they ingest and inject... Thank Goodness for wheels!

I hope everyone is feeling better today!!!!

 

[p00h4me]

I don't know how you keep up with all the meds and vitamins that everyone is on! It might be easier to put together a pill organizer for each person and what they need to take. Maybe inside little plastic bags that are clearly marked with the person's name and date to take them?

Have you seen the movie "Old Dogs"? We just saw it last night and laughed so much! They have a couple of scenes where the two main characters talk about the different meds and vitamins they take every day plus the side effects from them. Their pill organizers gets knocked down and mixed up together by the children and later by some repair guys. They think they can put the pills back into the right containers. Well you know they didn't. As you can probably predict, they took the others pills with the side effects they were talking about! One was very hungry and had a hugh goofy grin on his face and the other had depth perception problems which is not good to have when you are playing golf!

So don't get everyone's meds and vitamins mixed up!

Another great Big Give with the pixie dust for Korissa!

Hope everyone is starting to feel better because your trip starts in 4 days!

 

[mommy2mrb]

Sending BIG HUGS and PD that everyone feels better!!!
The magic of the mouse will help ....only 4 more days!!!!

 

[petals]

Just noticed your ticker says your leaving in four days. Wanted to say hope everyone is feeling better and you all have an amazing trip.

I also missed a few of your big give updates there they got some fab things. The dresses are gorgeous. Also I noticed yee collect TY beanies.. I have loads of those as well

 

[xanphylus]

Have a great trip!!!! It's soooo close!

 

[Mom2Miracles]

I can't believe you are going SO soon, this is so exciting!!!

 

[miprender]

4 days away


Thanks for the beautiful Thank you card. DH took it out of the mailbox and was wondering who we know in CA

Sending extra pixie dust that everyone is healty for your trip.
Can't wait to read about all your adventures.

 

[my2girlsrock]

4 DAYS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I CAN'T WAIT TO MEET YOU GUYS!!!!!!!!!!!!!!!

I will have to PM my cell # so we can get in touch.....

 

[Mom2mitokids]

Have you seen the movie "Old Dogs"? We just saw it last night and laughed so much! They have a couple of scenes where the two main characters talk about the different meds and vitamins they take every day plus the side effects from them. Their pill organizers gets knocked down and mixed up together by the children and later by some repair guys. They think they can put the pills back into the right containers. Well you know they didn't. As you can probably predict, they took the others pills with the side effects they were talking about! One was very hungry and had a hugh goofy grin on his face and the other had depth perception problems which is not good to have when you are playing golf!

So don't get everyone's meds and vitamins mixed up!

Another great Big Give with the pixie dust for Korissa!

Hope everyone is starting to feel better because your trip starts in 4 days!

Thank you Gail I did see that movie and that part was so funny. Very cute movie. We have a 3 drawer organizer that I have in the kitchen. The first drawer is all of Kylee's meds. The second is all of Korissa's and the 3rd is the other 3 kids since they don't have many meds.
I'm just panicking that they won't let us bring all there meds, because most are over the counter meds.

Sending BIG HUGS and PD that everyone feels better!!!
The magic of the mouse will help ....only 4 more days!!!!

Thank you Lisa I think they are all on the mend.

Just noticed your ticker says your leaving in four days. Wanted to say hope everyone is feeling better and you all have an amazing trip.

I also missed a few of your big give updates there they got some fab things. The dresses are gorgeous. Also I noticed yee collect TY beanies.. I have loads of those as well

Thank you The excitement is in full swing here. I use to collect them, but not anymore.

Have a great trip!!!! It's soooo close!

Thank you Jenn

I can't believe you are going SO soon, this is so exciting!!!

Thank you Kristy

4 days away


Thanks for the beautiful Thank you card. DH took it out of the mailbox and was wondering who we know in CA

Sending extra pixie dust that everyone is healty for your trip.
Can't wait to read about all your adventures.

Thank you Michelle We can't wait to fill up the autogragh books.
]

 

[Mom2mitokids]

I know what you mean about the rolling pharmacy I have a HUGE wheeled suitcase (because it is so heavy) to transport everything they ingest and inject... Thank Goodness for wheels!

I hope everyone is feeling better today!!!!

Thank you Judy. We really need a rolling luggage for medical supplies.

 

[Mom2mitokids]

4 DAYS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I CAN'T WAIT TO MEET YOU GUYS!!!!!!!!!!!!!!!

I will have to PM my cell # so we can get in touch.....

I'm so exhausted and the trip hasn't even started yet. Still have tons to do before we go.

The kids are super excited Once we tough down I will be

I will PM my cell #

 

[blessedmom4]

Thank you Judy. We really need a rolling luggage for medical supplies.

It was my one big splurge before we went to Philly to Lisa's specialists, I was honestly breaking my back carrying it all around.

I can't believe your trip is so close!!!! I know this will not happen but TRY to get a little break for yourself, even if it is only 15 minutes, before you leave...then just BREATHE and drink it all in!

 

[brookerene]

Wow.... only 4 days? That is great.... I hope that the kids will be well and have an awesome trip..... !

 

[Mom2mitokids]

Wow.... only 4 days? That is great.... I hope that the kids will be well and have an awesome trip..... !

We are down to 3 days