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

[maroo]

Had my Stress Echo today. Thankfully my heart checked out ok. Pacemaker is doing it's job. Now I can enjoy WDW and know I won't keel over.

That is good!

We definitely don't want you keeling over! Disney, GKTW, and Make a Wish don't want you to, either. Too much paperwork!

 

[J'sMum]

Had my Stress Echo today. Thankfully my heart checked out ok. Pacemaker is doing it's job. Now I can enjoy WDW and know I won't keel over.

OOo so glad all checked out great and um yeah no keeling over at disney !!!! we need your TR after LOL (hope you are ok with my odd humor thats how we are in my house hehehe)

 

[that's nice]

Had my Stress Echo today. Thankfully my heart checked out ok. Pacemaker is doing it's job. Now I can enjoy WDW and know I won't keel over.

Glad everything is OK!!!!

 

[balloondoggle]

Kylee is basically 100% tube feed. She only eats a few bites of foods. Do you still have to buy a meal for a child that doesn't eat? I'm looking at doing an ADR, but hate to spend $30 when I know she will only eat 2 bites of something.

Kayla is also tube fed so we had the same questions when she was younger. I can't speak for sure about how it goes at Disney, but generally speaking, if there's a show (which is how I see the character meals) they will charge for the seat or space, not the food. To be fair, they don't care if they serve someone a meal and they only eat 2 bites. It's the number of spaces available to seat people that matters, and it's the space they charge for. That doesn't mean you can't work something out though, so definitely ask the folks in charge, but don't be surprised if this is the logic they apply.

 

[Mom2mitokids]

Kayla is also tube fed so we had the same questions when she was younger. I can't speak for sure about how it goes at Disney, but generally speaking, if there's a show (which is how I see the character meals) they will charge for the seat or space, not the food. To be fair, they don't care if they serve someone a meal and they only eat 2 bites. It's the number of spaces available to seat people that matters, and it's the space they charge for. That doesn't mean you can't work something out though, so definitely ask the folks in charge, but don't be surprised if this is the logic they apply.

That makes totally since. We took the kids to the Pirate show last month and had to pay for her. They did give $5 off her meal. She ate 3 bites of her chicken leg and was done. I just saw all that money down the drain, but she enjoyed the show, so I guess that's what matters.

 

[Mom2mitokids]

Glad everything is OK!!!!

Thank you!!

 

[Mom2mitokids]

OOo so glad all checked out great and um yeah no keeling over at disney !!!! we need your TR after LOL (hope you are ok with my odd humor thats how we are in my house hehehe)

I love odd humor so keep it up...lol

 

[Mom2mitokids]

That is good!

We definitely don't want you keeling over! Disney, GKTW, and Make a Wish don't want you to, either. Too much paperwork!

I guess all those places don't want that paper work either. I will also have one more Cardio appt before we go to check pacemaker.

 

[J'sMum]

I love odd humor so keep it up...lol

Oh good LOL you just never know hehe and I hope next appt goes just as well for you

 

[Mom2mitokids]

Posting a link to the girls caringbridge page. It's mainly Kylee's as Korissa didn't want me to do one for her, but I do update Korissa's appts too. Thankfully Korissa is pretty stable right now because not sure I can handle all this right now with what's going on with Kylee.

http://www.caringbridge.org/visit/kyleepostel

 

[J'sMum]

Posting a link to the girls caringbridge page. It's mainly Kylee's as Korissa didn't want me to do one for her, but I do update Korissa's appts too. Thankfully Korissa is pretty stable right now because not sure I can handle all this right now with what's going on with Kylee.

http://www.caringbridge.org/visit/kyleepostel

and more thinking of you and your family ty for sharing her/your site so we can have more of an understanding

 

[Mom2mitokids]

and more thinking of you and your family ty for sharing her/your site so we can have more of an understanding

Thank you

 

[cantwaittoseemickey]

Hi Kris. I read Kylee's Caringbridge page today. I wanted to tell you I so understand about the barium troubles Kylee is having. When Ty had his malrotation surgery they did an upper GI before he left. He went home for 2 days and ended up back inpatient after 7 days of being in there already for another week because the barium would go no where and he was throwing up from being so stopped up. They have enough trouble getting things to go through them then put that thick barium in there it just does them no favors Did Kylee have an apt with the ped today? How did it go I am glad to hear your echo went well and the pacemaker is doing its job You are all in my thoughts

 

[Mom2mitokids]

Hi Kris. I read Kylee's Caringbridge page today. I wanted to tell you I so understand about the barium troubles Kylee is having. When Ty had his malrotation surgery they did an upper GI before he left. He went home for 2 days and ended up back inpatient after 7 days of being in there already for another week because the barium would go no where and he was throwing up from being so stopped up. They have enough trouble getting things to go through them then put that thick barium in there it just does them no favors Did Kylee have an apt with the ped today? How did it go I am glad to hear your echo went well and the pacemaker is doing its job You are all in my thoughts

Hi Tonya,
Thank you for asking. Yes...she had her appt. They put in a stat KUB xray to see how bad she is backed up. Hopefully tomorrow she can have that done. I'm scared to give her an Enema at home and her struggle getting it out and rip herself or perforate her bowels. Not sure if that can happen, but still scared. If the stool is low than maybe I will try it, but if it's higher up than I will head to CHLA ER. Her belly is so distended. She had barium once before and she ended up in the ER, but after waiting 5 hours and they still did not call us back(it was 1am) and she finally fell asleep and I left. The next morning I took her to the Ped and they did an KUB and it did show her all backed up. They told me to give an Enema every hour until she passes it. That was the most horrible thing. She finally passed it and it was a size of a baseball and hard as one too. She was only 2 then. What finally worked for Ty? Wow...he had to be in the hospital for a week before it came out? Poor thing. Oh...she weighed in at 40 lbs. Last week she was 37 lbs. Here's a pic of her buddia belly

 

[Mom2mitokids]

I so wish we can get dates soon. I can't wait to sit down with Korissa and start planning with her.

 

[cantwaittoseemickey]

I am anxious to see what it shows. Can you email your granters and ask them if they might possibley have a date? That you all are getting excited and have some things going on medically that you would love Disney excitement to help guide you through.

 

[Mom2mitokids]

I am anxious to see what it shows. Can you email your granters and ask them if they might possibley have a date? That you all are getting excited and have some things going on medically that you would love Disney excitement to help guide you through.

I just don't want to end up in the ER tomorrow. I did text Korissa's granter on Monday and she said she hasn't heard anything. She said she would call, but she knows wish trips are a little backed up right now I told her I wanted to do an ADR and they were running 180 day advance notice.

 

[cantwaittoseemickey]

I understand It is possible to get an adr out of the 180 day loop. It is hard but sometimes it can be done. I was able to get a Garden Grille ADR at Epcot out of the 180 days and also by chance got a Chef Mickeys not long before our trip. But the Chef Mickey's I got at like 1am or so online one night. I was shocked I was able to get it. Could you go ahead and book some for your tentative week and cancel if you need to later? I cancelled our Garden Grille 2 days before.

 

[Mom2mitokids]

I understand It is possible to get an adr out of the 180 day loop. It is hard but sometimes it can be done. I was able to get a Garden Grille ADR at Epcot out of the 180 days and also by chance got a Chef Mickeys not long before our trip. But the Chef Mickey's I got at like 1am or so online one night. I was shocked I was able to get it. Could you go ahead and book some for your tentative week and cancel if you need to later? I cancelled our Garden Grille 2 days before.

I know i can, but I just told her that, so maybe things can move faster

 

[J'sMum]

ooo i hope your lil one feels better soon with blockage, My son has had the opposite effect and so has my daughter , they pass everything by far too quickly so they don;t absorb enough nutrition hence why my son has/has retardation of growth due to his illness (unsure if he still has cause in 3 months he has managed to gain an entire foot and 3 shoe sizes !) having said that he is still shorter and smaller then his average friends his age, and way smaller then the average person in our family. most men in my family is 6ft+ my great grandmother was just over 7ft etc etc and hios fathers side they were all near 6 ft however i am only 5ft 6 and his father is 5ft 10 and daughter is 5ft11... I am with you on the idea of being scared with doing enema, I had to give kate one when she was very lil and I was scared then i honestly can not imagine your fear with this, Just know we are thinking of you and your family and also crossing fingers that you have dates VERY soon so you guys can start dreaming definate disney plans !!!!!! geesh I wrote you a book today