Off to see the "Real Tree" - April 19th - April 26th! Ali's Wish Trip PTR!

[kellyw8863]

Thank you, ladies. She did wear it to daycare today with leggings and a shirt under it. We usually send her to dc in pajamas and pack her clothes, but this morning, she wanted to get dressed right away. She was afraid if I packed the dress, it would get "full of crinkles." And get this. She was actually angry that I didn't put her backpack on this morning. It seems like such a little thing, but it's huge to her.

 

[pnutallergymom]

Wow!!! The Big Give starts already!!! Love the dress!! We have become pros at just slitting the seam a little to make a hole big enough for the tube to fit in!!

She looks great!!! Her smile is infectious!!

Did I read you right, when you said you only use the tube for Pedialyte?? How awsome is that?? That sure makes things alot easier, for sure. We normally use the pedialyte over plain water too, Brigge's lytes get waaaaay out of whack...but I just meant it was one less thing to pack and if you ran out it's not like the plane wouldn't have any water. Like you said, its a comfort thing. I'm sure you'll get back and say "why in the heck did I pack all that stuff??"

 

[kellyw8863]

Wow!!! The Big Give starts already!!! Love the dress!! We have become pros at just slitting the seam a little to make a hole big enough for the tube to fit in!!

She looks great!!! Her smile is infectious!!

Did I read you right, when you said you only use the tube for Pedialyte?? How awsome is that?? That sure makes things alot easier, for sure. We normally use the pedialyte over plain water too, Brigge's lytes get waaaaay out of whack...but I just meant it was one less thing to pack and if you ran out it's not like the plane wouldn't have any water. Like you said, its a comfort thing. I'm sure you'll get back and say "why in the heck did I pack all that stuff??"

We've done that and it ultimately always ends up ripping more. If I was at all crafty, I could put a couple of stitches in, but I wouldn't be exagerrating if I said I couldn't even sew on a button.

We do mostly use her tube for Pedialyte. The reason we had it placed is because she can't protect her airway when she drinks. She was having between 3 - 5 aspiration pneumonias a year and has lung damage as a result. We have the antibiotic issue, and when she gets sick, her colon completely stops working, so we really needed to be aggressive about stopping the aspiration.

And we do thicken her liquids, but then she only takes about 10 ounces by mouth. She needs between 40 - 50 to stay adequately hydrated. We give her formula if she skips meals and when she sick because then her swallowing deteriorates to the point where she also chokes on solids.

She has heartrate issues, and one theory was fluid balance so she doesn't take any water at all. She takes Gatorade by mouth and Pedialyte by tube. I wasn't planning on bringing her entire supply in our carry-on, just a single bottle. The rest I'll have shipped to GKTW, or we'll pick it up at WalMart when we get there.

That's probably way more information than any of you wanted to know.

 

[yinyanggirls]

All of that reminds me of Phoebe. Texture issues, hydration issues, growth issues. Thankfully, no antibiotic problems. Her last school refused to let her eat in the cafeteria because it was loud and distracting and she "might" choke. They were so clueless and yet so arrogant. That's why we moved.

 

[xanphylus]

All of that reminds me of Phoebe. Texture issues, hydration issues, growth issues. Thankfully, no antibiotic problems. Her last school refused to let her eat in the cafeteria because it was loud and distracting and she "might" choke. They were so clueless and yet so arrogant. That's why we moved.

That's ridiculous!! I can't believe they would want to separate any child from their peers because they "distracted" the others while eating of all things!! Ugh.. that irritates me and I am very glad you moved. You shouldn't have to deal with that kind of stuff, no one should. I would think they should focus more on the kids who routinely stop the rest of the class being annoying and rude during actual class time and hinder everyone's learning!!

sorry for the rant.....

 

[kellyw8863]

All of that reminds me of Phoebe. Texture issues, hydration issues, growth issues. Thankfully, no antibiotic problems. Her last school refused to let her eat in the cafeteria because it was loud and distracting and she "might" choke. They were so clueless and yet so arrogant. That's why we moved.

Are you for real?! You don't have to answer that - I teach regular ed and my husband teaches spec ed, so I know you're for real, but it never makes me less sad to read of instances like this. I'm so hopeful to run into each other at GKTW - I'd love to meet you and your girls.

 

[kellyw8863]

Okay, we've changed our itinerary. Again.

Monday, April 19th
Flight arrives at 3:10pm
WalMart, check-in, explore, orientation

Tuesday, April 20th
MK all day
1900 Park Fare for dinner
Spectromagic and Wishes

Wednesday, April 21st
SW at our leisure (kids will be tired)
Maybe DTD in the evening if we're up for it

Thursday, April 22nd
'Ohana's for breakfast
EP in the morning
DHS in the afternoon
GKTW for dinner and Christmas Party

Friday, April 23rd
AK all day
RFC for dinner
GKTW for Pirates and Princesses Party

Saturday, April 24th
Return to MK, EP, or DHS
'Ohana's for dinner
Fantasmic OR Mayor Clayton's Birthday Party
Can also spend the day at GKTW if that's what kids want

Sunday, April 25th
Leave GKTW for AKL
Dinner at Boma

Monday, April 26th
Hang out at AKL
5:00 departure for home

We have some unexpected money coming in, so we're thinking of adding a fourth Disney day instead of doing US/IOA. Or, using that day to hang at GKTW. Thoughts?

 

[pipersmom]

I think I would be tempted to add a 4th disney day, Kelly..that way you could either re-visit a park the kids really enjoyed, or not split 2 pks into one day. The other option..spending a day at GKTW..actually scratch what I said about automatically adding the 4th Disney day..LOL!..I would play it by ear on the extra day..the kids may want a whole day at GKTW. Piper brought up wanting to spend a whole day there last night..I'm thinking US/IOA may get dropped..just depends on what she decides while we're there. If she does opt to skip US, we'll probably go do DTD in the am, then spend the rest of the day at GKTW. Then we wouldn't have to do DTD the morning we're leaving.

 

[Wee Annie]

Kelly,

I know you're equivocating between Fantasmic and the birthday party on the evening on Sat, 4/24. One thing you might want to factor into the equation is that I believe (and someone PLEASE correct me if I'm wrong) that Sat. 4/24 may be a Grad night at the MK. IF that is true, it would shift a lot more people toward Fantasmic (because there would be no MK option that night for them), and make Fantasmic more crowded.

Just a thought.

Btw, I think we may be doing DHS on that Thursday too (I say I think, because I have yet to dig up the initial itinerary I jotted down a while back. Must do so in the next week and start checking ADRs).

 

[kellyw8863]

I think I would be tempted to add a 4th disney day, Kelly..that way you could either re-visit a park the kids really enjoyed, or not split 2 pks into one day. The other option..spending a day at GKTW..actually scratch what I said about automatically adding the 4th Disney day..LOL!..I would play it by ear on the extra day..the kids may want a whole day at GKTW. Piper brought up wanting to spend a whole day there last night..I'm thinking US/IOA may get dropped..just depends on what she decides while we're there. If she does opt to skip US, we'll probably go do DTD in the am, then spend the rest of the day at GKTW. Then we wouldn't have to do DTD the morning we're leaving.

Thanks, Amanda. I think we will play it by ear. Apparently we can't just add on a fourth day, so maybe we will spend the day just hanging at GKTW. I think we'll just name that a "wait and see" day.

Kelly,

I know you're equivocating between Fantasmic and the birthday party on the evening on Sat, 4/24. One thing you might want to factor into the equation is that I believe (and someone PLEASE correct me if I'm wrong) that Sat. 4/24 may be a Grad night at the MK. IF that is true, it would shift a lot more people toward Fantasmic (because there would be no MK option that night for them), and make Fantasmic more crowded.

Just a thought.

Btw, I think we may be doing DHS on that Thursday too (I say I think, because I have yet to dig up the initial itinerary I jotted down a while back. Must do so in the next week and start checking ADRs).

I think we're going to go with the birthday party. I had checked the crowd calendars at TGM and EP wasn't as bad as one would think, but I'm not sure we'll want to deal with it for fireworks that aren't geared towards the younger set. Do share your itinerary when you get the chance!

 

[kellyw8863]

Well, I finally ventured out through the snow and to the mailbox today, and there was a package from Xanphylus.

The girls were SO excited!

Checking out their loot...

Sticker and activity books for both girls...

My little artist got right to work on hers.

Ali loves purses/bags of all kinds!

So happy!

Thank you so much, Jenn!

 

[pnutallergymom]

All of that reminds me of Phoebe. Texture issues, hydration issues, growth issues. Thankfully, no antibiotic problems. Her last school refused to let her eat in the cafeteria because it was loud and distracting and she "might" choke. They were so clueless and yet so arrogant. That's why we moved.

I hate to laugh at this...but it sounds all to familiar too!! Brigge has a laryngeal cleft (Ali does too, right Kelly??) that we tried to have repaired. Yes, tried. She had a laryngospasm on the table and they cancelled the case..now nobody will go near her. Add to that the Fundo, and she gags quite a bit. So no eating for her at school because everyone is so afraid. They used to let her when we had nursing, but I fired all the nurses!! So, no more risky behavior at school. Aren't they great??

Kelly,

Brigitte and Ali have waaaaay to much in common!! I could write some of your stuff!! Way to many similarities!!

As far as US/IOA...if it weren't for the older kids, we wouldn't be doing it either. Although, Brigitte is a big Curious George fan. If the girls aren't into alot of the characters, than I don't feel like you will be missing much. IOA, has alot of big rides and coasters...but the boys are really into Spiderman and the superheroes. So, like I said its for them...not Brigge.

We haven't done Fantasmic, EVER. I have heard more and more negatives about it. I guess its one of those love it or hate it things. I have heard that alot of people forget to mention that it can be quite scary for the younger ones. I guess its really dark.

Did you guys ever do your GAD/GAD volunteer day?? When we went to Disney last year, we spent the $$$ for just a one day MK pass...ouch!! It is expensive, but I will say, we definitely didn't regret it. Here is my other thought. Do you guys have any intention on going back again? If you had the extra money, I think it would almost be worth it to buy a longer pass with the no expiration option. It would be expensive up front, but worth it if you had the funds to do it. Buying the one day pass is definitely a killer.

 

[xanphylus]

Well, I finally ventured out through the snow and to the mailbox today, and there was a package from Xanphylus.

So happy!

Thank you so much, Jenn!

Glad the girls liked it! It isn't much, but I've found its the little things girls like. I almost got my daughter one of the purses too, until I remember the 5 million she has at home already. That got put back on the shelf! Hope they have many, many more presents that they love from all the Big Givers!!!

 

[Momofwishkid]

I love the little purses and goodies and the girls look so adorable!!

 

[yinyanggirls]

Cute purses and games. Tessa loves the little stuff too. Do the girls understand what it's all for or do they just enjoy being spoiled?

 

[pipersmom]

Very cute!! Jenn is so awesome! So neat that the Big Give stuff has started coming in!!

 

[kellyw8863]

I hate to laugh at this...but it sounds all to familiar too!! Brigge has a laryngeal cleft (Ali does too, right Kelly??) that we tried to have repaired. Yes, tried. She had a laryngospasm on the table and they cancelled the case..now nobody will go near her. Add to that the Fundo, and she gags quite a bit. So no eating for her at school because everyone is so afraid. They used to let her when we had nursing, but I fired all the nurses!! So, no more risky behavior at school. Aren't they great??

Kelly,

Brigitte and Ali have waaaaay to much in common!! I could write some of your stuff!! Way to many similarities!!

As far as US/IOA...if it weren't for the older kids, we wouldn't be doing it either. Although, Brigitte is a big Curious George fan. If the girls aren't into alot of the characters, than I don't feel like you will be missing much. IOA, has alot of big rides and coasters...but the boys are really into Spiderman and the superheroes. So, like I said its for them...not Brigge.

We haven't done Fantasmic, EVER. I have heard more and more negatives about it. I guess its one of those love it or hate it things. I have heard that alot of people forget to mention that it can be quite scary for the younger ones. I guess its really dark.

Did you guys ever do your GAD/GAD volunteer day?? When we went to Disney last year, we spent the $$$ for just a one day MK pass...ouch!! It is expensive, but I will say, we definitely didn't regret it. Here is my other thought. Do you guys have any intention on going back again? If you had the extra money, I think it would almost be worth it to buy a longer pass with the no expiration option. It would be expensive up front, but worth it if you had the funds to do it. Buying the one day pass is definitely a killer.

Ali had hers repaired in 2008, but not at Children's. The doc there who does clefts is a joke. Before we had Ali's repaired, I spoke with a nurse who regularly worked in the OR with him and she said she "might let him put tubes in her kid's ears," but that was it. We ended up taking her to MEEI/MGH to the head of the aerodigestive program, who had completed his fellowship with Dr. Cotton in Cincinnati. He was EXCELLENT! He was also the one who said that there was no possible way that her cleft could account for the degree of aspiration she was experiencing, and pointed us in the direction of mitochondrial disease or some other neurodegenerative process. Unfortunately, he was right.

Thanks for the feedback regarding US/IOA and Fantasmic. I think we are going to forgo both. We'll keep US/IOA in the back of our minds in the event that we are looking for something to do, but we're not keeping it a priority. We didn't end up doing GAD/GAD. We had planned on doing it with Gabe, but then he left and things got crazy.

I'm glad that you are home and that Brigge is doing well! I hope that you guys are able to work out the feeds.

Glad the girls liked it! It isn't much, but I've found its the little things girls like. I almost got my daughter one of the purses too, until I remember the 5 million she has at home already. That got put back on the shelf! Hope they have many, many more presents that they love from all the Big Givers!!!

The girls LOVE things like that. I swear, every Christmas, they're more enthralled with the contents of their stockings than with the gifts under the tree. Thanks again for the thoughtfulness you put into it.

I love the little purses and goodies and the girls look so adorable!!

Thank you! The girls love purses. Whenever we can't find something (like the tv remote), invariably it is in one of the girls' purses somewhere.

Cute purses and games. Tessa loves the little stuff too. Do the girls understand what it's all for or do they just enjoy being spoiled?

I don't think they totally get it, though Maya did reprimand Ali this morning that she had to save her puzzle book for the plane. We have explained to her that there are some people out there like fairy godmothers who want to make sure that we all have an extra-special Disney trip, and Maya did ask me if I'm keeping a list so she can make thank you cards, but I don't think they're able to see the big picture, if that makes sense.

Very cute!! Jenn is so awesome! So neat that the Big Give stuff has started coming in!!

It's fun, and I love seeing the girls' faces light up when I come back from the mailbox. The generosity and thoughtfulness of the Big Givers is amazing.

 

[jenb1023]

Love the test dress and that smile and the arrival of the first official big give package!

The itinerary looks good. We actually enjoy Fantasmic including our DD who saw it at age 4 and 5 but it is a little intense/scary. That is a lot of traveling on Thursday - maybe do Epcot or DHS Thurs and do the other one Saturday? You could still do GAD/GAD if you want to and have time - they turn the passes around quickly.

Have fun planning, counting down the days and enjoying th Big Give!

 

[pacrosby]

Love the px...................the girls look so happy Your 'newest' itinerary looks good.....................not alot of running around. I wasn't even aware that you were staying an extra night at AKL. I seem to be completely out of the loop these days

Looking forward to more Big Give px!

 

[kellyw8863]

Love the test dress and that smile and the arrival of the first official big give package!

The itinerary looks good. We actually enjoy Fantasmic including our DD who saw it at age 4 and 5 but it is a little intense/scary. That is a lot of traveling on Thursday - maybe do Epcot or DHS Thurs and do the other one Saturday? You could still do GAD/GAD if you want to and have time - they turn the passes around quickly.

Have fun planning, counting down the days and enjoying th Big Give!

Thanks! I took your advice and signed me, my husband, and Maya up for a GAD/GAD on Saturday. We're going to make Build-A-Bears for children who are taken into DSS custody. It should be fun, and for a cause that's near and dear to our hearts.

Love the px...................the girls look so happy Your 'newest' itinerary looks good.....................not alot of running around. I wasn't even aware that you were staying an extra night at AKL. I seem to be completely out of the loop these days

Looking forward to more Big Give px!

Thank you! They are such happy kids.

Ali had a mito appointment on Tuesday afternoon, and I've been in a real funk ever since. I find that when I update her CaringBridge site, I'm very factual: this is what happened, and this is what it means. I just find it so difficult to put all the other "stuff" into words. And most of the time, I do a pretty good job pushing that "stuff" into the background - a healthy dose of denial. It's what allows me to get up in the morning, bring the girls to daycare, and go to a job that I love. It's why I can laugh, sing along with the radio, and find the joy in the little things.

But then there are days like Tuesday when the "stuff" rushes to the forefront and it's all I can see. Instead of seeing a little girl who is doing great, loves to dance, and has the quirkiest sense of humor, I see one who most likely will be robbed of her adolescence, who won't live to fulfill her "when I grow up" dreams. And I get angry that all we have to fight this disease is a couple of bottles of enzymes and cofactors that the best of the best aren't even sure work. I mean, how can we as a society accept that there is this disease that is killing our children at the same rate as all childhood cancers combined, and yet we are doing nothing about it? Why is that okay? And then I get sad because none of this seems fair. But ultimately the fog lifts, the laughter creeps back in, the joy returns, and I see again just how lucky I am.

So that's where I've been. Hating the meds. Hating the g-tube. Hating the leg braces. Hating that I have to carry her from dinner time on because she can no longer walk on her own. Hating that Maya doesn't understand any of this and instead sees Ali as the favored child. But, it'll be all good. Until the next appointment, at least.

Now that I've gotten that out, onto more fun topics. Six weeks left, and we're all getting excited. Dr. K., her mito doc, spoke at length on Tuesday regarding how to keep her healthy while we are there. Before we leave, we'll have an emergency plan in hand as well as the name and contact information for the mito specialist at the children's hospital down there. So, we're hopeful that everything will go smoothly. And if there's a glitch, at least we'll have the information we need to deal with it.

I should probably go to bed. I was up last night from about 1 - 3am.