Lily's Wish Tripping (and Mama's PTR!) WDW/GKTW 2/6/11-2/12/11 UPDATED with new pics

[hollie1974]

Oh and a couple things I forgot to add as my brain is not working like it should be at this point in time.

So Lily got up this morning and the first thing she asked me was "Can we go to Disney World now?" Man, the wait is going to be hard on ALL of us!

I have been going back and forth one whether I wanted to give her bday time as one of the dates. 1st off because it is not that far away and I don't know if they can make it happen that quick and second because she has a Neuro appointment the day before her b-day and I wasn't sure how far out a new appointment would be if I called to reschedule as this Dr we are going to see is one of the more popular Neuros (with good reason! He is awesome and an all around nice guy!). So today my phone rings and it's the Neuro office. They need to reschedule Lily's appointment to the 26th. Whoa! Is that like a sign or what? lol

-H

 

[hollie1974]

Opps so did not mean to make the font that ginormous! Hopefully I'll get the hang of the board soon!

 

[jj0plin]

Your kids are adorable! Hopefully you'll be able to take Drache too! Can't wait to read more

 

[hollie1974]

Ok so I hope it's ok if I get on here and ramble for a bit. I am going to go a little deeper into Lily's story and I think you will understand why I am rambling....

So all of Lily's seizures have been at night.....late when we should be asleep. I don't sleep well anymore. The lucky part (if you can call any of this lucky ) is that all of her seizures thusfar (and that is yet another downside of seizures, they can change at anytime with no warning) have been within 1 and 1/2 hours of her falling asleep. So every night I keep "seizure watch" as I call it for 2 hours after she goes to sleep.

Also Lily's seizures aren't what people typically think of when they think of seizures. Her seizures are very quite with very little movement. But they are so dangerous because almost all of them have not stopped without medical intervention.

So I am on here tonight rambling on because she has only been asleep for about 30 minutes and is moving around A LOT in her sleep. This is not normal for her. Normally she falls asleep and doesn't move for close to two hours. So I am sure you can understand why I am a bit anxious tonight. So I am here rambling to try and distract myself. If I don't I will drive myself crazy just sitting here staring at her.

We are currently in the process of getting her a seizure alert/assistance dog. I CANNOT wait until we get it! It will be a huge relief to have another pair of eyes watching her.

She was sleeping at an awkward angle so I put another pillow behind her so her neck is bent odd and she hasn't moved again since I did that...so hopefully we are good! This is normally the time I would hit my phone to call up some of my buds to get my mind off worrying (if that is ever possible for a mom) but Lily went to sleep later than usual and I don't want to wake anyone up.

Ok going to try and read some trip reports and chill.

 

[Mom2mitokids]

Ok so I hope it's ok if I get on here and ramble for a bit. I am going to go a little deeper into Lily's story and I think you will understand why I am rambling....

So all of Lily's seizures have been at night.....late when we should be asleep. I don't sleep well anymore. The lucky part (if you can call any of this lucky ) is that all of her seizures thusfar (and that is yet another downside of seizures, they can change at anytime with no warning) have been within 1 and 1/2 hours of her falling asleep. So every night I keep "seizure watch" as I call it for 2 hours after she goes to sleep.

Also Lily's seizures aren't what people typically think of when they think of seizures. Her seizures are very quite with very little movement. But they are so dangerous because almost all of them have not stopped without medical intervention.

So I am on here tonight rambling on because she has only been asleep for about 30 minutes and is moving around A LOT in her sleep. This is not normal for her. Normally she falls asleep and doesn't move for close to two hours. So I am sure you can understand why I am a bit anxious tonight. So I am here rambling to try and distract myself. If I don't I will drive myself crazy just sitting here staring at her.

We are currently in the process of getting her a seizure alert/assistance dog. I CANNOT wait until we get it! It will be a huge relief to have another pair of eyes watching her.

She was sleeping at an awkward angle so I put another pillow behind her so her neck is bent odd and she hasn't moved again since I did that...so hopefully we are good! This is normally the time I would hit my phone to call up some of my buds to get my mind off worrying (if that is ever possible for a mom) but Lily went to sleep later than usual and I don't want to wake anyone up.

Ok going to try and read some trip reports and chill.

((HUGS)) That must be rough. We were told that Kylee's past seizures can show its ugly butt anytime. Hoping and praying we will never see another one.
Did you already give MAW the dates you want? Do you have a second date? We started this process in early July and our first dates was Nov. 14th, but they said it was too soon. I'm actually happy it did not work out. Our chapters fiscal year ends August 31st, so that's why we couldn't have the first dates. I think March will have better weather condition(at least I hope so..lol).

 

[hollie1974]

((HUGS)) That must be rough. We were told that Kylee's past seizures can show its ugly butt anytime. Hoping and praying we will never see another one.
Did you already give MAW the dates you want? Do you have a second date? We started this process in early July and our first dates was Nov. 14th, but they said it was too soon. I'm actually happy it did not work out. Our chapters fiscal year ends August 31st, so that's why we couldn't have the first dates. I think March will have better weather condition(at least I hope so..lol).

It is and I didn't improve my night by drinking a Diet Coke late this evening. Caffeine puts me on edge and sometimes makes me super paranoid, like it did tonight. 28 minutes left and we should be in the clear!

I hope Kylee's (I love that name btw!) stay gone!

Lily hasn't even actually made her wish yet. I jumped the gun a bit with this thread but i have no doubt that is what she will wish for since this morning the first thing that she asked me was "Can we go to Disney World now?" lol If we can't get our first date than I am hoping for Feb. I think the crowds should be low and the temps should be good. It looks like it is pretty cool down there right now. I am obsessing and checked the weather there the other day!

 

[hollie1974]

Yeah so first off everything went fine last night of course. In the light of day I always feel so silly for getting so paranoid...but I can't help it. I think my over paranoia is why I was picked as Lily's mom. If I were not as paranoid as I am, it would have taken me a great deal longer to check on her the night she had her first seizure. She had had a cold and I heard her snorting through the baby monitor. It just sounded lie she had rolled over on her back and was having a hard time breathing clearly in her sleep, you know how they do when they have colds. I just thought she need turned on her side so she could breath. Yeah, just imagine my surprise (and horror for that matter!) when I found that was not the case!
Anyway.......

So I have decided the Dr's office changing her appointment day was a sign.......a sign to make our 1st travel date pick in Feb. She has a few appointments scheduled in Jan (Neuro and Geneticist) so I will feel a lot more comfortable after having her see her dr's. Then we are good to go!! Yay!

Can't want for the volunteers tomorrow! We have a little surprise cooked up for them.

CJ, Lily and I made some Christmas ornaments this year. Lily is giving them out to those people that she feels are special. She is going to give our volunteers an ornament each. I am pretty tickled that we will have a gift for both of them.

And can I just tell you that I just LOVE this guy lol

 

[Mom2mitokids]

Yeah so first off everything went fine last night of course. In the light of day I always feel so silly for getting so paranoid...but I can't help it. I think my over paranoia is why I was picked as Lily's mom. If I were not as paranoid as I am, it would have taken me a great deal longer to check on her the night she had her first seizure. She had had a cold and I heard her snorting through the baby monitor. It just sounded lie she had rolled over on her back and was having a hard time breathing clearly in her sleep, you know how they do when they have colds. I just thought she need turned on her side so she could breath. Yeah, just imagine my surprise (and horror for that matter!) when I found that was not the case!
Anyway.......

So I have decided the Dr's office changing her appointment day was a sign.......a sign to make our 1st travel date pick in Feb. She has a few appointments scheduled in Jan (Neuro and Geneticist) so I will feel a lot more comfortable after having her see her dr's. Then we are good to go!! Yay!

Can't want for the volunteers tomorrow! We have a little surprise cooked up for them.

CJ, Lily and I made some Christmas ornaments this year. Lily is giving them out to those people that she feels are special. She is going to give our volunteers an ornament each. I am pretty tickled that we will have a gift for both of them.

And can I just tell you that I just LOVE this guy lol

Good luck tomorrow. I can't wait to hear all about it. How nice to make Christmas ornaments for the volunteers. They are going to love to get something from Lily and CJ.

 

[kailatilear]

I cannot wait to hear about the visit with the MAW volunteers and how everything goes. They will love the Christmas ornaments

I too believe that us as mothers were picked to have the children we have for a specific purpose. I believe I was picked to be Abby's mom because of my persistance and paranoia. I know when she has broke something even though people say, oh it is probably just bruised or sprained. I know when she breaks something, because I get physically sick to my stomach

Anyway, I can't wait to hear how today goes. Good luck and enjoy your visit.

 

[hollie1974]

So the volunteers just left. They were awesome! They brought gits for me, Lily and CJ. I got a really super huge and great smelling candle. Lily got a Disney princess toy Cd player with toy cd's. And Cj got the game Jenga (which he was tickled to death with!).

Tons of paperwork to fill out! Got that done and chatted with the volunteers. Since Lily and CJ's older brother Jesse (he doesn't live with us) will not be going and because we are driving they think that our local MAW will have no problem with Drache going! Yay!

Also because we are driving they think we will hear back from MAW pretty quick.

Can't WAIT to get our dates!

Yay! Yay! Yay!

 

[Redwavess]

Great to hear that your visit with the MAW volunteers went so well!! That was awesome that you had a gift for them (I wish I would have thought of that ;-)! What dates did you give them? How did the actual wish go? Did they ask her lots of questions like they did Mallory?

So happy for you that things went so well and it sounds like Drache will be able to come along!! YEAH!!

We have lots in common. I was born in Ohio. We both have an older son and a younger daughter. I too am going to get my Phd. Even the seizures I can relate to as my twin sister has a seizure disorder. Then there is the yucky uncertainty about what the future will hold for our little girls. I can relate. And we share the hyper vigilance when it comes to our daughters. I hadn't thought about it before, but I think you are right I am just the right mom for Mallory. With all of this in common I think we were meant to be wish buddies!!

I can't wait to hear when you get your dates. Did they say how long it would be?

Chat with you soon,

Madeline

 

[hollie1974]

Great to hear that your visit with the MAW volunteers went so well!! That was awesome that you had a gift for them (I wish I would have thought of that ;-)! What dates did you give them? How did the actual wish go? Did they ask her lots of questions like they did Mallory?

So happy for you that things went so well and it sounds like Drache will be able to come along!! YEAH!!

We have lots in common. I was born in Ohio. We both have an older son and a younger daughter. I too am going to get my Phd. Even the seizures I can relate to as my twin sister has a seizure disorder. Then there is the yucky uncertainty about what the future will hold for our little girls. I can relate. And we share the hyper vigilance when it comes to our daughters. I hadn't thought about it before, but I think you are right I am just the right mom for Mallory. With all of this in common I think we were meant to be wish buddies!!

I can't wait to hear when you get your dates. Did they say how long it would be?

Chat with you soon,

Madeline

No they really didn't. See Lily has her own agenda and NOTHING will distract her from it ever lol. So when they gave her some paper and asked her to draw her wish, she handed them back the paper and ran over to her play dough set. We were all kind of befuddled at first. Then I remembered something from the night before.

She and I had been playing with the play dough set when she came across a 3 leaf clover play dough cutter shape. She grabbed it up and started making three leaf clovers everywhere! I couldn't understand why she was all about the 3 leaf clovers until she told me they were not clover, but mickey mouse! lol and they do look just like a mickey silhouette.

So anyway she got out her play dough, cut a couple 3 leaf clovers/mickey mouses (mice? lol) and walked over to the volunteers. She put one in each of their laps and said "this is what I want!". Then she proceeded to dance around the room and say "and I want princesses and I want to ride the tea cups and dumbo and I want to see Minnie and I want to see Donald and I want to see Pooh bear!" So they got the jist of her wish real quick. She did tell them things like her favorite color and food, etc, etc. But they didn't get too many answers out of her. lol

However, they did get her second wish out of her. To meet Dora and Boots (which if I understand right there is only one place to do that and that would be in Universal Orlando which would put us at GKTW).

I totally messed up on the first date and have to call them tomorrow and let them know I have to change our first choice. Our dates were
1/31/11
2/6/11
and um I think 2/20/11
but I did write underneath on both the forms that we were open to any dates from the end of Jan till the end of March.

Ok so here is where i messed up at. My husbands cousin is in the Navy. He spent A LOT of time at our house when he was growing up and we are very close.

So close that I FORGOT that he is coming home on leave 1-24 and staying 10 days. Opps......so obviously we are not going to leave half way through his stay.

AND and and we may be going to a family retreat at The Center for Courageous Kids (http://www.courageouskids.org) which is Feb 25-27 so make that I have to change two of our travel dates. They are gonna be over me. lol

We won't find out if we are going to the retreat until Jan 24th, so gonna have to pull that 2/20 date out of there as well.

So I am thinking now

2/6/11

3/ 6/11

3/13/11


I want to go soon because we have some up coming trips that we have to take for testing for Lily and I would like to do Disney first. Everything right now is kind of on hold till we get our dates.

Hollie

 

[hollie1974]

So tonight I mulling a plan of attack in my head for our trip. But to complete my plan (ok actually to start working on it at all) I have some questions I hope someone can answer.

1. With the park hopper passes you get for Disney...do the 3 days have to be used in a row or can you break them up over the week?

and

2. Epcot for a 4 yr old? Worth it or skip it??

I know I would LOVE to see Epcot....but it's not my trip. So I want to make it as cool and fun for Lil as possible so I want to skip the stuff that she may not dig.

Oh also I forgot to mention in my post about the volunteers. On the paperwork I had to fill out it asked if there was any certain activities the wish child would like to do during their wish. I put down that Lily would love to have a tea party with the Disney princesses. I hope they can do that! She would LOVE it!

Hollie

 

[hollie1974]

So today we got as close to official dates as we can unofficially.
Confused?
Let me explain...........

So I have to call our wish coordinator today because 2 of the dates I wrote on our paperwork (yes, just from this past Saturday. Hind sight is 20/20) will not work for us. So I need to change our 1st choice and our 3rd choice.

She says that the Feb date should be no problem but she is going on vacation soon. She will be leaving the 24 and not be back till Jan 10th. She stops for a minute than says hey let me get everyone's info and I will start working on your reservations today!!!!

Then I talked to her about Drache. She is going to talk to her supervisor and see but to be honest she thinks the supervisor will say no. However he can come and stay with us at GKTW and eat there. The family will have to pay his way in to the theme parks.....so in a nutshell either way HE IS GOING!!!!

And I am really tickled if we get our first date (and it sounds like we are) because Drache's b-day is the 7th! Can you imagine spending your 12th b-day at Disney?? So happy!

I am kind of in shock as well....just like WOW this is really happening! I can't believe it! Ok gotta stop now or the water works are going to start!

Hollie

 

[newdrama12]

With the park hopper passes you get for Disney...do the 3 days have to be used in a row or can you break them up over the week?

You will be able to break them up over the course of the week if you want to.

 

[hollie1974]

You will be able to break them up over the course of the week if you want to.

Thank you!!

 

[Redwavess]

Wow that would be so awesome if you get the February dates!!

That is so cute that she days she wants to meet Dora and Boots for a 2nd wish!! It sounds like she ran her wish visit her way!! How cute!!

Have you thought about the Bibbidi Bobbidi Boutique? I called today and I guess you need a reservation for it too. I can't remember if you mentioned it yet or not, but if not check it out. We are going for the full package for our little princess. It is pricey, but she is worth it!! She is a girly girl, so I know it will be really special for her. Here is the info in case you haven't seen it yet:

Bibbidi Bobbidi Boutique

Did she say when they will make official? If she waits until she gets back from her vacation that is really getting close to your travel dates. Keep us posted!!

 

[hollie1974]

Wow that would be so awesome if you get the February dates!!

That is so cute that she days she wants to meet Dora and Boots for a 2nd wish!! It sounds like she ran her wish visit her way!! How cute!!

Have you thought about the Bibbidi Bobbidi Boutique? I called today and I guess you need a reservation for it too. I can't remember if you mentioned it yet or not, but if not check it out. We are going for the full package for our little princess. It is pricey, but she is worth it!! She is a girly girl, so I know it will be really special for her. Here is the info in case you haven't seen it yet:

Bibbidi Bobbidi Boutique

Did she say when they will make official? If she waits until she gets back from her vacation that is really getting close to your travel dates. Keep us posted!!

Well I'm thinking the dates are official, um I think. lol The reason I say that is because i have been reviewing the conversation in my mind and the only thing she really said to me was that she would talk to her super (about Drache) and then my volunteers would have the answer before they knew I had even asked the question. No mention about when/if the dates are official so I am think they are.....or that could be wishful thinking on my part! lol Maybe I'll get a call on Christmas Eve.....that'd be so cool!

It's funny you should bring that up as I was just checking it out last night. I think we are going to do that for Lily. She is really a girly-girl (well when she wants to be lol) and I think she would really like that. I saw that full service starts at $189 and up Have to start putting some money aside now.....lol The only concern i have about it is that it said on the page it takes 30-60 mins......don't know if Lily would be willing to sit still that long. Only one way to find out!

Thanks for the heads up about the reservations......I had no idea so when I find our if our dates are official then I'll call make a res.

I couldn't remember.....are you all doing any ADR's?

Hollie

 

[Redwavess]

About Bibbidi Bobbidi Boutique... Yeah I saw the starting at $189. Makes you wonder if the prices start at $189 where do they end at... LOL Our little princess wants to be Ariel... who can say no to that.

About ADRs I have gone back and forth and back and forth on this. And right now I'm not. Since we live by Disneyland we have the option of doing character dining, in the future. So I'm thinking we don't want to take big chunks out of our day or organize our time around ADRs. When I was going to do it I was thinking Chef Mickey's (I've read lots of good reviews about it) and a Princess one.

Now I'm thinking quick bites to eat and eating for free at GKTW. This will help us save the money we need for the Great Ariel Makeover!! Also I don't want to be tied down to having to be somewhere at a specific time.

Does this make sense!?! Of course I could change my mind at any time!!

 

[katieswish]

Lil sounds like a very savvy little girl....clovers as mickey mouse genius.

Good to hear everyone is feeling better and can't wait to hear more about the trip.

Epcot has a couple of cute kid show like the one with nemo and kodak. as well as the speed cars I don't remember the names of the shows or rides but you probably can get away with just spending a few hours there...it is open until 9 pm I believe and with park hopper you can go after one of the other parks. My girls loved the nemo things there