Princess Peanut's WISH Trip CWF/GKTW Pre-Trip Report! *We're HOME - Pg.37*

[casper_jj11]

I'm so glad that Peanut is doing better. Considering that her surgery was the only thing keeping her from an emergency situation, can you doctor contact the feds to get her case put on an urgent status so that approval comes earlier? I work with the fed gove and I'm pretty sure they all have an urgent list for things that take priority due to situations such as this. Its worth a try...

As for dates, I hear you on getting away from this winter. Ugh! We've been in March. It was cool in WDW. The evening required a sweater or coat for sure. Now, April could be different and Easter is late this year. You're going to have a pass that will allow you to skip the lines for rides and characters so crowds are too big a concern for that end of things but when the parks are over packed with people, it just gets harder to get from point A to point B. I'd recommend May. You'd be out of the easter crowds and the weather will be warmer, but not too hot. If you decide you really want to go during Easter though, book it for then. The crowds won't affect the amount you can do too much. Reserve any sit down meals in the parks as early as you can and do your counter meals like lunch at nonpeak times like 11:15am for lunch for example. It will help you avoid the crowded restaurants which is the only thing the GAC can't help you with.

You're going to have a wonderful time no matter when you go so try not to stress too much about it.

 

[Mom2Miracles]

That worked! I wanted you to know I was thinking about you and Praying Peanut, and therefore Mom, had a GREAT day!

Thank you.

 

[Mom2Miracles]

Thanks Joanne, I called our GI docs office last week, and of course haven't heard back yet. Our Specialist is AMAZING, the office staff...not so much. I am going to call again today.

I am really having a lot of trouble figuring out dates, seriously its not that hard. lol. I know with the passes it will make things easier, but like you said it will take longer to get from point A to point B which would be nice to avoid. And needing to give 2 seperate weeks, makes it harder. I can't decide on one specific week, how can I decide on two. lol! I am thinking about things in our life that I don't want the kids to miss. Mothers Day activities at the kids schools, missing too much dance too close to her dance recital, things like that. So i'd rather only have her miss one Saturday. I kind of wanted to do a Sunday-Sunday so the kids had so the kids didn't miss too much school (well school for Peanut and Preschool for Monkey), but i'm not sure thats really possible. Would the week following Easter be nuts still? Would people who were going for Easter be gone so its almost like the calm after the storm? I was thinking of maybe April 26th/27th - May 3rd/4th. OR Just after Mothers Day, so May 8th/9th -May 16th/16th. I just wish someone would pick the dates for us, and we'd be done with it.

Coming back with another question...Do we know when Spring break in the US is? What about the beginning-mid April? Before Easter? Is the weather still cold, or would it be warm enough for shorts/tees/swimming, etc? Maybe earlier would be a good idea then what I was thinking?

 

[casper_jj11]

I hear you on the dates. What we did was plan a time that worked and choose one week and then the following week. We got our first choice and I expect you will as well. I can't imagine why not unless its a way too busy time and GKTW is full. But even then, I've heard that they will move you off site if that's the case. It would be disappointing though if that wasn't what you planned. I saw you had many responses to the US spring break question on the wish board so I won't chime in there. I found the chart of busy times very interesting. It was very accurate based on all our trips so I expect the last week in April would work well. That said, it depends on when the chart was created because Easter is at hte end of April this year so it could make a difference. I know that for our trip during Presidents week, the week before was wonderful but the week after was crazy busy. I know I've said a lot about avoiding holidays because its teh busy time of year but Sydney's wish trip was in August, flaming red based on that chart , and we had a wonderful time. Yes, it was busy, as have been all the times we've been there but we've never found it busy to the point of not wanting to be there... the one exception to that was one mid summer that we did the parade and fireworks at MK on the same day as an evening extra magic hours. I knew it would be busier but never expected the crowds that happened that night. It was seriously dangerous trying to leave the park. So my advice, if you go during a busy time of year, avoid any park with EMH (morning or nights). You'll have lower numbers in the park and it will make it easier to tour and do waht you'd like.

 

[Mom2Miracles]

I think I just need to stop stressing and pick some dates and call it a day. The most important thing is us all being together , whether Disney is busy or not. Of course I don't want it insanely busy (so we'll avoid Easter and Christmas, lol) and some nice weather. Anything else is a bonus. Now tell me to pick a date, lol!!

 

[lawblond7]

Kristy:

We just got back from Disney and GKTW. I have 3 boys with mitochondrial disease - 2 with g-tubes. Clay (one of my twins and prior wish child) sounds a lot like peanut with respect to the GI issues and allergies. We have put off going to Nationwide Children's (we live just outside of Washington, DC) as we know Clay's stomach does not work very well and I have spent the last few years trying to avoid TPN for him too. (www.caringbridge.org/visit/claytonandcole - although not updated lately)

The trip we just went on was my oldest son's wish (also g-tube)and funny he wanted to meet the princesses too. We did not do the Royal Castle namely as the boys are very picky eaters and we could not get in for breakfast which was the only meal they would eat there. So we went to breakfast at Akershus. When we went - on Saturday 29 January (a week ago) we saw Cinderella there, Belle, Sleeping Beauty, Snow White and Ariel. We also saw Belle, CInderella and Sleeping Beauty in toon town. The princesses do rotate at Akershus.

As for Buzz and Woody (we did not see Jesse) we saw them at DHS across from Toy Story Mania. We also saw Buzz in MK.

Hoping you get your dates soon.

 

[Mom2Miracles]

Hi Sharon, thanks for stopping by. I'm sorry to hear you guys have been through so much, its so hard and definitely adds some challenges to your life. I would go through anything as long as my kids are happy, so we forge through it all (and i'm sure you feel the same way). As for TPN, we've been on 4 or 5 times already, and as much as we don't like it, Peanut really responds to it. BUT, we'd like to avoid it again regardless, because its no way to live. We just want small gains every week, moreso we just want to avoid loss. We are hoping to be at Children's sooner then later, but again it depends on how quickly the Government works. We are in constant touch with our GI's office and will be getting in touch with our local Government officials too. So hopefully the process is smooth and we can get to Children's.

Thanks for the information about your trip, i'm so glad you guys got to see so many of the Princesses. Its so cute that the boys wanted to meet them. Are you going to post a TR?

 

[smileycrissy]

Hi Kristy,

Glad to hear Peanut is better.

I just wanted to chime in on your dates. Both are actually pretty good times concerning the weather. I think the May dates may be a little more quieter than the after Easter one, but like I said the temps should be great then. We moved to FL last April (it was a 2 move process, moved in on April 15, went back to NJ to get my cats and last min things because we couldn't leave until May 1st for that apartment, at the end of April we came back down with the cats which was a trek of it's own). We got our annual passes in May and the parks were so nice and calm. The longest wait for a ride was 20 mins, not that you'll be waiting because I think you use your card like a fastpass. I hope that helps.

 

[Mom2Miracles]

Hi SmileyCrisis!! I think I just need to stop stressing about the dates, and just go when we want. Thanks for letting me know that he weather is decent either way. Thats really a big thing for us. We want it to be warm enough for shorts/tees and swimming. Coming from Canada, being freezing right now and a ton of snow, I want WARM! lol!!

ANNNNNNNNNNNNNNNNNDDDDD.....Our package came TODAY!!! It feels so real now!!

 

[lawblond7]

Hi Sharon, thanks for stopping by. I'm sorry to hear you guys have been through so much, its so hard and definitely adds some challenges to your life. I would go through anything as long as my kids are happy, so we forge through it all (and i'm sure you feel the same way). As for TPN, we've been on 4 or 5 times already, and as much as we don't like it, Peanut really responds to it. BUT, we'd like to avoid it again regardless, because its no way to live. We just want small gains every week, moreso we just want to avoid loss. We are hoping to be at Children's sooner then later, but again it depends on how quickly the Government works. We are in constant touch with our GI's office and will be getting in touch with our local Government officials too. So hopefully the process is smooth and we can get to Children's.

Clay has been on TPN several times also - but just short term, when in patient - several times. I think we are 4 or 5 times too. He responds also BUT I really do not want a central line if we can avoid it. In my heart I know sometime we will have no choice as he has gastroparesis, his stomach does not move things well - due to his mito. Until we get to the point where he becomes FTT on g-tube feeds we will put it off and we try to avoid invasive testing - even endoscopies theese days as anytime something like that is done he needs to have a blood transfusion and platelet transfusion due to a platelet/bleeding dysfunction also related to his mito. Nationwide is one of the best for motility disorders and our GI is in constant consult with them has Clay basically takes go-lytlety every weekend via g-tube to clean him out as that end does not work well either

[/QUOTE]
Thanks for the information about your trip, i'm so glad you guys got to see so many of the Princesses. Its so cute that the boys wanted to meet them. Are you going to post a TR?[/QUOTE]

Our trip was wonderful and I will hopefully start a TR this weekend (boys have special olympics basketball tournament on Saturday - since they play on 2 different teams it is an all day affair) as I work full time during the week. Jake wanted to meet the princess for a different reason than I am sure Peanut does - Jake thinks they are "HOT". BUT he loved all the characters and we all do - well maybe not Clay - he likes them BUT hates to be in pictures - lol

Here is a picture of Jake with the princesses - This is from my iphone BUT photopass got better pictures.

 

[tinytreasures]

Hi SmileyCrisis!! I think I just need to stop stressing about the dates, and just go when we want. Thanks for letting me know that he weather is decent either way. Thats really a big thing for us. We want it to be warm enough for shorts/tees and swimming. Coming from Canada, being freezing right now and a ton of snow, I want WARM! lol!!

ANNNNNNNNNNNNNNNNNDDDDD.....Our package came TODAY!!! It feels so real now!!

they package it here

I am stressing over dates too
We are thinking the first weeks in May too but if we don't hear something soon it will have to wait till Oct or Nov

 

[Mom2Miracles]

Clay has been on TPN several times also - but just short term, when in patient - several times. I think we are 4 or 5 times too. He responds also BUT I really do not want a central line if we can avoid it. In my heart I know sometime we will have no choice as he has gastroparesis, his stomach does not move things well - due to his mito. Until we get to the point where he becomes FTT on g-tube feeds we will put it off and we try to avoid invasive testing - even endoscopies theese days as anytime something like that is done he needs to have a blood transfusion and platelet transfusion due to a platelet/bleeding dysfunction also related to his mito. Nationwide is one of the best for motility disorders and our GI is in constant consult with them has Clay basically takes go-lytlety every weekend via g-tube to clean him out as that end does not work well either

Peanut already has a central line, she has a port in the right side of her chest. She had a PICC line, but she went septic from it in September and was hours away from her organs shutting down. It was so scary. So they didn't have a choice but to put in a port as her veins are shot (they are tiny tiny and have so much scar tissue), she was on TPN through a peripheral vein which isn't optimal, and needed 21 days of IV meds. Shes had it for 6 months now, and while I hate that its there in general, it really has been a benefit to have. Blood work is so easy (one quick poke rather then 4-6 that it would normally take and then her veins would blow within hours), we never have to worry about TPN or her veins giving way, IV meds can happen at home if possible. I guess in the long run, it has a positive spin on it - if you can call a port a positive thing. But I can see how you are hesitant, we were too but in the situation we were in, we didn't really have a choice. Our daughter needs Peg and Senokot 2-3 times a day, every day. Its the only way to keep her bowels moving. She has sever bowel dysmotility so if she doesn't get meds to help, nothing moves at all. In our case, our daughter is 100% gj-tube dependant, she feeds 24 hours a day. I really, really hope, for your sake and your sons that he can remain stable enough not to need the more drastic measures. Keeping you guys in my thoughts.

I love that he wanted to see the Princesses because he thinks they are hot, that is too funny. We say that our son (who is only 3) likes them for the same reasons.

 

[Mom2Miracles]

Are you waiting to hear from MAW with regards to when you can go? Have you already told them when you want to go? So exciting, I really hope you hear back from them soon and get the dates you want!!

 

[smileycrissy]

Woo-hoo for the arrival of the package!!!!

 

[4monkeys]

Just now found your page and had time to read it. Your story. Is so touching and really tugged at my heart. I hope she feel better soon. Glad yyour family is getting a trip. You will LOVE it at GKTW! I will follow alongg from here....

 

[Mom2mitokids]

I'm so glad peanut is feeling better. Yeah on getting the package!!! I really wish we could of did the first week of April. I want to go when its warm, but not hot. I'm just hoping March will be nice and warm, so we can go swimming. Thoughts and prayers

 

[smileycrissy]

I'm so glad peanut is feeling better. Yeah on getting the package!!! I really wish we could of did the first week of April. I want to go when its warm, but not hot. I'm just hoping March will be nice and warm, so we can go swimming. Thoughts and prayers

This will be my first March down here but I'm pretty sure it'll be warm. This week the highs are in the upper 60's/low 70's, it just gets a lil chilly at night with the temps in the 40's. But I think you'll be a-okay for swimming in March. I imagine the temps will still be about the same for the highs with the low's probably in the 60's/50's at night.

 

[blessedmom4]

Hi SmileyCrisis!! I think I just need to stop stressing about the dates, and just go when we want. Thanks for letting me know that he weather is decent either way. Thats really a big thing for us. We want it to be warm enough for shorts/tees and swimming. Coming from Canada, being freezing right now and a ton of snow, I want WARM! lol!!

ANNNNNNNNNNNNNNNNNDDDDD.....Our package came TODAY!!! It feels so real now!!

Praying Peanut is still having good days! (and everyone is feeling well)!

I would pick dates that "feel right" around your activites/family...we were supposed to go in May, d/t health issues we had to psotpone as you know..so May would definitely be my pick (just my 2 cents ).

PEANUT IS

 

[blessedmom4]

KELTAN

 

[Mom2Miracles]

Just now found your page and had time to read it. Your story. Is so touching and really tugged at my heart. I hope she feel better soon. Glad yyour family is getting a trip. You will LOVE it at GKTW! I will follow alongg from here....

HELLO!! Thanks for reading, and for your kind words.

I'm so glad peanut is feeling better. Yeah on getting the package!!! I really wish we could of did the first week of April. I want to go when its warm, but not hot. I'm just hoping March will be nice and warm, so we can go swimming. Thoughts and prayers

I e-mailed our wish co-ordinator yesterday to find out what the next steps are, but I didn't hear back. So I called and left a message. I know they need some stuff from us, but i'm not sure when I need to get stuff together, when I send it, who I send it to, when they need our choice of dates, etc. We are now thinking the very end of March or the beg. of May as our two weeks to give. We are thinking of avoiding April all together now, because it seems to be the business month in general, aside from Christmas.

This will be my first March down here but I'm pretty sure it'll be warm. This week the highs are in the upper 60's/low 70's, it just gets a lil chilly at night with the temps in the 40's. But I think you'll be a-okay for swimming in March. I imagine the temps will still be about the same for the highs with the low's probably in the 60's/50's at night.

Good to know that March isn't too bad weather wise, especially since if we are doing March, it won't be until the end.

Praying Peanut is still having good days! (and everyone is feeling well)!
I would pick dates that "feel right" around your activites/family...we were supposed to go in May, d/t health issues we had to psotpone as you know..so May would definitely be my pick (just my 2 cents ).

Thank you, and I love the pictures you made/found for both the kids. They are so cute, and they loved them.

So Peanut is doing amazingly well. Her steri-strips are starting to peel back a bit, but are still pretty snug in the middle and at the bottom. We've put some gauze and tape on because since the top parts are pulling off, we are afraid she'll catch it when she tries to go the bathroom and rip it off. Eeek. She has her weekly appt on Friday, and usual, i'm nervous. You'd think after over a year of this weekly/twice weekly appts, I would be used to it, but nope.