Wish Trippers...Unite!! Volume One

[SueM in MN]

I'm totally nauseated now. I finally got through to volunteer number 2's husband. Her dad had a stroke and she's out of state. The pack was passed off to a volunteer I never heard of. Number 2's husband took pity on me and called volunteer number 3. She hasn't called me and in no way can come tomorrow. He's taking it on himself to pick the pack up and bring it here but can't come until after 5p tomorrow. I think I'll cry then throw up and then maybe cry some more. Pray for number 2's father and give thanks to her husband. Me, I'll survive. Karen

and lots and lots of

 

[LeeLee2U]

Thanks LeeLee and Karen!
Karen, no kidding right. I will never forget the "peepee" dance we would do when Michael would pee when he was so septic and his kidneys were failing.

So I talked to his plastic surgeon and we believe he does have an ileus but we will try and treat him at home as he pooped some this morning and felt better. We're giving it another 24 hours. But geez, trying to get a five year old to take colace capsules or take a supsitory is just about impossible in my book. Grrrr! I did get a "are you a nurse?" from the doctor when we were talking ileus' though. LOL Nope, doc, just have dealt with low motility for years and a six week ileus last year. What can I say? I stay informed!

Oh we've done the pee pee and the poo dance before. And CAN"T wait to do the Pee Pee dance for DH. We already joke about investing in Depends for after transplant!!!

I'm so so glad he is feeling better. I don't like to take that stuff myself so I can imagine poor Michael!! Here's lots of prayers for ya'll. Please let us know what happens!

I'm totally nauseated now. I finally got through to volunteer number 2's husband. Her dad had a stroke and she's out of state. The pack was passed off to a volunteer I never heard of. Number 2's husband took pity on me and called volunteer number 3. She hasn't called me and in no way can come tomorrow. He's taking it on himself to pick the pack up and bring it here but can't come until after 5p tomorrow. I think I'll cry then throw up and then maybe cry some more. Pray for number 2's father and give thanks to her husband. Me, I'll survive. Karen

Oh Karen!! I'm feeling for you! Bless that poor mans heart. Here's to getting your pack tomorrow and we'll pray the bank we'll go ahead and put the $$ in. How is Alize?? Is his cold any better?? Please Please let us know how it goes tomorrow!

 

[Pez Pez]

Okay guys, I'm officially panicking. Alize has a chest cold and ear infection. DH just got lost in Pittsburgh, we haven't got anything from MAW, our bank says they have to hold the check 3-5 business days and we leave early Friday morning. I called the closest office 2 weeks ago (you'll get your pack 2 weeks before you leave), then last Tues (I'm overnighting the packet to your vounteers today), called volunteer number 1 tonight (volunteer number 2 has the packet) and volunteer number 2 (no answer, left a message). Tell me it's going to be okay. Karen

Karen,

Don't hesitate to call you Wish Manager. Our volunteer can't say no to anything. I have become personal friends with her but at times she can be unintentionally flaky. We have been a really "easy" wish and she had a very complex one she was working on. We got sidelined. I didn't want to bug anyone, but hadn't heard from anybody for 3+ weeks. I called the Wish Manager and she was AWESOME!! Really put me at ease.
I also worry about the banking deal. We just switched accounts after 15+ years with the same bank. I don't want them to do that to us. Wonder if you can cash the check at the foundations bank?? It is always the little things that really keep my mind going.

Our Wish party is tomorrow night. I can't wait to get all the goodies

 

[LindaBabe]

Oh, my gosh. Go away for a week and look what happens! Sending dust for Michael - Alize - and your trip!

 

[5dwarves]

Hey everyone....whew....one major holiday down, one to go. Why is having fun and celebrating so much work? We are off to Children's today to see the ever elusive neurologist....the man keeps leaving the country to do symposiums and we keep getting bumped back. Hopefully someone has nailed his shoes to the floor until we get there. Adam is still having seizures with no known cause.

Wendy, all our best to Peter Pan, I mean Michael, in his recovery. Poor little guy. Been through a lot. Otherwise are things going well post surgery?

Karen, can you cash the check at the organization's bank and then put the cash in your account? We had to cash our check and do that to prevent the same issue from coming up. At my bank, any checks over $1000 have holds placed on them for a few days; if it is an out of state bank it is even longer. It might mean an extra stop, but it could prevent some worry. Is Alize feeling better?

Leah, How is DH? Any news from the transplant doctors?

~Elisa

 

[wendygrace]

Elisa, I hope they get that neurologist to stay put. Don't they get that our kid needs them!! Really! And to symposiums. Stop yapping and get back to work! LOL I hope you get some answers soon.

Karen, I hope it all works out for you.

Leah, how are things going?

We are back in St.Louis. I am now suspecting a nasty infection that was kept in check before by that lovely antibiotic he was taking at the hospital. I hope nothing has been permanently damaged. We're meeting with the general surgeon tomorrow morning. *sigh*

 

[GirlieGirl]

Thank you all for the wonderful advice!
I will definitely pass on the info and refer the mom here to the Dis Prayers and Pixie dust to you all!
May you all have a blessed holiday!
Susie

 

[5dwarves]

Elisa, I hope they get that neurologist to stay put. Don't they get that our kid needs them!! Really! And to symposiums. Stop yapping and get back to work! LOL I hope you get some answers soon.

Karen, I hope it all works out for you.

Leah, how are things going?

We are back in St.Louis. I am now suspecting a nasty infection that was kept in check before by that lovely antibiotic he was taking at the hospital. I hope nothing has been permanently damaged. We're meeting with the general surgeon tomorrow morning. *sigh*

Wendy:

I am sorry to hear Michael is on his way back to the hospital. Hopefully the surgeons will have some answers for you. How is Danae doing through all of this? It is so rough on every member of the family. Sending a bunch of happy thoughts your family's way...

No definite answers on why Adam is having seizures...just increased rx doses. I have already started the process to get in with another DR. for a second opinion at a different hospital. It just takes forever to get in with these specialists. We see the transplant doctors next week. Hopefully Adam will be steroid free by next weekend! Wooo Hoooo!!!!

~E

 

[alizesmom]

Wendy, sending hugs for you and Michael. Karen

 

[LindaBabe]

Oh, my goodness! Prayers for Michael - and the trip - and the volunteer - and basically everyone - my memory is shot, sorry.

 

[patticake3]

I am just catching up here; my computer at home is very sick (as long as my family is healthy, I'm fine, though!), and I try not to spend too many work hours on this site (as much as I want to!), so...

Wendy, positive thoughts and prayers to Michael. I hope they do what they have to do and you can get out soon with a healthy boy! I cracked up over the pee dance comment, and everyone else's comments after. I thought I was the only nut doing the pee dance in the hospital (literally dancing around singing, 'I'm doing the pee dance, it's working!'); not surprisingly, that's a well-known dance!

Karen, I hope things are starting to fall into place for your trip. Hang in there. Big prayers to you and your family for a great trip, hope Alize is feeling better, and hope Alize's new sister becomes a sweet reality too.

LeeLee, I'm glad you got the bloodwork settled - I was going to say that you should always speak up when you're feeling unsettled about something. As much as doctors make the medical decisions, you are the mom, you have the instinct, you need to feel comfortable and sure about the care you're receiving. I sometimes feel weird questioning the doctors about everything, but I just blurt out every question I think of, every concern I have, no matter how big, small, strange, whatever. I think it's really important to always keep a dialogue going so they know that you're one of the parents that will ask questions and will be used to talking things through with you.

PezPez, your trip is so soon (I hope I got this right)! You must be so excited!

Winnielover, I think you're back? I'm sorry, I can't keep everything straight; I need to take notes when I'm reading! If you're back, hope it was a blast! If you haven't left, then of course, it will be a blast!

We haven't heard from our wish person since the first week of November. She called to say that someone else would be calling us in a few days. That never happened, but I'm sure this is a crazy time of year for everyone, so I'll call her back and hope for the best. We're not going until the first week of March (hopefully!), so I still have plenty of time, but I'm itching to plan!

Sending lots of positive thoughts to everyone here and hope you all had a wonderful Thanksgiving.

 

[alizesmom]

Colds are abating, packet with check came last night. Things seem a little better. Karen

 

[5dwarves]

Colds are abating, packet with check came last night. Things seem a little better. Karen

Health AND money. Things are good for Karen!

 

[LeeLee2U]

Oh Karen, I'm so glad things are looking better!!!
Wendy, Sorry you have to go back to the surgeon. I was praying for Poop for Michael and for no more @ here so maybe my prayers got a bit mixed up!!

After fighting these viruses that seem to love us the past couple of months, things are looking a little better. We should start building in the next couple of weeks. They aeem to think the fever thing with Braeton is all viral. That is what the blood work is pointing too anyway. Medicaid denied the CT scan due to not enough clinical evidence. You know it's al in how someone bills and it was a new girl. Anyway if he runs fever again (Notice I said IF and not WHEN, I'm trying to have faith here! ) I'm to take him in and then they'll submit the orders with those Dr. visits notes. Anyway he's doing much better. We did have 2 seizures the other day, first time in 8 months. But he recovered rather quickly and even made it to school. He has mild focal seizures that seem to focus more in his legs. He's still having headaches and we are taking more naps each day. Well HE is. I wish I could!!!
Dh is getting ready for surgery and keeps scaring us with spitting up blood issues (Sorry for the TMI!) but it seems to be bleeding ulcers and he has been o.k. the last few days with that. He's steadily getting weaker, but his blood count is great so.. It's almost 7 years sice he's been on dialysis and since that is the average life span on dialysis I think we've done pretty good.
Well I've got to go. Another full day ahead!

 

[Iluvmickeymouse!]

Oh my...lots going on that I have missed...let's try and catch up....

We get to meet our girl tomorow and will bring her home as soon as we return from Disney!!!!!! Karen

Yay!!! That is so cool.

So, we made it back home safe and sound!!! What a wonderful trip we had. There is so many exciting stories and information to share and I can't wait to get started.

We are all still pretty tierd and I just started with our laundry!! Boy can we sure create a lot of laundry!!!!!! Everyone is unpacking there things and finding a special place for them. I can't believe how much stuff we got while we were in Florida. Luckily, they gave you a free duffel bag to carry things home in.

The weather was incredible the whole week, and the parks and attention to the wish child was amazing!! I don't think I could have asked for a better vacation. Everything was just so magical and it now all holds a special place in our hearts.

I'll definitely be starting my TR in the next few days. I can't figure out how to put pictures on but, I'm working on that as well.

I'm also trying to catch up on everyone's Trip reports as well. Along with this board as it seems the last time I signed on the there has been 4 pages created!!!!

You'll here back from me soon. I'm working on my TR as I speak so feel free to hop on over there to read all about our wish trip to Disney WORLD!!!

Hope you had a good time...will head over to your TR as soon as I can!

Okay all you wish trippers, I need your help. I have read your stories and have been so inspired by all of you I figure you would be the people to ask! I have been blessed with a wonderful husband and four healthy children. When we hear of families in need, we both tend to jump in and help out when we can. Our neighbor works at a local elementary school and she told us about a family with a son who has special needs. He is losing his eyesight and wants to experience the Disney magic before his vision is all gone. As she put it, we want to put all of the wonderful sights in his memory bank so he can "look" back on it. I'm not sure if they qualify or have even tried for a WISH trip, but we are stepping in and trying to put something together for them. We have covered the room and flights and the community is being canvassed for other donations to help them out with tickets and dining, etc. My question to you all is that enough? Do we need to make a special request with Disney for extra help for them? What do I need to do from here on out? We love Disneyworld and just so want to help out this little guy and his family to build some lifelong memories and we want to make sure we do it "right." Can you all help me out here? Thank you all in advance. You are an amazing group of people who have touched lives of lurkers (at least this one!) and I just know if there are people out there to ask, you are it!

You are amazing also....to do this for someone is wonderful. I know others have given you suggestions....I just wanted to say how sweet it is what you are doing for this family. Something that does not have to do with the special needs aspect..but I think a sweet surprise would be a gift basket in their room when they arrive. Feralpeg..I believe is the ladies name here on te Dis that soed them. Just food for thought.

In other news, Michael may have an Ileus. We are hoping its just constipation but we shall see. Poor kid is sooooo distended. We have Colace. We have a supository. And he's asleep. I hope this gets better soon otherwise we'll be heading out to St.Louis tomorrow. *sigh*

Keeping you in our thoughts.

Karen,

Our Wish party is tomorrow night. I can't wait to get all the goodies

Oh fun... I wish we would have had one...no biggie...tell us all about it!!

Colds are abating, packet with check came last night. Things seem a little better. Karen

Glad things are looking up. Only four more days!!!!!

Oh Karen, I'm so glad things are looking better!!!
Wendy, Sorry you have to go back to the surgeon. I was praying for Poop for Michael and for no more @ here so maybe my prayers got a bit mixed up!!

After fighting these viruses that seem to love us the past couple of months, things are looking a little better. We should start building in the next couple of weeks. They aeem to think the fever thing with Braeton is all viral. That is what the blood work is pointing too anyway. Medicaid denied the CT scan due to not enough clinical evidence. You know it's al in how someone bills and it was a new girl. Anyway if he runs fever again (Notice I said IF and not WHEN, I'm trying to have faith here! ) I'm to take him in and then they'll submit the orders with those Dr. visits notes. Anyway he's doing much better. We did have 2 seizures the other day, first time in 8 months. But he recovered rather quickly and even made it to school. He has mild focal seizures that seem to focus more in his legs. He's still having headaches and we are taking more naps each day. Well HE is. I wish I could!!!
Dh is getting ready for surgery and keeps scaring us with spitting up blood issues (Sorry for the TMI!) but it seems to be bleeding ulcers and he has been o.k. the last few days with that. He's steadily getting weaker, but his blood count is great so.. It's almost 7 years sice he's been on dialysis and since that is the average life span on dialysis I think we've done pretty good.
Well I've got to go. Another full day ahead!

Thoughts and prayers for your DH and Braeton.


Anyone heard from Bill or Who'syourMickey lately??? Hope all is well with you if you are lurking!!!

For the two of you leaving soon on your trips.....have fun!!!!!!!!!!!!!!!!!!!!

 

[alizesmom]

We leave tomorrow! Will arrive at GKTW on Sunday. I think we're ready, just the last minute stuff that I can't pack till tomorrow am and the last load of laundry tonight. I'm taking my laptop and will see if I have the fortitude to actually post during vacation. Hope to see some of you there. Karen

 

[scrappin]

I am sooooooo excited for you. Glad everything has come together. How exciting!!!!! Sending good wishes with you so that you all enjoy the trip and have some time to just relax!!!!!

 

[patticake3]

Karen, have an amazing and wonderful trip!!!

 

[LindaBabe]

Safe Journey, Karen and family!

 

[Pez Pez]

We leave in less than 24 hours. I am finishing up packing and shopping today. Our wish party was great. We went to Dairy Queen for ice cream cake first, then off to a Japanese restaurant (Trevor's Fave). The Wish coordinator insisted we have cake first to get us ready for all the ice cream at GKTW She brought him Meet The Robinsons movie, MAW shirt, trading pins, MAW arm bands and a camera. We all had a great time!!

I am finishing up packing. I know there are lists on the main board referencing what to take but just wanting any additional input you may want to give, here is what I have so far. This of course is in addition to the basics: clothes, meds, toiletries, etc:

Poncho's
Crocs
Lanyards
Tickets for MVMCP
Blister relief by Bandaid
Sunglasses
Sunscreen
Neon Luggage strap for stroller (so I know which is mine)
Camera
Thank You cards


I am drawing a blank....I think that is all the extras but I have 4 suitcases sitting around me

I dont have a laptop and am going to need a few minutes of internet access during the week to manage some of my e-bay auctions. Does anyone know of a place close to GKTW that offered internet access?

TIA