Make a Wish (and other organizations!) - Wish Trippers...UNITE!! Volume 2!

[yinyanggirls]

Hmm, I thought I did it right. Can you see the pics? I can only see one, which is weird because they should all be the same size, file type, and blog address. Well, if I did it wrong I'll have to figure it out later. If anyone wants to see our blog directly it's www.yinyanggirls.blogspot.com.

 

[pipersmom]

Oh well, now I know... LOL. I think this reply puts me at ten anyway but thanks!
I found your recent intro and it's funny that Piper and Phoebe are both 8 and both just starting the wish process. I have heard from a few friends that their wishes took a while to get approved and planned but ours seems to be moving along quickly. The day after our Docs office verified our contact info and sent in the referral I was contacted by MAW. From there it took less than 3 months before our wish granter contacted us to go over the paperwork and get the wish. They were moving pretty fast. I didn't realize that the first WISH was granted in AZ and that's what started the foundation. When we met the WG we weren't sure what she should wish for and wanted to get some info from MAW first. I just emailed her WG last Friday to say it's GKTW for sure. She was leaving for vacation so it'll be a couple more weeks before we hear from her, but I'm already anxious to find out the next step. (The paperwork we signed was the press release info, liability, checklist, etc and the first packet we received announced she had been approved for a wish.) It sounds like every chapter is a little different, so maybe you are already past some of that stuff. The last time we spoke of timing, she said something about waiting until spring if we didn't want cold, and I replied that cold wasn't an issue, just our calendar is crazy until the end of this year. So my guess is that any time after the new year is when we'll be going. Phoebe has a school break in Feb that I suggested we take advantage of but we will take her out if we have to, of course. Okay, I'm rambling now. It's hard not to get carried away....

We're waiting for Piper's Docs to fill out the ppwk that our chapter needs right now, so we haven't spoke to a wish granter yet. We're aiming for early March, so the weather will still be fairly cool, but warm enough to swim. Going any later than that would really make it too hot for her, so I'm crossing my fingers that everything will go smoothly enough for us to be able to plan for that. Our other choice would be late Feb. Would be cool if we could get there at the same time.

Phoebe is very cute! For some reason only the piccie of your DH carrying her is showing on my comp though, not sure if it's just my comp or what...

 

[Rowlf]

Melissa:

We have travel dates, we have our airline reservations, and we've been told that Wes will be going to Discovery Cove, and getting a VIP tour at SeaWorld and Animal Kingdom, but we don't have days for those, so I can't plan other things to do around them yet. We want to go to the MNSSHP, and Wes is an adventurous eater, so I want to take him to the Food and Wine (well, just the food!) Festival, but I can't plan days because we don't know specifics about when the other things were planned!

I know I could ask them, but our wish granters seem so excited about our Presentation on Thursday that it's just not worth bugging them about it at this point.

 

[kdzbear]

Princess Phoebe at her recent Enchanted Garden Bday party

Hurricane Tessa at the party

Me lighting the candles as excited little fairies looked on (or grabbed or blew or...note my other hand guarding one side)

My hubby kissing a fairy

Tim carrying Phoebe from the trampoline back to her chair. I'm often grateful for his muscles.

And just to throw in a little Disney, this is on our last trip (the girls' first trip) to Dland last March. They both LOVED it! (the redhead in our cup is my SIL)

I can see the picture of Piper on the ball and your husband carrying Phoebe, but I do not see the others. Your girls are too cute!

 

[yinyanggirls]

Melissa:

I know I could ask them, but our wish granters seem so excited about our Presentation on Thursday that it's just not worth bugging them about it at this point.

I get it. They are planning the one big special event but haven't told you which day that will be. Yeah, at this point you might as well let them make the big presentation. That's what I'm afraid of happening if they try to make a big deal about meeting Blue. Phoebe *might* love it, but she might not understand who it is either, so I'm afraid to have them go to too much trouble, or set aside too much time, to arrange it. At least you know yours is gonna be worth it!

 

[yinyanggirls]

I can see the picture of Piper on the ball and your husband carrying Phoebe, but I do not see the others. Your girls are too cute!

Piper's not mine but I'll take her.
(wasn't sure if you were replying to both of us, or thought both photos were mine)

 

[yinyanggirls]

Phoebe is very cute! For some reason only the piccie of your DH carrying her is showing on my comp though, not sure if it's just my comp or what...

Yeah, that's the only one I see. Must be something different about that one. I'll try going through my Shutterfly album and see if that works.

 

[pipersmom]

Piper's not mine but I'll take her.
(wasn't sure if you were replying to both of us, or thought both photos were mine)

*laughing hard* You may not want to say that too loudly, there are days I may just take you up on it!

 

[kdzbear]

Piper's not mine but I'll take her.
(wasn't sure if you were replying to both of us, or thought both photos were mine)

Oops! Sorry. I do get confused sometimes! Either way, both girls are cute!

 

[maroo]

Lauren says that Pheobe has to be one of the cutest Wish Kids she has ever seen. She said, "Even her NAME is CUUUUUTTTEEE!"

Of course...It doesn't hurt that she looks just like Lauren!

She figures that she and Phoebe have the same mystery illness. This thing they are calling CP...But they really have no idea what it is?

She said that she wants to follow this one! lol

Normally she just ignores me when I talk INCESSANTLY about all of the different wish families. (Lauren loves you all! She just can't keep up!)

 

[kmparrish5]

I keep up with everyone by being a lurker right now.

Our wish trip was in May 2009 and it was the best week our family has had in a really long time.
It has been a rough summer. Bailee began getting sick in July. She was miserable. Landon and Caroline joined her for a few weeks. They got better, but she did not. We did not even get to be outside this summer. Her cough was horrible. She had her sinuses cleaned out during surgery in August. After months of treatment with breathing treatments, steroids, and antibiotics we finally got a diagnosis a week ago. She had Pertusis (Whooping Cough). Thankfully, we finally had an answer. The doctor says the cough can last until November. She is still on 3 breathing treatments daily along with all of her other meds.
We also saw an immunologist in July. We took both Bailee and Landon. Landon's immune system is normal for his age. HOORAY!!!!
Bailee's first round of blood work came back abnormal. They gave her a pneumonia vaccine and did more blood work 4 weeks later. It came back that she has Specific Antibody Deficiency. She is taking Bactrim once a day to see if that helps. If it doesn't I guess we will have to do infusions. The immunologist ordered a sweat test for CF last Friday. We should know by tomorrow. However, they think it will be negative.

Landon continues to do feeding therapy. It just doesn't seem to be working. It looks like the g-tube may be his feeding method for a while. At least he is growing and developing.

Good news is that both Caroline and Bailee are doing great in school. Bailee usually struggles, but doing great this year.

We are praying everyone stays well this week so we can get out of town this weekend. We did not use our Sea World Tickets on our trip. We are headed to Sea World San Antonio for some fun!!!

 

[yinyanggirls]

Our wish trip was in May 2009 and it was the best week our family has had in a really long time.

It has been a rough summer.

The immunologist ordered a sweat test for CF last Friday. We should know by tomorrow. However, they think it will be negative.

Landon continues to do feeding therapy. It just doesn't seem to be working. It looks like the g-tube may be his feeding method for a while. At least he is growing and developing.

Kristy, I'm glad you gave an update. I just finished reading your TR and it was great! I was totally hooked 'til the end!

I'm sorry Bailee has been having such a rough time lately. The first couple years with Phoebe, the hardest part to deal with was not knowing what she had. We still don't know but have finally given up caring. I hope you get your answers soon.

I'm sorry about Landon's issues as well. I felt really bad for him (and you!) when reading about the dining issues with him on your trip. That is the kind of thing "normal" parents can't even imagine. Feeding issues are mild for Phoebe, but ongoing as well. When she was a newborn she didn't drink enough but we managed to get her just enough (like your experience with Landon, although our ped was great, thank goodness). She was on baby food until about 2 1/2. She still has issues with some textures and she gags several times a week, even though I avoid those foods as much as possible. My biggest concern for her now is, she eats very slowly. She has a great appetite but takes forever to finish a meal. And sometimes falls asleep during it because it's so tiring for her. The school she attends is awesome and they do tons of activities during each day but I think they rush her meals. She comes home STARVED. They also send home her breakfast thermos (she loves oatmeal, every day) which often has leftovers in it. When I feed her oatmeal at home she always finishes and often wants seconds. I worry they aren't feeding her enough. I will definitely be bringing this up at her IEP this month, but I'm afraid that someone, someday, is going to say "she's not eating enough, let's tube her". Once she started eating well as a baby (around 3 months old) up until age 6 she was always 95% for height and 50% for weight. She always wore slims in the size above her age. The last couple years she has slowed to 50% for height and can still fit some clothes from two years ago. Bottoms that are not Slim fall right off of her! I don't know if it means anything at all. Kids go through phases. But this is her second year at this school so I have to wonder about a connection. She also seems to have growth spurts in the summer, when she's not in school. Again, maybe it's coincidence.

Well, I didn't mean to turn this into something about me, or Phoebe rather, but your update did get me thinking about all of that.

It's nice to meet you. I'm glad you checked in.

 

[yinyanggirls]

Oh, I forgot! I wanted to ask you a couple of things about your trip. (Others who have input are obviously welcome to reply!)

I loved the outlet shirts you got. Do you remember the name of the place? Or was it totally obvious on your way? I'm all about good deals.

I was disappointed for you after reading about the Princess lunch in Norway. I was thinking of doing that one as well. It looked in your pics like you had a way better experience in MK. I know Ariel has her own place, but where were the other princesses you met that day? I'll have to schedule time wherever that was! (Even though Phoebe gets the Princess treatment, Tessa is our huge Princess fan. Unfortunately in D-land she got weirded out and wouldn't talk to them. She also had an upset tummy which was distracting her. I'm hoping the next encounter will be much better!)

Again, awesome TR! It was so well done and extremely helpful in picturing many of the details of the trip.

 

[yinyanggirls]

Check out Mikaela's trip report for some pictures.

We're under 20 days now! Yippeeeeee!!

Funny how there are several 8 yr olds going soon. I'm so excited for you guys and look forward to the reports! Mikaela looks very sweet. Her coloring is similar to my younger DD but she reminds me of Phoebe. Definitely a princess. Which, by the way, you both look totally royal in that wedding pic! I loved the coordinating browns. Too cute!

 

[yinyanggirls]

*laughing hard* You may not want to say that too loudly, there are days I may just take you up on it!

I'm right there with you! Maybe we should come up with a kid day-trade program? They're always better for other people than they are for their parents.

 

[pipersmom]

I keep up with everyone by being a lurker right now.

Our wish trip was in May 2009 and it was the best week our family has had in a really long time.
It has been a rough summer.

I'm sorry you guys had such a hard summer, but glad to hear that it sounds like things are on the upswing. Keeping my fingers crossed that the sweat test comes back negative. I've read your trip report also and really enjoyed it..it's odd how they make you feel like you know someone Keep us updated please ....

 

[maroo]

Hmm, I thought I did it right. Can you see the pics? I can only see one, which is weird because they should all be the same size, file type, and blog address. Well, if I did it wrong I'll have to figure it out later. If anyone wants to see our blog directly it's www.yinyanggirls.blogspot.com.

Bless your heart! Pics around here are difficult to post.

I would try to use photobucket...or another site...that hosts the pics.

There are instructions in post 2 that give one way you can post pics on the DIS....if you want to try a different route!

We're waiting for Piper's Docs to fill out the ppwk that our chapter needs right now, so we haven't spoke to a wish granter yet. We're aiming for early March, so the weather will still be fairly cool, but warm enough to swim. Going any later than that would really make it too hot for her, so I'm crossing my fingers that everything will go smoothly enough for us to be able to plan for that. Our other choice would be late Feb. Would be cool if we could get there at the same time.

Phoebe is very cute! For some reason only the piccie of your DH carrying her is showing on my comp though, not sure if it's just my comp or what...

I *may* be going to Disney that first weekend. They just announced a meet with one of my favorite podcasts and I now have Friday's off of work each week...(which will be great for going to Disney!)

So...maybe your dates will cross mine!

Melissa:

We have travel dates, we have our airline reservations, and we've been told that Wes will be going to Discovery Cove, and getting a VIP tour at SeaWorld and Animal Kingdom, but we don't have days for those, so I can't plan other things to do around them yet. We want to go to the MNSSHP, and Wes is an adventurous eater, so I want to take him to the Food and Wine (well, just the food!) Festival, but I can't plan days because we don't know specifics about when the other things were planned!

I know I could ask them, but our wish granters seem so excited about our Presentation on Thursday that it's just not worth bugging them about it at this point.

I can't wait to see what they say tomorrow!!

Piper's not mine but I'll take her.
(wasn't sure if you were replying to both of us, or thought both photos were mine)

*laughing hard* You may not want to say that too loudly, there are days I may just take you up on it!

Oops! Sorry. I do get confused sometimes! Either way, both girls are cute!

You guys are SO FUNNY!!! I am so glad I am not the only one that gets confused on this site!

I keep up with everyone by being a lurker right now.

Our wish trip was in May 2009 and it was the best week our family has had in a really long time.
It has been a rough summer. Bailee began getting sick in July. She was miserable. Landon and Caroline joined her for a few weeks. They got better, but she did not. We did not even get to be outside this summer. Her cough was horrible. She had her sinuses cleaned out during surgery in August. After months of treatment with breathing treatments, steroids, and antibiotics we finally got a diagnosis a week ago. She had Pertusis (Whooping Cough). Thankfully, we finally had an answer. The doctor says the cough can last until November. She is still on 3 breathing treatments daily along with all of her other meds.
We also saw an immunologist in July. We took both Bailee and Landon. Landon's immune system is normal for his age. HOORAY!!!!
Bailee's first round of blood work came back abnormal. They gave her a pneumonia vaccine and did more blood work 4 weeks later. It came back that she has Specific Antibody Deficiency. She is taking Bactrim once a day to see if that helps. If it doesn't I guess we will have to do infusions. The immunologist ordered a sweat test for CF last Friday. We should know by tomorrow. However, they think it will be negative.

Landon continues to do feeding therapy. It just doesn't seem to be working. It looks like the g-tube may be his feeding method for a while. At least he is growing and developing.

Good news is that both Caroline and Bailee are doing great in school. Bailee usually struggles, but doing great this year.

We are praying everyone stays well this week so we can get out of town this weekend. We did not use our Sea World Tickets on our trip. We are headed to Sea World San Antonio for some fun!!!

Bless your heart. I don't know how you do it...3 with special needs....

Praying for you all!

 

[pipersmom]

I *may* be going to Disney that first weekend. They just announced a meet with one of my favorite podcasts and I now have Friday's off of work each week...(which will be great for going to Disney!)

So...maybe your dates will cross mine!

Okay, I'm not going to tell you how much that possibility excites me, because it would probably scare you! Seriously though, that would be awesome, hopefully things will work out right on both ends : )

 

[maroo]

Okay, I'm not going to tell you how much that possibility excites me, because it would probably scare you! Seriously though, that would be awesome, hopefully things will work out right on both ends : )

That made me smile...I am not scared!

But don't get too excited yet (and if you kids "know" me...please don't tell them yet, lol)...I don't know what my schedule is going to be quite yet. It tends to change often.

 

[yinyanggirls]

Lauren says that Pheobe has to be one of the cutest Wish Kids she has ever seen. She said, "Even her NAME is CUUUUUTTTEEE!"

Of course...It doesn't hurt that she looks just like Lauren!

She figures that she and Phoebe have the same mystery illness. This thing they are calling CP...But they really have no idea what it is?

Maybe that's why I thought Lauren was so beautiful. She's Phoebe in ten years?

We joke and call "it" the "Phoebe syndrome". We also accuse her of faking it because she has incredible timing. For a nonverbal communicator she laughs at the most appropriate moments, like she knows exactly what's going on. I mean who wouldn't want to be waited on hand and foot and treated like a princess?