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

[maroo]

Hi-
We are home now. Thanks to all for all the kinds words. Juliana had her x-ray, ultrasound, bloodwork and check up. As of now we still haven't heard back from the clinic with her results.

She was really tough with the bloodwork this time. We didn't tell her she was going till she woke up this morning. The first thing she asks after we tell her is if 'they are gonna take my blood'. She kept asking us the whole ride to the hospital. After her check-up she knew it was time. I was holding her while she was screaming and then she started kicking. I felt bad for Juliana and for the nurses too.

We are relaxing right now watching Pinocchio. Juliana got it for her birthday and this is her first time watching it...... Hopefully we will hear something by 5.

Tim

Bless her heart!!! I hate that she has such a hard time with that blood taking stuff.

I will try to keep this computer on this evening in case you guys hear something.

Hang in there! And enjoy Pinocchio.

 

[that's nice]

Once again.. Thanks to all for thinking of Juliana.

I just got off the phone with her nurse and everything looks good! It is such a relief!

 

[keetmommy]

Once again.. Thanks to all for thinking of Juliana.

I just got off the phone with her nurse and everything looks good! It is such a relief!

That is good news!!!!

 

[maroo]

Once again.. Thanks to all for thinking of Juliana.

I just got off the phone with her nurse and everything looks good! It is such a relief!

YEAH!!!!!!! GOOD NEWS!! Fantastic!!

 

[WishMom09]

Once again.. Thanks to all for thinking of Juliana.

I just got off the phone with her nurse and everything looks good! It is such a relief!

That is awesome news! Praise God!!



We also got news from the Dr today! We finally have a diagnosis for Caleb...after 8 1/2 years! He has Ullrich Congenital Muscular Dystrophy ! Which is a slow progressive, VERY RARE form of MD. His Dr has only seen 15 other patients with this form of MD. And about 1/2 of them are still walking on their own. We are just so relieved to finally have a diagnosis!

 

[maroo]

That is awesome news! Praise God!!



We also got news from the Dr today! We finally have a diagnosis for Caleb...after 8 1/2 years! He has Ullrich Congenital Muscular Dystrophy ! Which is a slow progressive, VERY RARE form of MD. His Dr has only seen 15 other patients with this form of MD. And about 1/2 of them are still walking on their own. We are just so relieved to finally have a diagnosis!

TWO sets of GOOD NEWS!!!!

I am glad it is the slow kind!!!!

 

[llurgy]

While we are storming heaven for that's nice DD....

We have another "old" Wish Trip DISer that also needs our prayers...

For those of you that are new...you will have to check out the pre-trip report for more details...But Amber Greenawalt's son, Sebastian, is a cancer survivor and they got back a few months ago from their wish trip. He is doing well, by the way!

Since they got back, Amber's youngest child, Savannah, has had a lot of medical problems. She has been hospitalized several times. They are fairly far down the road of trying to diagnose what has been going on with Savannah and are 50/50 that she has some sort of Mitochondrial disorder.

In the meantime, Amber has now gotten sick...not sure what is going on there...you will have to read her blog if you want more details on all of that. Her issues just came up this last week and could be minor.

I have been keeping up with them, and I know some of you "old" guys have too...I just feel like we should be praying for them this week, too.

Here is the link to their blog if you are interested in knowing more about their world. You can join me in praying for them, too!

www.greenawaltfamilylife.blogspot.com

Thanks Mary........Do you know there are 5 major places I visit everyday whilst sat in hospital?
1] My user CP on this board to check on all of my subscribed threads
2] Amber's site
3] Noah's site
4] Jakob's site
5] Our own website to update

If I have time I also look on Amazon

 

[maroo]

Thanks Mary........Do you know there are 5 major places I visit everyday whilst sat in hospital?
1] My user CP on this board to check on all of my subscribed threads
2] Amber's site
3] Noah's site
4] Jakob's site
5] Our own website to update

If I have time I also look on Amazon

All of those are on my list (including lurking on www.schtabs.com) ... But... Uh... I would be embarrassed to give out my list... It is a good thing that I am single and only have a dog. And my iPhone comes in VERY handy! Helps to know exactly what you are praying for.

 

[llurgy]

I suspect I won't be on the boards too much in the next few days - we are finally moving back into our house post-reno. Remember our son Mark who has cerebral palsy and uses a walker to get around? Today, for the first time ever in his life, our son Mark will be able to move around his home, through widened hallways, and using the elevator to get to his room and accessible bathroom. If he wants something from his room, he won't have to ask for help. He'll be able to get there himself. Finally, after 10 years of relying on others to get around, he'll have his independence. With all the practice possible, he should be able to master quad canes - a hug step forward.

Last night Mark was sad that we won't have "those special hugs when you carry me upstairs." I explained that now we'll have time for hugs that are simply "loving hugs" and not "lifting hugs." We're praying that Mark finds the strength to embrace this push towards independence and to open himself up to all the possibilities that present themselves.

I'll be back!
Alison

Wow, moving into your house at last!! I'll bet it seems like you have been gone forever doesnt it??
Mark must be so looking forward to being independent!! Bless him for already missing his special hugs though

Good luck with your move home

Love Mandy

 

[llurgy]

All of those are on my list (including lurking on www.schtabs.com) ... But... Uh... I would be embarrassed to give out my list... It is a good thing that I am single and only have a dog. And my iPhone comes in VERY handy! Helps to know exactly what you are praying for.

Yes.....but.....um....Mary??? I said those are the sites I visit everyday whilst sat here in hospital didnt I???? Did I mention the bookmark list that I have at home that I usually visit everyday??? Huh? Huh?

 

[macntosh]

Our Photopass CD's arrived. I was the leader of a photo pass group. FIVE CD's worth of Photos.

Think it will take a while to sort through these?

 

[Andreaswish]

Hi all,

I am on page 61 of the posts and have read a few PTR and a few TR. There is a lot to read. Some great people on this forum so many sad medical stories. These kids have been through a lot, some more than others.

A bunch of beautiful kids and families. I am adding a lot of the kids and families to my prayer lists.

Can wait to read more.

Diane

 

[ndloewen]

Quick Question: Is there High Speed Access at GKTW (wireless or wired)? Thanks!!! 21 days!!!!

There is pretty good wireless access at the House of Hearts. There is a little lounge in there where we would bring our laptop. It worked well!

 

[maroo]

Yes.....but.....um....Mary??? I said those are the sites I visit everyday whilst sat here in hospital didnt I???? Did I mention the bookmark list that I have at home that I usually visit everyday??? Huh? Huh?

Our Photopass CD's arrived. I was the leader of a photo pass group. FIVE CD's worth of Photos.

Think it will take a while to sort through these?

Oh no!!!!

Are you going to try to separate them all? Or just make a copy to send to everyone? How does that usually work?

Bless you!!!!

Hi all,

I am on page 61 of the posts and have read a few PTR and a few TR. There is a lot to read. Some great people on this forum so many sad medical stories. These kids have been through a lot, some more than others.

A bunch of beautiful kids and families. I am adding a lot of the kids and families to my prayer lists.

Can wait to read more.

Diane

We do have some wonderful families represented on this thread!! And an awesome community of people that "get it"...It is really a wonderful mix!

And each family has had a struggle, that is for sure!!!

Feel free to keep on reading! And ask any questions that you have. I am glad you have just jumped right in!!!!

 

[Khalana]

Once again.. Thanks to all for thinking of Juliana.

I just got off the phone with her nurse and everything looks good! It is such a relief!

YAY!!!!

 

[Khalana]

That is awesome news! Praise God!!



We also got news from the Dr today! We finally have a diagnosis for Caleb...after 8 1/2 years! He has Ullrich Congenital Muscular Dystrophy ! Which is a slow progressive, VERY RARE form of MD. His Dr has only seen 15 other patients with this form of MD. And about 1/2 of them are still walking on their own. We are just so relieved to finally have a diagnosis!

That is so great!

 

[maroo]

Linda...

How is Lydia? Do you have any more good news for us?

How was the Sunday service? We are praying for you guys!

 

[ndloewen]

I suspect I won't be on the boards too much in the next few days - we are finally moving back into our house post-reno. Remember our son Mark who has cerebral palsy and uses a walker to get around? Today, for the first time ever in his life, our son Mark will be able to move around his home, through widened hallways, and using the elevator to get to his room and accessible bathroom. If he wants something from his room, he won't have to ask for help. He'll be able to get there himself. Finally, after 10 years of relying on others to get around, he'll have his independence. With all the practice possible, he should be able to master quad canes - a hug step forward.

Last night Mark was sad that we won't have "those special hugs when you carry me upstairs." I explained that now we'll have time for hugs that are simply "loving hugs" and not "lifting hugs." We're praying that Mark finds the strength to embrace this push towards independence and to open himself up to all the possibilities that present themselves.

I'll be back!
Alison

Wonderful news!! Crying happy tears for Mark!

 

[maroo]

Nichole... Gosh, everyone is on here tonight!!

How is Noah doing?

 

[jessica52877]

Good morning! It's great to see so many families who are busy planning!
(I want to go back too!)

I have been thinking of you and keep coming back to one - or maybe two - pieces of advice.

First, do your very best to accept that there is so much to do in/around Orlando that there is no way you can do it all. Focus on the absolute "must do's" for your family - all of you - and try to get them done. Everything else is icing on the cake. As you plan, focus on things that are unique to a Wish Trip: staying at GKTW (you can always visit, but you cannot stay), Wish Lounges, "magic button" access for character meets and queues, and so on. Convince yourself that WDW and Orlando will always be there and that you'll find a way to come back.

Second, and more importantly, open your heart to receive blessings from all directions. I was overwhelmed by the kindness of so many people we met: the volunteer "Angels" at GKTW, the CMs at the parks, just anyone who saw Mark's button and went out of their way to make this a special trip for all of us. All of us on this Wish Trippers thread (and our children) spend so much energy coping and bearing our loads with love and courage, and many of us do so without a lot of support. I know I have a really hard time asking for help, and often I feel guilty when I get it. To me, accepting help somehow means admitting that life is tough.

Prepare yourselves to bask in the support. Accept these blessings with grace. And give thanks for the goodness in all these people who take such joy from bringing a smile to your child's face and tears of happiness to your eyes. When life is easier, you'll find a way to reflect that goodness right back, but on the trip, accept the kindness, the empathy, the admiration and the support.

I suspect I won't be on the boards too much in the next few days - we are finally moving back into our house post-reno. Remember our son Mark who has cerebral palsy and uses a walker to get around? Today, for the first time ever in his life, our son Mark will be able to move around his home, through widened hallways, and using the elevator to get to his room and accessible bathroom. If he wants something from his room, he won't have to ask for help. He'll be able to get there himself. Finally, after 10 years of relying on others to get around, he'll have his independence. With all the practice possible, he should be able to master quad canes - a hug step forward.

Last night Mark was sad that we won't have "those special hugs when you carry me upstairs." I explained that now we'll have time for hugs that are simply "loving hugs" and not "lifting hugs." We're praying that Mark finds the strength to embrace this push towards independence and to open himself up to all the possibilities that present themselves.

I'll be back!
Alison

I am so glad that you are getting your house back but more so that Mark can now have some independence!