Make a Wish (and other organizations) - Wish Trippers UNITE! Volume THREE! :)

[Happy Dreams1]

Well, today during math class ( 9:30 AM), my cel phone began to vibrate. I thought it was a text message from Mom, but it continued to vibrate-it was a call. I looked at the screen and it said: Make A Wish. I had, a day earilier, saved to my contacts the office number. My heart jumeped immediately of excitement and fear as I couldn't get caught using my cel in class. I could not answer the call. I texted mom, telling her that MAW called and to call them back. Right after I texted her, they called her. She then told me that they asked some questions and that they will contact my Doctor today. I didn't know they had alreayd recieived my refferal forms as we had trouble with it yesterday. The thing is, my doctor doesn't work on Tuesdays. He starts working tomorrow; so tomorrow it is. This was very surprising because we were told yesterday by MAW that the lady who did the paper work and stuff was not in P.R. and that we would have to wait until next week for them to contact the doctors. MAW magic.


BUT, there was a rude man mommy encountered. He started doubting her and firmly and rudely said, "YOU knoow, this isn't for everyone. It's for those who are ABOUT TO DIE!" Wow....

 

[kissesbykim]

Well, today during math class ( 9:30 AM), my cel phone began to vibrate. I thought it was a text message from Mom, but it continued to vibrate-it was a call. I looked at the screen and it said: Make A Wish. I had, a day earilier, saved to my contacts the office number. My heart jumeped immediately of excitement and fear as I couldn't get caught using my cel in class. I could not answer the call. I texted mom, telling her that MAW called and to call them back. Right after I texted her, they called her. She then told me that they asked some questions and that they will contact my Doctor today. I didn't know they had alreayd recieived my refferal forms as we had trouble with it yesterday. The thing is, my doctor doesn't work on Tuesdays. He starts working tomorrow; so tomorrow it is. This was very surprising because we were told yesterday by MAW that the lady who did the paper work and stuff was not in P.R. and that we would have to wait until next week for them to contact the doctors. MAW magic.


BUT, there was a rude man mommy encountered. He started doubting her and firmly and rudely said, "YOU knoow, this isn't for everyone. It's for those who are ABOUT TO DIE!" Wow....

What? That's a ridiculous remark! It's for children who have had or have life threatening illnesses or diseases. Your mom should definitely make a complaint. That comment makes me sick.

 

[Happy Dreams1]

What? That's a ridiculous remark! It's for children who have had or have life threatening illnesses or diseases. Your mom should definitely make a complaint. That comment makes me sick.

It makes me sick too!! I'd like to see him tell that to the wish kids who are now adults! I mean, if he works there, he shiuld at least read their webpage, which no longers says for terminal kids. But then, my mom doesn't understand that MAW doesn't determine eligiblity for a wish. But it's okay since, my doc's gonna get contacted anyway and what anyone thinks will not interfere with that.BTW, how did you get the approval of your child's eligiblity? Like, did you get a card in the mail or a phone call? Just curious

 

[rcq925]

Well bad news today! Hayley had to be admitted to the hospital today. He cough was getting much worse, she started wheezing a lot, and her oxygen saturation was falling too low at night during sleep.

She is on an IV antibiotic and IV steroids to help her get better fast! She will probably have to sleep with oxygen tonight. Our doctor wants her above 93 and she was going down to 90 at home in her sleep. So she will have to stay in the hospital until she can get through the night without oxygen. We are hoping it will only be 2-3 days and then she can come home and finish the IV's from home, we just give them to her.

I guess in a way it is better that she gets sick now and that way she can be good and healthy when we leave in 26 days! Normally IV antibiotics are 10-14 days in length, so she should be all done prior to our trip.

She did get another Big Give Package tonight, but we will wait until she gets home to open it because I don't want to take it to the hospital and get hospital germs on whatever may be in the package!

Thank you so much for all the well wishes and prayers for Hayley to feel better!! I hope they work and she can come home soon!

I am out of vacation days at work (using them last winter and spring when she was hospitalized 3 times in 4 months) until after October 30th. I was able to leave work today and get her all admitted and set up, but Dad will have to be there with her and stay the nights with her until Friday. This makes me really sad because I am usually the one who spends most of the time with her and I don't like being away from her! But I know she is in good hands! She has her favorite nurse tonight and we love our doctor and all the nurses on the peds floor at our hospital!

Anyway I am going to quit babbling now and spend some time with Nathan!

 

[Happy Dreams1]

Well bad news today! Hayley had to be admitted to the hospital today. He cough was getting much worse, she started wheezing a lot, and her oxygen saturation was falling too low at night during sleep.

She is on an IV antibiotic and IV steroids to help her get better fast! She will probably have to sleep with oxygen tonight. Our doctor wants her above 93 and she was going down to 90 at home in her sleep. So she will have to stay in the hospital until she can get through the night without oxygen. We are hoping it will only be 2-3 days and then she can come home and finish the IV's from home, we just give them to her.

I guess in a way it is better that she gets sick now and that way she can be good and healthy when we leave in 26 days! Normally IV antibiotics are 10-14 days in length, so she should be all done prior to our trip.

She did get another Big Give Package tonight, but we will wait until she gets home to open it because I don't want to take it to the hospital and get hospital germs on whatever may be in the package!

Thank you so much for all the well wishes and prayers for Hayley to feel better!! I hope they work and she can come home soon!

I am out of vacation days at work (using them last winter and spring when she was hospitalized 3 times in 4 months) until after October 30th. I was able to leave work today and get her all admitted and set up, but Dad will have to be there with her and stay the nights with her until Friday. This makes me really sad because I am usually the one who spends most of the time with her and I don't like being away from her! But I know she is in good hands! She has her favorite nurse tonight and we love our doctor and all the nurses on the peds floor at our hospital!

Anyway I am going to quit babbling now and spend some time with Nathan!

I'm sorry. But at least she's in good hands right now so they make her all better before MAW. More prayers headed her way!!!!

 

[kissesbykim]

It makes me sick too!! I'd like to see him tell that to the wish kids who are now adults! I mean, if he works there, he shiuld at least read their webpage, which no longers says for terminal kids. But then, my mom doesn't understand that MAW doesn't determine eligiblity for a wish. But it's okay since, my doc's gonna get contacted anyway and what anyone thinks will not interfere with that.BTW, how did you get the approval of your child's eligiblity? Like, did you get a card in the mail or a phone call? Just curious

The MAW coordinator called me. We already knew Ty would get approved but we weren't sure if the Doctor was going to approve our dates. When you get your call from MAW, you should definitely start a PTR. They are so fun! Good luck and keep fighting the good fight!

 

[Mom2mitokids]

Well bad news today! Hayley had to be admitted to the hospital today. He cough was getting much worse, she started wheezing a lot, and her oxygen saturation was falling too low at night during sleep.

She is on an IV antibiotic and IV steroids to help her get better fast! She will probably have to sleep with oxygen tonight. Our doctor wants her above 93 and she was going down to 90 at home in her sleep. So she will have to stay in the hospital until she can get through the night without oxygen. We are hoping it will only be 2-3 days and then she can come home and finish the IV's from home, we just give them to her.

I guess in a way it is better that she gets sick now and that way she can be good and healthy when we leave in 26 days! Normally IV antibiotics are 10-14 days in length, so she should be all done prior to our trip.

She did get another Big Give Package tonight, but we will wait until she gets home to open it because I don't want to take it to the hospital and get hospital germs on whatever may be in the package!

Thank you so much for all the well wishes and prayers for Hayley to feel better!! I hope they work and she can come home soon!

I am out of vacation days at work (using them last winter and spring when she was hospitalized 3 times in 4 months) until after October 30th. I was able to leave work today and get her all admitted and set up, but Dad will have to be there with her and stay the nights with her until Friday. This makes me really sad because I am usually the one who spends most of the time with her and I don't like being away from her! But I know she is in good hands! She has her favorite nurse tonight and we love our doctor and all the nurses on the peds floor at our hospital!

Anyway I am going to quit babbling now and spend some time with Nathan!

Keeping Hayley in my thoughts and prayers. Hoping it's a short stay.

 

[maroo]

Well, today during math class ( 9:30 AM), my cel phone began to vibrate. I thought it was a text message from Mom, but it continued to vibrate-it was a call. I looked at the screen and it said: Make A Wish. I had, a day earilier, saved to my contacts the office number. My heart jumeped immediately of excitement and fear as I couldn't get caught using my cel in class. I could not answer the call. I texted mom, telling her that MAW called and to call them back. Right after I texted her, they called her. She then told me that they asked some questions and that they will contact my Doctor today. I didn't know they had alreayd recieived my refferal forms as we had trouble with it yesterday. The thing is, my doctor doesn't work on Tuesdays. He starts working tomorrow; so tomorrow it is. This was very surprising because we were told yesterday by MAW that the lady who did the paper work and stuff was not in P.R. and that we would have to wait until next week for them to contact the doctors. MAW magic.


BUT, there was a rude man mommy encountered. He started doubting her and firmly and rudely said, "YOU knoow, this isn't for everyone. It's for those who are ABOUT TO DIE!" Wow....

WAIT>....

Someone FROM MAW said that!?!?!?!?!?!

If so...PM me.

Well bad news today! Hayley had to be admitted to the hospital today. He cough was getting much worse, she started wheezing a lot, and her oxygen saturation was falling too low at night during sleep.

She is on an IV antibiotic and IV steroids to help her get better fast! She will probably have to sleep with oxygen tonight. Our doctor wants her above 93 and she was going down to 90 at home in her sleep. So she will have to stay in the hospital until she can get through the night without oxygen. We are hoping it will only be 2-3 days and then she can come home and finish the IV's from home, we just give them to her.

I guess in a way it is better that she gets sick now and that way she can be good and healthy when we leave in 26 days! Normally IV antibiotics are 10-14 days in length, so she should be all done prior to our trip.

She did get another Big Give Package tonight, but we will wait until she gets home to open it because I don't want to take it to the hospital and get hospital germs on whatever may be in the package!

Thank you so much for all the well wishes and prayers for Hayley to feel better!! I hope they work and she can come home soon!

I am out of vacation days at work (using them last winter and spring when she was hospitalized 3 times in 4 months) until after October 30th. I was able to leave work today and get her all admitted and set up, but Dad will have to be there with her and stay the nights with her until Friday. This makes me really sad because I am usually the one who spends most of the time with her and I don't like being away from her! But I know she is in good hands! She has her favorite nurse tonight and we love our doctor and all the nurses on the peds floor at our hospital!

Anyway I am going to quit babbling now and spend some time with Nathan!

Bless your heart!! I hope she gets better very soon!! And I will be praying for you, too...that is really hard!

 

[maroo]

We got a load of bad news about Lauren today.

Went to see her orthopedic surgeon that put in the rods in her back - the surgery that nearly killed her and one of the reasons she was granted a wish...

They fixed her back, but the curve has now moved to her neck.

Here is a picture of the top of the xray. Obviously Lauren doesn't want people seeing the whole thing.

She has a 50 degree curve in her neck. The xray looked simply terrible. She "compensates" by having a 10 degree curve in her lower pelvis area, but not enough. Her side has been leaning against her wheelchair and has pressed so hard against her side that the ribs have moved (her muscles have atrophied a lot) and now her lung is severely pressed against her side. You can see it above...it is more narrow on the left side of the xray (which is actually the right side of her body) than the left - which looks more normal. It looks like she has about 10% of one lung. The other lung is fine, but due to her size, her maximum lung capacity before this development was already only 50%.

The next step is to possibly get her a whole new wheelchair with new seating and new stuff to possibly keep her straight. The first attempt at this failed, but they are sending her to a new place to get it worked on.

The following step is surgery ... a big bad surgery where they will fuse her neck and fuse her back all the way to her pelvis. Hopefully that will keep her straight.

I had heard that they were not going to try this surgery because the risks are so high that she would lose all function below her neck. And I don't think they would even attempt it except that the rest of her health is good right now...It is almost like they decided it was worth doing so they could save her from pain for the years she has left this side of heaven.

But the whole thing was a huge blow to her Mom - she does radiology for a living, so she can spot a bad xray a mile away. Please pray for her whole family as they try to make some decisions and digest all of this.

 

[kiwigirl]

I'm really sad to hear Lauren and Hayley are dealing with some rough things right now. I am lurking and reading but had to post and share my empathy with you. And as for that MAW comment - that disgusts me, we are all so very aware that our children who have life-threatening conditions face precarious situations their whole lives and anything can change in a moment so we take the chance to grasp life!

 

[nursekimber]

I'm really sad to hear Lauren and Hayley are dealing with some rough things right now. I am lurking and reading but had to post and share my empathy with you. And as for that MAW comment - that disgusts me, we are all so very aware that our children who have life-threatening conditions face precarious situations their whole lives and anything can change in a moment so we take the chance to grasp life!

I'm also praying for both Lauren and Hayley and their families.
And as for that man....
I agree with kiwigirl's comments.

 

[rcq925]

Maroo,

I am praying for you, Lauren and her family! I hate surgery of any type, there are always so many risks, but sometimes it is the best and only answer!

 

[Happy Dreams1]

The MAW coordinator called me. We already knew Ty would get approved but we weren't sure if the Doctor was going to approve our dates. When you get your call from MAW, you should definitely start a PTR. They are so fun! Good luck and keep fighting the good fight!

Thanks! That's what I was thinking, to start a PTR when we get the call. Thanks for the suppprt also!
Oh and iM PRAYING FOR HAYLER AND LAUREN!

 

[mjarecki]

Well bad news today! Hayley had to be admitted to the hospital today. He cough was getting much worse, she started wheezing a lot, and her oxygen saturation was falling too low at night during sleep.

She is on an IV antibiotic and IV steroids to help her get better fast! She will probably have to sleep with oxygen tonight. Our doctor wants her above 93 and she was going down to 90 at home in her sleep. So she will have to stay in the hospital until she can get through the night without oxygen. We are hoping it will only be 2-3 days and then she can come home and finish the IV's from home, we just give them to her.

I guess in a way it is better that she gets sick now and that way she can be good and healthy when we leave in 26 days! Normally IV antibiotics are 10-14 days in length, so she should be all done prior to our trip.

She did get another Big Give Package tonight, but we will wait until she gets home to open it because I don't want to take it to the hospital and get hospital germs on whatever may be in the package!

Thank you so much for all the well wishes and prayers for Hayley to feel better!! I hope they work and she can come home soon!

I am out of vacation days at work (using them last winter and spring when she was hospitalized 3 times in 4 months) until after October 30th. I was able to leave work today and get her all admitted and set up, but Dad will have to be there with her and stay the nights with her until Friday. This makes me really sad because I am usually the one who spends most of the time with her and I don't like being away from her! But I know she is in good hands! She has her favorite nurse tonight and we love our doctor and all the nurses on the peds floor at our hospital!

Anyway I am going to quit babbling now and spend some time with Nathan!

We're thinking of you guys. We understand how up and down these lung diseases can be. Sorry to hear that Haley is in the hospital. And steroids, ugh, we're on them too, not fun. Hopefully her sats can get up and she can go home. I've been worried that Michael is going to catch something right before we leave and be too sick to go. His brothers both have sinus infections right now, so we're trying everything to keep Michael healthy. Hope to hear more from you soon!

 

[teskak]

Another Wish question

Can somebody (Maroo??) go over to the Coping & Compassion board as there is a poster in need of some help & advice about a friend qualifying for a Wish.

http://www.disboards.com/showthread.php?t=2579569

Thanks

 

[planningcrazymom]

so so sorry to hear about Lauren and Haylee. I hope things get better soon

 

[Haybuggsmom]

Our thoughts and prayers are out to Hayley and Lauren.

 

[J'sMum]

My hopes thoughts and especially prayers go out to Lauren, Hayley, thier friends and family. *hugssss hugsss hugssss


I tried to do an update on TR tonight but some reason it keeps telling me to log in and refuses to let me do so :/ I will just try again tomorrow.

My son's school has been a pain in the rear these past couple of weeks. It;s almost as though they are punishing him for having a wish trip and have stressed him out to the point I had to go pick him up from school today and bring him home. After losingmy cool with the super's office and being extremely firm with the 504 coordinater i only wanted to scream more. they said they have no paperwork on his illnesses or my daughters illnesses. UGH GRR they have given my son 6 detentions which he did not stay for due to me telling him to make sure he comes straight home. He has to eat directly after school or he will feel ill. and detentions are 3 hours long. he recieved the detentions for not making his gym classes up from being 1. out sick with flu(1 week) 2. being out for his remicade treatments ( that was 1/2 week) then his Dream Trip which was a week. so they literally are punishing him. since he did not stay. they are suspending him. and Gym class is suppose to be a secondary. ... Anywho there are much worse things then this I know. Just fustrating and well i decided to vent for a moment LOL TY anyhow crazy how schools can be. They are taking the word remission and running with it forgetting that he has alt issues beyond crohn's and stress will reactivate a new flairup in crohn;s So I am seriously considering homeschool for this year. but we will see what happens. One plus. We are going to try and go back to disney next fall !!!! atm it's just a possibility. I am learning now that where there is a will there is a way. I read somewhere on the disboard that someone saved to go to disney by useing coupons and rounding $ amounts up on bills and taking the coupon value and change from rounding bills up and saving. That is my new goal. I will also try to sell a few more poems and take 1000. out of income tax. soooo crossing fingers , we will go back. and no will not be as magical as it was while staying at gktw, but having the ability to go spend a day there will be amazing ! wonder if alumni kiddos can have icecream while there??? Hard part will be flying. I am so SCARED of flying. Like anything I am scared of though, I wont let my fear stop me. Never have, Never will so heres Hoping for a possible new trip.

 

[brookerene]

I'm sorry to hear about the school issues. I've been negligent on that end myself. Homeschooling is a great option if you can do it. I hope all goes well and you can go back someday!

 

[that's nice]

Thinking and praying for Hayley and Lauren.