Brigitte's PTR...Wish Trip. MAW/AKL April 24th-May 5th

[Wee Annie]

Shannon,

I, personally, feel so sad that anyone has tried to make you feel bad about the choices you have made re Brigitte's wish. And I certainly hope you didn't feel like I contributed to it by answering another poster's question about the pros and cons of GKTW. In fact, I meant to post a clarifying reply later on in the MAW thread (I think someone equated my statement re staying at a place where people "get it" to mean that I thought we would all sit around spending our vacations discussing our sick kids. Yikes!). But life has been tricky for us recently and I have not been able to post often (which was probably for the best, all things considering). So please consider this an apology if I in any way made you feel bad about your choice, and a voice of support for the decisions you made. I think you will have a fabulous vacation, and I'm not sure how the fact that you may, or may not, have the resources to go back to WDW should mean that you HAVE to stay at GKTW for Brigitte's wish trip (did someone actually say that??????????)

Btw, SO glad that you all were able to escape the Big House and get some time away!

 

[pnutallergymom]

Shannon, I was tearing up reading your post and Im so sorry you were made to feel like you have watch what you say. I for one completley respect and understand your decision and hope you continue to voice your opinion for other families.

It's been a bit difficult for me to digest and has put a little bit of a damper on the planning for me. Thanks for being supportive.

I'm sorry any drama came out of this Shannon. I completely understand what you are saying. I also completely respect your decision to stay on-site. Like I said, if we had been given a choice I would have had a hard time making it. I don't think anyone was trying to make you feel bad, or anyone else for that matter, but I also don't know what was said privately. And you're right, what is typed is so easy to misread the true message of what someone means. I hope that after today the dust will settle and we all move on with smiles on our faces.

Thank you Melissa . Nobody has made me feel bad about my choice up until yesterday....and I did feel really badly about it until this morning. BUT, the more I think about it, I have nothing to feel badly about. This is Brigitte's wish. I won't go into huge detail on what was said privately, but lets just say as far as I am concerned, it was completely out of line and I feel I am owed an apology. The person who said it tried to gloss it over by saying that because I have "thick skin" that they thought I could handle it.


I have SOOOOO much more to say about this, but am going to let it all go because this TR was supposed to be fun and nobody needs to hear all the drama....that is what high school was for. Its not fun anymore. Having just come home from another hospital admission, which included a septic child and a 2 day ICU stay before moving to the floor....I am emotionally spent. I am so thankful to all of you who are supporting me and especially Brigitte . I am also so sorry that some of you felt the need to apologize to me(WeeAnnie, I tried to multi-quote you, but I told you guys I wasn't good at this stuff ). It was totally unnecessary. None of you made me feel bad about the decision we made . Did I feel a little different sometimes? Sure. Did I question our decision a few times? Absolutely....but each time we came back to our original decision. As someone else said before, this place would be so boring if we all had the same thing to say and agreed on anything. My concern now lies with making sure that the people from GKTW and MAW who are supposedly monitoring this site do not take their unhappiness with me out on my daughter. She has been to hell and back quite a few times and will more likely than not continue to do so...she deserves for her wish to be just as magical as any other wish child's.

MOVING ON........

We were matched up with our photographer for The Littlest Heroes Project yesterday. She called me in the morning, and I am beyond excited!!! We are so lucky to have been matched with Paris Carter of Paris Carter Photograhy in FL. She is going to meet up with us and do our shoot on the grounds of the Boardwalk/Swan/Dolphin....I am psyched. She was so sweet to talk to and I just know that we are going to get some fabulous photos!!

 

[pnutallergymom]

Brigge after the line is out...finally swimming.

[/I

MG]

 

[DisMomAmy]

Thanks for sharing the pictures! Looks like you guys had a good vacation!

 

[pnutallergymom]

Thanks for sharing the pictures! Looks like you guys had a good vacation!

Thanks Amy!!!

Sorry the pictures are so big....thats my next project after perfecting how to multi-quote!!!

Brigitte has been so happy to finally be able to take a bath!! She is like a little fish!!!

We had a very nice few days away. Only got one day of skiing in, the weather was just to bad!! We'll go again soon!!

The last picture was from the Take the Ice event we went to with Starlight Foundation. We all got to skate on the ice at the Garden with the Bruins!! Got some lunch and they had a bunch of activities for the kids afterwards. It was such a nice day. We got to see Christine (dmbfan) and her family as well. Got to hear all about their return trip to volunteer at GKTW. They are such a nice family!!!

 

[pacrosby]

Where'd you go skiing? Dh took the two older kids last weekend (before they got sick) while I stayed home with the two who were already sick. We plan on doing alot of Spring skiing.................I'm thinking they'll be plenty of snow up north at least through April (I used to ski at Killington until late May!!!!...................ahhhhhhhhhh, the old days)

Great px. Can you actually push the w/c on the ice??? How fun for her

 

[yinyanggirls]

Cute pics! I'm so glad Brigitte gets to swim! I always loved staying in the water until my fingers were pruny.

I haven't corresponded with the Littlest Heroes yet. What was the process to get matched with them? Did you get to choose anything other than general location? I'm so tempted to fit that in on our trip as well.

 

[pnutallergymom]

Where'd you go skiing? Dh took the two older kids last weekend (before they got sick) while I stayed home with the two who were already sick. We plan on doing alot of Spring skiing.................I'm thinking they'll be plenty of snow up north at least through April (I used to ski at Killington until late May!!!!...................ahhhhhhhhhh, the old days)

Great px. Can you actually push the w/c on the ice??? How fun for her

Pamela,

We went to Gunstock!! It was a great day....weather wasn't great...but the kids enjoyed it!! I promised the kids we would "skip" school and go again another day!!

Yes, we could bring the w/c on the ice. She loved it....just kept saying "weeeeeeee" and "more"!! It was awesome!!

Cute pics! I'm so glad Brigitte gets to swim! I always loved staying in the water until my fingers were pruny.

I haven't corresponded with the Littlest Heroes yet. What was the process to get matched with them? Did you get to choose anything other than general location? I'm so tempted to fit that in on our trip as well.

Melissa, she LOVED swimming....I can't keep her out of the tub now!! She's developed a bad habit of dumping cups of water on the floor though!! I try to get mad...but really, I am just so happy to see her having fun!!

Littlest Heroes has been a little difficult to communicate with. Its been all through email. I submitted everything a while ago. Heard from them right away...submitted our choice of photographers....and then never heard a thing. I sent a few emails and she finally got back to me saying that she was having a hard time connecting with our choice of photographer. Then about two weeks later, I heard from the photographer directly. She is great. I think that it is just one person running Littlest Heroes and I'm sure she is overwhelmed!! Its all good now, I would just get on it if you want to do it for the trip. They give you a list of all the eligible photographers, you pick your top 3...and then set the location up with whomever you choose. We are going to do ours in the Swan/Dolphin/Boardwalk area.

Good Luck!!

 

[kellyw8863]

Great pictures! Now I'm really wishing that we had gotten our act together to RSVP to that event in time. Your kids all look so much alike and are adorable.

 

[jenb1023]

Love the trip pics!

 

[foxyroxy40]

I just wanted to say I just found your Ptr and I am just amazed at all you and the other wish parent's have gone thru with your children how you do it just amazes me and I thought my son had a lot of isssues but reading your stories makes me realize how wrong I was his problems are so minor compared to everyone's on here I've been reading. I dont know how he would manage all the dr visit's and hospital stay's now at his age he's fifteen and a biggger baby then all of your children he throws a fit every time he has to have blood work done which is about every six month's and urinalis done to we drive about three hours away to see his nephrologist but again only every six month's he hates that he cant drink all the pop or gatorade his friends drink and cant eat to much protein,and he takes one pill a day for high blood pressure. so here's to all of you mom's out their who have special needs childrenEvery child should have to their wish the way they want it,not how someone else wants it. know that you all are in my prayers God bless you all

 

[yinyanggirls]

Littlest Heroes has been a little difficult to communicate with. Its been all through email. I submitted everything a while ago. Heard from them right away...submitted our choice of photographers....and then never heard a thing. I sent a few emails and she finally got back to me saying that she was having a hard time connecting with our choice of photographer. Then about two weeks later, I heard from the photographer directly. She is great. I think that it is just one person running Littlest Heroes and I'm sure she is overwhelmed!! Its all good now, I would just get on it if you want to do it for the trip. They give you a list of all the eligible photographers, you pick your top 3...and then set the location up with whomever you choose. We are going to do ours in the Swan/Dolphin/Boardwalk area.

Good Luck!!

Thanks for the details. I think I will contact them and see if we can do it in time. I'm glad they let you have some say in who does it. And I'm sure the person/people running it do their best. Bless their hearts for organizing such a great idea! I think once I get my photo business up and running I will offer to be a photog for them...

 

[cantwaittoseemickey]

That happened with us too. We contacted them and heard back. I submitted my photographer choices and never heard back from them this was at least 6 mos ago. I know they were going through some problems with thier computer system or something at the time. I just have not had a chance to resubmit. They probably have it all fixed now. It is such a great thing that they do. The pictures I have seen have been amazing.

 

[pnutallergymom]

I just wanted to say I just found your Ptr and I am just amazed at all you and the other wish parent's have gone thru with your children how you do it just amazes me and I thought my son had a lot of isssues but reading your stories makes me realize how wrong I was his problems are so minor compared to everyone's on here I've been reading. I dont know how he would manage all the dr visit's and hospital stay's now at his age he's fifteen and a biggger baby then all of your children he throws a fit every time he has to have blood work done which is about every six month's and urinalis done to we drive about three hours away to see his nephrologist but again only every six month's he hates that he cant drink all the pop or gatorade his friends drink and cant eat to much protein,and he takes one pill a day for high blood pressure. so here's to all of you mom's out their who have special needs childrenEvery child should have to their wish the way they want it,not how someone else wants it. know that you all are in my prayers God bless you all

Hey Foxy! Thanks for joining in!!

I have a son who has severe food allergies too so I can relate to the "not being able to drink/eat issue" too. Sean had been great about his allergies up until this year. We were lucky enough to find out about it while he was young, so it was something that he just grew up with and didn't really notice a big difference. This year he entered into 1st grade so it is the first time where lunches, ice cream days, popcorn days, etc are all kind of "in his face" so to speak. He never used to even ask if he could have something he wasn't able too and never even wanted it. He liked the stuff he was able to have. Now, that a whole new world has opened up to him, he is really taking notice of the differences. It has been a difficult year for him with lots of crying and "why can they have it, but I can't" conversations. So, I think alot of the fits you talk about come with the kids getting older and realizing that they are different.

I am dreading the days as Brigitte gets older and realizes that there is going to be so much that she can't do and how it all plays out. I have a feeling that I am going to have ALOT of tantrums on my hands . She literally has had to "fight" for her life since she was born so she has that fighting nature about her already....plus she's a redhead!!! Feisty isn't the word !!!! We had her IEP review a few weeks back and the teachers tried to nicely say that she is strong-willed and determined. What they really wanted to say is that she is a big ol' BRAT !!! My kids have nicknamed her "bossy Brigitte" or "bratty Brigitte"!!!

Honestly, though, I think with kids like all of ours that have some "issues" or are different from their friends, it is their way of "controlling" something they have no control over at all!! Plus, I don't blame them. Without mincing words, the whole thing just sucks!!!

Anyways, thanks for posting!!!

 

[pnutallergymom]

Great pictures! Now I'm really wishing that we had gotten our act together to RSVP to that event in time. Your kids all look so much alike and are adorable.

Thanks Kelly!! Its funny, people ask me all the time if the boys are twins!! They're 16mo apart. The girls look alot alike too....Brenna's hair used to be as curly as Brigge's!!!

The Take the Ice Event was great. The NH chapter doesn't do as many things as the MA chapter so it was nice that they offered it and got picked in the lottery!! We don't ever win anything!!

Love the trip pics!

Thanks Jen!! We really had a good time...I was so happy to spend some time with the kids since I hadn't seen them in 5 days!! It was a quick admission for us...but it always just seems like forever!!! I was hoping Brigitte could have gotten out there, but the weather was just to bad. Next time!!!!



So, I went ahead and booked the Pirates League for the big kids today . I hope they LOVE it!! I was almost tempted to book a spot for myself !! I love that kind of thing...but it is soooooo $$$$$$. The kids want the outfits to go with it, but I looked at them and I think they will be much to hot in them. I'm hoping to dig something up online. Was looking at some skull and crossbones T-shirts or something like that!! Any ideas??

Is it me, or is it really quiet around here lately?? We need those girls back so we can get some TR's going !!! I sure hope they are having a magical time. Hasn't looked as if the weather has been all to warm, but sometimes that isn't a bad thing!! Ohhhhhh........I just can't wait to go!!!!!

 

[Wee Annie]

I am dreading the days as Brigitte gets older and realizes that there is going to be so much that she can't do and how it all plays out. I have a feeling that I am going to have ALOT of tantrums on my hands . She literally has had to "fight" for her life since she was born so she has that fighting nature about her already....plus she's a redhead!!! Feisty isn't the word !!!! We had her IEP review a few weeks back and the teachers tried to nicely say that she is strong-willed and determined. What they really wanted to say is that she is a big ol' BRAT !!! My kids have nicknamed her "bossy Brigitte" or "bratty Brigitte"!!!

Honestly, though, I think with kids like all of ours that have some "issues" or are different from their friends, it is their way of "controlling" something they have no control over at all!! Plus, I don't blame them. Without mincing words, the whole thing just sucks!!!

Hey! I'm a redhead (although truly a strawberry blonde -- perhaps the blonde hair mellows out the temper?).

So glad you've made me feel better re Elke and her behavior with your description of Brigitte above. Elke is BOSSY, and throws some pretty bad tantrums. The other night I said to my husband that I was half expecting her to start levitating and her head start to spin like a scene from the Exorcist!

But I do recall, right after Elke was diagnosed with leukemia and she was fighting each and every procedure, med, transfusion, etc. like a wild animal, that the oncologist said it was a good sign -- that fighters do well. And they do have so little control. So many things are done to their bodies, many of them painful, and they can't do anything about it. I think sometimes, in the safety of their home, with family, etc, they just need to exert some control over something. Anything.

And yes, it's been quiet here. I've been absent, but will be more active from hereon in.

 

[jenb1023]

So, I went ahead and booked the Pirates League for the big kids today . I hope they LOVE it!! I was almost tempted to book a spot for myself !! I love that kind of thing...but it is soooooo $$$$$$. The kids want the outfits to go with it, but I looked at them and I think they will be much to hot in them. I'm hoping to dig something up online. Was looking at some skull and crossbones T-shirts or something like that!! Any ideas??

My DD wants the three of us to do the Pirates League on our next trip. I would make t-shirts for them if I were you. On the DISsigns thread, people will design something with each child's name on it or there might even be a Pirates League design floating around over there. Then you just print on a t-shirt transfer and iron on to a t-shirt.

 

[kellyw8863]

I am dreading the days as Brigitte gets older and realizes that there is going to be so much that she can't do and how it all plays out. I have a feeling that I am going to have ALOT of tantrums on my hands . She literally has had to "fight" for her life since she was born so she has that fighting nature about her already....plus she's a redhead!!! Feisty isn't the word !!!! We had her IEP review a few weeks back and the teachers tried to nicely say that she is strong-willed and determined. What they really wanted to say is that she is a big ol' BRAT !!! My kids have nicknamed her "bossy Brigitte" or "bratty Brigitte"!!!

Honestly, though, I think with kids like all of ours that have some "issues" or are different from their friends, it is their way of "controlling" something they have no control over at all!! Plus, I don't blame them. Without mincing words, the whole thing just sucks!!!

We're just starting to deal with this now, and it's heartbreaking. It's one thing for us as parents to realize that we have children who are "different," but it's a whole 'nother ball game once they start realizing it themselves. But you're right - our kids are fighters and it's that aspect of their personalities that gets them through. There are many days where I think if Ali knew what it meant to give someone "the finger," her little hand would get quite the workout.

 

[cantwaittoseemickey]

Oh I can't wait to hear how you like the Pirate league. I like the idea of making t-shirts.

We have the "tude" over here too. Ty is more of a "must know what everyone is doing" kind of guy. I think its his way of holding on to all of us. But he comes off as bossy from Sierra's point of view. With school he is more of a sit back and watch what everyone is doing then comes home to tell me the report of what everyone did that day

 

[pnutallergymom]

Hi Everyone,

Yes, we are still here!!! Just busy. I am starting my marathon outpatient clinic appointments. We have 7 in the next 6 weeks. Have I mentioned how much I HATE the hospital?? My stomach turns each time we set foot in the door.

We had an appointment with a new sub-specialty yesterday to discuss Brigitte's neuro status. The recommendation is that we set her up with Boston's LEND Program. It is a service made up of Neurology, Psychiatry, Psychology, Gen. Peds, Developmental Medicine, Social Work, PT, Speech, and OT. She will go in for a 3 days of intensive appointments and NeuroPsych Evals. Then at the end we will meet with all of the team members and go over their findings and recommendations. I guess we will end up with what is usually a 300 page report that will help us address her "deficits".

Next up on Friday is GI. Her weight is down ....but that is no surprise. She is struggling terribly at night with the visceral pain and we wind up shutting the pump off more than it runs!! What can you do??

I probably should get her into the Pediatrician soon too...another sinus infection. We had a good 3month run at the end of October...but she's had one for January, February and March again. Guess I should add ENT to the list again!!

I have pulled out my suitcases and have started to throw a few things in here and there. Got Brenna another bathing suit the other day. Hoping to pick up Crocs for the kids this weekend. I think I am going to make "Vacation" themed Easter Baskets this year!! Crocs, bathing suits, sunglasses, sunscreen, etc....

I am having a blast living vicariously through all the new TR's!! I just can't wait for this vacation to be here!!! We have 3 cheerleading competitions and 2 baseball tournaments coming up. One is in RI, the other in NY...so those will keep us occupied!!! I think we are down to 38 days now....but who's counting??