Off to see the "Real Tree" - April 19th - April 26th! Ali's Wish Trip PTR!

[TinkerbelleMom]

Kelly...this is for youSounds like you need it today. Not that you'll need it, because this is going to be the greatest trip for your family ever, but we do have a great children's hospital, as well as a Nemours children's specialty clinic in Orlando...my friends here in Daytona drive over because it's so great. Besides, you've got Disney Magic working for you.

 

[pnutallergymom]

Hi Kelly,

I wish I could give you a hug!! So instead, here is a virtual one....

If it helps at all, I feel exactly the same way. I always get in such a funk after inpatient stays....I just get sooooo sick of dealing with it all the time. I just get sick of talking about it all the time.....and I think people get sick of hearing about it too...afterall, its ALWAYS something.

I haven't been able to sleep much either the past week....which is making for a very cranky mommy!!!

Hang in there!! We're all in this together, however hellish it gets. (((((HUGS)))))

 

[jenb1023]

to you!

 

[pacrosby]

More

We're such a lovey dovey crowd aren't we?

 

[yinyanggirls]

Are you for real?! You don't have to answer that - I teach regular ed and my husband teaches spec ed, so I know you're for real, but it never makes me less sad to read of instances like this. I'm so hopeful to run into each other at GKTW - I'd love to meet you and your girls.

I hope we get to meet up also! In fact, I'm counting on it! We plan to be at the Cmas party and probably the Pirate one too, if nothing else crosses over.

We had an excellent school district in Texas. Let us choose things, told us they'd get anything she needed, if they didn't already have it, readily agreed with me that she could benefit from some socialization with the regular ed kids. It was a dream. We woke up when we move to AZ. I don't mean to generalize, but everyone I talk to (professionals and parents alike) say the same thing...it's AZ. I made the mistake of "warning" them that Phoebe gags easily - those texture issues we all know too well. She corrects the problem on her own about 95% of the time. The other 5% I do a quick sweep and she's fine. She has NEVER choked. Choke means, airway blocked, no breathing...she gags, not chokes. They flew off the handle over the whole thing, only gave her pudding and yogurt at school, refused the cafeteria. It was ridiculous. I hired a feeding specialist, OT, to evaluate her and write up a report. I asked her to be honest and if there was a danger to let me know, and suggest ways to fix it. She met her in several different environments and she was the same. No worse in a crowded noisy place. They completely ignored her report, rejected her being part of the meetings, just ridiculous. They did all kinds of things like this. The PT told me Phoebe wasn't ready to walk and if I let her I would cripple her. I brought the scrip I had from the Ortho in TX, asked a new ortho in AZ who agreed, and two different PTs in TX all agreed she is ready to learn to walk. But here they say nope, we're smarter than all of them so screw you. <<<<<<BREATHE>>>>> Sorry to rant and rave on your PTR!!! We literally did move just to get out of that district. And the 1 1/2 hr drive each way is totally worth it!

Glad to hear you found a new GAD event you can get into. We missed ours last week because of Phoebe's cold but I think I found a new one too.

Thanks! I took your advice and signed me, my husband, and Maya up for a GAD/GAD on Saturday. We're going to make Build-A-Bears for children who are taken into DSS custody. It should be fun, and for a cause that's near and dear to our hearts.


So that's where I've been. Hating the meds. Hating the g-tube. Hating the leg braces. Hating that I have to carry her from dinner time on because she can no longer walk on her own. Hating that Maya doesn't understand any of this and instead sees Ali as the favored child. But, it'll be all good. Until the next appointment, at least.

We all get it! It's small consolation but it's true. The other night Phoebe kept waking up coughing and we just moved her to our bed to make it easier to get her back to sleep. Tim asked me if it's wrong of us to let Phoebe sleep with us but not Tessa. I reminded him that we always invite her under the covers in the AM (mainly to try and sneek in a few more Zs ) and she rarely wants to. I don't think she minds it too much. It's probably harder on your girls because they are close in age. It's all part of growing up. Maya will have good memories, bad memories, and regrets of her own just like every kid. You guys are doing a great job in every way that you can!

 

[cajunfan]

Awww Kelly...here is a hug for you!

I can only imagine what you have to deal with on a daily basis. Just know that you and your family are in our thoughts and prayers!

And I hope a little "Stitch" humor sneaks into your life today!

Lynn

 

[Mtopher4]

Trying to catch up here...

Thinking of you

 

[Wee Annie]

Kelly,

as Melissa said, unfortunately we all get it. I'm so sorry about everything you have to deal with, and that goes not only for you and Ali, but Maya too. It's so hard on the siblings (Elke's illness has actually triggered some severe psychological issues in my 9 year old that, quite frankly, scare me more than Elke's leukemia. Seriously.) Thanks to you though, I'm learning about mitochondrial diseases -- so you're educating at least one person here, who hopefully can educate someone else, etc. I think that most of these life-threatening childhood diseases are shamefully, shamefully ignored in the areas of funding and medical research. Children can't speak for themselves, and parents are often too overburdened with medical care for their child to form forceful and effective advocacy groups. At least that's my experience in the area of childhood cancer. It gets a pathetic amount of funding from everywhere (don't even ask what percentage of, say, the American Cancer Society's fundraising or the Leukemia and Lymphoma Society's fundraising goes to children with cancer -- almost nothing. Yet they use those cute bald heads shamelessly for fundraising purposes...). And the last chemotherapy drug that was approved for pediatric cancer was decades ago.

Unfortunately, it's just not profitable enough for the drug companies to research and market new drugs for any of our kids with these specialized pediatric illnesses -- there are just not enough of them. And I'm happy more kids don't have what our wish kids are suffering from -- very happy -- but it just makes treatment that much more difficult. And yes, mito diseases certainly don't seem to be at the forefront of people's lists of causes. But, as you educate people one person at a time (like me), perhaps something good for Ali and other children like her can come out of it. One can hope.

So yes, we get it. Not that that will make you feel any better. But always feel free to vent here.

 

[kellyw8863]

Thanks, ladies. I know you all understand, as unfortunate a "club" it is. Right on schedule, the fog has lifted and things are looking brighter. It's all good.

Kelly...this is for youSounds like you need it today. Not that you'll need it, because this is going to be the greatest trip for your family ever, but we do have a great children's hospital, as well as a Nemours children's specialty clinic in Orlando...my friends here in Daytona drive over because it's so great. Besides, you've got Disney Magic working for you.

That's good to know. Our main problem will be dehydration. We have a hard time keeping her hydrated on an average day. But, it's good to know that there's a good children's hospital and clinic nearby. Do you know (odd question) if the specialty clinic can run IVs?

Hi Kelly,

I wish I could give you a hug!! So instead, here is a virtual one....

If it helps at all, I feel exactly the same way. I always get in such a funk after inpatient stays....I just get sooooo sick of dealing with it all the time. I just get sick of talking about it all the time.....and I think people get sick of hearing about it too...afterall, its ALWAYS something.

I haven't been able to sleep much either the past week....which is making for a very cranky mommy!!!

Hang in there!! We're all in this together, however hellish it gets. (((((HUGS)))))

That's the thing - like you said, it's always something. There are days I just want to forget it all - skip the meds, skip the pump, skip it all and just live life. But that's not our reality. Most days, I do a good job of not really thinking about it, but then other days, it's impossible not to not think about it.

to you!

More

We're such a lovey dovey crowd aren't we?

Thanks, ladies. We are a lovey dovey crowd!

I hope we get to meet up also! In fact, I'm counting on it! We plan to be at the Cmas party and probably the Pirate one too, if nothing else crosses over.

We had an excellent school district in Texas. Let us choose things, told us they'd get anything she needed, if they didn't already have it, readily agreed with me that she could benefit from some socialization with the regular ed kids. It was a dream. We woke up when we move to AZ. I don't mean to generalize, but everyone I talk to (professionals and parents alike) say the same thing...it's AZ. I made the mistake of "warning" them that Phoebe gags easily - those texture issues we all know too well. She corrects the problem on her own about 95% of the time. The other 5% I do a quick sweep and she's fine. She has NEVER choked. Choke means, airway blocked, no breathing...she gags, not chokes. They flew off the handle over the whole thing, only gave her pudding and yogurt at school, refused the cafeteria. It was ridiculous. I hired a feeding specialist, OT, to evaluate her and write up a report. I asked her to be honest and if there was a danger to let me know, and suggest ways to fix it. She met her in several different environments and she was the same. No worse in a crowded noisy place. They completely ignored her report, rejected her being part of the meetings, just ridiculous. They did all kinds of things like this. The PT told me Phoebe wasn't ready to walk and if I let her I would cripple her. I brought the scrip I had from the Ortho in TX, asked a new ortho in AZ who agreed, and two different PTs in TX all agreed she is ready to learn to walk. But here they say nope, we're smarter than all of them so screw you. <<<<<<BREATHE>>>>> Sorry to rant and rave on your PTR!!! We literally did move just to get out of that district. And the 1 1/2 hr drive each way is totally worth it!

Glad to hear you found a new GAD event you can get into. We missed ours last week because of Phoebe's cold but I think I found a new one too.



We all get it! It's small consolation but it's true. The other night Phoebe kept waking up coughing and we just moved her to our bed to make it easier to get her back to sleep. Tim asked me if it's wrong of us to let Phoebe sleep with us but not Tessa. I reminded him that we always invite her under the covers in the AM (mainly to try and sneek in a few more Zs ) and she rarely wants to. I don't think she minds it too much. It's probably harder on your girls because they are close in age. It's all part of growing up. Maya will have good memories, bad memories, and regrets of her own just like every kid. You guys are doing a great job in every way that you can!

Rant and rave away! I can't believe that! It drives me crazy that there are school districts that treat their students like that. I mean really, letting Phoebe walk would cripple her?! How insulting to you and how degrading to Phoebe. I'm glad you're in a better district now, and I hope Phoebe is feeling better.

Trying to catch up here...

Thinking of you

Thank you!

Kelly,

as Melissa said, unfortunately we all get it. I'm so sorry about everything you have to deal with, and that goes not only for you and Ali, but Maya too. It's so hard on the siblings (Elke's illness has actually triggered some severe psychological issues in my 9 year old that, quite frankly, scare me more than Elke's leukemia. Seriously.) Thanks to you though, I'm learning about mitochondrial diseases -- so you're educating at least one person here, who hopefully can educate someone else, etc. I think that most of these life-threatening childhood diseases are shamefully, shamefully ignored in the areas of funding and medical research. Children can't speak for themselves, and parents are often too overburdened with medical care for their child to form forceful and effective advocacy groups. At least that's my experience in the area of childhood cancer. It gets a pathetic amount of funding from everywhere (don't even ask what percentage of, say, the American Cancer Society's fundraising or the Leukemia and Lymphoma Society's fundraising goes to children with cancer -- almost nothing. Yet they use those cute bald heads shamelessly for fundraising purposes...). And the last chemotherapy drug that was approved for pediatric cancer was decades ago.

Unfortunately, it's just not profitable enough for the drug companies to research and market new drugs for any of our kids with these specialized pediatric illnesses -- there are just not enough of them. And I'm happy more kids don't have what our wish kids are suffering from -- very happy -- but it just makes treatment that much more difficult. And yes, mito diseases certainly don't seem to be at the forefront of people's lists of causes. But, as you educate people one person at a time (like me), perhaps something good for Ali and other children like her can come out of it. One can hope.

So yes, we get it. Not that that will make you feel any better. But always feel free to vent here.

I'm sorry your oldest is having such a difficult time. It's just not fair for any of the little ones. It's hard enough for adults to understand. You know, I never thought of how images of children with cancer are used to raise funds for adults. That's just not right.

Thank you for learning about mito. You know, the thing that's interesting is that the most current research indicates that 1 in 200 people carry a gene that has the potential to cause mitochondrial disease, and every 15 minutes, a child is born who will develop a mitochondrial disease by the age of 10. Add to that an 80% mortality rate, and it's really quite striking. Yet when you compare funding to a football field, mitochondrial disease research is awarded 1/10 of an INCH. And the real kicker is that the entire mitochondrial genome has been mapped. We are THAT close to a cure, but there is too little funding for it to be accessible. Estimates say that we are 10 - 20 years away from effective treatments, which could be accomplished in 1 - 2 years with adequate financial support.

Okay, I'll get off my mito soapbox now.

Tomorrow is our GAD/GAD! We're all pretty excited. We're going to Pooches and Paint to stuff animals for kids in DSS custody. Then, we're having good friends over for dinner, so it should be a good time! Have a lovely weekend, everyone, and thanks again for all the support. I swear I'm not generally a Debbie Downer type person!

 

[TinkerbelleMom]

That's good to know. Our main problem will be dehydration. We have a hard time keeping her hydrated on an average day. But, it's good to know that there's a good children's hospital and clinic nearby. Do you know (odd question) if the specialty clinic can run IVs?

I don't know, but I would imagine they could as they've got every ped specialist known to man. Nemours is the name, you might have the ped on your end research, just in case.

 

[cantwaittoseemickey]

Oh I LOVE her dress. What a great idea to put a button whole there so she can where a dress with her backpack. Your girls are so precious. Love the Big Give goodies!

Stuffing the Build A Bears sounds really fun. What a great project to do.

This past week has been one of those weeks for us too. I just want to take it all away for him. I want to take away the pain, the wobblies, the siezures the choking... all of it. Sometimes I feel so helpless for him. Here is some very sincere hugs for you all.

 

[kellyw8863]

I don't know, but I would imagine they could as they've got every ped specialist known to man. Nemours is the name, you might have the ped on your end research, just in case.

Thanks! I googled it yesterday, and it looks like it should serve any short term needs that we may have.

Oh I LOVE her dress. What a great idea to put a button whole there so she can where a dress with her backpack. Your girls are so precious. Love the Big Give goodies!

Stuffing the Build A Bears sounds really fun. What a great project to do.

This past week has been one of those weeks for us too. I just want to take it all away for him. I want to take away the pain, the wobblies, the siezures the choking... all of it. Sometimes I feel so helpless for him. Here is some very sincere hugs for you all.

It's the neatest thing ever. I know I could just cut a hole myself, and honestly, I've tried that, but it just continues to rip and to a four year old, I am simply defacing her clothing. And right back at you with the hugs. None of us are traveling an easy road.

And with that said, I don't want anyone to think that I was playing the "whose pain is worse" card with my last post, because I don't doubt that each of our pain is pretty flippin' bad depending on the day. I was just venting about my own personal frustrations regarding mitochondrial disease and the lack of inadequate funding when there's a cure literally right around the corner.

With that said, on to happier subjects! Yesterday afternoon was our GAD/GAD, which was a blast! I'm hopeful that it is something that we will continue to do, as it was a great way to spend the afternoon together and a wonderful lesson for our girls that it's nice to do something for someone else.

We went to the Pooch Barkery in Ayer, MA to stuff animals for children being taken into DCFS custody.

It was freezing in there, which is why the girls still have their coats on. Maya got right to work stuffing a pink unicorn, and Ali, even though she wasn't an official participant, stuffed a little lambie.

It was a great day for an equally great cause!

 

[kellyw8863]

What could possibly make the day even better than it already was? Why the Big Give, of course! We arrived home to a package from Danica (DisneyCP2002) - thank you so much!

Here are the girls waiting for Daddy so he could see them open the package.

Maya carefully removing the contents of the box. It's hard to tell from the picture, but she was "ooohing" as she removed the gift bags.

Inside their bags, the girls found individualized autograph books, pens, and photo albums.

They also found adorable Disney Princess outfits.

The girls were just so pleased.

Thank you so much, Danica!

 

[TinkerbelleMom]

Looke like you had fun on gyou GAD/GAD...is that a Little Petshop pet with Ali? Rebecca is crazy about those, and we can't leave home without 1 or 2 or 10 if she can get away with it! I think GAD/GAD is doing better than Disney may have planned for, local news last night said it might end early because they've already close to meeting their goal of 1 milllion volunteers. I hope not, it's a great program.

 

[Wee Annie]

And with that said, I don't want anyone to think that I was playing the "whose pain is worse" card with my last post, because I don't doubt that each of our pain is pretty flippin' bad depending on the day. I was just venting about my own personal frustrations regarding mitochondrial disease and the lack of inadequate funding when there's a cure literally right around the corner.

Kelly, I don't think anyone took your remarks in that way. I for one, am delighted to learn more about mitochondrial diseases. I had no clue before.

Your GAD/GAD day sounded fun -- thanks for sharing!

 

[kayrosek]

I'm so glad you guys had such a good day. The GAD/GAD looks like alot of fun and for more big give stuff. How fun to come home to another package. I'm another one who is glad to learn about Mito diseases.

 

[xanphylus]

Looks like you guys had fun at your GAD/GAD- we did too! All we did was drop off shoes at a shoe drive, but we did collect lots to be donated to kids in Haiti. And we got tickets too! Your project looks really neat though- and lots more fun! My daughter def would have chosen that over "stinky shoes" as she put it.
Glad you got another Big Give too! Love the shirts!

 

[jenb1023]

Thanks! I took your advice and signed me, my husband, and Maya up for a GAD/GAD on Saturday. We're going to make Build-A-Bears for children who are taken into DSS custody. It should be fun, and for a cause that's near and dear to our hearts.

So glad you got signed up! Looks like it was a fun and rewarding day! You should get your vouchers e-mailed soon.

Love the new big give package but even better I love seeing those smiles!

 

[cydswipe]

Ok, I have to admit I've been following your PTR closely. I signed up for my first Big Give... and it was for YOUR family.

I'm a nervous wreck, as I shipped your package today. I really hope the outfits work out for the girls. The package was shipped priority mail from Iowa. I am very excited for your family.

The girls are darling..... thanks for sharing with all of us!
Monica (cydswipe)

 

[DisneyCP2002]

I am so glad the girls enjoyed the pixie dust. I had so much fun putting the box and bags together.