Talia's amazing magical MAW trip in August 2013!!

[taliasmom]

Hi! I was going to wait till I had official dates to start a pre-trip, but I think we're close enough, we got the month! August, 2013. Not the month I would have picked, heat and humidity are no one's friend , but it's our month, and we will make it fantastic anyway!Besides, we live in the desert, how much worse can it be. So, I guess I'll start with Introductions to the family:

My name is Charolott, I'm the mommy, although in my house the rolls are a bit reversed. I get my cuddle time with Talia, but I work full time and handle the business ends of things in the family. Well, I cook and shop too, LOL, some things don't change.





My husband's name is Link (what he goes by, he's not a big fan of his given name). He is Talia's daddy, and primary caretaker. I am so grateful for all he does for her. Talia adores her Daddy like no one else!





This is my eldest, Reno, who just turned 18 in November, and is graduating High School in a few weeks! Reno is my right hand, he helps with EVERYTHING. He helps cook, clean, take care of Talia, unload and load things, etc. I don't know what I am going to do when he goes out into the world and starts his own life, but I'm sure he can't wait to do it! He's a great kid, couldn't have asked for more.





And this is Talia, our Wish Kid!! Talia is 7 years old as of December 29th, and is the reason for all of this. She is good natured, smiles and laughs with us, doesn't cry so much (anymore), but let's us know when something isn't right. Loves music, strangely enough european techno is a favorite, drives me nuts . She is our love, and the center of our world.







Well, that's us! Can you believe this is our best family pic all together? And it's two years old?? That's aweful, we will change that



More about Talia's story later! Thanks for joining our exciting journey!!

 

[Rx774]

Beautiful family. No there's nothing wrong with starting a PTR early. I did one for August... months ago. August, is our month as well. Its our Anniversary as a couple, as well as the birthday of our daughter, our MAW kid.

Where are you trying to go??? As you can tell by my signature, we are doing a cruise in Mid-Aug. So its going to be really hot, we don't care about that. We just don't want to have to deal with a Hurricane. That would ruin this vacation, and i've seen video of other cruises hampered by a storm.

Hope everything works out for your family.

 

[taliasmom]

Beautiful family. No there's nothing wrong with starting a PTR early. I did one for August... months ago. August, is our month as well. Its our Anniversary as a couple, as well as the birthday of our daughter, our MAW kid.

Where are you trying to go??? As you can tell by my signature, we are doing a cruise in Mid-Aug. So its going to be really hot, we don't care about that. We just don't want to have to deal with a Hurricane. That would ruin this vacation, and i've seen video of other cruises hampered by a storm.

Hope everything works out for your family.

We're going to gktw and all the parks that comes with. Everybody is so excited. I understand your concern considering we are going at the peak of rainy season, I'm worried about our trip getting rained out. Not as dangerous as a hurricane, but disappointing in any case. I'm hoping for the best, as I'm sure you are too. I'll have to get on the computer and check out your report, limited on my phone. I've never been on a cruise, sounds like fun though!

 

[angel's momma]

Sorry it took me so long to come "meet" your family. Love the pictures.

You're right, Aug. will be hot & humid, but there's lots of ways to cool off & make it more tolerable. Be sure to stay hydrated. Misting fans are much cheaper if you buy them at home to take with you.

Rain at wdw isn't usually as bad as you'd think, often just a brief afternoon shower that is a much needed relief from the heat. Even when it rains all day, there's still lots to do, just put on a poncho & keep going.

 

[taliasmom]

Sorry so long between posts, my eldest graduated high school and let me tell ya, that is a much more involved event than I was expecting. If you have kids who haven't got there yet, start saving now! Senior year is expensive! But we are pround of Reno, and I'm sure he'll go on to do great things!



On to Talia's story. Talia was born healthy and normal by appearances.



A little small, but that remedied itself quick enough. She hit all her milestones and some of them early.

.

Crawling, eating, drinking, walking at 9 months, talking pretty clearly and a good vocabulary for her age.



She didn't like loud people, and wasn't a fan of water, swings, or ice cream/popsicles, but we weren't too worried.



When Talia was about three we were progressing pretty well with letter recognition, but I noticed she stopped learning new words. Her brother had some speech issues that were corrected through therapy, so her pediatrician wasn't concerned.




One summer afternoon in June 2009, we noticed she would randomly fall, and twitch her leg weird for a second before getting back up. She did this about three times, the last time was on the hard kitchen floor and I went to pick her up and she was not very conscious. I ran her out to the car and by the time I got her in the car seat she was in full convulsions. I had never dealt with seizures, so I called 911 and they talked us through it, once we had her on her left side, it pretty much stopped. We had the ambulance come anyway and take us to the hospital. They did some blood work and gave her a catscan, ruled it a febrile seizure, said it probably won't happen again, and we went home relieved. The next day I was giving her a juicebox, and she wouldn't drink from the straw, just chewed on it, like she forgot how to use the straw, I thought it was strange, but not a huge deal. A week went by before the second seizure came, longer and stronger than the first one. We saw the pediatrician, still not too worried, shouldn't happen again, "Here's some antibiotics her strep level is high, but she'll be ok." Then a couple of days passed and the third super long and strong seizure happened. Something was wrong. We were referred to Children's Hospital Los Angeles where we did ERGs, endless blood work, biopsies, dna tests, spinal tap, MRIs, you name it, for three years, never knowing what was happening.



Over this time we got her seizures pretty well under control, she has less than 1 a week (not counting her now constant tremor) and they are only a few seconds long.



We have lost a lot over that time. Slowly it became obvious that the use of the straw was just the beginning. By early 2010 she couldn't talk anymore, "mommy" was the last word to go. She started falling all the time, hard, like a tree. She suffered a lot of cuts and bruises, but she kept getting up and trying to walk until her little legs just wouldn't let her anymore. Everytime she had a major seizure she seemed to lose a major ability. Soon she couldn't sit up anymore, then loss the intentional use of her hands, some days she can still support her head, but most days not. Her sight is mostly gone, but even that seems to have good days. She doesn't seem to be in pain unless it's digestively related, and that is not too often. Some days she is very alert and interactive, other days she looks lost and kind of "out there".



Oh, she is tube fed now too, can't swallow, and her intestinal movement is slowing. She had an eye exam in early 2012, and that's where the answer was found, Batten's disease. Late infantile neuronal ceroid lipofucinosis. Terminal, but we were already told that whatever she had wasn't treatable, they had run out of those diseases to test for. Only about 500 people in the world have this disease at any one time, it's genetic, and it's horrible. She'll slowly lose function until her little body just gives up, sometime between 8-12 years, and comparing her to other children who have gone before her, probably closer to 8. Hopefully not, I want as much time as we can have with her, as long as she's responsive and happy. Right now she is exactly that, big smiles, laughs, and keeps trying . All you can ask from a 7 year old of any ability.



So our wish for her is the "Give Kids The World" experience, because that's exactly what we want to give her, We know there are tough times ahead, that this is our big family vacation that we won't have a second chance at. She won't get that return trip, but we'll make this one amazing in a huge way. These memories have to count! And thanks to all the lovely families on here, and the advice and memories they share, I can be sure it will be the best it can be! As long as nature cooperates, we'll be just fine. So Excited!!

 

[taliasmom]

Sorry it took me so long to come "meet" your family. Love the pictures.

You're right, Aug. will be hot & humid, but there's lots of ways to cool off & make it more tolerable. Be sure to stay hydrated. Misting fans are much cheaper if you buy them at home to take with you.

Rain at wdw isn't usually as bad as you'd think, often just a brief afternoon shower that is a much needed relief from the heat. Even when it rains all day, there's still lots to do, just put on a poncho & keep going.

Thanks for the tips! we will definately use them! trying to rig up some kind of ice pack system to keep talia cool in her wheelchair. Might end up just doing everything in the evenings. We'll see how it goes!

 

[Sorcerer Jody]

Talia is beautiful! I hope you have the most magical vacation ever!

 

[taliasmom]

Talia is beautiful! I hope you have the most magical vacation ever!

Thanks!! I hope so too!

 

[angel's momma]

Love all the pics Thank you so much for sharing Talia's story. I am so sorry for all that your family has gone through.

Congratulations to Reno!

Have you posted on the DISabilities section? I'm sure they would have suggestions on how to keep Talia cool.

I am so happy that your family is getting this wish

 

[martinezmom3]

Sending love and hugs and the tears from a mommy. We'll be there I August also, I hope every moment is everything she could've ever imagined. You are all in my heart <3 I'd love to hug her and introduce her to my girls if we should cross paths. You all are an inspiration of fully living that life the you were given I hope it's magical. If she likes Disney themed outfits I'd be more than happy to make and ship some free of charge so she can get into it. I love creating our trip outfits for our three daughters. Just pm me

 

[angel's momma]

martinezmom3 - You are absolutely wonderful!

 

[taliasmom]

Love all the pics Thank you so much for sharing Talia's story. I am so sorry for all that your family has gone through.

Congratulations to Reno!

Have you posted on the DISabilities section? I'm sure they would have suggestions on how to keep Talia cool.

I am so happy that your family is getting this wish

I'm really glad we got the wish too! Thanks for the idea! Don't know how I missed that one, I will definately ask there. hugs to you and yours!

 

[taliasmom]

Sending love and hugs and the tears from a mommy. We'll be there I August also, I hope every moment is everything she could've ever imagined. You are all in my heart <3 I'd love to hug her and introduce her to my girls if we should cross paths. You all are an inspiration of fully living that life the you were given I hope it's magical. If she likes Disney themed outfits I'd be more than happy to make and ship some free of charge so she can get into it. I love creating our trip outfits for our three daughters. Just pm me

Wow, you are an amazing person and I really hope our paths cross. Thank you so much, and we will be sure to live it up on this vacation!!

 

[taliasmom]

Things are getting so close, so fast! I've ordered just about everything we'll need for the trip, but as happens with online shopping, not all has panned out. Swim diaper is too big (company is exchanging), and umbrella came from overseas in a sheet of bubble wrap in a poly envelope rather than a box, of course it's broken, and return shipping is more than it's worth. Oh well, off to walmart for that. Otherwise just getting more and more exciting over here! Time to start writing the list of what gets packed and how. I think we're gonna sneak some beach time somewhere, gotta see the Atlantic, may not get another shot! I hope that week doesn't go as fast as I think it will. What am I going to focus on when it's over? My mind is so one tracked!

 

[4pmama]

Things are getting so close, so fast! I've ordered just about everything we'll need for the trip, but as happens with online shopping, not all has panned out. Swim diaper is too big (company is exchanging), and umbrella came from overseas in a sheet of bubble wrap in a poly envelope rather than a box, of course it's broken, and return shipping is more than it's worth. Oh well, off to walmart for that. Otherwise just getting more and more exciting over here! Time to start writing the list of what gets packed and how. I think we're gonna sneak some beach time somewhere, gotta see the Atlantic, may not get another shot! I hope that week doesn't go as fast as I think it will. What am I going to focus on when it's over? My mind is so one tracked!

Oh my, so exciting! I can't wait to see more plans and of course read your amazing magical trip report when you return!

We're four months out and Walmart is so in may plans for day two. Haha! We also plan to see the beach-we're from the PNW and have never experienced a warm ocean!! We will prob skip Sea World.

 

[4pmama]

Also, Talia is gorgeous and your story...it's amazing. Big hug.

 

[taliasmom]

Just heard from MAW, Talia (and us) get a limo to the airport! Then a nonstop Delta flight to Orlando, arriving at 5:56 (late, but good enough), and we dont leave for home on the last day till after 6 , extra playtime! OK, its real now.

 

[4pmama]

Just heard from MAW, Talia (and us) get a limo to the airport! Then a nonstop Delta flight to Orlando, arriving at 5:56 (late, but good enough), and we dont leave for home on the last day till after 6 , extra playtime! OK, its real now.

Woohoo!

 

[taliasmom]

Got a brochure from Gktw yesterday! Showed Talia, she seemed to like it. working on shirts for all of us every night, can't wait to be ready!

 

[4pmama]

Awesome! It's happening!