Princess Alyssa's Christmas Wish/ GKTW/ Dec 10-16

[chrissid7]

Nope im kinda in the middle, I can be in VA Beach in about an hour also!

 

[chrissid7]

HURRAY!!! That seems like a perfect time to go, just before the Cmas break, so not too many crowds. Did you make any ADRs yet? Hopefully that time frame won't be too hard to get what you want.

As far as the plane ride, is AA doing the wish flight for all MAW kids or just certain ones? Not sure how that whole thing works. It might help her to enjoy the ride if she gets a little party at the airport.

No unfortunalty it isnt the wish flight. I wish it was I watched the video and have seen pics nd how awesome would that be... no time to be scared right??

 

[chrissid7]

Part 2 The reason for the trip

Alyssa was diagnosed with Cystic fibrosis just before she turned 2. That was with a fight to get her diagnosed. That’s a long long story so I will skip it but we though we would see improvement once she was diagnosed and to an extent we did but then other things changed.

She always struggled with weight, w tried so hard to help her gain we would have great months and not so great months. She has been in the hospital 14 times for lung issues and we have also don’t months and months at home on IV’s.

When she was 4 we started noticing that Alyssa would “daydream” a lot even in the middle of conversations. It didn’t take long before I realized she was not daydreaming and something wasn’t right. She ended up being diagnosed with Absence seizures and needed medication to help but it never completely stop them (the reason will be later). She was having 100’s a day and it was affecting everything, its like turning off your brain for 10 seconds at a time hundreds of times a day. You miss a lot of little pieces.

She was still having digestive issues that we couldn’t seem to get straight again long story short, by process of elimination I figured out that wheat was the issue. As soon as we started the Gluten free diet we saw amazing!!!!! Changes!! In her and I. I have not had a migraine in almost 3 years (when we started).

When we started the gluten free diet we accidentally went all natural in the process because its easier to eat all natural, you can find more to eat that way. We noticed the seizures went away all togther! So with many test and a 24 EEG that floored our Neurologist (who didn’t believe the seizures were being sparked up terribly when she ate artificial colors or flavors). During the 1st 12 hours of the EEG I had her completely seizure free, I didn’t let her eat anything “yucky” as we call it now. The EEG showed no seizure activity. At the 12 hour mark I took her to the 7-11 and told her to get any of the yucky stuff she wanted, she knew what we had to do and why. We were both nervous but we had to let him see that it is possible. Well lets just say within 30 minutes we were both crying because she couldn’t even finish a sentence and I felt horrible!! She said she was scared because she didn’t feel right, but she couldn’t even cry good because the seizures make her stop crying.

 

[chrissid7]

So now she is much much better with the seizures controlled, but the CF is not giving her any breaks.

She spent most of this summer in the hospital and she ended up getting the “MICKEY” button or G-tube. She also had severe reflux so she had a procedure done to her stomach called a nissen to help with the reflux. She ended up with pneumonia from the surgery and became very very sick while she was in the hospital. She had panic attacks (we had never seen one before) and that is horrible to see your child thinking they re dying right then and you cant console them, ughhh broke my heart. This is why we dicided she could go ahead and make her wish. She has had a terrible year and she deserves it. I was always reluctant because I didn’t understand it and I though they were telling me that she was that sick. Well right now she is at 40% lung capacity and its very hard to accept and I pray and fight to get it higher.

She has only been to school 4 days this year trying to keep her strong and avoid the bugs right now.

This morning she woke @3am and had a low grade temp, sore throat and stuffy nose. Pray to God or whomever you pray to that she doesn’t end up with the H1N1 or any flu for that matter. Her lil lungs just don’t need that right now!

Ok that’s our book but unfortunately there are so many more stories of things that my sweet princess has been put through, as most of the people on the wish trips know.

 

[maroo]

I definitely pray to God - and I will be praying for you guys.

Have you had H1N1 in your area? Or lots of flu like illness going around?

I will pray that this is just a little bug or something. Please keep us posted!

 

[pipersmom]

I understand completely what you're going through...will be thinking about Alyssa and hoping her resp symptoms don't turn into anything else..ugh, that's one of the things I hate the most about CF. Is she DDF508? Just asking because you don't see many kids going through as many issues as Piper and Alyssa seem to be, if you're more comfy, just pm me..

 

[mandy2012]

 

[chrissid7]

I definitely pray to God - and I will be praying for you guys.

Have you had H1N1 in your area? Or lots of flu like illness going around?

I will pray that this is just a little bug or something. Please keep us posted!

Thank you thank you thank!! Prayers worked and its not the flu. We have had a lot of h1n1 in our area and I was freaking out!

 

[chrissid7]

I understand completely what you're going through...will be thinking about Alyssa and hoping her resp symptoms don't turn into anything else..ugh, that's one of the things I hate the most about CF. Is she DDF508? Just asking because you don't see many kids going through as many issues as Piper and Alyssa seem to be, if you're more comfy, just pm me..

Actually yes she id DDF508 which sucks because of the vast symptoms but also good because most of the genetic research is being done for DDF508 so I think and pray that our girls will have the 1st shot at the cure!!

We will see that ya know!! I try my best to keep that in my head because I think a positive outlook helps the kids too. We will see the cure!!

omg I am so excited for your trip too. I really hope ya hear from them this week!

 

[yinyanggirls]

Alyssa sounds like such a trooper. I am grateful that most of my girls' hard stuff (surgeries and procedures) were done when they were little and I didn't have to try and explain. I'm so glad you guys figured out how to get rid of the seizures. We haven't done gluten free, but I did cut out preservatives and dairy and it didn't seem to help any of Phoebe's issues that the doc said it would. We have moved a few times and also "fired" some of her docs, and not one single neurologist has my confidence. We used to think she had absence seizures, but then they changed and no one can catch them on EEGs and the one doc that saw a video taped episode called it a "spell". When I asked what a spell was he said they don't really know. HUH? I don't think neuros know anything. I wish I could find one to prove me wrong! So again, kudos on finding your own answers!

 

[chrissid7]

Alyssa sounds like such a trooper. I am grateful that most of my girls' hard stuff (surgeries and procedures) were done when they were little and I didn't have to try and explain. I'm so glad you guys figured out how to get rid of the seizures. We haven't done gluten free, but I did cut out preservatives and dairy and it didn't seem to help any of Phoebe's issues that the doc said it would. We have moved a few times and also "fired" some of her docs, and not one single neurologist has my confidence. We used to think she had absence seizures, but then they changed and no one can catch them on EEGs and the one doc that saw a video taped episode called it a "spell". When I asked what a spell was he said they don't really know. HUH? I don't think neuros know anything. I wish I could find one to prove me wrong! So again, kudos on finding your own answers!

Thanks its certainly never easy to get through to the docs sometimes. I worry that Alyssa's will change and I wont be able to help her. I have to admit it was a relief of sorts to actually be able to help fix something. With the lung issues I always feel so overwhelmed and no matter what I do I cant stop the progression. I just want her lungs to be healthy so badly it makes me want to scream sometimes.

Funny a "speel" must be a very technical term taught to Neurologists early in their education lol. Ive heard it several times as well. As if the Fairy Godmother has given it to them, spell pffftttt!

By the way I think cutting the preservatives out as much as possible is a GREAT thing even in healthy children. So Kudo's to you for that. That is a hard thing to cut out.

Hope you find your answers!

 

[chrissid7]

I took Alyssa to Disney on Ice tonight!!! That will really get you in the mood! It was so nice! When Mickey and Minnie came out I got goosebumps! We saw Disney on ice last year too and I think we will now make that a tradition because we just love it!

 

[Uuaww]

read your pretrip report, good luck on the final months of planning!

 

[kdzbear]

I took Alyssa to Disney on Ice tonight!!! That will really get you in the mood! It was so nice! When Mickey and Minnie came out I got goosebumps! We saw Disney on ice last year too and I think we will now make that a tradition because we just love it!

I am glad she had so much fun at the show. It only comes here once every three or four years. Did it get her more excited for her trip?

 

[chrissid7]

oh my gosh yes! There was a part in it where they had all of the countries from its a small world and they played the song. They were all dressed in the blue and white and then they had 1 of the boats all lit up omg it was like being there soooo aweome. Im one of the people who loved that ride (we had to ride it twice in case I missed something lol).

 

[yinyanggirls]

Funny a "speel" must be a very technical term taught to Neurologists early in their education lol. Ive heard it several times as well. As if the Fairy Godmother has given it to them, spell pffftttt!

That's what I say! Funny term used to describe something they don't understand. I think I'll actually be looking for a new neuro next week because she is starting to do weird things again. It's been a couple of years since she did anything like this on a regular basis, but it's starting again. She gets really rigid and fixed in her position and then her head jerks down, always at the same angle. These are different than the last ones, but remind me of them. I wish she could tell me what she's experiencing. Our kiddos are so brave, and they don't even know it.

 

[chrissid7]

That's what I say! Funny term used to describe something they don't understand. I think I'll actually be looking for a new neuro next week because she is starting to do weird things again. It's been a couple of years since she did anything like this on a regular basis, but it's starting again. She gets really rigid and fixed in her position and then her head jerks down, always at the same angle. These are different than the last ones, but remind me of them. I wish she could tell me what she's experiencing. Our kiddos are so brave, and they don't even know it.

They really are amazing. Im so sorry she is starting to have stuff happen again. I know how stressful that is. Its so hard when you just want to help and theres not much you can do. When Alyssa gets really tired she has more seizures too. We had a super busy weekend with a house full of kids. It was great for her lungs because she laughed and ran, but today the seizures got intense. She will sometimes keep walking (thats kinda new) during one and today she walked into the coffee table, it didnt hurt her but I could see her eyes and I knew she was having one. I tried to call her name but she just kept walking. I caught her just as she hit it. She started to cry, but just because it made her so nervous. She can tell now and she hates the way she feels. She went to sleep early tonight. I just wish as I know you do too that the magic pill would arrive! Prayers that hers get under control quickly as well.

 

[chrissid7]

oh my gosh oh my gosh!!! I have awesome news that Alyssa and I are soooo excited about! Well a couple of things and 1 im not 100% sure I can share yet but I will say that it is only 45 more days till we leave and that her send off party is on December 1st.

 

[maroo]

Wow! Sounds very interesting!!!

Feel free to tell is everything - we won't tell a soul!

Hehe. Just kiddin! But I can't wait to hear all about it.

 

[HeatherSue]

I don't think I ever subscribed to your PTR!! But, I've been reading it!