Wish Trip for Miss Haylee

[Haybuggsmom]

Thanks for sharing your story, so sorry for your loss and so happy at the joy you have with having Haylee I am always amazed by the strength of everyone here on disboards and so honored to be able to know a bit about everyone that is willing to share My two kiddos (14 & 17) are very very excited about GKTW as well. One thing I have noticed that many of us have in common is siblings of ill kiddos tend to need that moment to just be a carefree kid as well, so many days lost at needing to be strong and grown up and time with dr's. What an amazing gift to each one of us that is blessed with the chance to go Oh shoot who am I kidding... I am just as excited as the kiddos to go there

I sat up last night reading your TR. You are sooo busy and blessed with beautiful children. I love reading the stories of others also. It is amazing!!! This board contains the most incredible families!!!
And.. I am just as excited as the kids also!!!

How absolutely correct that is! I think that our other children sometimes have to grow up so fast because the time spent dealing with the issues from our children with disabilities can be enormous. My two girls are the most empathetic, understanding, caring, selfless kids I know because they see how "easy" their friends have it and don't appreciate it.

We make it a point to take them to DW often. It's the one place where we can all relax and forget about Doctors (well, aside from the two times my son got sick there) LOL

I agree completely. I hear a lot how mature and caring my children are for their age. Our kids are forced into growing up quickly but it's not always in a bad way. My children have always gone out of their way to help or befriend the kids who need that. My kid's HS is the Severe and Profound school for our district. They have always stuck up for they kids and tried to make others understand these special kids.
And funny enough when getting project assignments my kids always seen to be so deep. How Disabilities affect things, inclusion, medical conditions or how to adapt things for everyone. And it's funny because I have "preppy/jocks" so I have always tried to teach them that it is their job to educate. I LOVE MY KIDS!!!

 

[J'sMum]

I hear a lot how mature and caring my children are for their age. Our kids are forced into growing up quickly but it's not always in a bad way. My children have always gone out of their way to help or befriend the kids who need that. My kid's HS is the Severe and Profound school for our district. They have always stuck up for they kids and tried to make others understand these special kids.
And funny enough when getting project assignments my kids always seen to be so deep. How Disabilities affect things, inclusion, medical conditions or how to adapt things for everyone. And it's funny because I have "preppy/jocks" so I have always tried to teach them that it is their job to educate. I LOVE MY KIDS!!!

It is amazing how great of kids we do have and what they learn from each other and I so agree with the Project Assignments, I notice my two and thier circle of friends doing things that the atypical kiddo, who lacks the contact with someone with any type of special needs might not do.

 

[Mom2mitokids]

Coming here to check up on you guys. Getting close.

 

[hgpiglet]

I just started reading your PTR, how exciting that you guys are so close to your trip! I'm looking forward to reading more about your plans and your trip.

 

[woodkins]

Just wanted to say that I think you have an amazing family & I am so excited that you are a part of the Big Give. My daughter's cheerleading team also competed in that competition. We are big competitive cheerleaders here too!
I can't wait to read your TR!

 

[Haybuggsmom]

Just wanted to say that I think you have an amazing family & I am so excited that you are a part of the Big Give. My daughter's cheerleading team also competed in that competition. We are big competitive cheerleaders here too!
I can't wait to read your TR!

Thank yo sooo much! We feel so very blessed and honored to have been asked to be a part of the Big Give!!!!

OMG Where does your daughter cheer? We will have to meet up next year!!

 

[kimmylaj]

just popping in to say hi. what beautiful children you have (inside and out). i cant wait to read all about your trip

 

[Haybuggsmom]

just popping in to say hi. what beautiful children you have (inside and out). i cant wait to read all about your trip

Thank you!!! I am so excited to be able to share our story and our trip!!

 

[J'sMum]

Wow Hiya ! 1 month 4 days till ya trip Time seems to be flying sooo fast! just wanted to pop n and say hello

 

[Haybuggsmom]

Wow Hiya ! 1 month 4 days till ya trip Time seems to be flying sooo fast! just wanted to pop n and say hello

The days are counting down!!! How's your planning going?

 

[Haybuggsmom]

Thought I'd do a quick update before I get Haylee into bed.

For the past month we have noticed more of an increase in her seizures. Now she is having them every morning. And they are in and out of grand mal. (something new of her) and they have definately increased in the daytime also. So her neuro called me today and he wants to see her on Wednesday. He thinks we will have to start a new med. This will be 3 just for her seizures. I'm hoping there is nothing wrong with her VNS!!!

Well one month to get her used to this new med before we head out!

 

[yinyanggirls]

That stinks about her seizures. I have never heard of anyone having a simple solution for them. It's got to be the most frustrating health concern! I hope she takes to it well, and is adjusted before the trip....

 

[Haybuggsmom]

That stinks about her seizures. I have never heard of anyone having a simple solution for them. It's got to be the most frustrating health concern! I hope she takes to it well, and is adjusted before the trip....

It is super frustrating sometimes. We have become realistic that she will always have seizures. It would just be great to have maybe 1 gand mal a week!!!

 

[J'sMum]

The days are counting down!!! How's your planning going?

Plsanning is going well overall, I;m at point now where I want to start to consider what to pack

Thought I'd do a quick update before I get Haylee into bed.

For the past month we have noticed more of an increase in her seizures. Now she is having them every morning. And they are in and out of grand mal. (something new of her) and they have definately increased in the daytime also. So her neuro called me today and he wants to see her on Wednesday. He thinks we will have to start a new med. This will be 3 just for her seizures. I'm hoping there is nothing wrong with her VNS!!!

Well one month to get her used to this new med before we head out!

Aww man I AM so sorry she has to have grandmalls, My father is an epileptic that has grand mals so i know how difficult it is to sit through one helplessly. I pray that the new medicine works better for her and that she will be at her best for the Trip

 

[Haybuggsmom]

What an exciting day!!!
When I checked the mail we had our first Big Give Gift!

When I told the kidds to get onthe couch to open it Jonathan ran to his room and emerged in what else but his "duck butt hat"!!! Then in turn out came everyone's ears! Then the tears to my eyes!

To the Laxton Family thank you so much for your genorosity. The kids and I were so very touched by your thoughtfulness!!!

 

[cajunfan]

Thanks so much for sharing your family with us! I LOVE the ears & hats! They make me smile! GREAT pictures!

I hope everything went/goes well with the neuro person!

Lynn

 

[Haybuggsmom]

Wit all the excitement of the day I forgot to update on Haylee's appt today!

Her Dr has decided that her doses of her current meds are too high to increase so we now start the "new med" trials. I have a one month plan to try/build up the new med then we will begin to wean off of one of the current meds. Her VNS is functioning fine. Which requires a surgical fix so that's always good news!!!

SO the trials begin again!!

 

[Haybuggsmom]

Thanks so much for sharing your family with us! I LOVE the ears & hats! They make me smile! GREAT pictures!

I hope everything went/goes well with the neuro person!

Lynn

Lynn,
We feel blesses to be able to share our story!! I think that was what the kids needed to really know the trip is comming!!!

 

[Mom2mitokids]

Wit all the excitement of the day I forgot to update on Haylee's appt today!

Her Dr has decided that her doses of her current meds are too high to increase so we now start the "new med" trials. I have a one month plan to try/build up the new med then we will begin to wean off of one of the current meds. Her VNS is functioning fine. Which requires a surgical fix so that's always good news!!!

SO the trials begin again!!

Sorry for a new med. I hate adding more and more meds to the mix. Glad to hear that her VNS is functioning fine.

 

[J'sMum]

Wit all the excitement of the day I forgot to update on Haylee's appt today!

Her Dr has decided that her doses of her current meds are too high to increase so we now start the "new med" trials. I have a one month plan to try/build up the new med then we will begin to wean off of one of the current meds. Her VNS is functioning fine. Which requires a surgical fix so that's always good news!!!

SO the trials begin again!!

Aww I am so sorry she has to change meds around right now, But I am so happy to hear her VNS is functioning properly I will keep you all in my prayers