Brianna's Wish Trip Summer 2013 MAW/GKTW

[Jessicalynne]

So glad she was able to hold the new baby! That is so fun! I hope you can figure something out to help get the seizures under control at least a little more. That is definitely a tough challenge. Medicines are hard to figure out and with seizures and weaning them on and off isn't fun. Our kiddos just have to go through more than their fair share... If I could take all the hard parts of cancer away from my daughter I would, and I am sure you feel the same with your daughters seizures. I am hoping we get our dates soon.... We probably won't be there at the same time... It would be fun to kind of know someone there. I hope your trip planning is going well. I have kind of put our planning on the back burner until we know our dates for sure. I hope you have a fun time planning too, and not just going on the trip!

 

[Mommyto4Girlz]

Jessica, hope you get your dates soon. How's your little one

 

[Jessicalynne]

She is doing well. She has had an almost constant low immune system though, and seems super duper tired, but that isn't really anything new. She almost always has a lower immune system than the doctors want her to have. How are your girls doing?

 

[Mommyto4Girlz]

They are good. my oldest will be 9 in less than a month and then my 3rd child will be 6 in the middle of August. The baby is slowly making her way into the terrible twos.
Brianna has an 8 hr EEG on the 5th. And we will decide what the next step of her treatment will be. I have a feeling we will be meeting with a neurosurgeon and talking about implanting a VNS device. But we will see.

 

[taliasmom]

I keep hearing about a wish reveal party in everyone's posts...Brianna's never had one. Plus i sort of feel like she didn't get approved. I dunno.
We are supposed to go in like 3 months but don't know anything.

I know how you feel, more than not I've felt in the dark about it all. I'm hoping I'll hear more in the next two weeks, but not counting on it! It just depends on the chapter, I think some are just overwhelmed. No party for Talia either, as long as we get to go, that's just fine.
If it really goes too long, call them, sometimes it helps to gently remind them you're out there.

 

[4pmama]

They are good. my oldest will be 9 in less than a month and then my 3rd child will be 6 in the middle of August. The baby is slowly making her way into the terrible twos.
Brianna has an 8 hr EEG on the 5th. And we will decide what the next step of her treatment will be. I have a feeling we will be meeting with a neurosurgeon and talking about implanting a VNS device. But we will see.

Ramona has a VNS, it's been in for almost two years. I'd be happy to chat about it! She was having 200+ absence seizures a day before, at very high risk for absence status and sudep. She has waaaay less now on a normal day, though they go back up when she's sick. She has also been able to wean off one med, she's on two now instead of three.

Re: the party, I do think the amount of disclosure depends on the chapter. And from other PTRs, it seems people often have the party just a few days before leaving? Maybe you'll get a last minute call? That would/will stress me out too. Ramona's volunteers mentioned a party as a part of the process when they were here, but no details were given. I hope you get a party!

 

[Mommyto4Girlz]

[/QUOTE] Re: the party, I do think the amount of disclosure depends on the chapter. And from other PTRs, it seems people often have the party just a few days before leaving? Maybe you'll get a last minute call? That would/will stress me out too. Ramona's volunteers mentioned a party as a part of the process when they were here, but no details were given. I hope you get a party![/QUOTE]
All the wish granters have said is that we will meet up one more time before the trip. So well see.. if she doesn't get a party its fine. I just want her to have fun and us all have a break from all the stress we have been through

 

[Redwavess]

Hooray for your wish trip!!!

RE: The Party

I agree you may still get one. We were surprised by our wish granters right before the trip with a send off party. I think Make a Wish sometimes thinks they are Make A Surprise Wish!!! We also didn't get very many details. I know most of us are planners so that is tough for us!! From my own experience and from reading other trip reports it appears that Make A Wish thinks surprises are more special!! And I'm like yes surprise the children not the OCD planning mom! Of course I love Make A Wish and am so grateful for the whole experience!!

I hope that you all find a speedy solutions to the seizure issues. I know how hard medical issues are to face!!

Your kids are adorable!! I can't wait to read more about your trip!! If you have any questions let me know!!

Happy Planning,

Madeline

 

[Mommyto4Girlz]

So we didn't get the party. We got the final iterary the other day and got our make a wish button. The escort for the airport bringing our tickets and money the day of the flight. So we will see about all that jazz. Not sure what else is gonna happen. Girls are really excited we are down to 12 days.

 

[taliasmom]

I wouldn't stress on that party, that trip is more than you can imagine! We didn't get a party either, but nobody missed out, that's for sure!

 

[Redwavess]

So we didn't get the party. We got the final iterary the other day and got our make a wish button. The escort for the airport bringing our tickets and money the day of the flight. So we will see about all that jazz. Not sure what else is gonna happen. Girls are really excited we are down to 12 days.

Hooray for 12 days!! Here comes the magic!!

Hugs,

Madeline

 

[4pmama]

Can't wait for your little girl to get her wish!

 

[Jessicalynne]

That is exciting for you! It is so close! I hope you have an incredible trip!