Er visit again, and a MAW news thats neat!

[Denae]

Ri has been having a tough time the last several days. I ended up having to take her to the ER last night. I was scared to give her any more ativan and Dr.P said she needed to be seen. So around 11 last night we took her in. I am thankful that she doesn't have to be admitted every single time anymore. They just watch her for a few hours and let us go.

Dr.P has made changes again to her meds, she is back up to .5 of her klonopin twice a day plus the phenobarb increase. I HOPE the klonopin increase is only temporary, but when I asked his nurse she didn't know. If it keeps her stable then I will just suck it up until after her MAW trip.

She has been out of it ALL day today. She is very unsteady today, from the ativan no doubt. She and I have spent almost all day on the couch snuggling and snoozing.

After lunch I got a call from Ri's wish granter about the trip..

They are getting Ri a princess dress here and having it sent to Fl. She will go to the Bibbity Bobbity boutique for a princess make over :) She asked if Ri had a preconcieved idea of what a princess dress looks like. Of course something pink and fancy! She is going to LOVE being made up, hair, make up and nails!

We also were given the option to drive which will extend out trip by 4 days and cut out a lot of extra worry. I am just not a fan of flying and with all of Ri's stuff we need to have I really like the idea of driving!

We aren't certain which yet.

I am too tired to think about it. I think I am catching something, I feel so completely run down and just weak in general that I can barely sit here. I am waiting for Ri to fall asleep again so I can go to bed too. I don't know if it is really just from all the stress over the last few weeks (months) or if I have picked up a germ from the ER 11 days ago. I know it is too soon to blame it on last nights trip there.

Just tired....

Ri has an eye appointment tomorrow then the big kids only have a half day of school and are out Monday too, it will be a looong weekend! :rolleyes:

[Paul from Australia]

Dear Denae,

It is not fun going to hospital ER. But we should be thankful that miss Riley on stayed for a relatively short visit.

We hope she gets much more alert very soon.

With continuing love and prayers from,

Paul, Alison and Grant in championship mode

[lacyndarella]

I can't wait to see pictures of Ri after that princess makeover!

I am sorry that she has been so unstable and that you are feeling so poorly. I hope she gets better for her trip!

[Carly'sMa]

With that red hair, even though it's short right now, I keep thinking of Rapunzel.

She should love the makeover. So girly!

[AnnMarie]

We just got back from WDW--the girls that have had the makeovers look soooo cute!! They didn't have the bippity boppity boutique when Amanda went--my daughter booked a makeover for all the girls when she interned with make a wish--they LOVED it! If you can extend your trip--do it--there is so much to do in such little time and as it was, Amanda had a real bad morning while we were there and couldn't do anything until the day was almost over.

On the Klonopin issue, we went through the same thing with Amanda. We tried for YEARS to wean her off---her docs said it is one of the hardest drugs to get off. Just do it super slow, weeks at a time...to try to avoid the rebound seizures. AnnMarie

[mpalmer118]

When we did Disney over the summer my boss gave Rachel a make over at Bibbity Bobbity botique. (actually the whole trip was a gift from her, I have a very nice boss:)) It was very very cool, but....for Rachel it was bit of sensory overload, she doesn't like having her hair done and the whole thing took close to 2 hours. That said once it was done and she was able to go around the park all princess upped she loved every second of it. It is very cool, all the workers from gate workers, to waiters, to custodians...everyone greeted her as princess and held doors for her and when we ate the waiter escorted her to her "royal" table. It was very cool, but it was also hard on her if that makes sense. Just be prepared for the sensory part of it all. I have pictures on my facebook account if you want to see them. She had the works, dress and all.