June Updates/ June 15th soon
 

Okay all you AWOL mom's and kids. Were are you? Are we all taking vacations for the summer.

Okay I'll start soon Derrick will be 16 What do you get a 16 year old that wont be driving? No clue. He has no real clue what he wants. I want him to get something really special. He is himself such a special kid and will be a wonderful young man.

I am hoping that his medicaid waiver will come through soon, I'm afraid we will have maxed out his insurance soon. We aren't too far from it now.

That is a very scary thought.

Donna

WOW Derrick is growing up quick! I have no clue what to get a 16 year old period, I can't face the fact that my "baby" will be 15 in a couple of weeks.

I wish I could say that the seizure storm was calmer, but since the complete weaning of Topomax we are in a downward spiral, Dr.P had her do a short course of Klonopin which made an amazing difference, but as I feared 24 hours later the seizures were back, they are shorter with the increase of her Zonegran but still to many to frequently. Right now we are waiting to get her levels back from a check friday afternoon before Dr.P give us the next direction to take with her.

We realize that she will probally never have COMPLETE seizure freedom, so we are looking for the fewest seizures with the least side effects (I guess thats what we all want though, right?) Given her diagnosis we have a battle ahead of us.

This weekend we attended a really neat festival that is held here every year, Ri was swinging on the wheelchair swing and a photographer from the Journal came up and wanted to take her picture- the article about the festival with Ri's picture will be in the paper Friday! She LOVES to swing, and really finds it a treat to swing in her chair. she remembered the swing from last year as soon as we pulled into the church parking lot she was looking for it...

Thursday Serena's Song will be at one of the parks here and we plan on going. Riley saw a flyer the other day with a picture of the hot air balloon and is really excited about going up in the air! I on the other hand am a little less excited about leaving the ground~

School is out and I couldn't be happier- Next year Ri will have a new teacher take over her class since the one hired mid year this year was a temp. We already know her and she knows the kids so I expect next school year to be wonderful!

Here is one of the pictures I took at the festival- The swing is where she wanted to stay!

http://i50.photobucket.com/albums/f3...7/06092007.jpg

Derrick had a seizure, a autistic friend, WOW used his magnet
 

Okay I have a wonderful story. Derrick had a seizure at summer school.
And it was his autistic friend that used the magnet that Derrick carries
in a fanny pack that got it out and used it. The nurse and I both
are so proud of this young man.

Its such a wonderful thing to see.

Donna

We are still working through a nice June here in our area. I'm so hoping for a nice hot day tomorrow. I know it sounds so odd to wish for a hot day for a child with epilepsy. But I've been planning this activity for the group I work with for over 2 months and tis tomorrow. I've got over 100 coming and I'm
so excited.

I think I've really surprised lots of people no one thought it would get so big.
They felt if I got the 50 I needed for the deposit not to be lost it was good.

So I'm so excited I don't have a complete final count, because there are two of us doing this, and we are both taking reservations and always some come last minutes.

So wish me luck for weather not to mess us up.

We are going to Indiana Beach for the day. Its at the best rate we could ever have hoped for. We ride and swim in the ride at that area too all day.

Its so neat.

Donna

awww Donna don't our kids just grow up too too fast?

And about having friends help with the lookout of Derrick??? we are starting on the same thing with Kevin at his school as his aide was downsized and laidoff. She was wonderful for him, and got to know the real Kevin within a few days of the start of school.

Kevin is still having a rough time of it. He is seizing alot now, but most of it is sub clinical... which we only see the PI child... sudden sleepiness and hard to wake in the middle of the day.

This afternoon I had a very hard time waking him to go outside and ride his bike. Dad bought a new one for himself and went riding with him. So I sent a very PI little boy out ride his bike... sigh... I still hate epilepsy.

Yep Missy I so understand that one. I even have no clue how somedays my PI son gets through his day.

Like today, he was fine one minute the next he was in pain, and needed to go back to bed, feeling sick and saying I'm not sure what is wrong. I'm guessing a combo of to long of a day the day before. And a PI kid. Not sure though, he just was way to off. Slept till 1:00pm before he was up for the day and back in bed by 9:00pm, so just a regular day minus the morning.

So we will document the day, and hope its a combo. But I wont say a seizure because I didn't see one.

Donna

Kids do grow up way tooo fast! I can't believe Jacob will be 5 this fall, Miss Meg will be 13, and Joshua will be 18.....OMG too hard to believe. I will be the BIG 40 this fall also.......No summer plans for us.......Megs is doing pretty good, getting over a sinus infection, still have sleep issues, but all in all I shouldn't complain it could be a whole lot worse. Jacob started taekwandoe last week, it is just too darn cute......Josh is working all the time as a lifeguard this summer........I have just been keeping busy with the kids and we keep our 8 yr old niece during the summer. I have kind of been in a posting slump lately. Kind of funky, need to kick myself back into gear.
I guess that is it for us. No trips planned, maybe a weekend here or there traveling close to home, but that is it. We are saving our money for next summer, Josh wants to go back to Disney for his graduation present, so we are saving and planning on a family Florida trip next year. Hugs to everyone...
Tracy:grouphug: :grouphug:

Tracey

That would be a great trip for all of you. Gosh I think Josh must have been thinking of the whole family when he told you that Florida was were he wanted to go.

We are not I don't think going anywhere this year either. Just to many medical bills right now. But hopefully I can figure out a way to swing it sometime in the future.

Derrick is making Pizza bagel's for his summer school class this week, its their last week of summer school.

Then he is home all the rest of the time, getting ready for 4-h and some other things. Then it will be time to think of going back.

WOw,

Donna