Wednesday, September 24, 2008

feeling crafty

I've been in the crafting mood lately but haven't been sure just what to do. I want to get more involved with this awesome organization called Girl Power 2 Cure. They raise funds for Rett Syndrome research - you can check out Riley's page at http://www.girlpower2cure.org/riley

So just for fun I printed out their logo and whipped out some of Addy's craft foam and made a magnet! Ok I know it's a total kid's craft but I didn't say I was a talented crafter. :)

(sorry about the glare - flash at night on a fridge doesn't work all that well)

Monday, September 22, 2008

school, church and special needs

I didn't really know what to title this post. :)

I got an email from Karen Patterson of http://www.eyesplease.com/ asking me to put together some info about Riley for Riley's teacher! Karen spoke at the SE Rett Conference back in August and we gave Riley's teacher her information and they've been talking. I can't tell you how good it makes me feel to know Riley's teacher is doing everything she can to help Riley and to get her to communicate with us!

Also we are checking out churches in the area and decided to try one yesterday. They had an article in the paper written about them a few weeks ago because they started a special needs ministry there. Normally Riley will sit with us in church but that is getting more and more difficult so I wanted a place where I can feel comfortable leaving her. Well this is the place! I met a few other families with special needs kids and Riley was WELL taken care of during Sunday School and during the service. They actually have her in a sunday school class with her peers and have someone there to shadow her and help her. She loved it! She was all smiles whenever I saw her and was walking around all over the place. And luckily they have tons of kids there so Addy was happy and even Morgan had a good time after she got over her initial separation anxiety. :)

It happened to be a Sunday that a man got up and talked about his own son with special needs which was just coincidence. He touched on some things that rang so true for me. He was honest and said at times it's been hard to feel love for his son. I have been feeling so guilty because there are times I feel just like that and it was nice to know I'm not completely alone.

They are holding a conference on their special needs ministry for teachers, parents and other churches in a couple weeks and we may try to go. To me there's nothing like getting together with other people who truly understand what it means to have a special needs child.

Thursday, September 18, 2008

playing dressup

I've been a bad blogger! So how about some pictures of the girls playing a little dressup together! Does Riley make a beautiful Cinderella or what?!?



Morgan was not having any of the group picture.

Monday, September 8, 2008

NOLA

We had planned on going to New Orleans over Labor Day weekend but Gustav made us postpone our trip to this last weekend. It was still fairly quiet but since this was our "kid trip" it was actually kind of nice! The aquarium was even running a "welcome back" special so tickets were only $5 each, not bad!

We didn't get there until 8:00 on Friday night so after Riley devoured some chicken nuggets from McDonalds (yum, right?) we headed out to Cafe du Monde. Riley didn't really get into the cafe au lait's or beignets although the rest of us sure did!

We figured the only time to visit Bourbon Street with kids would be early in the morning so we hit it at about 10:00 on Saturday - it was nice and quiet and they loved watching the horse drawn carriages.
Jackson Square was pretty but hot and everyone (especially Riley) was a little crabby. Apparently it was naptime since she fell asleep in the stroller as soon as we left.
Next up was the Aquarium and this picture shows how much her eyes lit up when we first saw the fish. I've said it before but I so wish we could have a huge aquarium in her room!
My little starfish


Saturday night Grandma stayed in with the kids and Mom and Dad got to have an adult dinner at Mr. B's Bistro (which was DELICIOUS) and then we walked around Bourbon Street. Quite a different picture than what it was that morning. :)
Sunday we drove around the Garden District, ate a small lunch and then a big dessert at the Creole Creamery, drove around some cemeteries and headed home. I wish we had more time there, the kids seemed to like it and there was so much we didn't see. But I'm still glad we got to go!

Friday, September 5, 2008

week one down!

Riley has now been on her seizure medication for one week, which is the time it takes to get in her system. Right now we are giving her one dose at dinner and now we're supposed to increase that by giving her a dose at breakfast as well. We're waiting to see if she is still having seizures though.

So far so good - we haven't noticed any in a few days. This morning she was crying and holding her breath at the breakfast table and that typically leads to what I think is a seizure and it didn't. X your fingers the seizures are DONE, at least for now!


Tuesday, September 2, 2008

sick again

I think Riley is trying to win the record for days of school missed the first month.

Boo.