Friday, August 29, 2008


Riley has not crawled in months! Lately it has become increasingly difficult to get her up on her hands and knees. I admit, I'm bad and don't make her do it all that often. But today after her nap she was just laying on the floor so I rolled her over and put her hands down on the floor. To my surprise she pushed herself up and then brought her knees up all on her own! She moved her right arm and then her right leg and fell forward to I put her up on her hands again and again she pulled her knees up. This time she crawled a couple of feet, I couldn't believe it! She was so determined too, she concentrated so hard. So cute.

Ah, the little things that become big things!

Monday, August 25, 2008

overdue update

Things have been sort of "blah" here so no posting!

Grandma flew in last Thursday night so that is exciting!!! Unfortunately we've all been sick - starting with Morgan, then Riley, now me! But we still managed to do fun girl things like shopping and eating yummy food.

Today Riley had her first appointment with the neurologist in Mississippi and we really like her! She is very friendly and easy to talk to. I am 99% sure we are going to start Riley on seizure meds in about a week. I had her blood drawn and now we are just waiting to see what her liver and carnitine levels are like before we start. The neuro said we can go ahead with the video EEG if we want but we are fairly positive she is having seizures so we don't really see the need right now. She also said the most common side effect with the seizure med she prescribed (depakote) is increase in appetite and weight gain. Not necessarily a bad thing for my 25.8 pound girl! Riley will also take carnitine as a supplement to help offset any possible bad side effects of the depakote.

Anyway, I'm feeling pretty good about it now, and I understand it all better.

One little picture of Riley watching Addy on the slip n slide. We managed to get a little outside time in before Fay took over and it started raining for the last few days!

Wednesday, August 13, 2008

ridin' the bus

In the interest of saving gas (and time, I guess) I thought I'd let Riley try taking the bus home. She doesn't seem to mind at all!

School is going well - one week down now! Her teacher sends home a little progress report every day which is nice since Riley can't exactly tell me what she did that day. Most days she needs a short nap in the morning - it's hard getting up at 6:00! She's also been eating foods she normally wouldn't eat at home - like spaghetti.

So far she's been having good days. Today's note said she was moving more independently around the room so that's great! We love school!

Here is a picture of what happens when you leave your 17 month old alone for a minute and a half to upload pictures. Mitch is surprised when I don't have the house spotless now since Addy and Riley are in school. I told him Morgan needs to go to school too before that's going to happen!

Thursday, August 7, 2008

First Day of School!

It went great!

I woke Riley up at 6:00 so she had enough breakfast and then she napped in the car while we dropped off Addy and went to her school. Her teacher said the first hour she just kind of looked around and got used to the place but she laughed for the last 2 hours. I'm sure not every day will be a great one but it's nice to start the year off right!

There are 4 other kids in Riley's class but only 3 of them were there today. One little boy and the rest GIRLS so yay!
The sun was totally in her face but she looked so cute walking out of the school with her backpack on her back I couldn't resist taking a picture!

Tuesday, August 5, 2008

IEP scheduled

Ok so it looks like Riley will be starting school this Thursday afterall! Her IEP is scheduled for tomorrow morning. I feel so unprepared for it. I hope we like this preschool as much as we seemed to when we visited last April!

Monday, August 4, 2008

school time!

I finally got a call from Riley's school and as it turns out her first day is Thursday too! Yikes!

I don't know if she'll actually go on Thursday because we don't have an IEP done for Mississippi yet. I need to get them some information and then they'll call in a day or two to schedule it.
Summer is coming to an end. No more sleeping in. Not that Riley sleeps in much anyway but her usual wake time is between 7:00-7:30 and now she'll have to be out the door by then so we'll probably have to get up at 6:00 to make sure she eats enough breakfast first. I'm tired just thinking about it...

Sunday, August 3, 2008

pool picture

I didn't take any pictures at the conference but I did take some at the pool last night. It was 10:00 before we went in and Riley was yawning the whole time but she loves the water and had a blast!

SRSA Conference

We are here in Birmingham and attended the Southeastern Rett Syndrome Alliance Conference yesterday. It's always nice to hear from experts on Rett Syndrome and get together with other families going through the same thing we are going through!

I also got to meet Avery, Carrie and Gigi! Avery is so adorable and a big bundle of energy!

I really got a lot more out of the Chicago conference but I was glad to listen to the session on nutrition again. We feel like something is going on there with Riley - she just has so many episodes of crying where she seems like she's in pain but won't eat and we don't know what's going on.

Another great session was about using cards for communication, at least as a place to start. We really need to get started on the yes/no cards and I don't know why we haven't yet. If we could get Riley to communicate somehow I think it would be a HUGE help in how we can help her on a day to day basis.

The sibling panel was emotional as usual and I'm sort of glad I had to step out to help a crabby Riley during the last part of it when I guess it got really emotional.

After the conference we ate and then enjoyed the tax free weekend in Alabama to buy Addy's school supplies. She starts Thursday, I can't believe it!