Gait Trainer

Riley had PT today and we brought home this gait trainer to try out for a few days. It's big (why do they have to make this stuff so big?!?) but it does the job! The PT likes this one because we can lock it in place and she can just stand - which is the main reason Dr. Percy wants us to get one, so she can be on her feet without us having to hang onto her all the time - or it can move around and she can walk with it. Riley's not too into that feature right now, but the PT is hoping she'll like being more independant and start walking around more.

Riley has been walking more and more without holding our hands lately, which is so exciting! We don't leave her side because if she falls she doesn't catch herself at all, but it's very nice to see her walking more!

UAB visit and a general update

Today we went to Birmingham to visit Dr. Percy and Jane Lane. The first thing I want to point out is driving to Birmingham and back in one day is exhausting! Next time we are staying in a hotel the night before. We brought the whole family this time and everyone did very well.

Riley overall is looking good. They think we should get her a gait trainer though - she really should be standing a lot during the day but she doesn't like standing without holding our hand so rather than us becoming the stander, we should get one for her. She has a PT appointment Tuesday, so I'll talk about it then.

She hasn't gained any weight since our last visit though, so I need to make sure to add butter and sugar to everything! Afterwards we went to the Cheesecake Factory for lunch, where she ate lots of greasy cheese pizza. Then we also stopped at Dairy Queen and got her some ice cream so we're off to a good start. :)

I haven't updated much lately - summer is keeping us busy, busy! We joined a gym and I finally got brave enough to take all the girls to the childcare and I'm so glad I did. I really was just worried they wouldn't know how to handle Riley, but as it turns out I didn't need to worry at all. I am so impressed with this childcare - we've seen them helping Riley "draw", and they have her play out on the playground. Most of the time they feed her snacks, since that's her favorite thing to do, but at least they don't sit her down and leave her in one spot the whole time.

We also got a membership to the country club that is part of our neighborhood so we have TONS to do now. I've been taking tennis lessons, and Mitch is already on a league. And I've gone to a ladies golf clinic they have once/week and Mitch and I have been able to golf together a few times now. But most of our time is spent at the pool! Unfortunately even the pool is pretty hot for Riley - but we take her in once it shades over, which isn't until after 7:00 at night. I should probably try mornings but the pool doesn't open until 10:00 and it's about 90 degrees by then - Riley does not like the heat!

So that's pretty much been our summer - go go go! In a couple weeks my mom flies down and then will drive up to Wisconsin with me. Then before we know it we'll be back and school will be starting. Time flies!

Addy's prayer

Addy went to Vacation Bible School last week and made this. It made me laugh and cry at the same time!

"I pray for Riley my sister because she has a really bad problem so I still love her"

She read it to me, so I'd know what she was trying to say. She can read pretty well but spelling is another issue. :)

summertime!

School has been out for a few weeks now and we are enjoying the summer! The weather has been beautiful (and hot!) so we've been spending time at the pool when Mitch is home. I can't see myself taking all 3 by myself - Morgan is quite the little daredevil now and pretty much needs one person to just watch her the whole time. But we are having fun for sure!

Mitch's sister is here with her family - I need to remember to get out my camera one of these days. The kids are having so much fun together and we are spending lots of time in the pool and lake. Our boat is finally getting some use!

IRSF Conference 2009

We are back, and this year's conference was awesome!!! Not to say last year's wasn't, but last year was so soon after Riley's diagnosis and I was in a fog a lot of the weekend. This year I was able to have fun and really soak up a lot of the information.

The resort we stayed at in Leesburg, Virginia was gorgeous! The conference kept us busy, of course, but we did manage to get out for about an hour one day and hit golf balls which was a great way to unwind after a long day of sitting in sessions!

Sunday night we went out for dinner with a couple we met last year, and their gorgeous daughter Caitlyn. We also met more people this year, so they joined us too! We all have 4 year old daughters so it's great to think we'll always be together in this - and we hope to meet more people next year. We found out next year's conference will be in Colorado - fun!

After dinner we enjoyed the beautiful Virginia weather and sat outside talking, laughing and listening to the talented Cliff Fry play his guitar. It was the perfect end to a great weekend!

Even though it was much less stressful to go without the kids this year, I have to say I missed this smiling face! And the other two smiling faces, who were busy getting dirty outside when we got home so I only got a picture of Riley. :)

Washington D.C.

Mitch and I are going to the IRSF conference in Virginia this weekend, but we decided to fly in a day early and spend a day seeing the sights! Yesterday we walked around (and walked and walked!) and went in a couple of the museums.

Last night we met my friend Ellie and her boyfriend Rich at a delish Belgian restaurant.

Today Mitch and I agreed we'd go running down the mall - even though we both would have liked to sleep more. My generous mom is back home with the girls and it's just the two of us here, so we figure we'll get to catch up on our sleep at some point this weekend!

Later this morning we're meeting Mitch's cousin at the Pentagon, then we'll probably try to see a few more sights before heading to Virginia for the rest of the weekend. One day is not enough to see much in D.C. so we'll definitely have to plan a trip back sometime!

IEP meeting and a big fat bummer

We had Riley's IEP meeting today for next school year. All went well with that - we agreed with their goals and didn't need to fight anything, not that we expected to. After it was over we stayed to talk with Riley's teacher and she dropped a bombshell on us - she's moving. :( She was supposed to be Riley's teacher next year and we LOVE her so we were so excited for that. She loves Riley too - she was crying while she was telling us. She has learned so much about Rett Syndrome and has become such an advocate for Riley. She is WONDERFUL. I cannot say enough good things about her. We are going to miss her. And it makes me sad that Riley only has 2 days left to be with her. :(