I'm still here.... just not blogging

I always have the best intention of making our adventures there own little blog blurb, but I have failed miserably this week. For instance, I said NOTHING about the pool party during the evening of the 11th. The families all gathered for pizza, and relaxed for awhile, and then were the sole inhabitants of the pool. All of the girls had a good time: Big Al fell in love even more with little Jailynn, Blondie ran around the field playing with other kids, and then kept jumping off the diving board. Everyone was pretty tired, but those of us that stayed, enjoyed great conversation.

I promise to keep this blog going, I just had to catch up on other things. This week I'm taking Big Al and the cadette girl scouts on a kayaking trip in Charleston, so when I get back on Thursday I'm sure there will be more pictures to post.

Hemi Reunion Day 2 - AM

I know quite a few people are tuning in for quick pics of the hemi reunion, so here is my morning. I ate with Rachel Cogli's mom, and Josie Watham's mom (don't you love how we're always known as our child's parent). We spent time talking about IEP's, etc. I was supposed to be listening to a bullying presentation, but I wasn't being a good audience member and kept chatting. After that we had a hemi foundation presentation with Kristi and Caren talking about how the foundation developed.

They gave out scholarship awards to Christina and Jody (the other two couldn't come),

and then they awarded Rachel Waters the hemi foundation volunteer of the year. She does a LOT of work on the west coast, she works on the website, connects parents with Sturge-Weber kiddos, and in her "spare time" is the wonderful mom to Aiden.

After their presentation the kids put on a talent show,

and in between talent there were a WHOLE LOT of comedians grabbing the mic for a quick knock-knock joke.

Jody led the kids through the "hoe-down throwdown" and then presented a wonderful dance and then it was time for lunch. I think the meals are my favorite times because everyone sits with new people and gets to know the other families.

Another favorite thing for me to see are all of the hemi kids and their siblings getting to know each other. They are playing games together (a bunch of the big guys are on the basketball court) and some of the younger teens are helping in the childcare room with the little guys. My youngest two have had fun in there, and Big Al enjoys playing with the teeny-tiny kids. She would love to take home Dagny and Jailynn, Brian kept laughing at Kiko. So here are some random shots of the kids bonding around the building. More pics later.... we're headed to the pool/pizza party.

Hemi Reunion - Friday

We made it to the hemi reunion in Baltimore this morning. Blondie was very excited about meeting kids "just like her." I was looking forward to connecting with families I've spoken to online, and seeing how far other kids Blondie's age have come.

We got there in time for group pictures:

Then we dropped the girls off in the child care area. Big Al decided to volunteer there because there were a LOT OF LITTLE PEOPLE running around (and she needed the service hours for girl scouts). They had a bouncy house, art supplies and bubbles. Blondie bonded with one little guy playing a DS (she showed him how to play with one hand).

Brian and I went to a few seminars. One was the doctors from Johns Hopkins speaking about hemi's in general. Big Al was very excited to get Dr. Carson's autograph because she just finished reading his book "GIFTED HANDS." He was very accomodating, and spent a few minutes chatting with her. We were lucky to catch him, because after he spoke (about 10 minutes) he was headed straight to the airport to fly out to Germany.

Another seminar was a panel of teens/young adults talking about their lives. We've met a bunch of the young adults we very much admire such as Jody (studying early childhood ed.), Christina (studying Speech pathology) and got to meet Emily (very cool young woman - she can hunt and bagged a pretty good sized antelope), and Lisa who is a stay at home mom to the sweetest little girl.

At dinner the girls participated in face painting, and Blondie hooked up with Hannah, Cameron and Jessie for this picture:

After dinner we watched a presentation of one-handed gadgets (some AWESOME ideas from Emily and her mom). Jody showed us how to make a ponytail with one hand:

And then they asked for volunteers to show how to tie a shoe with one hand. Well, Blondie jumped right up and walked up front with the young adults and showed her version (I think Emily's is MUCH easier). I took this picture and later showed it to Blondie - she told me she felt like a ROCK STAR. She was quite proud to have something to share.

After the presentations we ran upstairs and jumped into our pajamas, but we weren't done yet! Cheesie, Blondie and I went back downstairs to dance and have a fashion show, listen to bed time stories, and enjoy cookies and milk before bedtime.

Everyone is now sacked out, and looking forward to tomorrow. I will try to post tomorrow night, so stay tuned. I can't say enough how wonderful it is to see kids in all stages of recovery, with so many possibilities for their future. We have families here trying to decide if they will do the surgery or not, one family who just had surgery and is less than a week out of inpatient rehab, and then others who are 10 or even 20 years post hemi. There is a lot of support in this group, and I'm proud to be a member of such a caring bunch of families.

Sprinklers

The girls (we have an extra this week - Big Al's friend "Big I" is staying with us until Sunday) were bored and bugging Blondie's OT who now visits us at the house, so I threw out the idea of running through the lawn sprinklers. We have about 6 or 8 of them for the front yard that we rarely use, so the girls thought it was a great idea. After a few minutes they came in and got umbrellas, because APPARENTLY water for the yard is COLD! So, even though the idea of running through 8 sprinklers at one times sounds appealing, it apparently is not. BUT UMBRELLAS ARE FUN, and SO IS THE HOSE, so this is what they came up with:

Anes

Anes is a little boy from Bosnia that is being flown to the US for potential hemi surgery. He is landing today in Indianapolis, and many people have worked very hard to make this happen. There is a blog to follow the family at http://anesjourneyforhope.blogspot.com/ or you can read more of his story at http://hemifoundation.intuitwebsites.com/AnesStory.html . While Anes has something different from Blondie - his is called HME, or Hemimegalencephaly, the needs are the same, this little guy needs a hemi. Please follow his story, and donate if you can.

In just one year the hemi foundation has done such great things and to cap off 1 year of work with helping this little boy is phenomenal. I am so greatful for Cris and Kristi for taking on this cause, because while I wanted to do something, I just didn't know how to put together a nonprofit. I'm honored to take a small part in the foundation, and hope that it continues to grow. I am definitely directing prayers toward this family and the Dr. who has agreed to help him.

The Hula Hoop

Blondie and Cheesie are 18 months apart, and while they are great friends, there is still the problem for Blondie that things she can't do, Cheesie can do with STYLE! Part of Blondie's therapy has been working on using a hula hoop - just get those muscles doing coordinated movement. So to support therapy I bought a hula hoop for the house. The reality though is that it is too tricky for Blondie at the moment ..... so ..... just to show off, Cheesie picked it up.

She is having a ball with it and luckily Blondie doesn't seem to care too much.

I love the tongue sticking out!

Brian took these pictures - he really does incredible things with that camera.

Marry a Thief

Last night we went to a downtown park and listened to Marry a Thief (my little brother's band) play in a summer concert series. It was a lot of fun, but incredibly hot! The band is working on a new CD this summer, and we're all looking forward to it coming out. Last night they stuck with their usual songs, and it was lovely to sit outside and have the girls able to watch. They usually can't watch Colin play because I don't let them go to the clubs (imagine that) even though they could probably go in - not the message I want to send to them. After they played we went out to eat with Colin, his girlfriend Charley, and her parents. A really great evening.