Conference, School Starts, Bedroom

Alayna spent a good amount of time in the stroller and she was a trooper.

Alayna on one of the flights! Thank goodness for light up toys & her Ipod Shuffle with the Spongebob & ICarly theme songs on it!

Whitney wanted to see Alayna's toy! Alayna held on for a second, but nicely gave it up. She isn't too protective of her toys (yet)!

Alayna & Vera

Brady & his mom

Vera (if I remember correctly she is almost 2)

Evan (9 years old)

Aiden (almost 3)

Eric (8 months)

Taylor (I think 7 years old)

Zoe (3 years)

Merrick (around 2 years)

Joseph

Paige (around 5)

Tru

Bella (not 2 yet!)

Whitney (6 years)

Kaylee (2 years)

Sweet Alayna (3 years)

Callie

Sammie (3 years)

Kate

Abby

Eyes are sleepy.

Us with Rachel Coleman.

Rachel Coleman from Signing Time.

Alayna enjoying relaxing in the hotel room.

Oh the mountains were beautiful!!

This is Drake's latest contraption! It's a hinged cast that can be locked in place. Many have been asking about it, so I decided to sneak a photo in on the blog. He is doing well, getting more range of motion back, and we report back to Iowa City on August 10th. Hopefully it will come off! This summer has not been a good one for Drake at all.

4th Annual 1p36 Deletion Support & Awareness Conference - Salt Lake City, UT

Well, airplane rides are obviously not one of Alayna's favorite things to do. Thank goodness for her toys, blanket, and Ipod. They all helped (at times). However, there were moments of non-stop fussing/screaming/crying where all Dana and I wanted to do was crawl under our seats. Most people sitting around us were very nice and tolerated it well. Only a few glances and stares, but I think they were out of "feeling sorry for her" and not out of anger. It's tough. Alayna is non-verbal and can't communicate. I do think that her ears bothered her a few times, especially on the smaller planes from Chicago to Moline. We've concluded that flying with Alayna isn't easy and if we have to do it again we will try for a direct flight. The long layovers in Chicago were a killer.

When we arrived at the hotel we were greeted by Callie and a tribe of 1p36 families that were in the lobby! It was a nice welcome to see familiar faces as well as a few new ones! I apologize now for missing some of the kids photos. I know I didn't get a picture of Gavin, Molly, Ashlyn, Shay, 2 of the quadruplets, and maybe a few others. Sorry! While we were there we ate dinner out 3 nights in a row with different families. That was wonderful. We also had a girls night out with the mom's to Biaggi's. Again, another awesome time. The dad's did breakfast one morning too.

The conference started with a presentation from Rachel Coleman. She is the founder of Signing Time and they sell amazing DVD's to help families learn sign language. It has also been on PBS in the past. I plan to get the beginning DVD soon for our family. I enjoyed this and wish she would've stayed longer! I need a teacher to teach me signs. She explained how to remember the signs and makes connections with music. Dr. Shaffer, the leading researcher of 1p36, spoke as well, but I'll be honest when saying a majority of her presentation hasn't changed over the 4 years. I know research on chromosomes is difficult, but I just wish there was more to report. I did find it interesting though when she said Signature Genomics diagnosis 1-2 cases per month over the last year. The remainder of the speakers consisted of representatives from a Communication Devices company and The Listening Program and a panel of therapists.

There were many new faces this year, including two mothers of gentlemen that are 20 and 31 years of age. Neither had ever met another child with 1p36. They volunteered to do a question and answer session and I found that to be the most interesting. Neither of their children live at home anymore for various personal reasons that they shared with us. I think that this discussion brought to the forefront the possibility of everyone in that room with younger children to someday have to make that most difficult decision. I don't think any of us want to think about that at all, but the reality of it is it could be a decision we have to make later on.

I found it fascinating too how much of a range of abilities we have with our kids. Even though they all have the same deletion, each one is unique in their own development. Some are sitting, some are crawling, some are walking, some eat and some don't, and some can communicate and some can't. This is tough for many of us parents to see, it really is. Especially since so many of our kids are close in age. What makes them all so different? And at different levels of development? This is a question Dr. Shaffer continues to research. And because I am human, I wish Alayna's developments were right along side some of the kids. But I must be patient and continue to work with her. I do believe that Alayna lacks the motor planning to get to the next step and this is why everything just seems to take her forever to grasp. Right now, sitting is the biggest priority we have and she is doing much better with it.

Next year the conference is scheduled to be held in Minneapolis, MN. We will definitely be going and toting all of the kids along! It is a drivable distance for us which makes it tons easier with Alayna. For some reason, she enjoys the van better than the airplane!

School Starts Tomorrow!!

Well, Alayna's summer break is over today. She heads back to school tomorrow! She is going to need patience because it will take her time to readjust again. No more 2 hour naps in the afternoon. Her school, called SKIP (Special Kids in Preschool), has become an entity of HMELC (Horace Mann Early Learning Center). The location changed and it is now in Rock Island. So, a new school year, a new school location, and a new building require us to be patient with Alayna as change isn't easy for her. Ms. Renee is still her teacher though and I am so happy about that!

New Bedroom!!

Finally, Alayna got to sleep in her new bed last night for the first time! I will post pictures when it is all done. I still have some little touches to do and tonight the french doors are to be here. She didn't do to bad except was woke up by the storm at 4am. Hopefully tonight will go better, she has a long day ahead of her tomorrow!