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In July, I made the bold claim that I was going to post one update a day for a week. I had a lot to report about and thought it would be easier if I divided them up. Well . . . I made it four days and then I completely lost steam. Things got busy with my birthday celebration(s) and honestly, I just got lazy.

This post is all about Hope and one I've been meaning to write for awhile now.

If you've been to our house or spent any time with us or my dad, you will likely have heard about Hope's new bed. I asked my dad this winter if he would be interested in helping me make a "safe bed" for Hope so that she could transition out of her crib. Awhile back, I'd found pictures of a bed crafted for another little girl with AS on facebook and really like the idea. I thought it would make a great birthday gift for her. If you know Granddad, you know he is on the handy side and that he is always up for a challenge!!!

Granddad took this bed from everyone's favorite Swedish mega-store,

And turned it into this:

The chimney panel hides the ladder and one day we may put another bed on top. Hope loves her new bed and all of her increased space to spread out. She sleeps great in it and we are so thankful that she is safe and comfortable.

Check her out climbing in. (Note -- posted videos seem to only work when you view my blog at its website and not through the email feed or on smartphones. Click on the box in the lower right corner to make it bigger.)

My dad worked really hard on the bed and especially the final push to get it completed and installed in time for H&J's birthday party. This shout out to him and new bed "show & tell" on my blog is so unbelievably overdue so if you see him, please tell him how great you think it is and what an awesome Granddad he is!!!

Hope has been doings therapeutic horseback riding for about a year now and we really enjoy our Saturday mornings. She loves it and gets very excited once at the barn. Her main teacher Theresa calls Hope "Giggles" and Hope immediately lets go of our hands and almost runs to Theresa to get on her horse Clyde.

Here's a short video of our rider

And since this is a family affair, here's how the other two often spend horseback riding

We are fortunate that Kevin's parents live 5 minutes from Pegasus Riding Academy and they regularly join us for Hope's lesson. Jack and Erin enjoy some special Grandmom and Pop time while Hope rides and Kevin and I appreciate the help especially on the Saturdays when only one of us is able to go.

A couple Decembers ago when I was secretly just a few weeks pregnant with Erin, Hillary met me in Chicago and was my date to the FAST Angelman Syndrome Gala. I've posted this picture here before, but in case you don't remember, we looked awesome!

While there, I attended an educational symposium on the communication needs of individuals with Angelman Syndrome and learned about a communication strategy called PODD that a number of families were having success using with their angels.

It's taken us a few months (20 actually, but who's counting), and we now have Hope's first PODD book to start modeling with her. The premise is that in order for Hope to learn how to use a communication book to "talk," then she needs to see it in action and we need to "talk" to her with it. I hope that we will integrate it into our life and one day I'll be able to post a video here of Hope using it to tell us some of her many thoughts. Ultimately, we are hoping this will transition to her using some sort of electronic speech generating device organized in a similar fashion as her PODD book.

Here's what her book looks like.

Since none of Hope's therapists or teachers have ever used PODD, I went to a two day training in June to learn the principles behind PODD and how to use it. Not wanting to lose motivation or forget what I'd learned, Kevin and I then worked pretty hard to get the book put together. There is a facebook group of AS parents using PODD and I am very grateful for that resource and the support they provide. Next up is to meet with Hope's speech therapist and get it integrated into her school day. Wish us luck!!!

One final note, here's a video from our recent vacation in Rockport, MA (next blog post will be a highlight of our last few weeks of vacationing). From the video, you can get a taste for how mobile Hope is these days. She loves water and really enjoyed being able to run in and out of the waves.

We have been blessed with the beautiful weekend weather we've had this spring/early summer and have gotten to do a lot of fun things. Here's a taste:

A day at the walk:
Despite the move to the new site in Reading, PA, we had a great day at our 4th year taking part of the Philadelphia area ASF National Walk. Team Hope was well represented by a core group of walkers and our fundraising had another great year. Thanks to all who make the trek to the new site from near and far and for all of you who contributed to our worthy cause.

A day at the zoo:
We love living in such close proximity to the Philly Zoo and are members once again this year. Granddad is always up for meeting us there.

Note our goose friend who really wanted to join our snack time. He was very persistent.

A day at the aquarium
The aquarium opened up an hour early on weekend mornings in June and that meant that we had the place almost completely to ourselves when we arrived with Grandmom, Pop, Jimmy and Abby. Jack and Abby took the place over and ran from exhibit to exhibit. Despite being a whirlwind tour, we all had a blast! (Kevin's pictures came out amazing!)

A day at the beach:
My dad inspired us to make a last minute day trip to Ocean City this past Sunday. We lucked out as the weather was amazing. We fit in many of our boardwalk favorites and had a blast in the water. Such a fun day!