Sunday, August 30, 2009

Raffle Results!

About a month ago, my wonderful cousin gave us a Seattle Sounders jersey signed by all the players on the team to auction off on eBay, and use that money for Lily's hippotherapy. I asked my brother for a little help writing the auction description, and he had an idea to actually run a raffle for the jersey. He took the idea and ran with it, and tonight we pulled the winning ticket.

The best news? John raised $525, enough for FIVE hippotherapy sessions for Lily! We are so incredibly grateful and amazed at how generous people were.


Friday, August 28, 2009

The proverbial "How can we help" question, ANSWERED!

We often get asked, "How can we help?" or "Let us know if we can help out in any way!" We are so fortunate to have such a wide and supportive network.

It can be hard for families who are in the middle of raising a special needs kiddo to come up with specific things that folks can do to help, but the bottom line is we ALWAYS need help!

Lily's is making great strides this year with her new therapies and medications. Unfortunately, even with (arguably) the best insurance in the company, it doesn't cover everything and our budget is maxed out.

I (Katie) have become an Independent Consultant with Discovery Toys. Ever heard of them? AWESOME toys where kids learn by playing. Fantastic quality with a lifetime guarantee. I played with Discovery Toys when I was little and I think we still have several of the toy sets!

I would love to host a party for anyone in the greater Seattle area, or feel free to shop directly through my website:

100% of the proceeds from these sales go directly toward offsetting the cost of Lily's therapy. This isn't a little endeavor of mine to pay for pedicures and lattes (although that would be nice!). This is 100% intended to help pay for therapy for Lily. If it is successful enough, we'd like to add therapy hours someday & see how much more progress Lily can make!


Friday, August 14, 2009

Woefully behind

I am woefully behind updating Lily Bean's blog. In June, Lily completed her first year of Developmental Preschool! She had a fantastic year and we were so blessed to have the teachers and staff that we did. Toward the end of the year, I started talking with the program administrator about developing some parent groups. I began an email group right at the end of the year, and I hope to expand on that, hopefully into a PTA of sorts specifically for the developmental preschool (not just the school at-large).

School starts up in about three weeks, so I'm really looking forward to this. Also exciting is that they are piloting an inclusion program this year! Hank is going to get to go to school with Lily two days per week! I'm am absolutely over the moon about this! I've wanted an inclusion program for them since I knew Lily would be in special ed, but it would've meant moving ot a different school district. We got really lucky with our program admin because he really believes whole-heartedly in inclusion. He says, "Children who learn together, learn to live together." I couldn't agree more. I can't wait to work with him more on some projects toward this goal.

We are having a revision IEP meeting in a couple weeks. We knew that Lily would meet some of her IEP goals over the summer doing ABA therapy, and we were right!!! ABA has been absolutely INCREDIBLE for Lily. She consistently requests items from a field of two using PECS, and we're beginning to expand to a field of three. Soon, we hope to generalize that so she can request items wherever she is. Also, she has learned how to point!! When we began this program back it May, Lily did not have any of the fine motor skills to even form a pointed finger. But look at her now!!!!

We had four year old portraits done of the twins by my dear friend Susan of Whimsical Photo Design. Susan is a friend from Husky Band days, and we'd lost touch over the years. We recently reconnected on Facebook, and when I learned she was a photographer, I was thrilled to have her come up & take these pictures of the kids. They are absolutely stunning, and I am just over the moon to have had her come take them.

Finally, and perhaps most exciting is that Lily has been enjoying hippotherapy since the beginning of June. We travel out to Little Bit Riding Center every week where Lily rides a horse (!!!) for an hour at a time. It is absolutely amazing to see her do this! Lily has incredibly low muscle tone, and we jokingly call her "noodle girl" or "rubber band girl" because she can be so floppy. So to see her sit up so tall, and so strong on the back of a horse is enough to bring this mommy to tears. The video below is from Lily's ASSESSMENT before we ever began therapy. This was her first time EVER on a horse:

Since starting hippotherapy, Lily now climbs up into her highchair unassisted. Climbs onto the couch unassisted. Crawls up the stairs nearly unassisted. Gets down from her carseat unassisted. Gets out of her stroller nearly unassisted. She can (and does!) climb into the bath tub when it's empty, and we're working on shaping that into functional climbing into the tub. Her gross motor development since starting hippotherapy is absolutely astounding. Not only can she do all these things, she does them with complete confidence. And conviction. Oh, did I mention she climbs up on a kitchen chair, and then onto the ktichen table?? Oh yeah, she does that regularly if the chairs aren't pushed in!!!

It has really, really changed our life, and Lily's life for the better. The biggest downside? It's expensive. In fact, ALL of Lily's therapies are expensive. We're fortuante that we have incredible isnurance that covers a portion of Lily's ABA therapy, but all told, at the end of the month we're generally out $1,200 or more for all of her various therapies and medications. (Vigabatrin is not yet FDA approved so we still have to order it from Canada & pay out of pocket for it. A drag, but worth it to see how beneficial it has been.)