Jayna Takes Her First Independent Steps

Today, November 17th at 5:30pm, Jayna took her first Independent Steps. An hour later, we caught her longest string yet on video. We are a very celebratory household right now...3 1/2 years in the making...and she has finally done it. Now, if you watch the look on her face, you'll see that she doesn't have confidence yet, but that will come with time. I hardly know what to say...we're just watching it over and over and over again!!!

Therapy and School

Well, Miss Bean is now up to 5 hours of therapy outside of preschool. It is not easy fitting those in around her school schedule, but we are seeing some neat improvement. Especially in speech! When I visited her class this week, she greeted all of the students by name "Hi, Isabella!". I was so impressed by that. I'm thrilled with what her speech therapist in school can do in 30 minutes. We have also added feeding therapy to Jayna's routine, as she is back to eating almost nothing by mouth.

Although, funny story, last night we ate chicken sausage (a rare treat in our household) sweet potatoes and steamed broccoli for dinner...want to guess what Jayna wanted to eat? Nope, not the soft, sweet, potatoes. She wanted broccoli. Asked for more and everything. I love that my kids are such healthy eaters.

We also have a new PT (yes, that makes 4 PT's in Jayna's life) from the Elks Club. She comes to our home and is FREE. Yes, FREE. She works with Jayna with OT as well as PT, which is nice. (we actually asked the Elks Club for an OT, but there wasn't one in our area with available space on their calendar). Jayna currently does not have OT. Her OT in school is useless...don't even get me started on HER. Because of her inability to communicate, I am now giving up my Thursday afternoons to sit in Jayna's class and observe (and direct). I can't tell you how pleased I will be when I finish school and can work more directly with Jayna at home.

I've almost completed my first quarter of school. I just have one class; i find it fascinating. While registering for Winter Quarter, I came across the "flex" schedule for the Occupational Therapy Assistant program. I have been so worried about what to do when I'm in school full time (as the 5 credits I'm taking right now take up so much of my time) that I didn't read the fine print. My program is flexible (meaning we have on-line classes and an evening class twice a week with some Saturday labs) and it is Part Time! I'll never be taking more than 12 credits. Very doable. The downside, is that i don't get the HUGE reduction in cost per credit, that you get as a full time student. I've never had a student loan before...but here i go!

Thanks for checking in.

Happy Halloween!

Jayna did not need a stroller or wagon this year. She walked almost the whole time holding my hand. She said "trick or treat" and "happy halloween" and "thank you" at every door. What a difference a year makes!

Speech at University of Washington

On Friday, I was honored to speak with a class of nursing students at the University of Washington. I talked about the first month of Jayna's life, coming to terms with her diagnosis, and rising above the pain of the change in the course of our lives. In addition, I tailored the speech to the students, and talked about our experiences with staff at Children's Hospital. What worked, what didn't. And what is the best way to support a grieving patient and their family. At the end, I showed slides of Jayna's brain before and after her surgery. (Jaime will figure out a way to post those here). And then the students had an opportunity to ask questions and meet Jayna.

I must say, that very few experiences in my life can match the feeling of making an impact in another human's life. One students told me that she had a younger brother with developmental disabilities, and that hearing me talk, gave her a window into her mother's life. Another student told me about her cousin who, as an infant, had meningitis that effected 70% of his brain. Their family was told he was too brain damaged to walk or talk. He is now in his 20's and living in an assisted home and working. Another student couldn't get her words out through her tears, and we just hugged.

What a powerful, amazing and awe inspiring experience. I walked back to the car feeling like one very, lucky (and proud) mother. Its moments like that, which makes all the darkness fade.

I'd like to thank Susanna Cunningham for giving me another way of sharing Jayna and her story with the world. I wouldn't have a message without her wisdom and insight, and for that, I am infinitely grateful.

New Therapy and a New Walker

Jayna has three new therapists to add to her entourage. First, we signed up for PT at UPS again. I am really thrilled with the student working with her. One quarter of therapy only costs $50! Such a deal! We also have a therpist through the Elks program. We asked for an OT, as Jayna is only getting 30 minutes a week of OT in school, but we ended up with a PT. That makes four appointments a week of PT!!! Thankfully, this new therapist is multi facited and works with Jayna in an OT capacity as well. Finally, we have a new speech therapist at school. Jayna got retested (last year she didn't qualify) and now qualifies for speech services...but just BARELY! She needed a score of -1.5 to qualify and got a -1.53. I cheered, of course. Because if you are going to qualify for services, THATS the way to do it! Go JAYNA!

Jayna also has a brand new walker. We bought it on-line, because the PT's on Jayna's team were dragging their feet, and I felt like it might never happen. The walker was under $400, which is about the same we'd probably pay if it went through insurance, as these walkers can run into the thousands. We took a risk, having never seen this walker in "real" life, nor being able to test it on Jayna first. Intuitively though, I knew it would work. Jayna has been a pro in any walker that has arm troughs. And what do you know? First time in it and she is go go go. The walker is a great fit and will grow with her for years.

Other good news! Jayna does not need her wheelchair for the bus! She walks on and off with assistance, and her walker goes with her to school every day. This means, the staff can not rely on the wheelchair during school hours. (I'm not sure if i mentioned that the last time i went to her school, she was at recess just sitting in her wheelchair doing NOTHING--which made my blood BOIL). I'm glad the solution was as easy as removing the wheelchair, because i did not want to start the school year fighting the system already!

I know I have not been good about updating Miss Bean's blog. I have started school, which leaves me with very little down time. I am only taking one class, but it is way more work than i anticipated! Thanks for continuing to follow Jayna's story.

One Handed Walking

The video says more than I can...

Flower Girls

Our friends, Eowyn and Kass, got married this weekend, and they asked our girls to be in their wedding. The original plan, was to have Ryen pull Jayna down the aisle in a wagon, but in trial, it was a bit cumbersome. Then, we tried the walker. But Jayna was sick with the swine flu all week, and hadn't eaten significantly in four days and therefore didn't have the strength or energy. Finally, we tried Ryen pushing Jayna in her wheel chair, which would have worked, but was a bit awkward for Ryen, as she tried to throw out flower petals from her basket.

In the end, Jayna scooted down the aisle. Her papa released her and I caught her at the other end. She stopped to pick up the flower petals Ryen had thrown and turned around to hand them to her papa. With a gentle push, she got herself going in the right direction and actually beat Ryen down the aisle. I cried the entire time.

Being a flowergirl was something i wanted to be so badly as a little girl. So, to see Ryen and Jayna have an opportunity that I did not have, was sweet in itself. But, of course, the bigger picture, is the reality that our friends love our girls, and it didn't matter to them how Jayna got down the aisle, just that she was in their wedding. I don't know many people that would even consider that as an option on their wedding day. I still can't think about their gesture of friendship and love without crying.

If you would like to see better pictures of the girls walking/scooting down the aisle, please visit the attached link. The wedding took place in our church, and our minister was the officiant. It was a beautiful ceremony.

http://www.flickr.com/photos/16854395@N05/sets/72157622232688599/