5.31.12 A champion

Yesterday was Aimee's very first school field trip. I debated back on forth on whether or not to take her. Partly due to a long napless day for Caleb, but mostly because it was 50/50 on how Aimee would respond. Would she just fall asleep as soon we got to this unknown place or would she enjoy it in some way?

We drove out to Padilla Bay in the morning and pulled into the parking lot of the Interpretive Center behind the school bus. As soon as I opened the car door we could hear all the excited kids and Aimee lit up. She smiled and kicked as the nurse walked her through the different rooms. Her best friend Alyah brought her seashells and pine cones to feel. Aimee was having a great time.

Then we headed down to the sand. I couldn't take her chair all the way down as it was a sandy slope, but her PT was there and helped carry her down into the sand. At first, Aimee just sat there. We buried her feet in sand and she was still. As we played with the sea grass, a bucket of sea water, and the sand, Aimee started to show enjoyment. She smiled and moved her toes and fingers. What a joy to see! I was so impressed and so was her PT. Aimee was working hard to participate and show her excitement. The PT kept saying to Aimee over and over, "you are a champion".

My whole opinion of this therapist changed at that moment. She is so right. Movements and reactions that are simplistic and "no-brainer" for us, are feats for Aimee to attempt. She lives in a world that speedily moves on around her and she is hyper aware of it. She can hardly see, sounds are muffled, and her own brain doesn't know how to communicate with the rest of her body. BUT she is so tuned in to where she is at every moment. Her attention is captured by the scents, the temperatures, the movements, the pressures, and the moods. Aimee gets life and joyfully works hard to participate in it. Aimee is truly a champion.

5.25.12 Yearling

Picking up the chair May 2011

One year ago this month we picked up Aimee's wheels. One year ago Aimee's life changed. Really, truly. The last year Aimee would fall asleep anytime we went to a new place, anytime she felt at all nervous, anytime she heard a stranger's voice practically. This year's Aimee has a safe place that she knows every where that we go. She is comfortable even with new people, even at the hospital! Especially since her vision is really limited, the chair gives her a sense of space and boundary. Major changes for Aimee!

Hanging out in her favorite seat May 2012

All this to say once again how very grateful we are to each person who gave towards this set of wheels. We are still blessed every single day by your dollar, your vote, and your many prayers. And, of course, we are SOO thankful to dear Erin Cox Photography for making it all happen.

5.21.12 - Aimee Appleseed

Sunday morning Aimee laughed from 4am til after 6am. Then Aimee laughed during church. Today Aimee laughed when we pulled up to Children's and laughed again when her brother cried to be fed. I love how my Dad described her on Sunday as being like Johnny Appleseed spreading joy seeds every where she goes. It is one of her gifts. She is definitely not limited in planting joy in each person that she meets.

We took Caleb down to Bellevue to have a BAER hearing exam on the 10th. The audiology department was hoping to determine if Aimee's hearing loss is a separate genetic condition or if it is completely related to her unknown syndrome. Of course, we felt that if Caleb did have any hearing loss, we would like to know as soon as we could. So, we decided to take him in before he hit the 6 month mark, because at that point they put the baby under anesthesia for the long test (it is typically around 2 hours). However, this 5 month old baby was not about to naturally sleep through a test that includes electrodes all over his head and tiny probes into his ear. It seemed like a useless endeavor from the start, but looking back at it, I'm not sure why I even tried. Since that failed, I am going to hold off until he is old enough for a behavioral screening in about 4 months.

Caleb and I took Aimee to Seattle for her check in with Orthopedics today. The doctor said her feet look really great and he is totally pleased that we decided to discontinue the use of the shoes and bar a year early. HOORAY! However, he did feel like the curve in her spine has become worse over the past 6 months. He is referring us to have a spinal x-ray and meet with a specialist. At this point they most likely won't be doing any treatment, as braces are typically ineffectual in children with such low tone. We'll pretty much be taking her in to discuss the future options and to have baseline measurements/x-rays taken.

5.4.12 Honey Bird

Aimee's new mask (the pixie) for the BiPap machine came last week. This is the third one we've purchased and we're hoping it is a charm. We've actually been trying it without the chin strap, just because we hate the strap so much. It is uncomfortable and big. Just like the previous masks, the strap is designed for use by adults. The pixie is the first mask they have made for children and it just came out. In fact, it is so new that when we were at the pulmonary department trying it on, all the other doctors, sleep technicians, and nurses kept poking their head into the room to get a look at it.
We are still having some difficulty with the fit of the mask. As Aimee is growing the right side of her face is quite a bit less pronounced than the left side, so the mask is always somewhat tilted.

I am excited to tell you about a book that I have been reading called 'Kids Beyond Limits'. It is written by Anat Baniel who has been working with special needs children for over 30 years. Rather than focusing specifically on fixing what the child can't do, she uses gentle methods to connect with the child and stimulate their brain to learn. It is all about maximizing their potential, just like we want for all of us. She says that children with special needs have the potential to be even more brilliant than their peers if they are enabled to learn how to overcome their limitations their own unique way. Through her therapy kids with autism, asperger's, brain damage, ADHD, cerebral palsy, sensory disorders, and undiagnosed developmental delays have seen amazing results.

Some of the things that she says in her book that have caught my eye:
-If the child could do it, they would. Basically, the solution isn't that you just need to show them how to sit repeatedly. If you do, she claims, you are actually teaching them to fail over and over again. The inability gets repeated so many times that it is the pattern the child's brain learns.
-The brain is amazing and has the ability to compensate for missing parts, damaged areas, and other limitations. We want for them to develop their own ability to awaken their brain to learn and grow.
-Goals are important, but they should be flexible goals. When we are teaching the brain to make more connections, it is going to pick up new skills and understanding. We don't get to choose what skills those connections become.
-Believe for the impossible for your child. Don't give up hoping and being enthusiastic.

There is so much more to tell you about what I have learned in reading this book. Two things that I will tell you for the moment though. First, I have discovered a mom in Bellevue that learned Anat Baniel's method in order to work with her own daughter who struggled with sensory issues. She now offers clinic part time called Seattle Sensory Education. I talked to her today and she is going to do a free consultation/lesson with Aimee in a few weeks. The lessons are quite expensive, but I know God will provide. I'm excited to begin!
The second thing I wanted to share was this little poem I started writing about Aimee yesterday. I have felt inspired these last several days since reading this book. It is really very rough, but at least you can see that there is great hope for our little honey bird.

Honey bird in charming cage
No hatch to let you fly
Yet lithe, swift with poised wings
Ready to soar high

Affectionate bird in baffling snag
Sparse light does find your eye
Yet bright, whole with full sight
Ready to see why

Treasured bird in partial maze
Squeezed between tight bar
Yet strong, complete with possible
Ready to journey far

Peaceful bird in murky fog
Muffled fragments heard
Yet joyful, comprehending
Ready to sing the word

Miracle bird in doubting world
Hopes elusive held
Yet faith, tomorrow loves its part
Ready to contraries weld

Honey bird in charming cage
One day soon you'll fly