11.30.12 Discovering Aimee

Very happy to report that as of Tuesday evening sick, disconnected, and miserable Aimee has disappeared and been replaced by her true, joyful, and lively self. We are delighted to have her and her laughter back. Praying for a long stay in healthy land.

I was finally able to take her in for more lessons yesterday. She did amazing. She was engaged and really listening throughout. PLUS, she did two new things right in the middle of the lessons! She moved her right leg by itself. She had started moving her left leg independently in the last couple months, but her right side has a hard time catching up. It was exciting to see her do it 5-6 times during the lesson. The most beautiful thing to see though was when she actually watched her hand move as the therapist was raising her arm up. I've never, ever seen her actually see a part of her own body before. It was beyond amazing!

Watching these tiny discoveries happen, I realize how many bits of information that we just know about ourselves. I am understanding more and more how little Aimee actually does know about herself, even just about her own body. Recently as we were changing her clothes Aimee started to feel the skin of her chest for the first time. How beautiful to see her gather a new piece of information and find out a teensy part of who she is.

Ps. I've added a Gift Ideas page up on the top menu. Useful ideas for Aimee or other sweethearts with similar disabilities.

Another fun new movement in her chair:

11.21.12 Sharing Aimee

Perhaps you wonder why I choose to share intimate details about Aimee's life in this public way. I'm sure some may find it a bit inappropriate. Although we were generally private about our personal life, Aimee has changed that. Our lives have so drastically altered since Aimee was born. I do not merely mean our daily routines. I mean our very life, our being, our hope, our perspective on being a human on this planet, our view towards tomorrow, our joy in simplicity. Yet, I believe, Aimee is not here to only change her parents' lives. In my opinion, Aimee is here for you too. I am much less afraid of the person reading this who might misuse the information, than I am of not doing my part to allow Aimee's light to shine.

Sure, you may not need to know about her appointments or her little struggles. I partly include those for my own record keeping and partly for anyone who carries her in their heart. Yet, not many of you will be able to take time to just sit next to Aimee and learn her language. I am still in 'Aimee 101' myself. So in this intimate, detailed, but distant way, I am sharing Aimee with you.

Below are a few little examples of new things Aimee is learning since her recent trip. It has been such a joy to have so many friends and family comment on how changed Aimee is. People who don't see her often are surprised by her eyesight, her energy, and her awareness. I wish I could have her give you a virtual hand squeeze so you could also be amazed at her strength.

Aimee with her legs crossed over the pommel for the first time. And then she fell asleep. :)

 

Aimee showing new moves to veggie tales tunes. 

 

Also, while I was writing this post, I looked over and this cute little boy was reading to his sissy.  Don't mind the Christmas music two days early in the background. The kids made me turn it on.

 

A few prayer requests:
-Aimee is sick again. I have lost count of how many cough/colds she has had in the past couple of months. Nothing makes me want to take up swearing more than Aimee getting sick again. As you know, a simple cold is so challenging for her (and me).
-She is still having difficulty with reflux and consequently vomiting. We have requested a change in her medication dose and are hopeful that will do the trick. Should begin this increase this weekend.
-This next couple weeks are jammed with check up appointments at the hospital.  Health for Aimee, energy for me, and patience for Caleb!

11.1.12 Neurodevelopmental

The kids and I met with the Neurodevelopmental clinic yesterday. Such a refreshing visit with a doctor who is willing to answer any questions about any area. He oversees Aimee's care at children's and makes sure we feel that every detail is being covered. I typically bring in a list of concerns or wonderings that he addresses and then he reviews with us all her recent issues. He was very pleased with how happy and animated Aimee has become. Definitely found our new therapy intriguing.

At the end of the day, we only ended up with a few areas to make adjustments to for now. First, we started Aimee on a reflux medication to adjust the pH of her stomach acid. We hope this will reduce her vomiting and allow us to get her adequate nutrition again. Second, we talked about using suppositories to help keep her closer to regular. Only going every 2 weeks makes for some sad days. We are considering doing this in addition to the laxative medication she already taking. Lastly, we calculated what amount of fluids Aimee needs when running a fever, so that we have a goal to work towards. She has been sick so much recently. It seems like about half of the time she is sick and we are fighting to keep her hydrated. It will help to know what fluid volume is necessary during those times. Of course, actually reaching that illusive number is another tale altogether.

Another interesting item we discussed was the shape of Aimee's skull. As she grows, the left side of her face is becoming more and more pronounced. He showed me how her head isn't circular overall. Parts of her brain have grown or not grown and the plates have come together sooner in some spots. This has caused her one ear to be more forward, one side of the back of head to be more flat, and the left side of her face to be larger than the right.

We also reviewed the hip x-rays that were taken in January. I found it really interesting to see the differences made by not bearing weight. Her bones are not as strong and sturdy. The tops of the bones were also deformed in that they're straight instead of bent as is typical. Love actually learning how her body works, even the details I don't absolutely need to know. The little things that help me understand her better.