Mind of her own

We still waiting to hear back about therapy for Ada at RHI. It seems like if you don't make enough or significant progress, the insurance will be hesitated to approve for more therapy, but she really needs it.

After a week of intense walking, she decided not to walk as much. Just got up from one chair and sat down on another chair. On the sunny day we took her outside. She walks right to the car and try to open the door, then walk to the other side and try to open the door again. It is not easy telling her where to go, she just goes where she wants to go and drag me and Karec along.

She does pay more attention to the food. She looks at it before she eats. Sometime I mix different kinds of cereal together with Cheerio, she will picks those out and drop them on the floor. And she eats better with Karec. I put Cheerio in the Rubbermaid container with the small lid that flip open. Ada will grab that and flick open the lid and pours Cheerio into the bowl.

I guess she is in a lazy mode this week, takes a nap in the afternoon and sleeps through the nite.

Abby came by and noticed that Ada did not scratch her head as much as she used to do.

With her hand jester, she is able to tell us what she wants. She would point to the bowl if she wants more food, or hit the side of the bed when she gets sleepy. Around 10:00 pm, she will hit the side of her leg to tell us that she wants to go to the bathroom. Overall, she is very happy that we are able to recognize what she is trying to tell us. And we are happy that she is happy. :)

Good night, Ada

We are still struggled with her sleeping. Most of the time, if I open her tube and let the access air out, she will go back to sleep. Some night that she sleeps well, I can't sleep. She starts taking a nap in the afternoon so I nap with her. We snuggle in bed together. It is nice because she let me hug her again and we play and laugh together under the blanket.

She continues to walk around the house 10-20 laps each day. Me and her nurse have to take turn because she will get up from the chair, walk around, come back to her room, sit on the chair and want to get up again. Ada will hang on to our neck while she walk. Once in a while we let her walk almost by herself by just holding her right arm, and she seems to like it. Now we let her walk to the car instead of taking her out on wheelchair, and she walks back into the house.

Still waiting for the call from RHI. We just got letter from medicaid, they are processing the request and needs more information.

I also be able to sneak in baby food into her meal, just to make sure she gets friut, veggie and meat. Basically, she just eats yogurt and Cheerio. Until she can chew better. I tried V8 soup too and she doesn't care for it much even though it tastes much better than those baby food. And yes, I taste everything she eats.

Botox

Ada received her Botox shots yesterday on her calf muscle and forearm. We gave her a shot of Valium before we get there and she looks a bit drowsy. She was schedule for sedation and the fun began. It took 4 of us to hold her down so the nurse can insert IV line into her wrist. 2 shots of sedation and she still wide awake and trying to get up. 2 more shots and I walked out of there when Dr. Dave' started to poke her leg with a big needles. I went back, they were done but Ada still didn't sleep a wink.
We should see the result in a couple of days.

Evaluation at RHI

We took Ada back to RHI Rehab hospital for evaluation in hoping that she will qualify for some therapy since she does not get any for quite a while. She does get Mom Therapy at home and mom is running out of idea.

On Wednesday, we met with PT and OT and on Thursday with Speech Therapist. Ada did really good and very cooperative the first day. She lifted her knees and legs up for the therapist and also walking around with and without her walker. We set the goal for her that we want to see her stand up straight on both feed and help with transfer. PT noticed that she won't put much weight on her left foot so may be some Botox will help relax her leg muscle. OT definitely can help with her left shoulder and arm. We can tell that she has some pain when we try to move her arm around. The next day is not as easy. When the speech therapist started asking her some question. Question! I was really discouraged. Ada cannot communicate well enough but she is able to tell me that she wants something. After that we let her walk around the hall, she turned into the office and wanted to go into a room. We were struggled to get her back to the hallway. People get panic and asked if we need help or a wheelchair. Many just stopped and were amazed that Ada can walk. Now we have to wait for a few weeks to get approved.

Ada continues to smile and laugh all day. She is in a good mood lately. At night if she can't sleep, I just open her feeding tube and let the air out, she will go back to sleep.

She also walked to another neighbor's house today. Linda was home this time and let Ada in.

My friend, Yui, came from North Carolina to visit us. We went to the Museum because, as a fellow Architect, I know she would love it there. Yui took time to examine each painting and read all the description while Ada was waiting. Once in a while Ada will pull Yui's shirt or pants to tell her that it is time to move on. We had fun. I also drove Yui to Champaign to visit her old friends at U of Illinois and we had the best pizza there. Yui and Ardis finally met today when we had lunch together at Thai restaurant.

Keep fingers cross for the good results, and hope we can go back to therapy soon.