Easter Seals Crossroads

We went to Crossroads to day to meet with Speech-language Pathologist. Ada had been evaluated a while ago and the devices that they order for her just came in. The first gaol is to use picture of things and teach Ada to pick up the picture of things that she wants and gives it to us. Start with picture of Cheerio because it is the thing that she wants the most right now. Then we get the device that we can hook up with the ipod or toy or things that were battery operated. With a big button to push, Ada can learn to control the activities by making it stop or play. Third is the small device called Step-by-Step with level. We can record message sequence, like hello - how are you and it will play the message if Ada push the button. We have to work with her and go back in 3 weeks. This is the first time I met a therapist who fully understand what she needs and how we can help her. I guess we just wasted our time and energy at RHI.
We got home and started working right away. I cut out the picture of Cheerio from the box. She learn it quick. Next Abby came to see Ada so I set Ada up with the Step-by-Step. So Abby came in and say helo, then i let Ada pushed the button and it say hello back. She was smiling and her face lit up.
At Crossroad they have a Disco Ball light that spins and it gets Ada attention, so I will look for that before I work with the other device. They also hook it up with the drum toy. We can use IPod to play music for her too. Ada loves music and she used to listen to music all the time. Now I just can't find any song that will get her attention. The only thing that get her exciting now is Cheerio.
No "Behavior problem" even mention today. No "She needs to see Neurophyschologist" today, and Ada sat quietly and patiently for more than an hour while we learn how to use those devices. I felt like we had come to the right place even though the word "Disability" kinna get to me.
We will go to the "Keely's" for Thanksgivings tomorrow. Terry doesn't like the Turkey so he skips town and went to Illinois to take care of his customer.
Have a Happy Thanksgiving everyone. I am thankful for my family and friends who had been a big help and big support through out the year.

Back to RHI

An appointment with Dr. Barrio went well on Friday with a bit difficulty in the x-ray room. It was hard to tell Ada to stay still and the technician guy was about to run out of patient. Finally, Dr. Barrio had to come in. He was down on his knees, held Ada's hand and told her that she needs to de still for a few second, and she did.
She needs to put the brace on all the time for 4 weeks but we got green light for therapy.
So, today Karec and I took Ada to RHI. First we sat down with Speech therapist and we worked on teaching her to say yes and no or make a choice. There are some technique that we can work at home and be consistence.
With Physical therapist, I showed her the video of Ada's walking around the car. She noticed that when Ada gets up from the chair, we have to pull her up. So today we taught her to stand up on her own by holding on to our hand. Oh, it's works well and will be easier on our back too. Then we took her out on a hallway and let her walked by holding on to the rail, and she did really good. So we are planning to put a rail on the hall at home.
At this point we cannot tell if she can balance herself or not. It must be nice for her to be able to walk in an open space. She did well today.
We came home and I put Corn Pop in her bowl instead of Cheerio. She looked at it, looked at me and put the bowl down. After a while she grab the bowl and started eating the Corn Pop. She must be hungry.
There are some behavior problems that we should consider correcting them while we can. That's why we need professional help, right? We will go back on Friday and next Tuesday. Then Wednesday we will go to Cross Road rehab to get a communication device and some training.

Fortunately

Just got a call from Rehab Hospital today, Ada got approved to go back to rehab for 3 sessions and we have to do it before the end of the month. I told the lady that she has fracture her arm. Well, think of it as she is lucky to get the approval and if she doesn't want to do anything there, the therapists can teach me what to do with her and give me all the information that I need.
So Friday she will do follow up with Dr. Barrio @ Indyortho. Ardis will go with me just incase I get yell at or I want to yell at somebody then she can be my back up. Those people who work there are not very nice. Tuesday, she will get therapy at RHI. Sunday, Archie, Arthy and I will go to Colts VS. Patriot game.
Ada feels a lot better. By looking at her face, I can tell she doesn't need as much pain med, but I am sure it's still hurt.
More good news next time.

Unfortunately

We went back to Holiday Park and let Ada practiced her walk again. She was doing good walking around the car. With the blink of an eye, she fell. Karec and I could not catch her on time, she let go of her hand and try to stand on her own. I can feel , somehow, that she scared or hurt. We came home and saw that she had a scratch on her elbow. Put bandage on it. She looks tired and took a long nap.
Not until late evening, after changed her into pajama, I noticed that her left shoulder was swollen. We took her to ER right away. From the x-ray we can see that she had fracture her shoulder. She fell on her bottom and I can see her curl up her head and her right arm. Gymnasts always knows how to curl up their body when they fall, but she has no control of her left arm, it must hit the floor pretty hard.
I know that she can feel the pain, but can neither express it, nor tell us. I can feel her pain.
The doctor did not think she need a surgery, just put her arm in the sling and let it heal.
May be we won't be walking anytime soon and it will be difficult to transfer her since we always hold her up under both arms. Two step forward, one step backward. Yesterday I just mentioned to my husband that I wish she was in Therapy now so, may be, we can prevent this accident.
The doctor suggest that we follow up with OrthoIndy. I have to think about that.

Ada's big step

We took her to IMA so she can get more open space to walk. The parking lot that we used to park was blocked so we had to park near the greenhouse. There were so many cars and that created a problem. Ada likes to open the door and she doesn't care if it is our car or someone else. She walked right to the other car and tried to open the door. It was a struggled for me and Karec to get her away. So today we went to Holiday Park. I picked a spot with less car and she started by walking around our car (Ada's car, actually) and tried to open every doors. Watch it here. This is part I. It must be too long, I had problem putting it through youtube.
She walks around the car, leaning against it, took a few steps on her own. She is trying so hard to go around and keep her balance, and we are trying so hard not to help her. Watch it here.
We haven't heard anything from RHI, may be mom's therapy is the best for her. I am sure the more she practices, the more confidence she will get.
At the end of this walk, I unlocked the car and let her open the door, she turned side way, bent her knee and sat herself on to the passenger seat. With a big smile on her face, I had tears in my eyes.

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.

Just what I want to hear

We went to see Dr. Lipson today. Ardis went with us so we both can ask all kind of questions for Ada. Dr. Lipson is the Brain Injury Medical Director at RHI. Last year when Ada was admit there, Dr. Lipson did not have any high hope for Ada but later grew to love Ada just like the rest of the therapist and the nurses at RHI. She was very pleased to see that Ada was smiling and shake hand with her. Dr. Lipson asked all kind of question about Ada like how she communicate, how good she can walk and what else she can do. Then Dr. Lipson asked Ada a question. She asked Ada to look at mom and see if mom's shirt is black and white or red and yellow and asked her to put one finger up for yes, two for no. Ada was listening but cannot put that together. So we have to teach her to communicate for yes and no and ask her simple question. Dr. Lipson told us that Ada's case is complicated and she didn't think Ada will talk! Ah-ha. Now that's might be what I want to hear.
We will take Ada back to RHI so they can do some evaluation with PT, OT and SPT, set a goal and ask the insurance if they will pay for it. For the time being, we will teach her to use her fingers so, just in case she won't talk, she still can communicate. Keep my fingers cross, I know she will.
Next week she will get her Botox shot on her left arm at RHI. It is getting stiff and she won't let me exercises her left arm anymore.
For the sleepless night, I think we figure that one out. has to do with acid reflux and what she eats before bedtime.