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.

Sleeping through the night

Oh yes, she has been sleeping through the night for 3 nights now. Keep my finger cross, I hope this even will go on. Not sure what I've done, we usually keep things the same everyday. May be the new medicine starts to kick in. Dr. Dave' give her prescription for her agitation. It was the medicine to protect and cure the flu, and also for patient with Parkinson Decease. At first, I was reluctant to give it to her but after doing some more research on-line, I gave it a try. She also pretty happy and laugh a lot.
How much yogurt is too much? Ada seems to like it a lot. I am able to give her sweet potato and ice cream again. She did not want that for a while. She also is able to chew more crunchy cereal. I give her Kashi - Honey Almond Flax, which is good so I can cut down on sugary cereal.
I love it when Katherine and Abby and Rachel came by, Ada would give them a big smile and laughs while they were talking and tell her what is going on in their lives.
Yui is coming to visit us from North Carolina next weekend. I am excited. Hope Ada will slept through while Yui and I stay up all night talking.
Dad will be back Friday, she will be happy to see him too.

Grocery Shopping

We went to Rachel's house yesterday and we took Ada to Kroger. Rachel was surprised to find out that all the handicap parking space were all full, so we have to park somewhere else. Ada was sitting nicely while I push her through the store and Rachel was filling up the cart. Ada seems happy and content and help out with transferring in and out of the car. We had fun.
Katherine came over to say hello and played with Ada. I think Ada loves to spend sometime with someone else beside me. She probably missed her daddy too. The house was so quiet.
I end up sleeping with Ada at night so I don't have to get up and walk to her bed. So when she starts waking up I just throw the blanket back at her and tell her to go back to sleep. It seems to work and we both fall back to sleep. Insomnia is normal for TBI patient among other things like headache, agitation and depression. It is easier just to put her on drug but I want to see if she can be without it.

Spasticity clinic at RHI

We took Ada to see Dr. Dave' at RHI. I was concerned about her left arm because she holds it up at the right angle most of the time and won't let me stretch or exercises it. She can relax and stretch her arms down to about 10-15 degree. She showed off by walking with me down the hall but gave all the therapists hard time when they want to stretch her arms and legs for evaluation.
She was pretty mad till young Dr. Dave' walked in and Ada smiled at him. Her beautiful smile had brighten the room and everyone started laughing. Abby said "once a flirt, always a flirt". Thanks Abby for going with us.
She will need another Botox shot at her arm, other than that she is fine and the baclofen is at the right dose. A few nurses had stopped by and say hello to Ada.
As for me, it is wonderful to be able to walk around the house in pajama. Since the accident, I had been staying at the hospital, then nursing home, then sister-in-law and her family moved in. I was always fully dress for everyone's sake. Noy and her family just bough a house and had moved out, Terry is in Thailand visiting his mom, Archie's at IU - Bloomington and Arthy sleeps all day, I can move freely around the house in my PJ. Also cooking for 2 people is so much easier so I ask Ada's nurse to join us for dinner.
I will set up the room up stair for my studio, so when I really feel like working, I can go up there while the nurse is taking care of Ada. Massive cleaning is underway.

Neighbor's house

She walked into our next door neighbor's house this morning. When the kids were young, they went to play at the Bartz's basement all the time. We had our house built at the same time and our kids grew up together.
Ada was walking with her walker on the street just like we always do, suddenly she let go of the walker which mean she want to walk with me. I grab her and she led me through the driveway, through the walkway, and sat down on a bench at the front porch. Making her hand jester to tell us that she wanted to open the door, I knocked. Larry came and took her into his house. Ada walked right through the hallway to the family room and sat on the recliner in front of TV. Just like she knew exactly where she wanted to go.
We didn't know what to do or why she did that. She seems calm and comfortable. It was a familiar place, may be she remembered.
Larry walked her back out, she took a big step from the porch and walked toward her chair.
It was a nice visit. Larry, Colleen and Haley were trilled, and so do I.

Chicken Stew

I made Chicken Stew yesterday. My mom's secret recipe. I pureed the stew with some rice and Ada ate the whole bowl. She wanted more. Today I gave her another big bowl, and she took a nap after that. She is able to swallow and chew food much better, no choking. It is nice to be able to cook for Ada again. She loves food.
Abby came by, she has Tuesday off. Abby taught Ada to use her hand and put it to her mouth when she needs more food and not hitting her leg. She did a couple of time for Abby. I just don't have enough patient.
Another friend of Ada came. Sorry I'm not sure what her name is. She went on Katrina trip with Ada. She has a job in Alaska and came to visit her family in Chicago and came here to see Ada. The point is if you have 15 min. break from your busy life, you can come by and say hello to Ada. Most of TBI had lost all of their friends and that would be tragic for Ada because she cares so much for her friends. You know, she always pick up or drop off someone from home ever since she can drive and had a car.
Today we played with beads. I gave her one bead and she put it in a cup. Then I gave her different color bead and asked her to put it in different cup. Quite a challenge and she was thinking, I can tell. She can concentrate more and stay on task longer. She will get it soon but I have to find different shape of beads or make one, she almost put them in her mouth.

About the teeth

Ada had her teeth cleaned yesterday. The dentist at IU Oral surgery department, Dr. West, who work with special patient, like Ada, was very pleased with how clean her teeth are. No cavity but have to watch out the molar on the back. Thanks to her nurses who insist that Ada will have her teeth brushed twice everyday. It is not an easy task because she will move her head away and swing her arm and grab her nurse's hair. I am so thankful that someone else is willing to do it.
We have to give her a small dose of sleeping pill, enough to make her drowsy. She smiled and looked happy. They have to wrap her in a blue strap suit while on the table. After that I had a chance to trim her finger and toe nails, which is another difficult task that we have to deal with.
Now we have to go back every 6 month.
Other than that, she keeps eating, walking and give us beautiful smile everyday.
Thanks for all the comments from the last post, from my heart.
P.S. Thank you Ardis who accompany us to see the dentist.