Dear Ada

Unfortunately

2009-11-06T00:34:00.000-08:00

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

2009-11-04T17:08:00.000-08:00

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

2009-10-28T21:14:00.000-07:00

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

2009-10-21T15:49:00.000-07:00

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

2009-10-08T11:58:00.000-07:00

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

2009-10-01T18:37:00.000-07:00

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

2009-09-28T14:57:00.000-07:00

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

2009-09-24T06:13:00.000-07:00

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

2009-09-19T19:57:00.000-07:00

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

2009-09-09T10:22:00.000-07:00

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

2009-09-07T22:16:00.000-07:00

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

2009-09-02T21:00:00.000-07:00

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

2009-09-01T07:12:00.000-07:00

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.

Privacy

2009-08-28T09:43:00.000-07:00

I received an email from a young lady who was quite angry that I have been posting about everything that happen to Ada, and I forgot about her privacy. Because this is a World Wide Web, so anyone can read it and she thought there is too much information.
Well, my apology if it offense anyone, but I would like to defense myself.
I didn't get much information about how Ada could progress or how to take care of her from any doctor. Mostly, the information comes from the nurses who is also, mostly mom. I created Ada's blog so her relatives in Thailand can keep track of her progress, her friends who are busy with their lives can read about her, my friends who live in every corner of the world can read about Ada, and someone who also has their love one that has Traumatic Brain Injury can come here and learn about a few things or two of how to take care of TBI patient.
I pour my heart out, to this blog, so we can cerebrate Ada's life, she is still living and I don't want to keep her in her room, in her house away from the public's eye.
Until she can read and write and speak for herself, I have an obligation for my daughter to be her voice, to be heard and to remind everyone that she is still here.
Hugs
P.S. I just read from other blog that the hormone did have an effect on how much a person with TBI can progress. If I had known this last year, I would have asked the doctor about it because Ada did makes more progress after she starts her period again. Also there is a study about the anti acid medicine that is normally given to TBI patient with feeding tube, might also block an enzyme that important to the brain. Again, Ada did not take Nexium anymore and she is doing fine. Without sharing these information, how can we keep track and take advantage of the Modern medicine. After all, I learn pretty much how to take care of Ada more, from the World Wide Web, than the doctors or therapists.

Ice chip

2009-08-26T17:42:00.000-07:00

Last August, Ada was the patient at Rehab Hospital not very far from home, where she learned, after six months, how to sit and stand up straight. Emily, her Speech therapist always working on her swallowing so we introduced a small ice chip into her mouth. She make faces like we put something nasty into her mouth. One year later, Ada is eating, swallowing and chewing on the small ice chips. I wish Emily and her Speech Therapist at the nursing home can see her now. Also she is using her right hand to grab everything; shake hand, thumb up, thumb down. She also help with dressing herself and raises her foot up so we can put sock and shoe on her. She also smiles and laughs a lot. Her hair is a lot longer. Who would have though she can accomplish so much in one year.
Sometime I wonder how far can she go. No one knows. I join the forum that was set up by a young man who has TBI (Traumatic Brain Injury) www.traumaticbraininjuryforum.com There are a lot of information and also many who had suffered from TBI and recovered to almost 90% after 7 to 10 years and many who are still not recovered well. But at lease, they understand what we have to go through.
For me, not knowing is better so I don't expect too much and I don't get disappointed, but I join the forum to see if I can help others along the way.
Daddy went to Thailand for 3 weeks, the Kelly went to Colorado for 2 weeks and they will move into their new home, Archie will go to IU and Arthy will hang around with Ada and mom.
Hugs

Rachel & Ryan Wedding

2009-08-23T11:06:00.000-07:00

The wedding was yesterday. Beautiful ceremony. Ada sat quiet most of the time. I had to give her some Cheerio at the end. Ryan's mom and dad did the catering by themselves so I was asked to bring Pot Stickers for the appetizer and it was gone in a flash. We sat at the Family table, in the front. Plenty of food, free drink and good music. It was quite a laid-back wedding party I've every been. Everyone was smiling and happy.
Ada sat there, smiled and shake hand with everyone. First I thought we might not stay very long but when the dance floor open with loud music, we can see that Ada was enjoying herself so we stayed a bit longer. Her nurse came with us too.

Here are some pictures at the wedding.

Dad, Ada and the beautiful Bride

Mom and the boys. We helped clean up after the party. I was proud of them. They worked so hard. Archie and Arthy showed off their break dance moves while picking up the trash all night.

Katherine came over for a visit on Thursday. She brought a set of small wooden music instrument for Ada to play with.

So all Ada's girlfriends, if you are planning a wedding, don't forget about Ada. She loves to go to the wedding.

Ada on her wheelchair

2009-08-19T18:43:00.000-07:00

Click Here to see Ada, outside, in front of the house with mom and her nurse. It was a nice day, with cool summer breeze, under the tree's canopy. Ada will paddle up and down the street after a short walk with her walker.
Enjoy

Abby

2009-08-12T13:39:00.000-07:00

Abby came by yesterday. She hasn't seen Ada for a long time and she was presently surprised to see what Ada can do. They played puzzles together and talked. Ada looks happy and Abby too. Abby got wagged on the head by Ada a couple of time. I warned her but Ada is very fast with her hand. It is nice to know that Abby and Jeff got engaged and they bough a house.
Ada continue to eat but refuse to take things from the spoon. She also look at the food before she picks it up. There are things she likes and things she doesn't like. She can process the information and make a decision now. Isn't that amazing!
Come by and play with Ada sometime.

GoLytely

2009-08-10T12:08:00.000-07:00

Now you can skip this post if you don't want to read about poop.

After 11 days of agony and uncomfortable for both Ada and mom, we took Ada back to ER. On Wednesday night, she did not sleep at all. Not very busy at ER but we waited for 1 hour till mom had to go find a nurse. Then half an hour later mom saw a doctor who took care of Ada before and tell him we really need to do something with her. Ok, that's problem solved, but 4 hours later, her nurse had to go down stair to get the "GoLytely". They can't sent it through a shoot but failed to call for someone to pick it up. Very usual scene in ER.
The nurse came back with a gallon of liquid and I started to get it through her J-tube. I worked and Ada started to laugh and laughed and she continued laughing the whole afternoon. Me, on the other hand, no laughing but very happy even though I had to clean up big piles of ----by myself. The nurse did not come in to help. And I totally understand.
Now we have to make sure she has enough fiber in her diet and plenty of water. Ada refuses to eat thing from spoon, she like the crunchy things that she can picks up and put it in her mouth. She also looks at the things we are trying to give her. If she doesn't like it, she won't eat.
Today I order some freeze dried fruit and veggie on-line. Seaweed is her veggie for now.
She continues to play with puzzles and learn hand jester with dad.
She also gets mad and starts hitting us or the chair or throws the bowl or toys on the floor.
Those are good things and we are happy that she is learning and making progress.

A few road block

2009-08-03T09:21:00.000-07:00

Forgive me for not posting for a while. We are dealing with a massive blocking, I mean, her constipation. We took her to ER yesterday, took some x-ray, gave her some more laxative and still waiting for the result. Activia doesn't seem to help.
Meanwhile, Ada is grumpy, which is understandable. She continue to play with dad, making hand jester, she even padded the doggie on his head yesterday.
The swallowing test went well. She still has a delay on swallowing so we have to be careful, but she is doing fine.
Grant and his mom stopped by and Ada was so happy. Kirsten also came by and played with Ada. Ardis came by with some apple chips and puzzles.
Do you know she can do some easy puzzle now? Stop by anytime to see her progress or bring me some lunch.
Will write more after all this road block, it is so stressful for me and for her too.
Hugs

Ada and a bowl of sweet potato

2009-07-20T17:45:00.000-07:00

Click HERE
This is the video of Ada eating sweet potato. She enjoy it so much and you will too.

And she wants some more

2009-07-19T18:26:00.000-07:00

Ada has been eating and eating and eating like she hadn't eaten for a year. Well, it had been more than a year. Now she picks up the spoon and feed herself when I give her sweet potato and she is working in scooping the potato by herself. I have to be creative when cooking for her since she is still working on chewing and moving her food around her mouth. Just want to make sure she gets enough nutrition and fiber. We put cereal in the blow and she feeds herself. When the bowl is empty she let us know.
So it is all about eating right now.
We went to Rachael's Bridal shower today. First I thought Ada might be uncomfortable around people but she is doing well. I think people just feel uncomfortable around her. This is the first outing we went. The wedding is next month.

Sun Chips - Garden Salsa

2009-07-09T03:45:00.000-07:00

There are many things I just can't bare to look or do without Ada. For example; I cannot get into her old bedroom, I cannot go through her old cloth and things, I cannot look at her baby pictures, I cannot eat Sun Chips - Garden Salsa, not until now.
Ada is eating just about anything. She prefers crunchy stuffs so I give her cereal most of the time. When she sees the box of cracker or potato chip, she will make a hand jester to let us know that she wants some.
She was sitting in my bed eating Sun Chips - garden Salsa before she left. Some time we will get cracker and artichoke dip for late night snack. I bought a bag of Sun Chips yesterday and Ada still likes it. I went into her room and pulled out some pants and shirts that she can wear. I keep a stack of pictures near by. She likes to look at old pictures. I felt like a get a part of my life back, piece by piece.
We took her to ER yesterday because her feeding tube came loose. Not a problem, it is time to get a new one anyway. The dietitian also called and want me to send her the list of what she can eat. We might be able to wean her off formula in a month.
We just have to remember to give her plenty of water.
My ultimate goal is to have her eating Sushi again. What do you think?

IU Grad

2009-07-02T04:55:00.000-07:00

We just got a letter from Indiana University that Ada had been certified to receive her Bachelor Degree in May 2009.
A few phone calls to her advisor at IU, I'd explained Ada's situation and asked if they would let her graduate. Now we can cerebrate her accomplishment and she had done it without getting a student loan but with a lot of help from many angles in her life, and I hope they will continue to be her angles.
Ada continues to walk and eat more and more. She is able to pick up cereal and put it in her mouth. I had tried to contact her dietitian and her GI doctor but nobody call back so I have to take the matter in my own hand.
One time I asked Dr. Lipson about her feeding, she said, "You are her mom, feed her", so I did. It is still a bit tricky about chewing but she is learning and doing better everyday.
I found that posting on "Twitter" is fast and more fun. I will continue to post here so I can add more details. 140 characters on twitter are not nearly enough.
The journey is still continue. Ada is learning new things everyday and it helps me getting up every morning and wonder what she will be able to do next.

New wheelchair

2009-06-26T18:22:00.000-07:00

We received a new wheelchair for Ada today. The origional chairwas a loan. The old company filed bankruptcy and the new one finally be able to order a new chair and the custom cushion for Ada. It took... oh, about 10 months.
Kellen, Ada's old schoolmate delived the chair by himself. Kellen had been wanted to visit Ada and finally he got to come. The chair is very nice and easier to use. We put Ada on the chair and put the belt on her. It looks like the one they use on the airplane. Ada flicked it open with her finger and laughed at us. Ha... ha.. It took her 10 second to figure it out. Kellen had to exchange the old strap with the new one. She is still sliding down but I hope she learn to sit still on the chair longer. Thanks Kellen.
We sat her at the dinning table. I put a piece of pork ring in front of her, she grabed the whole piece and put it in her mouth. Sorry John, the girl knows how to eat.
She also took a long walk around the house today. We will get her out to the museum tomorrow. It'd been so warm outside.
Ada continues eating and now she is able to tell which one she likes and doesn't like, or if she wants more.