Feeding tube - Part 2&3

Monday morning at 7:30 am, I called to make an appointment for Ada but they said they were packed and asked if we can take her Tuesday. We had done this before so I wasn't worried. By 10:00pm, her temporary tube was pushing in ward. I called ER and they advised me to take her back. The doctor did not think it is harmful but might caused some pain and I know Ada was not happy about it. He decided the best way to help her is to deflate the bubble, pull the tube out, inflate and tape the tube to her stomach. About 3 hours later, he came back and took 2 minutes to do that. It was about 1:30 am and Ada cannot have anything to drink or eat. (I informed the nurse & doctor about this, trust me, I was about to get her up and walk out of there before I start yelling at somebody). I did not give her pain medicine and we both did not have much sleep at all. She curled up putting her knees to her chest. I climbed in bed with her, hopelessly.
Tuesday is much better day. All the nurses in the prep room knew Ada from before, so we received a special treat. I asked the technician whether I can get her in every 6 months for tube replacement. She said they have a preventive plan, like a maintenance plan so she make a 6 month schedule for Ada. Duh.... Why can't they just tell me this last year? Do they really expect me to know about this thing?
By the way, Ada has G-J Tube that's why we have to get it done in Radiology Department and she needs to be sedated and restrained. Otherwise, 4-5 people have to hold her down. The girl is so strong and she kicks.
We both took a long nap after we came home. Hope she feel like herself again soon so we can move on with the communication board and device. I need a vacation.

Feeding tube

We had to take Ada to Er last night. Nothing serious, just that her feeding tube came off. She needs a new feeding tube every 6 month, but going to ER on Sunday night, she won't get a new tube right away. The doctor only put a temporary tube in there so we have to go back tomorrow.
We met our old friend, nurse Ann Huber. Ann had saved Ada's live last year when we took her to ER with 104 degree temp. and the intern doc who didn't know what to do. The Neuro doctors did not want anything to do with her either. Ann said she can feel the heat from Ada's body without touching her. Ann managed to round up Dr. Biggerstaff to come see Ada. Ardis, Ada and I waited in ER for 16 hours before Ada went up to her room. Another time Ada was waiting for her room, Ann stopped by and transferred Ada up stair by herself. We haven't seen her for more than a year, Ann was delighted to see Ada and I was happy not to have to explain over and over why Ada cannot talk or why she doesn't like to be touch.
As we became a familiar faces at Methodist ER, I am still fascinated with how long it takes, sometime, for a doctor to stop by, before we can get the x-ray, to have blood drawn, to get results, to get Medicine. We spend from 2-16 hours in there, waiting, even though it does not seem busy in there. It takes forever to wait to get transfer to a room after admitting because it takes forever to discharge a patient. One time we waited for 6 hours for the ambulance to come and transfer Ada to RHI, which means someone in the ER had to wait 6 to 7 hours for the room to be ready. last time the doctor order a gallon of "Go Litely" for Ada. It took 4 hours. Trun out that the pharmacy cannot put the gallon jug through the running tube and forgot to inform the nurse that she needs to go down stair to get it. Most nurses and doctors are very kind and very helpful. We do have our favorite. I guess I can write a book about it.
She is not happy right now, it must be sore around the tube area. Hope she feel better tomorrow with the new tube.

V8

Dr. Chuck came by to evaluate Ada last week. This is the first time we talk to a doctor who understands Ada's condition. He was able to answer my questions and explained everything in plain English. He explained why she cannot communicate or talk. I asked him about her feeding tube. He said we can feed some fruit juice through her tube. Ah-ha! How about some V8 so she can get a full day supply of fruit and vegetable.? So we try. Not only she can tolerate it well, it also solve the constipation problem.
Ada's arm healed up real well. She starts moving it again. We can start exercises her arm but she still keep it tight. We have to try to get her up and walk again. She had been sitting all day for a while. But she is happy and laughing. We also working with the picture board. We put a picture of cheerio and other things on there. She has to pick up the picture of Cheerio and put it in our hand, we then can give her Cheerio. It sound like an easy task, but not for Ada. She is working on it though, and we have hard time not giving her the Cheerio. Again, we just learn that Crossroad also provide PT, OT and Speech. We wasted our time at RHI. That's place is not for Ada.
The Ebay auction is going well. We will continue to do so for a while since we have more than 80 items.
Ada has a big gift from Santa, but it did not come from the North Pole. It was from her dear friend, Grant Brown, who stations at Afghanistan. I wish for him to come home safe.
We are planning Ada's Birthday party on Saturday January 16, 2010. She will be 25. Turning 25 is quite a big deal for Thai people. It is the age when you are entering an adulthood; finishing school, getting a job, and settle down. It will be an opportunity for her friends and my friends to come visit us. I know it is hard to see her like this, but a friend is always a friend, right? Or is it just me?

Benefit Ada

Ebay auction - benefit Ada starts today. We received more than 80 items donated from Polymer clay artists around the world. Kathy Stuart had finally put some of them on Ebay today. Thanks Kathy. There will be more to come but check out www.ebay.com and put "benefit Ada" in a find box.

Disco Ball, Michael Jackson and Prince

It is the right combination that we've been looking for. Ada always listen to music. When she was a little girl, we listened to Classical music. At school age, we were in the car a lot for Gymnastic meets, so we put on Oldie music so I can sing along while driving. By the time she gets to High School, she had her preference. Ada had music on all the time. In her room, in her car, on computer.
Every time we saw therapist, they always ask me what kind of music did she like. I can't tell them because nothing seems to get her attention. What color that she like? What can we use to lure her to do things we ask her to do? I was pretty hopeless until we went to Crossroad.
They have a device that hook up to the disco ball. We set the timer and when it stop, Ada has to push the button to make it starts again. She was laughing at the disco ball. The speech therapist also let us use "Cheerio" as bait.
We got the device and we hook up the disco ball along with CD player that happened to have "Prince" CD in it. She gave us a million dollar smiles. We also alternate "Prince" with "MJ" and she responses to that very well. She also sat quietly watching "Mama Mia" and "Purple Rain" the other day.
We used to play "MJ" music a lot when my kids were young. Arthy wanted to dance with "MJ" when he grew up. Probably the beats and loud music that caught her attention, but I think there are a lot of Ada in there waiting to come out.
She also making "AHH" sound in her throat all day, I can hear it from my table which is in front of her room.
We will continue to work (and play) with her every chance we get.
Hopefully more good news to come.

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.

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.

Privacy

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

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

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

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

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

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

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

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

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

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

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

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.

Dental appointment

Ada went to see the dentist, Dr. West at IU dental school today. She sat through the x-ray machine without a fight but we have to wrapped her up while sitting in the chair so Dr. West can look at her teeth. Dr. West was very pleased with what she saw. She said we took good care of her which make me very happy. Actually, it was her nurses who take care of the brushing. Eating also help her teeth get cleaner too. We will go back later and have her teeth clean and do more x-ray.
She is also eat a lot more. Let's see; a bowl of cereal, half pear, half cup of sweet potato, half bowl of cracker, a little bit of puree potato and carrot. That's quite a lot, isn't it? Her stomach is doing just fine. I also reduce her formula intake so she won't get too much. She seems happy and smiles a lot.
You can check what is Ada doing now at www.twitter.com/dearAda (Try to keep up with the rest of the world)

Eating is her new thing

Ada is having fun eating solid food. We introduced food to her a few weeks ago. First she did not open her mouth and used her right hand to push our hand away from her face. After a few time that she got food in her mouth, she starts to chew and swallows it. We always make fun of her about her therapist, Emily, who for 6 weeks had tried to convince Ada to open her mouth. "Open, Ada, open" she said, 1000 times a day.
I tried a couple of things and chex cereal works best. Cracker and cookies seems to stick to the side of her teeth. You have to be able to use your toung to move food around the mouth and Ada is learning how to do that. I gave her a few piece of blueberry and cherry today. So far her stomach is doing fine. I still think that everything has to be reintroduce to her since she has not eat anything for more than a year.
And, John, she eats Pork Rind the other day and still like it.
She also be able to put all the toys in the bucket. I have to figure out what else she can do.

Ha-ha, just found out that it is not the spoon that she hates, it's what we put on the spoon that matter. I had tried applesauce and, one wack from her strong hands, the applesauce ended up on my head. Today we had chicken from Boston Market for dinner and I gave her some baked sweet potato, she ends up eating the whoe thing, from the spoon.

Concert for Ada

Today, New August North Breakfast Club Orchestra Came to our driveway to play concert for Ada. Mr. Staubach, was Ada's Orcrestra teacher at Pike High School. Actually he taught all of my 3 kids so I was a regular at school concerts.
It was raining pretty hard this morning but that did not stop Mr. Staubach, his students and a few brave moms who drove the kids here to our house. They set up in the drive way and play beautiful and fun songs for Ada. The rain had stopped for a while so we were able to enjoy the concert. What a treat! Here are some of the pictures.

progress report

We went to Rehab Clinic today to visit Connie, Ada's PT. I want her to adjust the walker for Ada because sometime she hits her knee or her foot on it. Actually, I just want to show off that Ada can walk now. Everyone was so excited and happy to see Ada. Then we, I mean Karec, her nurse and I got her out of the chair and start walking. Connie told us what to do to help Ada in that situation. I know she will be able to tell us what to do.

Connie told me that I did a great job with Ada. I was happy because I always want to do more for Ada and always questioning myself whether I had done enough for her. Since none of the doctor can tell me what to expect or what to do, I had to take the matter in my own hand. To hear that from Connie did make me feel better.

Ada enjoy eating again. We gave her Chex cereal, Gold fish, Teddy Gram and some cracker. She accept it when we feed her by hand. No so happy about the spoon but she let us brush her teeth without too much trouble. You know, pushing, fighting and kicking, sometime. She also, once in a while, pick up a piece and put it in her mouth. We also give her a bucket full of small toys. She picks up the toy and throws it away and sometime, she put them in another bucket. One time I put the bucket of toy next to the empty bucket and told her to put the toys in the empty one, she picked up the bucket and pour all the toys into the empty bucket. With a murky smile on the corner of her lip, she knew she won.

Not sure what she will be able to do next. I think she will talk soon. What do you think?

Come walk with me

Hello, It's Rachel again!
I thought this was so cool, that I wanted to share! I was outside with Ada and she was having a FIT! She was pushing back on the wheelchair so hard that it almost fell backwards! I told her that I was gonna lock the wheels on her wheelchair if she kept on! She seemed to get more angry, I knew she wanted to go inside, but I told her she had to wait a minute. I locked the wheels...... Ponsawan came outside as Ada was STANDING UP OUT OF HER WHEELCHAIR. To make a long story short.... We stood on each side of her to see where she was going. She WALKED all the way to the back room to her bed, turned around and layed down!! All we did was help keep her balanced. It was amazing. Then she starting taking off her shoes, which I helped her finish. I called my mom and she said it sounds like I need to make Ada mad more often! Well, catch you guys next time!!
Merisa and her cousins came by to see Ada and brought more flowers for her. Thank you guys.

Come to my window

Ada's bed is next to the window which faces the fence and neighbor's house, with a few trees insight and the doggies that running around the yard. I got the idea that I will make her a mini garden right outside her window. Hopefully, by next summer, we can start the real garden outside for her. So if you are thinking about coming to see Ada, grab a few potted flowers so I can add them to her personal garden.

P.S. This is a message for Derek Rugsaken. Your letter and the content in the envelope had arrived with much appreciated fro us. Thanks for your kind and generousity. Hope to see you and your family someday.

Good night Ada

After came back from the hospital, Ada hasn't slept through the night like she used to. She kept waking up every few hours and she lets me know that she needs me by tapping her leg. Finally. I decided to give her Advil PM before she go to bed. It seems to help so we both can get a good night sleep. She also has gas in her tummy too. I just have to open her g-tube to let the air out. We still working on it because she seems to sleep better when I lay down with her.
Ada had slept with us in our bed since she was born till she turn 4. I had Archie so she decided to move out and have her own room. She was in and out of our bed till the night before the accident. It might sound weired but I also grew up this way with my parents.
She is also moving around in bed and in the recliner. I can keep her in her wheelchair for long. She manages to wiggle down which make it hard to transfer her from chair to bed. She is also stiffen up her body and won't stand up on her feet.
I am sure she still have some pain. She does not want to walk as much. We are working on getting her back to before surgery.
John and Kristen Olson came to see Ada. John went in to the room and said hello to Ada, she smiled. She recognized him right away. It would be nice to have more of her friend stop by to see her. I know she gets bored sometime.
We go outside everyday and I push her around the block. Good for her and good excercise for me too.

Period

The first time, Terry and I came to Ball State U., we had to take a placement test for our English class. We were given the dictation from one of the instructor. At the end of the sentence, he said "period". I was confused, where I came from, we put "fullstop" at the end of the sentence. So I decided to put the word "period" at the end of the sentences. At the last minute, I changed all the "period" to the dots. I was saved. Then I found out that the word "period" is used for the word "menstrual" too. Strange!

Sorry for the babble, and I do not intent for the whole world to know that Ada just had her period for the first time after the accident, but I think it is a good new. I was excited, at the same time, I know that she was uncomfortable and cranky, just like normal.

We set her on the walker yesterday and she walked for one round. We will work on walking and standing today. She still wakes up in the middle of the night and threw all the pillows and blanket out of bed. Not sure she wants to play or what. After a while she went back to sleep till her nurse come at 10.

Here is the picture of Ada and Arthy. Arthy will graduate from Pike High school in a few day. He was on his way to prom last week.

Surgery

On Monday, May 5 th, we went to Clarian West in Avon for Ada's surgery to remove the kidney stones. It is a bit far away from home. Not sure why they sent us there.We usually go to Methodist Hospital here, downtown. Staying at Clarian west is like having a vacation at 5 star hotel. All the rooms are private, very roomy with flat screen TV, DVD player, small fridge and wooden laminate floor. A courtyard in the middle with ponds and waterfall, home of the mommy and daddy duck with 12 ducklings.
The surgery went well, the nurse came out to get me she said Ada was doing good for 45 min. then started throwing a fist. She said may be I can calm her down. I went in recovery room and tell them I've never seen her like this before; kicking and trying to pull all of the tubes that were adhered to her body. I'll be mad too so "Give her some drug" I said.
She was sleepless all night and we had to give her couple more doses of pain killer. She was calmer in the morning, just laid there half asleep. The nurse offer to clean her up and put her on the chair. I went down stair to get some lunch, came back and sat down beside her. Suddenly, her eyes had turn to the right and she did not response to me calling her. Her face was pale, yellow-greenish. I was panic, scare and not sure what had happened to her. I thought I had lost her, again.
They must have call Code Blue. Suddenly 10 people rushed into the room. I sat down and broke down and cried. I called Terry and told him to come, now. They took Ada to the Critical Care Unit, she had a seizure, a big scarely one. Everyone told me she is going to be ok. Finally everything was under controlled. Watching her, laying there, with the an orange plastic tube sticking down her throat, the breathing machine, the monitor that beeps when something is not quite right. They even put a pig lines on her left arm so all the IV and Med can be served at the same time.
I sat down, quietly with pen and my sketch book and started my drawing. It keeps me calm and my mind get busy with something else. I can't be angry or scare or give up. I need to be strong for Ada.
She slept most of the time. Finally, her face turn pink again. Everything is back to normal but I still have the scarely thought sometime. Is it normal for her to have seizure like this or is it because she did not have her seizure medicine for 36 hours? May be the combination of stress and medications that they gave her had caused this? Is there a "How to take care of a love one with severe brain Injury" for Dummy? I hate it when the doctor told me that it is "normal" for a person with her condition to have this. Then tell me all the possible "normal" things that can happen so we can prevent it.
Ada is home now with a hole on her back from the surgery. She is happy and still sleeps a lot. Her nurses rushed in to give her shower so she won't smell like hospital.
May be this is going to be "Normal" way of life for us. I watch "Michael J. Fox" Special on TV. I got inspired by what he said; "Just be happy for what you have". I will try that.
A few nurses at Clarian West were deeply care for Ada. Funny how all the nurses can tell that she gave them "the look" after they came in and mess with her. May be we should stick with Methodist hospital and Dr. Biggerstaff.
I just realized how strong I am and how strong I have to be. Giving up is not the option. Through this journey, I lost a few friends but gain so many.
Now I need a break and will report back when Ada starts walking again.
Bye for now.

CF Workshop

This is the Steampunk Chameleon I made last week at CF Workshop. It was nice to have time to sit down and clay and having fun doing it. Thanks for PC Guild members who had spend countless hours getting this event going. Kathy, Lee Ann, Marian, I'm sure your husbands were glad to have you back.
I wish I could go to every classes to say hello, but since Ada was in the hospital, it is hard to leave her. Among people who came to the workshop; Melanie and her friend from Kentucky, Linda Weeks who I always want to meet, Rocky who came all the way from Colorado Spring. And, of course, Christi Friesen, the funniest and most generous person of all, I can't thank you enough for her time.
Many had donated their art works which we will try to get the auction going. Kathy was so overwhelm by all the items she had received, it will take a couple of weeks to get it going.
Ada is back to normal, I mean back to her sleeping pattern. During the hospital stay, we did not get much sleep during the night since someone always come in and take her vital sign or give her some medicine, Ada had been waking up every 2-3 hours and cannot go back to sleep. So mom did not get to sleep either.
First thing she did when we get home was giving us a big smile. We haven't seen that for 5 days. Her pain seems to be subsided and she is more calm, in a way. I do give her some Tylenol as needed. I think I can tell whether she is in pain or not comfortable or need something else.
The surgery is scheduled for Monday, May 4 th. Right now she is on Antibiotic. The doctor just want to make sure everything heal up before they go in and take those kidney stones out.
We went to see the Neurologist last week. While we were there, Ada was so irritated and restless. She shake the wheelchair, banging the chair to the table and try to get out of room. I asked the doctor if he think this is a behavior or she was in pain, he said, well, after the surgery she will not be in pain any more then we can say it is her behavior. Oh whatever. I remember begging Dr. Jude to tell me how I can take care of my daughter and he said the neurologist will be able to tell me what to do.
I think I will stop asking those stupid questions since no one seems to know what to expect from Ada. We just have to wait and see what she will do next.
Again, I would like to thanks for all the supports I get from everyone. I used to sing "You and me against the world" to Ada, but now I know that many have come along through the journey with us and we are not alone anymore.

Random Thoughts

Just thought I would drop in with some thoughts...
Ada came home from the hospital on Monday...she was feeling better and she was Bored with a capital "B" of being in the hospital and in bed for a week. There is so much to be astounded by what Ada is doing. I think back to last spring when she was in and out of the hospital several times and then the endless days of the nursing home and even though we lived through it... seems like it must have happened to someone else. I guess the brain has a way of blocking out some of your darkest moments when you have new things to look forward to....

Ada is returning to her old self and even more so...since she came home she seems restless ready to bust out...this makes you smile and laugh but we have to remember Ponsawan is with her all day everyday because some of things she is trying to do could do her harm...she has to be watched at all times. A nurse said to me in the hospital she was very moved by Ada's mother's devotion...I too marvel at my friends' caring ways but even as she knows what Ada needs she is only one person.

So, if you have an hour or two to visit in the next few weeks please know how welcomed you are and how much it would mean to Ponsawan. Ada needs someone to "play" with her. So if you find you have the time for a visit it would be most appreciated...it might give Ponsawan a little time for herself.

I am leaving tomorrow to visit my son in Korea. Kyle has been there now three months and he needs his summer clothes...so I thought why not deliver them in person. This is my third trip in as many years and this time I am on my own most of the time...I really want to just sit , relax and think about how fortunate I am to be blessed with two gifts from Korea that are my sons. It was the devotion of their Korean mothers that made it possible for me to celebrate Mother's Day these past 25 years. Two years ago I celebrated Mother's Day in Korea with Kyle's Korean mother as I will this year. He is a very special son to us both.

But my"daughter" and her mother will never be far from my thoughts as I know they are never far from all of yours. You are Ponsawan's strength.... never forget how important you all are in this healing process.

Take care,
Ardis

Mini vacation

Ada is doing much better but she still have high fever during the night, about 102-103, so Dr. Biggerstaff will keep here at the hospital till Monday. He had agree to take care of Ada every time she admits to the hospital, this way he 'd already knew her and her condition and can order all the test and medication right away. We were blessed to get the privilege.
Ada and I are in private room and the nurse station is in front of the room. With big window, we can enjoy the afternoon sun. There is a couch that can pull out into a bed. I got my beads and sit there making my bracelets. Ada sleeps most of the time. Dad will come in the evening and I will go home to take shower.
2 of my favorite things at Methodist hospital are; the Raspberry ice tea in the cafeteria and the pizza place in the basement. They brew the tea just right everytime. The staffs here kept the pizza place as a secret. It is so good so it is a treat for me.
Christie Friesen is here teaching the class. I haven't had a chance to say hello to her yet, but dad can stay with Ada on Sunday, so I can go to see her. Also today Rachael and Ryan are having the house warming party. Perfect evening, I wish them well.
Ada has 3 small stones and we will come back next week to get them out. I wonder where they came from because she did not have them 6 months ago according to the c-scan.
I knew something was wrong with Ada for the past 4-5 days. She did not act like herself. It is hard to recognize that she is in pain and I thought I knew.
We will take her outside this evening and may be she can walk a little bit. Long and empty hallway would be fun to roam.
More good news later.
Hugs

Kidney stone

Last night we had to take Ada to ER because she had a high fever. She had been grumpy for a few day, I just did not pick up on it that she was sick. Sorry honey.
They suspected the urinary infection, but after the c-scan, they found a stone in her kidney. It was not there 6 month ago, but they are fixing it by putting the drain through her bladder. Oh what ever it is that would help her for now and we have to take care of the stone later. We are happy that Dr. Biggerstaff is taking care of her and I can rest and be assure that she will get full attention and the best care.
We should go home in a couple of day.
Hugs

From Rachel

There has been several times that I have wanted to write something on this page however, I just haven't found the words. I guess I'll just start from the beginning......
Ada and I met when we were just rug rats on a gymnastics team together. She was always very quiet and kept to herself. She was a little younger than me and always very nice. I immediately became very protective of her, I'm not sure why! We were very close and I think it cracked her up that I tormented her little brothers! We ended up doing gymnastics together on the high school team and had some really fun times. Even after we both graduated we still managed to make sure we hung out at least once or twice a year. The day I found out about her accident a part of me died. I remember calling Ponsawan and asking her that one big question.... "Will she remember me?" Ponsawan paused and very quietly muttered... "no,..... well, I don't know." It took everything I had not to cry. I asked her particulars about her condition and then called my mother (a speech therapist that loves Ada too) to ask her what I could do to help, exercises... anything. The first time I came over I sat down and at first, I don't think she knew who I was until I started talking. I know in my heart that she recognized me that day. I come to see her every Thursday and if I can't make it, I come Sunday. She makes progress everyday. I think she realizes that her left arm is there now, she's looking left too!! That was a H U G E deal. The sentencing was definitely one of the hardest things I have ever had to sit through. Anyone who knows me knows that I wanted to freak out in that courtroom. Me sitting in jail definitely wouldn't have helped the situation! I have seen her walk on her walker and stand on the standing frame, she hates that thing! I know this cuz she tried to beat me up when I was holding her on it! The last time I was over there she ate her first piece of solid food!! SOLID FOOD!!! I thought Ponsawan was going to have a heart attack! Well, I could probably type forever, but I'll leave room for other thoughts! I LOVE YOU ADA!!!!
Rachel Watson

A piece of Chex cereal

Today Rachael and I was sharing a bag of Chex Mix while sitting with Ada. Rachael has been coming every Thursday to play with Ada. I gave her a piece of small round pretzel, she took it from my hand and put it in her mouth. I was relieved that the pretzel did not make it into her mouth. Rachael quickly told me not to freak out because I was about to get panic. I dug into the bag and gave her a piece of Chex cereal, she took it and put it in her mouth and chewed.
Ok, Ok, it is not like she will start eating right away. She only took a piece if cereal, but it was a good start. At least she still have the concept of putting food in her mouth and chew and swallow. Incredible, isn't it?
She also walks around the house 5-6 laps in the morning and 5-6 laps in the evening everyday.
We also went to Crossroad rehab center for an Augmentative Communication Evaluation. Since there is a clear indication (in my opinion) that she is ready and willing to communicate with us. We will get a simple device that Ada can work with and they teach me a few things I can work with Ada. So far everyone agree that she does not take a command. LOL Nothing new, we've already known that.
It had been a year and I think Ada had made slowly but steady progress. Everyday is a new day and I can guarantee that she will do something that make me smile. Thanks for all the kind words and support that I get from friends around the world. I no longer cry myself to sleep because now I know that tomorrow a small miracle will happen and Ada's smile will warm my heart and I will have a chance give her hugs and kisses and tell her how much I love her.

Christie Friesen Workshop

Learn how to make these beautiful creatures during Christie friesen Workshop. She will be here April17,18,19. You can still register for class here. No experience necessary.

If you cannot participate at this time, please consider sending baked goods, snack or drinks, if you can. Give me a call, I'll pick it up.

I also would like to thank all of my friends who had donated their artworks that we will put up for the auction later.

Apple Sauce & Ice Cream

That's right, I was able to give Ada 2-3 spoonfuls of apple sauce and vanilla ice cream. She does fight me with her hand but opens her mouth and swallows. She makes faces like I put some disgusting thing in her mouth but she starts to enjoy it more and more.
Along with that, she walks a lot more. In the morning, she walks 4-5 laps around the house, almost by herself. I have to guide her walker around since we have to go through the kitchen and try to avoid banging the fridge and the trash can. She does all the walking and almost manages the turn by herself. She also goes around the house on her wheelchair by using her foot and heel. It is amazing to see her back up her wheelchair to free the wheel when she gets stuck somewhere.
I like taking her to the Art Museum. They have a big plaza and walkway that she can move around freely. She can learn to make a decision of where she wants to go and what she wants to do.
Yesterday, we went to RHI to listen to The Piano man - Jerry Tomlinson playing piano. Jerry and his wife, Lee, go to RHI and plays piano in the lobby almost everyday. We used to enjoy it very much while we were staying there. After that, Ardis and I got Ada on the walker and she walked all the way to unit 4 and said hello to all her nurses and therapists. Everyone was surprised to see her walk.
I think all the excitement during the day had kept her awake during the night. She had hard time going to sleep which means I did not get much sleep either. We will try to have her walk before bedtime too. She usually get really tried after walking.
It is Ok, as long as she's happy, I am too.

Her first 20 steps

Today we put Ada on the walker for the first time since we stopped going to Rehab. The problem was, at the Rehab, either Connie or Cara will stay behind her helping with Ada's left leg and left foot. We put her on the standing frame in the living room, then I sat her down on her wheelchair and put the walker in front of her. She resisted and did not want to stand up. Oh yes, if she doesn't want to stand up, both of us, Val and me can't even get her to stand up. I open her bedroom door and tell her that if she walk to her room, then she we will leave her alone. She got up on the walker and start walking, by herself, with her right step and then left. I was in the front, guiding the walker, Val was behind her with her hand on Ada's hip. 20 steps later, she walked through the door, went straight to her bed, turn around and sit down. Val and I were just in shock, I might have stopped breathing for a few second. I called dad, Ardis and Connie to tell them the good news. I hope you get excited like I am. Good news today and more to come, I hope.

Ada & Company

Pretty in pink, Ada and Macy. Macy took time off from her busy schedule to visit Ada. She was very happy to see her friend. They both look adorable, don't they. Ada laughed and made faces while I was talking to Macy. We both agreed that she must understood everything we said.

Ada and her nurse, Valarie, who help me take care of Ada everyday. Valarie comes twice a day for 2 hour to help getting Ada goes through her daily routine. Val's hardest job is to brush Ada's teeth. Job that I cannot do. We also work together to get Ada on the standing frame and walker. On the good day, I can get Ada on the standing frame by myself, on the not so good day, it took both of us and our strength get Ada on the standing frame, but at the end, Val always win because she won't give up easily like me.

After shower and Price is Right, both of them sit down and watch Young and the Restless together while I take a break or go do some errand.

Here's Ada with dad. She gives him special treat like gives him high-five and a kiss.

Here's Ada near the beautiful water fountain in front of the Indianapolis Museum of Art.

We found a perfect spot under a balcony, away from the traffic. It was a nice and warm day, so I sat her down on the bench that's over look the garden. She later laid down, put her head on my lap and took a long nap. This was the first time I took her out by myself. She must have known. She made it easy for me to transfer her in and out of the car and sat very nicely while I push her around the Museum ground.
Here's the small area with a bronze sculpture and water fountain. She went around by herself using her right foot to push the wheelchair. It is nice to be in the sun after a long winter.

I took her to Sawasdee restaurant after we left the museum. Ning and Ty haven't seen her for a year. Ada was happy and smiled at everybody.

Today, Rachael and Ryan came by and we went to Naked Tchopstix for some Sushi, hoping to convince Ada to start eating again. She loves food and loves to eat.

For me, I got a lot of hugs from her lately. She would grab my arm and pulls me closer, and gives me a hug.

The Slinky Duck

I'm sure you are wondering what is a slinky duck...well it's a little Ada miracle!! Today Ponsawan and I went out to lunch afterwards we stopped at a bookstore so she could pick up some jewelry magazines. In a bin near the cashier a couple of items caught her eye..a mini yellow rubber duck (that flashes color) and a plastic slinky toy. Since Ada is getting interested in picking up items they seemed appropriate...everyone loves a slinky!! When we arrived back home Ponsawan got the items out and it didn't take long for Ada to play a few games with me. I would put them somewhere on her leg and depending on her mood she either put them where I wanted them to go....or where she wanted them to go. Remember Ada is finding out that she does have some control.

Ponsawan has pushed their two single beds together and Ada now turns herself completely over...and she kicks her mother during the night when she wants to be changed. She is using her feet to push her chair all around the house, sits on the futon to watch tv, and keeps darting her eyes towards whatever she desires... like her bed so she can take a nap.

I will never look at a slinky or a rubber duck again without thinking of tiny miracles.

Ada is communicating, she is a miracle and that is how want to remember March 3, 2009.

Love,
Ardis

Last day at Rehab Clinic

We had decided to take a break from going to Rehab Center. Ada had refused to walk or even stand up while in session. She sat with her head down in her wheelchair. It is more of a behavior problem. She does have mind of her own and when she wants to do thing her own way, she usually wins. We will go back when she is ready.

I see it as a good thing. May be her brain starts to work, to reconnect and rewired itself. While at home, she is more active and playful. She moves her arms and legs and laugh at the funny movie. She looks me in the eye, pull my arm and gives me a hug. Today we sat her at the dining table, when we all done, she turn the wheelchair around and went straight back to her room. by herself.

Val, her nurse, and I will work with Ada at home and we will find out if we can get someone to come in once in a while. Just like Dr. Jill Taylor told me; make it fun, if it works then she won't do it. We also get the standing frame and a walker for her now.

Yesterday she broke the pole that hold the feeding bag. It is aluminum pole. The leg got caught under the TV stand but Ada grabbed the pole and pull it down. I duck tape the pole to the floor lamp for now till we get the replacement. Today, she sat in her wheelchair with her feet up on another chair, daddy put a pair of pink clog on the chair, Ada grab the clog and put them on her feet. She still have them on and I though she doesn't like pink.

I sleep better at night, knowing that tomorrow will be another good day.

Hugs

Ada is in the kitchen watching mom cook. She is wearing her favorite shirt.

Ordianary Miracle???

Life is like a gift they say
Wrapped up for you everyday
Open up and find a way
When you wake up everyday
Please don't throw your dreams away
Hold them close to your heart
Cause we're all a part of
Just another ordinary miracle day

Today started out like so many of my days lately...making some tea, reading the paper, listening to the morning shows and wondering what my son is doing on the other side of the world. Like so many of you I want to hear that a miracle has happened and the economy is back on track...little did I know my miracle would come in another form. Since so many of you can't be here in Indiana physically I will do my best to make you part of the tiny miracle that I had the privilege to witness.

In the last few weeks Ada has not always been cooperating with her therapists or her mother. She seems to have an opinion on what shirt she is helping to put on or not put on or she might put her foot down so the wheelchair doesn't move. Ada likes to stand but not always take a step. We have tried to look at this as a positive because it means she is trying to control her world...a world that must seem so out of control to her. But today what we witnessed must mean she has been using all her energy to take even greater control.

Today was one of those late winter days in Indy...the sun was bright and the sky blue with a few clouds. The day was warm enough to work outside so my husband I went over to the Silapiruitis' to clean up the front yard of debris from the fire and remodeling. We also needed to move some furniture around the house so Ada's wheelchair could could move more easily from room to room. By the time we were done there was a pile of trash at the curb and we laughed that Ponsawan was going to have to bribe the trash man to take it all away. Ponsawan had brought Ada outside to watch us work...she kept an eye on us and sometimes a small smile crept over her face. She looked very happy to be the queen on her throne watching her subjects work.

We took Ada inside and as we were sitting around talking she started to laugh and smile quite often. Even though I have seen her do this before it still takes my breath away. I remember so many days and nights I would ask God to please let her family see her smile again...as you can see from the pictures she is still the girl with the beautiful smile that lights up the room. As we sat there marvelling at her Ada suddenly turned the wheelchair around and with her feet pushed herself down the hall. She stopped at one door and tried to open it....when we said that was the basement door she headed straight for her bedroom door and tried the door knob. The door was locked from the inside...so Ponsawan went in from another door and unlocked it. We then said "ok, try again"....she did and with a little help from us she opened the door. The look on her face said " I did it"...she then pushed her way in and pulled up alongside Arthy who was watching tv. Ada was very satisfied with herself and we all just sat back stunned because today we had seen another ordinary miracle...or was it just another ordinary miracle...I think not. But what it is ...is another Ada miracle and I will remember it all the days of my life.

As most of you know March 3rd. will be the 1 year anniversary of Ada's accident. It's hard to believe a year has passed and yet I'm sure for Ponsawan it must feel like 100 years.
So instead of us dwelling on what might have been let's give thanks and rejoice in the miracle that is Ada. Let Ada and her family know that they are in your thoughts and do what you can to continue to give them your love and support.

Love,
Ardis