One day at a time.

This is the advice I always get from my good friend, who, for almost 4 years now, had been listening to what ever I need to let out almost everyday. Sometime I just complain and complain too much, I was afraid that he won't come back the next day to hear me complain anymore. But he always there for me. Dr. Jill Taylor once told me that don't think about the future too much, I will freak out and she was right.
I was freaking out like she said. See, when my husband had to go to Thailand to visit his family, I told him, he can't be gone too long. he didn't say anything but he actually went for almost 6 weeks. While he was gone, I kept myself busy. It is hard to keep up with Miss Ada in the evening by myself. Arthy had been a big help but he had something else to do too. One evening, Miss Ada had a fever, her legs and the whole left side was shaking. I gave her Tylenol but she didn't fall asleep till 3 am. She had fever for a couple more days then she was fine. It had happened before and I think her brain and body react to germs in different way. With weather changes, holidays hectic, I stressed out. I just realized that this is hard, too hard for me to take care of Ada by myself. What if something happen to one of us?
I am trying to take it one day at a time, but just got a call from my husband who informed me that his flight from Bangkok to Shienghai was cancelled and he was trying to get another flight and, hopefully, he will be home tomorrow. Is it time to freak out?
One sad note. My friend, Ting, who always leave me comments, encouraging comments had been fighting brain cancer since last year. She is in coma now with a few more days to live. Ting lives in Australia with her husband and her young son. And I can't do anything about it, so I freak out, again.
Hopefully tomorrow, all my worries will be gone, or it will be just another day, who knows!
P.S. I received a call from my husband this morning. he made it to Chicago but missed the flight to Indy. he will be here this afternoon. And a friend in Australia was able to visit Ting and delivered my message to her. I just want to tell Ting that Ada and I are fine, don't worry about us. Rest well, Ting.

Christmas Ornaments made from Cheerios boxes

It had been a while from the last post, and I am apologized for that. I have done a lot of thinking, you know, how I feel about Ada, this Ada and old Ada. Ada is now a new person, it won't be fair to hold her against the old one. After all I won't get my old Ada back. It's only fair to move forward in life. I don't think Ada remembers anything or anyone from her past. I don't think she even remembers me, it just that I am always around 24/7.
It had been almost 4 years now. I am quite comfortable being a stay-at-home mom again. Oh, how much I used to hate that. Now I can go out and get away if I schedule the trip in advance. Arthy spend more time with Ada and more comfortable babysitting for a couple of hour with the help from Annie. I can go to meeting, a few retreat and spend as much time on Facebook talking to friends and customers.
Ada used to volunteer and did Charity works, and this Holiday Season, I want to raise some money and give it to Charity in Ada's name. These ornaments were made from Cheerios boxes. I saved a lot of them. Here how I do it. I cut the box into 1" strips, then glue 2 strips together. Cut the strips into pieces then glue 2 pieces together. Then I paint each pieces and glue them on another piece of cardboard, like so. After that, I paint more details on each tree, and add some dangling beads at the bottom.

I am planning to make more of them, so if you can help, please let me know. I am selling each one for $5 and it will take $1 to mail it.

Have a Happy Holiday everyone.

I am now at peace with myself and quite happy :)

P.S. Why Cheerios box, you might ask? Ada, for a while now, only eat Cheerios, Banana Nut Cheerios. She received 3 can of formula (Ensure kind) each day, a glass of juice, V-8, and a cup of soup via her feeding tube. She eats about half box of Cheerios everyday. Lately, she adds Gold fish cracker, Teddy gram and freeze dried Strawberry and Blueberry to her diet. So... I have a lot of Cheerios box :)

From Rachel

Hello All!
I thought it was about time for me to post something! Sometimes I forget how important it is for people to know different views of who Ada is and what she’s going through. Those who do not know me, I am one of Ada’s Besties since we were little. I try to go see Ada at least once a week. Most times I can’t stay very long, but she brings me joy on a regular basis. She listens and without words you know that she has an opinion waiting to bust out of her! She always did wear her emotions on her sleeve, more now then ever before. I had to tell her that Ryan and I were getting a divorce and she was so angry. She loved it when Ryan and I came over and he would act like he was pushing me down, cracked her up. She has now become okay with the idea and likes my stories of who I have a crush on. I don’t think she thinks that Brad Pitt will ever come around, but that’s okay. She literally rolled her eyes at me! I got to see her eat her first solid food, take her to her first movie, pick out shoes and have had some really awesome times before and since the accident. I am truly blessed to be a part of her life. She is starting to get better about pointing at things and where she wants to go which I’m sure makes life a little bit easier for Ponsawan. I tend to give her a hard time about not talking, and games, etc (in a healthy encouraging way).… and Ponsawan and I joke about her first words being, “Rachel, leave me alone!” The main reason I wanted to post something today is because she has so many friends and loved ones that follow her progress on this blog, which is awesome, and I would love to see people take a more active role in going to see her. If you have a day off work or an extended lunch break or even vacation time, I encourage you to stop by. If you do not live in the Indianapolis area it makes it a little more difficult! People tend to think that a visit won’t make a difference. It means the world to Ada and has a huge impact on her road to recovery. Yes, it can feel intimidating and scary. Seeing someone you love go through something like this is difficult, but what you must remember is that; she is still Ada.
With Love,
Rachel

One on One

We went back to see Speech Pathologist. This time she suggested we sat outside of the room while Ada went in and work with her. At first, Ada didn't cooperate very well. She push the equipment away and threw stuffs on the floor. I waited, patiently, in the other room. Forty minutes passed and the door opened. Ada did settled down and worked on the given task. She is able to focus and listen to the instructions.
Forget about the talking machine for a while, we are going back to showing her pictures. She responses well at home, especially with the picture of Cheerios.
I went to the paint store and picked up some paint chips. Stick one on the board and the other one on with Velcro. Ada is able to match all the pictures and the right color chart. Cheap and effective, we actually work on that 3-4 times a day. Good thing there are several hardware store around here I can visit.Don't want to get caught with a purse full of paint chips. They are free, I know.
Feeding tube is still in tack. I did called the Patient Advocate to see if they can do anything to help us calm Ada down in ER, the lady told me to talk to the doctor. They cannot sedate Ada in the ER, but may be a sleeping med would work. Like I haven't talk to Dr.before, most ER Dr., especially the intern, had no idea what to do with Ada anyway.
She is happy, healthy and laughing a lot. She continues to make progress, at her own pace. We just have to be patience.
Rachael still comes to see Ada every week, despires her hectic work schedule and not too shabby personal life. I love you, Rachael.

Toe nails

Ada had her toe nail pulled out a couple of weeks ago. We do not know what had happened to her toe, but the nail just did not grow properly. Of course, she either let us trim nor touch it. The doctor quickly suggested that we sedate her and work on the nail. Great, this way nobody will get kick. And because Ada had history of seizure, they felt that we should do it at St. Vincent Hospital.
We always take Ada to Methodist Hospital, but OMG, what's a different they way they treated their patients. Ada had her wisdom teeth pull at Methodist Hospital last month, they put us in a small room with curtain for surgery prep. I always make sure that they understand Ada's condition. I insisted on not taking her home until she stopped bleeding. After being separated, I have to sit in the waiting room while they work with Ada. I wondered off and got a call from Dr. that the surgery was done and she was doing well. I rush back and waited in the waiting area for about 30 min. when they told me I can see Ada. I went in and Ada was in bed, almost sit up in bed. They said she can go home, now. I felt rush but what can I do. I asked how do they know she was not bleeding anymore. They said she didn't swallow as much. In short, get the heck out of here, we need the darn bed.
At St. Vincent Hospital, we were sent into a surgery prep room, which is double the size of the prep room we used to be in, with door. There is a recliner and chairs and I can sit in the room while waiting. Ha? Her nurse brought me soda and cracker. Ada was given a few dose of sleeping pill before they can started the IV. They were very kind and understanding. Of course, the surgery took 15 min. to finish and her Dr. even trimmed all her toe nails. Ada was so sleepy and will be sleeping for a while. Her nurse told me to go get lunch because they will let Ada sleep. Ha? Ada end up sleeping for almost 3 hours before they even try to wake her up.
Can we changed hospital? I felt the need to go and talk to the patient advocate at Methodist Hospital of how badly we were treated for the past 3 years and I didn't realize that until we were at St. V.
For now, Ada is doing fine, and shouldn't have any major hospital even to attend for a while. The feeding tube works well for now. She is alert, much more alert sometime it is quite scare when she stands up from the recliner by herself. I can't leave her alone and she won't leave me alone either. Talking about separation anxiety. Sometime I think she acts like a typical 3 years old who likes to cling on to mom's leg, needs all attention, and occasionally, throwing tantrum.

All 4 Wisdom Teeth

Look at my big cheek rabbit daughter, she had 4 less teeth since Wednesday. Yep, all 4 teeth were out at the same time. I cried when I saw her after surgery. I cried before the surgery because I did not know how I would take care of her. I kept nagging nurses and doctors about Ada's condition just to make sure they know what they were dealing with. This is Saturday and she is smiling and laughing a little bit. I am not sure when she will let us back to clean her teeth again. Good thing I met a friend of mine on Facebook and she has been kind enough to consult me every morning. You got to love Facebook.

Rachael, my other daughter and Ryan came by on Mother's Day. Got to love her, she is the regular who still come to visit Ada almost every week.
It had been quite stressful lately. Problem with feeding tube, new nurses and now the Wisdom teeth, I really need a break.

In the Garden

Mike and Frances came by to visit Ada and I, so we went to IMA and walked around the garden. I was glad that Mike was able to help me pushing Ada around.

It was kinna annoying when I found out 3 years ago that we cannot just push Ada on her wheelchair and go where we used to go in the garden. The paths laid with gravel and the big flag stones make the task very difficult. Not to mention the terrain with steps, that's impossible. Frances and I stepped down to take a pretty picture while Mike stayed with Ada.

Since all 3 of us graduated from Ball State University with Degree in Landscape Architecture, we agree that something needs to be done or addressed to the designer that people in wheelchair need to be taken into their consideration too as part of the design.

That's what I hope to do, someday :)

The girl and her new shoe collection

Last week, Ada's surgery for her wisdom teeth had been postponed, which is good for us because she had been sleeping and napping all day. Must be tried from all the commotion with the feeding tube. The tube works fine so far.

Today Rachael came over and we took Ada to Trader Joe's. We both fill up the cart with good food. Ada was good but attempt to grab other people cart one time. I found freeze dried strawberry that cost less that what I bought at Georgetown Market. I also bought Light coconut milk for curry. Arthy has been cooking for us and he is very health conscious.

Rachael is changing job so she had been helping her mother-in-law clean out her closet. She got 3 big boxes of shoes and stuffs in her car. Size 7 1/2 and 8? Great, we both wear the same size shoe.

We came home and Rachael took out the boxes. I tried on some shoes. Ada was curious. Rachael gave Ada a shoe and Ada extended her foot out, Rachael put the shoe on, Ada gave her another foot and she looks happy.

I should have tape the event, really. Rachael showed Ada another shoe, she wave her hand, as a "no no". Then Rachael gave her another shoe, she extend her foot out again.

The girl has a new collection of shes now. Amazing how can she picks and chooses and makes decision. The brain must be working hard today.

New tube

Today we got up at 6 am and headed to the Interventional Radiology department so Ada can have her feeding tube put back in. The catheter tube worked just fine but it might have irritated Ada's stomach. The nurses in the prep rooms remembered us so there was no need for long introduction. The last time we were there was 3 months ago. Joe, the technicians just shook his head and went back to see if he can find some other alternative tube for Ada.
The feeding tube has a balloon at the end, after you put the tube in the stomach through a small hole over the belly button, you inflated the balloon with salt water. The balloon will keep the tube in. Usually, each tube last 5-6 month but it can be pull out by accident. Joe suggest a shorter tube that the opening is next to the skin. Another tube will be connected for feeding. Well, Ada doesn't like to be touch and fussing with her stomach area all day won't work. The next one is the same feeding tube with the end cap that look like a small mushroom. It can stretch so thin in order to put it through the hole , and once it get in, the small rubber disc will make hard to pull the tube out.
Joe did mention it last time and tell me to call Ada's GI doctor, which I did but he didn't tell me anything new. How far and wide do I have to search in order to make our lives a bit easier, you know, not having to spend 5 hours in the ER every 4-5 months? I am sure the mushroom kind had existed a while ago, and no one thought, ha, that's would be better for Ada. Same as the earlier time when Ada used to have a G-J tube. It works because it prevent aspiration, but it clogs easily and the food goes down very slow. It was my executive decision to change from G-J tube to G-tube and it went well.
Joe said this tube should last at lease a year to 5 years, so we won't see each other often unless I just want to talk to him. Thank you, Joe, you will be missed.

P.S. I am happy with Congresswoman Gifford's progress. But just to remind you that in reality, if you, an ordinary people had a severe brain injury, don't expect to be flown in to the hospital by the private jet, then helicopter. Don't expect that they will let you stay in the hospital for 3 months with private nurse and everyday therapy. Don't expect the Musical therapy either, unless you have the same kind of insurance that the Congresswoman has. I thought Ada has the best, Medicare won't pay for her Musical therapy. Don't get me wrong, I am forever grateful for what we had received. Salute for this great country.

Feeding tube

Yesterday we went to the pre-op for Ada at Indiana University Hospital where they prepared the paperwork for Ada's surgery next Wednesday. Ada had been patiently waiting and sitting in her chair while I talked to the nurse and doctor. After two hours, we went home only to turn back to Methodist hospital because her feeding tube came off. And it is Friday afternoon which means it was busy and the Intervention Radiology Department will be closed till Monday morning. Then I have to call them at 7 am Monday morning and beg them to schedule Ada ASAP.
While 2 doctors were working in putting the feeding tube back in her stomach, me and 2 nurses were trying very hard to hod Ada's down. She was mad, scare, and hurt at the same time. I think she almost, almost cry. Unsuccessfully, the doctor had to put the catheter tube in which mean it needs to be replaced later. Exhausting and angry, Ada let me know that she wanted to get out of bed and sit on her chair. She calmly pointed to her shirt and pants at the end of the bed. I put her clothes back on, then she pointed to her shoes and lifted up her feet for me. Then she pointed to the door but we can't go home yet because they wanted her to get and X-ray. The technician was very kind, I think she remembered Ada. The nurses came back and laid on top of Ada. Another round of wrestling with her. I was in tear, no, I really cried.
Keep in mind that by the time we walked into the ER till after X-ray, it had been 5 hours. What did we do in between? Well, we played games on iPad, I blew up the latex glove and let Ada talked with the hand, I folded the papers into airplane, I pushed her back and forth in the hallway in her chair and constantly asking the nurse to get things moving at the same time because last time Ada had water was at 9 am and it was now 6 pm. We both very, very tried.
Finally, I saw Ann Huber, the ER Angle, she came to the rescue. She got us out of there in 15 min. I talked briefly with Ann about why can't they sedated Ada down here in ER and they can't because it is a simple procedure, well, for others not for the fighty, mighty Ada.
The question is Ada will have surgery on Wed and I wonder if she can be sedated on Monday then again on Wednesday.

Uh and Ah

Only if you could be in bed with me and Ada at night, you would be able to hear the sound Uh and Ah in the dark. It is my little girl, who just turn to me, pads me on the shoulder and let me know that she is awake. Then she giggles happily, just little girl who discovers something cool she can do. So I just Uh and Ah along with her till she goes back to sleep.
She is also be able to tell us more that she needs to go to the girl's room or need to be changed. She is able to open her left hand more and more to give us Hi-5. She gives us a kiss when asked. Is that counted as"Following command"?
I also found healthy soup in a box that I've been given to her in the evening. The same soup that cost $5 at Meijer, only cost $2.50 at Trader Joe. I could have cooked for her but I think the soup is good enough. She also eats some Freeze dried Strawberry that I added to the Cheerios. Only it cost $5.89 per bag at the health Food Store, so she can eat the whole bag in one day.
Ada will have her surgery on her teeth next Wednesday. I am quite nervous, since I don't have any idea of how to take care of her after surgery. They can keep her 23 hours at the hospital as outpatient.
The weather has not been nice, rain and cold kept us inside. Lately, Ada likes to take a long nap. Sometime she naps for 2-3 hours. Good for her, but not good for me. because I have to lay down next to her and she will put her legs on my legs. All I have to say is, it is like having baby Ada all over again. And I love it.

Update on Ada

I have not written for a while, please accept my apology. Ada is fine and she is as happy as she could be. There are a few changes such as Ada has a new nurse which means it will take time for them to adjust and understand each other. So far so good. We go out as much as weather permitted. She likes to be outside and will point out that we should go outside on sunny day only we can't because sometime it is so cold. She is able to let us know more of what she want. Ada will have surgery at the end of the month for her wisdom teeth. they will take out all 4 at the same time. I don't want to think about it, not sure how she will react after surgery. We go to see Speech Pathologist twice a month now. We play games and teach her how to follow direction. She is still making progress and that's more important than anything. Since I sleep with Ada, on the night that I can't sleep, I snugged in the iPad and played games under the blanket. This doesn't go well now when it is warmer and I can't stay under the blanket. So I let her watch me play "Angry birds". Ada will laugh and laugh at everything till she took the iPad away from me, which is the indication that she wants to sleep now. And she wakes up smiling every morning. Last week I had to pick up my friend from Thai temple in Huber Height, Ohio. I decided to take Ada with me. She sat quietly in the car eating her Cheerios for an hour then started to pad her hand at the door. She hasn't been in the car that long. We went inside the temple and talked to the monk who blessed her. She was laughing and happy. I think, some how she likes it when when someone speak Thai to her. Ada is napping now and she will let me know as soon as she wakes up. We are dealing with "separation anxiety" because someone is always in the room with her, so she doen't like it when I step out. Sound like a 3 years old, isn't it? After all, she is my baby and she is growing up.

As seen on TV

There is a new TV show on USA network called "Fairly Legal". A young, beautiful lawyer, Kate, turns Mediator because she wants to do the "right" thing. Last week episode was about a husband and wife sued a company for head injury and brain damaged to husband. The wife did not want to settle. Husband looks fine but something wrong with him. His personality had changed, seems like he was a totally different person before the accident. To make a long story short, Kate's conclusion was that the old husband had died, but the wife should learn to love again, with this new husband.
It makes me think! I am not sure if I should look at my life this way, but this Ada that I have is not the same Ada I used to have. She won't ever be the same.
What do you think? Are you agree with Kate? For 3 years, I have never thought of it this way. My father passed away a month after Ada's accident. I won't ever seen my dad again. Ada is still here but she is not the same Ada. I neither took time to mourn the death of my dad, nor the death of my daughter, Ada. May be it's time. So I can let go and learn to love this daughter, the one I still have. There is a lot of "Ada" left in her; her personality, her smiles, her scent, the way she tugs her hair behind her ears. There are a lot to love about this young lady.
I think Ada's brain had gone blank, and she has to re-learn just about everything. She is doing good. She learns to give us a kiss and she let me give her a hug and kisses and let me lay down beside her. Oh and she just learn a new thing; angry, aggression, huff and puff. I say it is a good thing, only disadvantage is that she takes it out on me most of the time.
Next month she will have a surgery to remove all 4 of her Wisdom teeth. I am not so looking forward to it.
Ada is healthy and happy and still learning new things, new skill, how to think. We visit her Speech Pathologist twice a month now.

Ring a Day project

Last year I participated in a project on Flickr called "Ring a Day". The objective was to make one ring each day for 365 days. There were almost 400 people signed up and only 14 finished the project.Some of the rings I made did tell the story of Ada and what happened to her that day.

The first one is a "Cheerios" ring I made on her Birthday.
The second day was when Ada and I fell in front of the house and I scraped my fingers.

Next one was her name tag they put on her wrist when we were in ER. Sometime we had to wait so long, I blew up the blue rubber gloves to help entertain Ada.

The next two were the "No known Allergies" tags. We had to go back twice that day to get her new feeding tubes.

This one is part of the feeding bag that hook up to Ada's feeding tube.


This last one is very dear to me. It was ring#364.

Sometime you have to work on what ever life thrown at you. With a little bit of imagination, lots of love and a sense of humor, I had survived another year.