sleep

Sorry I haven't written for a while. There is so much going on and with all the snow and bad weather, it is hard to get everything done when I wanted too. Also every time I mention that Ada had been sleeping well, next thing you know, she started waking up at 4 am. So, we have been struggled with her sleeping. I got new prescription for her to help her sleep. As soon as the medicine gets into her system, she looks so sleepy. We put her to bed and 4-5 hours later, she was up and want to get out of bed. Mom did not get much sleep either. So we increase the med only to find her to be sleepy during the day. But, keep my finger cross, she had been sleeping well without any medicine for a few night now.
We went back to see Speech Pathologist, finally. She was pleased with the way Ada can pick up the picture of the Cheerios from the board and gives it to us. We hope that later on she can learn to pick up others pictures of things that she wants and let us know. So far, so good. The therapist also put Ada in front of the computer and played some game. The Red button was connected so Ada can push it instead of using the mouse. It is not easy and she looked back at me and tried to get away but she did finished 3 games so we are going to purchase the game for her soon.
She also continue to walk around the house and we let go of the walker so she can learn how to balance herself (we still walk behind her). Hopefully it will be warm soon so we can go outside more.
I think Ada has a few basic needs; eat sleep and change. So far she is able to let us know what she wants and that has made her very happy.
She lets me kiss her a lot more and she also kisses me back. I am so long for that. She also makes longer eye contact and pay more attention when we talk to her or play with her.
Mom need to catch up on her sleep and her works. Dad is still out of town. Ada and the dogs miss him a lot. LOL

New Augusta Public Academy - North

Mr Ed Staubach, an Orchestra teacher from New Augusta Public Academy - North came to deliver a big card made and signed by his students, along with a check from their fundraising. Mr. Staubach taught at Pike High school before he came to New Augusta. He taught all my 3 children. Ada, in particular, had a privilege to play violin for the "Crimson Red" while in High school.

Mr. Staubach came to see Ada quite often. He was very pleased to see her walk out of her room (with her walker). It means so much to our family that he still care about Ada and so do his students at school. I'm glad they still have music program at school. and how lucky they are to have such a great teacher.

Ada is happy and laughing a lot. She likes to watch "Spongebob" and "Family Guy". They were her favorite shows before. A few problem with her sleeping pattern, but we are working on that. Can't wait till it gets warmer outside so we can take her out for a walk. Ada also using her hand jester to tell us what she wants. Even though we have to guess what she really wants, it is the good sign.

We also watch MJ's video "This is it" and Ada likes that too.

Thanks again, New Augusta -North

A calm after the storm

We have been dealing with Ada being grumpy and restless and sleepless for a few weeks. Quite stressful for the caregivers, I might say. It is hard to tell whether she is in pain or she wants something. There are a few things that happened though. First, she still sores from her broken arm. Second, she had bladder infection. Third, the feeding tube that came out. Forth, she was grumpy before her period. Fifth, must be a "storm" in her head that keeps her from getting a good sleep.
She had many "storm" before. The first time was a month after the accident when she was shaking and sweating like crazy and she did not get much sleep. A few minor "storm" after that. This is not a medical evaluation by all mean. Just me and my opinion.
We asked her doctor for medicine that will help her sleep. It is a strong med, one that would knock me out for a day or two, but it wasn't work on Ada. And if she did not get enough or good sleep, she will be grumpy and not able to concentrate. That apply to me too, since I am sleeping in her room.
Finally, this past 2 nights, we had good sleep and she is back to be happy and giggling again. There is some good after the storm. Some new skills, new things that she can do.
Karec and I can rest a little bit before the next "storm" come.
V8 is a good thing. I gave Ada 2 serving a day. I tell her it's time for "Bloody Mary", and she smiles.

Happy Birthday, Ada

We had a Birthday open house yesterday for Ada. She is turning 25 and it's time to get friends back into her life. Rachael has been a big help. We weren't sure how many people will come. I was hoping for 30, may be.
May people came, mostly Ada's Friends, my friends too. Between cooking and serving food, I showed off my jewelry and sold a couple of things. Rachael and Karec were taking care of Ada. She gave us big smiles, laughed, shake hand and basically looked very happy.
Lots of love, lots of present. Thank you, thank you, thank you.
The food was ok, I could have done better, next time.
For those who cannot come yesterday, you can still come and visit Ada at home. She loves to see other people beside me.
Last week I join a group on Flickr called "Ring a day". We have to make a ring each day and post the picture in the Flickr page. here is the ring I made yesterday as a tribute to my Cheerios Queen. She still eats Cheerios, lots of them.

Pictures from Ada's BD party are posted on my Facebook page.

Happy, again

After a few hospital visit, Ada is back to normal routine. In the morning, after shower, she walks around the house, stops at the fridge to look at some, then let go of the walker when she walks pass her room. I finally have to cut out a soft wrap with Velcro to put around her wrist. Once she learns that she cannot let go of the walker, she just proceeds pass her room. She still enjoy her Cheerios with a little bit of Dried Yogurt piece (baby food). V8 seems to be the answer for the trouble she has in the morning. Only if she can sleep in a little bit because I like to stay up and work after she goes to bed and she is up at 7 o'clock every morning.
For me, I learn to "not thinking too much" or complain about "same problem, different day" like my friend put it. Taking care of Ada became a routine. I just do it, because I love her, not because I have to. I learn to leave home during the day or go up stair to take a nap. (Oh boy, do I miss my bed). I search the Internet for the answer, for the connection with other TBI survivors and caregivers. I sit at my table and work on my things. I don't get angry if I had to take care of Ada all day. I am stronger and healthier by lifting and transferring Ada. Communication is much better, both way. I am sure, someday, Ada can figure it out. I just have to be patient. Ada talks with her eyes.
I love all friends on Facebook, whom, most of them, I've never met. They always there, giving me kind words and encouragement. Be friend with me on Facebook; Ponsawan Sila.
Ada's Birthday is coming up. We will have a party this Saturday. Can't wait to see who will be here. At least the weather is going to be fair.
Archie went back to Bloomington. He needs to get on with his life. Arthy is still around. He sits and play with Ada more. She also likes his company.

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.