Thursday, January 3, 2013


2012 has been a fun and interesting year, with some good news and bad news, some happiness and some sadness. Let's start with news from Ardis, who was diagnosed with cancer. The good news is they caught it early and she had surgery, chemo, and is expecting a full recovery. She also has 2 grand daughters which make me super jealous.
Ada continues to make a snail's pace progress; she can express her emotions and finds ways to let us know. She is more alive than before, and most of the time, she is happy. We do silly things to make make her laugh. She gives us kisses and lets us kiss her back. We were blessed to have new nurse for Ada, Joyce, who is such a joy to be around. She likes to talk and play with Ada, and takes good care of her. I hope she can stay with us for a long, long time. I was able to clean up Ada's room upstairs and make it into my studio. I am able to leave Ada with Joyce and go upstairs to make my beads and jewelry. I'm also able to go out of town with less worries.
Ada also received a TBI Waiver which means she gets more services. We have a behavior therapist who comes here and works with Ada once a week on any issue or concern that we have for Ada. Basically, anything that would make our lives a bit easier. One difficulty we've had with Ada is taking her out in public. She gives us a hard time sometimes. Dad and I will take her to the grocery store but we can't stay very long. Ada would get fussy and point to the door and try to push her way towards the door. After a few outings with her therapist, now we can go shopping at the grocery store, at the mall, peacefully. We took Ada to McDonalds one time, she did ok. Then we had lunch at Sawasdee and Ada did great. There are still a few things that we are working on, but so far so good. Ada is also eligible to attend Adult Day Care. The subject has come up many times, it's just that I don't want her to go. Not yet, may be in a few months. She is still my baby.
Earlier this year, Ada had a small sore on her head. It was on the seam line on the left side where she had surgery. We put medicine on it and it got better but didn't completely heal. Then we found another one, and another one. We went to see her Family doctor, who sent us to see a Dematologist. With antibiotics and some cleaning solution, the sores look better but not completely healed. The culture sample did not show any bacteria or anything. Different antibiotic was prescribed but it is not getting better, so we were referred to see Infectious disease specialist who happened to be the same doctor who worked on Ada's case since the beginning. Doctor sent Ada for CT-Scan which showed no infection on skull. That's great news because if her bone flap was infected, my lawyer would get a call from me.
Now what? He suggested that we call Ada's Neurosurgeon who put the bone flap back in on July 2008. So we called him only to find out that he was about to take a position somewhere else, so Ada had been assigned to another doctor. After a long wait, we finally get to see a new one. The appointment was at 4.00 pm, we went and waited in the room for 45 min. The whole time me and Joyce had to entertain Ada, who doesn't like to be in the small rooms, at the end of an afternoon. The guy finally came in with 2 young interns, which could have been fun for Ada, but he barged in trying to touch Ada's head. He got whacked, he was mad. "I can't help if she doesn't let me see it", the doctor said. Then stop trying to touch her, Ada doesn't like to be touched, idiot! Everybody got mad, Ada was mad.
"When was the last time she saw her Neurosurgeon?", he asked.
" Late 2008" (What's that had to do with anything? I wonder)
"That long? You should see your doctor regularly" (Stop trying to put a blame on me)
" I have never been told that we should see Neurosurgeon regularly, I was told to call when we have any problems, and here we are, with a problem."
At this point, I was really mad and started yelling. You might need to use your imagination because I don't do that often.
We finally calmed down, and he was able to examine Ada's head closely.
"I think this is very serious, we might have to open her skull and take the bone flap out, it might get infected"
I started to cry, I felt that bad. I have never cried in front of Ada. Damn it.
He told us we need the CT Scan right away. Can you believe it? The idiot hasn't look at Ada's chart at all. We had it done 4 weeks ago.
The guy mumbled, told us he will go look at the result, then came back with another doctor who took one look at Ada head and told us that she needs to see Plastic Surgeon. The skin on her left side of her head was so beat up and wounded that it neither can be regenerated new skin nor heal itself. They will take skin from the other side of the head and replace it. It would require a few surgeries, and that is ok by me.
We got out of there as quick as we can. Swear not to go back there again. Such a relief to know that some doctor, out there, knows what to do with Ada's wound. We have been to too many doctors and never get the right answers, till now.
We will see Plastic Surgeon in 2 weeks. I think this time I will ask to talk to the doctor first before he comes into the room.  I have a special child who needs a special treatment. Ada looks normal and pretty, sitting on her wheelchair.
Speaking of "looks normal", when I posted Ada's pictures, I tried to posted the best pictures of her, ones that she laughs or smiles. Keep in mind that Ada has Severe Brain Injury. Damaged Brain won't grow back or heal itself. The brain might rewired itself but no scientific data to support that.
But we can't loose hope, right. For me, I just want her to be happy. She needs 24 hour care. We have nurse during the day for 8 hours, the rest of the day, Ada is with me.
Thank you for your support through out the years. I will report back next year, meanwhile, please follow me om my Facebook page.
And I am still making jewelry, if you are interested.

Rachel Watson just bought a house in our neighborhood, and she comes to see Ada almost everyday.
Much love to all.


prakaj said...

"Can't loose hope",absolutely right.Hope&Pray for you all too,Happy New Year 2013

Anonymous said...

Hi Ponsawani, Back into the the swing of things. Thank you for the 2012 capture. How wonderful to remember all what he has accomplished, for you a snail pace, for us, amazing! What a scary moment with the young doctor...Glad no skull surgery is necessary...sorry for the plastic surgery. Such a beautiful face, I hope the doctor does a good job. Wish you the best in 2013, lots of health for Ada and all of you and much happiness. Love you lots, hugs!