Surgery

Ok, Ada does need surgery. We went to see a plastic surgeon, who was very kind and very nice to us. He said Dr. Cohen, the Neuro Surgeon wrote a very nice note to him about Ada. He better!

The surgeon thinks there must be something wrong with her bone flap, either an infection with the bone itself, or a nut or screw that holds them together. So the plastic surgeon, the neurosurgeon and the Special disease doctor will team up and work on Ada's case. They said they will take the time and get it right, so we don't have to do it again. Oh well, according to the doctor, they can't guarantee that this won't happen in the future. But they will do their best to fix it.

I am at peace, whatever happens, happens. I am ready.

The one thing that worries me is Ada's nurse, Joyce will not get paid to be with Ada at the hospital.  Ada's insurance only pays for a nurse to work at our home. And I think Ada will be in the hospital for a while. I will need the help, and Joyce needs to get paid.

We are very lucky to have Joyce as Ada's nurse, not only does she love and take good care her, she also gets along with the family. Ok, the dogs love her because she always brings them leftovers. I can leave the house and go away without worry when Joyce is around. I totally trust her that she will take good care of Ada. Joyce cares for Ada during the day, Monday to Friday, and we have Nina here on the weekends.

I would love to take care of these two ladies. With your help, I could be at ease during Ada's surgery and hospital stay. Her doctor hasn't scheduled the surgery yet, but it will be in a few month.

My friends, if you can help me out, please donate some money to help pay for the nurses, who really, really care for Ada. I know they would come to take care of Ada even though they won't get paid. Click on the donate button on the right. I would appreciated all the help I can get.

-Ponsawan

2012

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.

http://www.facebook.com/ponsawan.sila

http://www.facebook.com/pages/Ponsawan-Sila/478456348832044

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

Summer time

Today we went to Holiday Park. I remembered those good old days when the kids were young, we went to Holiday park often. They would race down the trail that lead us to the river below. I slowly walked down the terrain. These day Ada and I can only walk around the park, on the pavement since it is not easy to push the wheelchair on the gravel.
We take her to IMA a lot since it is so close to home. Sometime we took her to the canal downtown. Dad like to take us to Ritter for frozen custard, or a short trip to the grocery store.
For us, taking care of Ada seems like normal. We all get use to it. It is becoming a routine, Ada is the center of the universe and she knows it. She likes to be with her dad and her brothers, as long as they keep giving her Cheerios.
I met an old friend at the store the other day, she complained about me not blogging. Sorry about that. With my 998 friends around the world on Facebook, it just easier to post on Facebook and be done with it. So, if you are on Facebook, look me up - Ponsawan Sila.
This month, Ada just received a TBI waver which will allow her to get more services. Right away, we were interviewed by the consultant from St. Vincent New Hope about the ฺBehavior Support services. The lady that came for the interview made me cry, tears of joy. Finally, someone who understand and know how to work with Ada, and me. Finally, we will have a therapist who will come here, at home, once a week, to work with Ada so I can stop being Ada's therapist. I just want to be a mom. I just want to be Ada's mom, to love her, take care of her, make her laugh and be happy.
I just want Ada to be happy.

Stern & Empathy

'I need to be stern with Ada'. This was the suggestion from her Neuro-psychologist. Every time I have a question, concern, or when there is something new that Ada can do, I go talk to Dr. Bachause. She doesn't have all the answers, but in the end she makes me feel better. I told her about the visits last month to see the dermatologist. The first time she was calm, but 2 weeks later when we went back, she threw a fit. She didn't sit still and tried to get out of the room. I could tell she didn't want the doctor near her and I couldn't find a way to calm her. I gave her a hug, which usually works, but she grabbed me and stood up and pushed me out the door. It was... difficult. Dr. Bachause asked whether there were any changes. Of course, we got new nurses for Ada. Like a kid with Autism, she said, Ada doesn't like change and might react by withdrawing or throwing a tantrum. Ah Ha! Finally, someone who agrees with me.  We try to keep her daily routine the same as much as possible but when her nurse quit and the new one come along, it was beyond my control.

I need to be stern, I need to give her tough love which is hard to do. I spoiled my kids and don't know how to do it the other way.

Dr. Bachause also talked about "Empathy", something that we need to teach Ada. She needs to learn that mommy needs to go to the bathroom sometimes and leave her alone. Mom will be right back so she should not throw the bowl of Cheerios on to the bed, otherwise we won't take her out for ice cream in the evening. This is complicated and I need to figure it out.
You see, Ada is like a toddler, even though she has the ability to learn, but unlike toddlers, whose brain are still developing, Ada's brain is already full. The only thing we can do is to force her to learn and show her the way, over and over and over until she gets it.
It make sense to me.
I always leave her office with mixed feelings. I got the answer to my question but at the same time, I have to accept that there is no easy solution and it is going to be a long road for me and Ada.
Together we will, I just need some support and kind words once in a while. Thank you for reading.

Brothers

On a nice spring day, we like to take Ada to Indianapolis Museum of Art. It used to be their play ground when they were kids. Lots of good memory there. The Museum ground is open from dust to dawn and there are several small gardens hidden with in the museum ground.
This event always involve Gymnastic move of some kind.. The kids used to do cartwheel racing from one end of the lawn to the other end. Sometime they will do back hand spring, standing back tuck or some crazy move. We sat Ada on the grass. She was just happy to be with her brothers.

For me it's all about flowers.

P.S. Autism walk last month was cancelled due to heavy rain and they had scheduled the walk on Sat., June 9. You can still join us or send donations :)

Walk now for Autism Speaks

Ada and I will join Linda Weeks and her family at "Walk now for Autism Speaks" on Saturday, April 28, 2012, at Garfield Park. Linda is a Polymer Clay Artist just like me. Her grand daughter, Vivian, is Autistic, so, we share the similar but different frustration and concern about ours love one.
I have never paid attention about Autism much since Ada has TBI, but the more I look at it, the conditions are quite similar. For example, there was a story on 60 minute about how Autism kids love to work with the iPad, and so does Ada. It help them communicate as well as learning new things. I mentioned this to Ada's doctor who still not convinced and thought Ada's condition should be more similar to patient with a stroke. Not really, I don't think so.
You know me, I don't always agree with the doctor, most of the time I had to take the matters in my own hand since they had no idea how we should treat Ada. And I am her mom, right? I should know better.
When the therapist labeled Ada with " behavior problem", I see it as the "typical behaviour of a toddler". For example; one time I was talking to Ada's therapist and Ada started to throw things around and pushing her chair from the table, that's remind me of when you go to the grocery store and stop to talk to someone you know, suddenly, your kid start grabbing stuffs off the shelf or throw things out of the shopping card, that's exactly what I think. Typical, isn't it? Well, at lease my kids did that. LOL
Another big concern that I found very similar is that we all worry about who will take care of our kids after we were gone. Ada doesn't talk, she doesn't like to be in a small place like Doctor office, she doesn't like to be at a noisy, busy place, and yet, I can't keep her in the house forever, she must learn and experience the real world.
I am not into the idea of sending her to Adult day care just yet, but to join this walk, will give Ada, and me, the opportunity to be among others who won't judge, won't stare, won't look away, don't pretend that we are not existed.
HERE is the link to Ada's page. http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=1002635&lis=1&kntae1002635=16B83CA1E1EE48C2B90171D3B31EBB82&supId=353450627
If you can donate a few bucks to out group, I would be greatly appreciated it. I am looking for ward to be out walking with other family.

Food for Ada

Ada still has her feeding tube, which is good for us. All the medicine can be given through her tube with no fuss. She doesn't like water in her mouth. Even though she can swallow most of the food she eat, some food just got stuck on the mouth ceiling, or between her gum line or under her tong. At one point, she was able to eat many things, but then she decided to eat just crunchy things, and we can't force her to eat anything else.
Here is the list of food we give her:
A big cup of V-8 in the morning. I try to give her some protein drink, but it creates the problem of constipation. We don't want that. Then she eats Banana Nut Cheerios all day. Some day she eats the whole box, so we have to watch how much she eats. Cheerios is the only cereal that melt in your mouth, so if she hasn't chew or swallow, it will melt and that prevent her from choking. Kik is good too, but its round shape make them roll around and hard for Ada to keep it on her hand. The doggies will come and clean up the floor, but I'll stick with the Cheerios. Occasionally, we gave her Baby Teddy Gram and Reese's pieces too.
I made soup for her now for supper. After trying a few vegetables, I found that Butternut squash is the best for her to absorb and digest. So each week I will make Butter Nut squash soup with carrot, some chopped up greens and tofu. Then puree soup in blender, pour into small different containers, then freeze them for later days.
She also received 2 or 3 cans of formula during the day depend on how much Cherrios she eats, and plenty of water.
She looks healthy, her skin looks good, her hair getting long and her nails need to to be trim each week. We brush her teeth twice a day and has her teeth clean twice a year.
After all, I am trying to keep her weight at about 120. Over that I will have trouble getting her in and out of the chair and pushing her around.
That's all for today.
For Ada's friends: Don't fell guilty that you haven't been here to visit her. I think she won't recognize any of you, I don't think she even remember me. But it is nice to hear that you still thinking of her and always have something nice to say about my Ada. I understand you guys are busy with your own lives, jobs, family life and so on. Rachael is able to re-introduce herself to Ada and she is able to visit Ada once a week.
It would be nice to hear from you guys from time to time. It would make me happy.

Spring time

We are taking advantage of the unusually spring time this year and Miss Ada can be outside almost everyday. She wakes up at the crack of dawn, which means she will wake up 5 to 10 minute early everyday. We get the big, heavy communication device from her therapist to use at home. It is like a touch pad so she can touch the picture and tell us what she want, or what she wants to say to us. there are many categories to choose from. We still have to guide her to push on certain picture, but she is learning it as fast as she can. Not as fast as her therapist wants her to do, but we can't rush Ada. She will do it at her own pace.

Nurse will take her out and go around the neighborhood and I will do that in the evening. Sometime dad will take us to the ice cream shop. We park at the spot where she can see other people. I was fascinated to see her play with her dad. he will ask her to hit his face with her left hand, the bad hand, the one that she can barely move, but she is able to get it as close as she can. Sometime she will use her right hand to push her left hand so she can get his face. She is thinking, isn't she?

I just realize that the lat time she had her feeding tube replace was a year ago. Gee! why don't they put this kind of tube in for her long time ago. for the first 3 years, we had to replace it every 4-5 month. Those trip to ER sure made us miserable. Finger cross, I hope the tube will be good for a long time.

Ada has her good day and bad day. Sometime she just happy and giggles all day. Sometime she will be grumpy and throws everything at me. I left the room for a few minutes and she would threw the bowl of Cheerios on our bed. Bad kitty!. She doesn't like to watch TV as much, I guess she'd already watch every episode of Spongbob, iCarly, Victorious and Big Time Rush.

We go to bed early, about 9 pm, because she is tried and fussy around that time but she doesn't want to sleep just yet. So we will be in bed and play games on iPad for a while.

My leave her in the morning when her nurse gets here and go to workroom up stair. I did get a lot of work done and be able to put more thought and design into each of my works. The latest one I am quite proud of. Check out my blog at www.silastones.blogspot.com
I also make soup for her now. Butternut Squash soup is best for her, and I throw in some chopped up Greens and tofu. She still eat almost the whole box of Cheerios everyday so I have to watch her weight.

Few minor not so good thing is that she has a big sore on her head along the staple line. It must be from in grown hair. Can't do much anything much about it. She is taking antibiotic
and it is healing now. Good thing she doesn't scratch it because it is on the left side of her head.

That's the report for now :) Oh, I will have lunch with Ardis on Tuesday, I am glad that she recovered quite well from the surgery and she also became Grandma last month. She lost quite a few pound and can't eat everything just yet.

Moving forward

The Purple Room up stair, used to be Ada's room. I painted it purple because she always has trouble sleeping. I thought by making the room darker might help, and it did. I painted it while Ada went on a field trip with her Girl Scout troop. She had a big Queen size bed so all her friends can hang out when they came over.
The past 4 years, I've been avoiding the Purple room. Ada and I sleep down stair and I have no reason to go up stair anyway. A few times I went in and packed her stuff in a box and put it down in the basement. I cried every time I touch her stuffs, her clothes, her jewelry, her diary, notebook and all other things.
I finally empty the room and asked Grant to come over and paint the room. It was not easy.

Now, Purple room no more. It is light purple-pink. Very lovely color.
I am planning to use it as my studio since I have so many projects on my table, there is not enough room to work. I spread out to the dinning table, but have to pack and put it away everyday. I hope being up there will help me be more productive and work faster since I will have everything I need in one place.
I moved a few boxes in today, it wasn't easy. I end up sitting here and cry about it. Now I am not sure I can sit in that room and not crying.
But life needs to go on, I need to move forward, to the next chapter of my life. Having a studio will do me good. I have many things I like to do and the creative juice is flowing. Time to let it out.

Ardis

Most of you who had read and followed Ada's blog since the beginning, must have read and known about Ardis. Ardis and I hadn't known each other long, we just met a couple of times before Ada's accident while I was working at the restaurant and Ardis would come in and had lunch with her friends. Her son, Kyle and Ada had been dating for a short time before Ada decided to go to Paris to see David. Ardis and Kyle rushed to the hospital as soon as they heard the news, and since that day, Ardis had been with us at the hospital, at the nursing home, at RHI almost everyday, for the next 8 months.
I gave her my phone and she answered it for me. She told people what was going on while I sat there, lifeless and useless. She made sure I ate, slept and went home. She paid for the meals, she called all her friends who could help us. She talked to the doctors, nurses, and then explained things to me in plain English. She went with me to the look at the nursing home before we moved in. She made sure that they took good care of Ada and me. She represented us in case of Medical Emergency. She stayed with Ada at the nursing home while I went to my dad funeral in Thailand. Everyday, I can count on seeing her smiley face at the door, bringing me donuts or lunch. I called her in the middle of the night when Ada was so sick and we ride the ambulance to the hospital together. She yelled at the doctors, made them come see Ada. Sometime, I wonder, who is this woman, and why she always here with me. I barely knew her. She must be my angle, my friend from the past life. What did I do to deserve her friendship, companionship, her love and care?
We spent a lot of time together, Ardis and I. We talked, and talked, and laughed and cried a lot together. I don't think I could have make it without her.
When we took Ada's home, we hadn't seen each other much. Ardis lives on the other side of town and she had been busy taking care of her family. Me, on the other hand, was trying to stand on my own two feet, so I didn't answer her phone calls.
Once in a while, we talked, went out to lunch, but I knew she has been busy.
In December, we talked via facebook and we went out to lunch. It was a restaurant near the Nursing home that we used to stay. She took me out to lunch one time and all I could remembered was mac&cheese. We had great time, talking. Her son, Sean, got married and she is about to be a grandma. Kyle, who went to Korea for a while is home with his girlfriend. Life is good I asked her to come to Ada's Birthday party in January. She said she will bring the whole family. I always want to cook for her, so I made a lot of food that day, but she texted me that she didn't feel good and cannot come. I was disappointed.
Two weeks later, she left message on facebook to tell me that she had turned yellow and was diagnosed with growth in the bile duct of Pancreas. I google it and my heart sank, I cried.
I should have answered her phone call. My stubbornness was to blame. I should have call her or have lunch with her more often. Oh well.
Ardis will have surgery on Monday. I am planning to be with her as much as I can, if she needs me. I just can't stand the thought of loosing her, not now.
Pleas keep Ardis in your thought and pray. She means so much to me and Ada.