Sunday, February 23, 2014

Lack of Sleep

I am not sure which one will be harder, waking up during the night with Miss ada every 2 hour because no medicine will keeps her sleep through the night, or I have to except that i cannot do anything about it and arrange for a nurse to come in at night to be with her, so I can sleep. It had been more than 2 years now and only it is hard on me physicly, but also mentally. 
And trust me, we had tried just about any medicine known to man that would help with sleeping. It is normal, like 99.9% of people with brain injury to have ploblem with sleeping. I just hope that she is the 0.01%. More option will be explored to help Ada, and me.
I do not need a lot of sleep, may be 5 or 6 hour straight would be enough, but waking up every 2 two hours is killing me. As you can see it is 5 am now and I cannot go back to sleep because I know she will wake up again soon.
Overwhelming with such hopeless feeling right now.

Friday, January 18, 2013

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

Thursday, January 3, 2013

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.

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


Friday, September 7, 2012

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.


Monday, May 28, 2012

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.

Thursday, May 17, 2012

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 :)

Tuesday, April 17, 2012

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.

Saturday, April 14, 2012

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.