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.

Sunday, April 8, 2012

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.