Thursday, October 30, 2008

I wanna hold your hand

Remember when I told you that she does not want to be touch, especially on the right side of her body, especially her right hand? I figure that if we offer her my hand by putting it near her hand, she will touch it. Not only that, she shake hand with her friend, Merisa, who came to visit last week. Little by little, she start touching me, she grabs toys from my hand and grab the cones from the therapist.
This week, we keep working with her walking, then, Connie, her PT had this crazy idea to see whether she can walk without the walker. Now, she cannot walk by herself yet, I was holding her elbow and her right hand, Connie grabs her with the belt and her hip. I mean, she actually walked across the room. I can feel her determination, her perseverance and her willing to work hard, in order to walk and stand up tall, again.
She also glance her eyes to the left side more and more. Connie think her left side had been neglect and she does not know that there is such thing as left side of her body. We hope she will be able to use her left hand and the left side of her body more. Then she can balance herself better when standing up. Everything Connie said just make sense to me. She does have the answer to all my questions. I am able to sleep at night knowing that someone really care, understand, and have years and years of experience working with patient like Ada and they both get along well.
Ada keeps surprising me of what she can do everyday.
Remember I told you that I will get help from Home health care Company who will send nurse-aids to our house and help me taking care of Ada so I can have time for myself. Well, last month, I got total of 4 hours of help. Then another company has been assigned to Ada and they sent a nurse last Monday to help me with a bath. She did not want to come back. She told the company that Ada does not want her to do anything. So this month, I got 1 and 1/2 hour of help. I suppose to get 60 hours a month.
I do tell that lady I will vote for Obama (I would if I could). Do you think she does not want to come back here because of the political reason, or she really doesn't want to drive 45 min. everyday to come here? I hope they can find a replacement soon. I need time to work on my jewelry. I had a big show at Eitlejong Museum early December.
Well, I still did not get the bed, the commode and the wheelchair for Ada. (We got the loan ones). I gave up calling those people. I don't want to be angry, yelling and upset because, most of the time, I cannot do anything about it. Just let me take care of Ada. The case manager at the Rehab clinic is working on that. It is not her job, really, but Ada has so many angles in her life that show up when she needs one.
A few friends stopped by this week; Nate Welch, Rachael Watson and Eric Holme. She seems excited about the visit today despite having a tummy ache. And of course, Ardis always here or just a phone call away when I need help or just need someone to talk to.
I hope you happy with Ada's progress report and hope you have time to stop by and say hello.

Saturday, October 18, 2008

The Art of "Walking"

We take it for granted, walking, because we learn to do that when we were so young and cannot remember how difficult it was to learn how to walk. Eliana who is 14 months old starts to walk, a few steps at a time then she will sit down and start a few more step. One foot in front of another, we said, but that is not so true.
On Friday, PT put Ada on the rail and she be able to stand up straight. "Let's see if she can walk" she said. We put Ada in a walker, with PT hold on to her and I was on the floor make sure she move her feet, one at a time. Ada has to learn to shift her weight on one foot while moving the other foot. Then straighten her knee the bare her weight and bend her knee again to lift her foot. Her right leg is more active so she get a big step out of the right foot while the left foot is still dragging, but that did not stop her. She walked from the end of the room to the other end without stopping. She must be on her feet for almost 45 minutes.
So now instead of looking for Standing Frame, we might need the Walking frame because just standing around for Ada is not enough. She can do much more.
She is also able to pull herself up in a sitting position, on the side of the bed and transfer her from bed to chair is easier. Still, we are waiting to get the bed and a new commode. Any day now.
Today, I went to the Polymer Clay Guild meeting, and Ardis had, generously, come over to sit with Ada. While they were watching TV, Ada grab the remote control from Ardis's lap and threw it on the bed. Ardis told her to do it again if she really did not like the show, and Ada did it again. Ardis had to change the channel.
Everyday, we celebrate what "else' Ada can do today.

Monday, October 13, 2008

Steven Segal

Dr. Steven Segal is Ada's new doctor. I am not joking. He was assigned to be her doctor, as of last Friday when we went to see Dr. Burns and found out that she cannot be seen by Dr. Burns. The company that works for Medicaid had assigned her to the doctor, who, had never taken care of the patient like Ada before, his office is so small, it was so difficult to get her in and out in the wheelchair, and he wants to see her every month, which is hard on Ada and us. He was nice enough to write all the scripts that we want for Ada. I had a list for him. Oh, well, like I said, people always blame Medicaid but the problems we had came from people who work for Medicaid. I don't know what kind of criteria they used, but I'm sure there is a doctor out there who can take care of patients like Ada., better.
Ada started PT today at Rehab clinic. She will be there 3 days a week only 1 hour each day. She is not ready for OT or Speech yet, but may be in the near future. Ada was standing on the Standing frame and PT challenged her to used her hand to hit the balloon and try to grab foam pieces and throw them away. She did just that till PT asked her to throw them in the box and she will let Ada sit down, and she did. We all laugh with joy. It had been a long day but it was a good day.
The case manager at the clinic is trying to get all the right equipments for Ada. We hope we can get a standing frame for her at home so she will be able to stand up on the day that she does not go to the clinic.
Seems like everyone is on the same page now, I can relax a little bit and take care of myself. We will get more help from CICOA.
Mike and Frances came from Florida this week. Mike worked a little bit with the drywall. He will help me plan the garden for Ada sometime. Mike is the only one in our group that still works as a Landscape Architect. Also Noy, Dirk and Eliana had been here every weekend. Dirk is helping with the paint job while Terry putting the cabinets together. The remodeling project is still going, if you can lend a hand. Abby came by and talk to Ada. Her eyes and her face lit up when she saw Abby. I know she cannot talk to you but please stop by, even for a few minutes, to say hello to Ada.
Happy to report the good news to you.
P.S. Thank you for everyone who sent the donations. May be we can get a Standing frame soon.

Friday, October 10, 2008

Dear Santa

Daddy found this item on ebay Item number: 110295589001
I know this is October, but, wouldn't it be nice to sleep on that bed?

Thursday, October 9, 2008

If I have a hammer, I'll hammer "Hamilton" in the morning

I'll hammer "Hamilton" in the evening too. This is the company that suppose to provide Ada with the hospital bed, the wheelchair and the commode. We received a loan hospital bed, the one with the crank so we can raise the bed up and down. By the time I have to bend down and do that, I might just go ahead and bend down to change Ada. My back hurt.
We got the loan commode, the one that can support 300 lbs, 6' 3" man, but Ada is only 98 lbs and 5' 6". It is so big that I was afraid she will fall down the hole in the middle, and it has the bar across from the back and we cannot put it over the stall.
We got the wheelchair that the cushion is about 4" short for Ada's leg, so she can easily slide off the chair. The proper seat belt is also needed.
Well, people always blame Medicaid for slow process, but in Ada's case, she got everything approved very fast, if the request had been submitted to medicaid office, that's it. After 5 weeks and numerous phone calls, we just found out that Hamilton hasn't submitted anything to Medicaid. So my daughter has to sit uncomfortably in her wheelchair, in the commode and I am about to break my back bending down to change her 6-7 times a day.
I always get a comment from friends that I am being too nice, being to patient, being too passive. How can "being so nice" turn out to be such a bad thing. And if people can't keep their words, what the "promise" is for. I did make phone calls to those people. Lots of phone calls that nobody care to listen. ALL I WANT TO DO IS TAKING CARE OF MY DAUGHTER. If I call and have to yell at somebody, I will be so upset that I can't even go to Ada's room. I don't cry in front of her and she knows whether I am happy or sad or mad. Why can't they just do their job, the one that they suppose to do, the one they get paid for to do so I can do my job.
I understand that I have to be an advocate, a voice for my daughter, but I cannot spend times on the phone calling people everyday. I feed her, clean her, bath her, give her medicine, sing to her, talk to her, transfer her from bed to chair, from chair to bed, help her sit up on the bed, make sure she does not fall down from the commode, exercises her legs and her arms (since she hadn't seen the PO and OT for 5 weeks), push her outside around the neighborhood, give her hugs and kisses, tell her how much I love her, oh, and I have to take care of my family too. I realized how much work I have to do if I take Ada home instead of letting her stay in the nursing home, rooming with the 85 years old grandma, I am willing to do all this and willing to spend the rest of my life taking care of her, if I have to.
Sorry for the weenie-weinie.

Monday, October 6, 2008

It's a wonderful day

We went to Rehab clinic today. Finally, Ada can get a treatment from therapists who specialized in Brain Injury patient. The clinic is much smaller than the hospital and one hour session had proven to be more sufficient time for her. The PT, OT and SpeechT had given me a lot of suggestion of how we can work with her. One thing that bought tears to my eyes was how we can help restored her self-esteem. Ada is more aware of what's going on with her and must be very frustrated that she cannot get up, or talk or tell us what she wants. Lots of good tips. Not only the therapist who wants to help Ada but also the case workers are eagerly wanted to help with Medicaid issue. It is very complicated, they told me. No wonder!
Another good new is Ada got approved for extra help. When you take your love one home, you help save a lot of money so they provide you with extra aids. We will get 60 hours a month with aids and I will be able to work and do shows or go out and have lunch with friends.
Now we are still waiting to hear about the hospital bed, shower chair and her own wheelchair to be approved. She is using the loaned equipment right now and they did not quite do the job. My life would have been a lot easier with proper equipments.
The DONATE button is working now. Kim Cavender wrote about Ada on her blog and many Polymer Clay friends had donated some money already. Thank you, thank you, thank you. A special thank you e-mail will be sent out soon.

Thursday, October 2, 2008

She laughs, and I cry

Despite some set back on therapy, Ada is doing just fine at home. She is calm and looks much happier. Her room and a new bathroom is almost done, just a few works here and there.
Everyday I face new challenge, some set back, some good news, some not so good. I found myself with sweeper in one hand, phone on the other. Sometime I feed Ada and talk to the phone. Yes, lots of phone call to make, lots of people I have to talk to during the waking hour. I am fine, not a complain here, it just a lot of frustrations when the things just "doesn't make sense".
Good new is Ada will start going to RHI Rehab clinic on the north side of town starting next week, with that, she will no longer get help from Home Health Care. I am not sure what is the real reason behind that but they are working to get it back to her.
I start increasing her feeding not knowing that I will run out of her food before I can order more. I had to run to RHI and asked Dr. Lipson for a scrip, faxed it in, so she can get more food. "You are her mom, just feed her" she said. That's make me feel much better.
Calling her Medicaid case worker one day and found out that they still have her address at the nursing home. No wonder we never get anything in the mail and I have to call another case worker because that lady is no longer taking care of Ada's case. I think there are 3 of 4 case workers who are taking care of her case now. The phone list is getting longer and longer.
After this is said and done, I might be able to write a book; "Medicaid for Dummy" LOL. Not that I don't get any help or advice from anybody. Ardis and a group of expert had been following up on Ada since day 1, still, the system had become too complicate and so much had changed, even those expert can't believe what we have to go through to get things done for Ada.
Now, the thing that keep me going is when Ada is laughing at me. Not a real, real, big laugh, but a small chuckles and a big smile. She does that when we sneeze or cough. I cry, but a tear of joy.