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.

5 comments:

Anonymous said...

Ponsawan,

One of these days you should write a book on the ins and outs of Medicaid. Make sure you have a chapter titled "Patience" because that is what I see you demonstrate everyday as you take one step forward and some days 10 steps backward. These four weeks at home have been full of joys of being surrounded by your family and the frustrations of having the full care and responsibility of Ada. You are doing a fantastic job and I am in awe of your strength. You will become the expert soon on the secret world of Medicaid...but by then they will change the rules once again
The best of everything has been seeing Ada continue to do well at home and ready to meet the challenges of further rehab. I know she is happy at home being with her family and in your care.

Love,
Ardis

Anonymous said...

I would cough or sneeze all day just hear her laugh.

Anonymous said...

I am so pleased that Ada is doing well at home. you are all amazing people so strong and dedicated This will help her so much, in her recovery.
I had a brain injury 10 years ago, and was on life support for 7 weeks, the doctors wanted to switch it off, and my husband wouldn't allow it.I had to go to re-hab for many many months, had to regain my memory etc. but hang in there, as I am leading a near "normal" life.I put my recovery down to my families support.
my thoughts and prayers go to you all.

Anonymous said...

I am so pleased that Ada is doing well at home. you are all amazing people so strong and dedicated This will help her so much, in her recovery.
I had a brain injury 10 years ago, and was on life support for 7 weeks, the doctors wanted to switch it off, and my husband wouldn't allow it.I had to go to re-hab for many many months, had to regain my memory etc. but hang in there, as I am leading a near "normal" life.I put my recovery down to my families support.
my thoughts and prayers go to you all.

Anonymous said...

What a blessing to see that big smile! I give anything to see it...Keep those tears of joy! I am sure it has helped to be at home surrounded by loved ones!!! She must be so happy with all of you!!!

Medicaid is Medicaid. Sorry you have to deal with them, but a lot of good has come out of all this. The book idea of "Medicaid for Dummies" is superb!!! You are an expert!

The rehab news are fantastic...!

love and hugs, F & M