Finally! Some good news about my daughter.

Thanks all, it was a long weekend. My wife was despondent over this and all the DR visits lately. Also, Rachael has not been sleeping regular, and that messes with everybody.
In related good news, we get to lower the dosage of seizure medicine, which is always good.

Remember Roy (and Mrs) parenthood ain't for sissies.Someday you will be richly rewarded for being "on call" 24-7.Will be praying for rest for you all.Ed

My brother was hydro cephalic and we eventually lost him. I won't try to hijack the thread with that but I think I can say, I feel your pain.

What's the point then? You come to understand the joys of the day or yesterday if today was a bad day.

And that definitely has influence on how you look at things.
Sometimes joy, sometimes anger.
We are so lucky.
What did we do to deserve this?

It becomes a day at a time thing but it certainly puts things in perspective.

So you hang in there my friend, you are in my thoughts often.

So, we had a wire come out on her braces and start poking her in the cheek on Tuesday. I came out from changing from work and she is screaming and there is blood on a cloth my wife is holding to her mouth. I used a magnifier and cut it with a side cutters. Then we found out her caregiver has Scabies, which we really do not need to deal with at our house, so we have been washing everything in the house. Yesterday, the wire became an issue again, so we took her into the Orthodontist and she has to have a Valium before and antibiotics after. It has been a week.

Hang in there guys. Sending good wishes your way..........

Ugh.
Tough times for you all.
Throwing extra good thoughts your way.

Thank you. Everything is quiet right now, my wife is out for a (probably very needed) girl's weekend, Rachael is happy and watching TV and Dad has got the helm. We are deciding what to do today.

Voni
sMiling

We went for a walk, to enjoy the sunshine while it lasts, and then played on her computer. That did not go well, she really can't work a mouse yet.

Roy, what about the possibility of using a track ball vrs a mouse?

m0rbid45 said:

Roy, what about the possibility of using a track ball vrs a mouse?

Click to expand...

Good point.
I had one of those MS EasyBall track balls, which was huge and had 1 click button. She chewed through the cord. You are on the right track though, I suspect it would be easier than a mouse at this point. I need to find the largest one possible though. I have not been back to the Special Needs Computer website, perhaps they have added something like that since last I checked.

Not sure what the special needs site has. This one is about the biggest out there that I am aware of.

http://www.kensington.com/kensington/us/us/p/1444/K64325/expert-mouse®.aspx

Rapid_Roy said:

Good point.
I had one of those MS EasyBall track balls, which was huge and had 1 click button. She chewed through the cord. You are on the right track though, I suspect it would be easier than a mouse at this point. I need to find the largest one possible though. I have not been back to the Special Needs Computer website, perhaps they have added something like that since last I checked.

Click to expand...

Roy,

Dad should buy her an I pad, she deserves it. no mouse needed.

redclfco said:

Roy,

Dad should buy her an I pad, she deserves it. no mouse needed.

Click to expand...

Ewwwwwww!

I found a Microsoft easy ball on Ebay for 20 bucks. That will work more bettah.

Hey RR,long time.My daughter too is still handicapped.Things could be worse all around huh?

jgr451 said:

Hey RR,long time.My daughter too is still handicapped.Things could be worse all around huh?

Click to expand...

Yes, I guess they could. I worry that she may not be self sufficient, and something might happen to my wife and myself. We know how to make her happy. I know parents worry anyway, but I want to worry about being late for Soccer practice or Ballet, not will she ever walk or talk again. I am afraid we will never get to that point.
We have been trying to get her better for 9 years now, and will still keep trying.
It wears us down, but giving up is unthinkable, and not an option.
It is disheartening to see the light at the end of the tunnel moving further away at times.

Well, what a week. Rachael had a "procedure" done on Monday. They injected Botox into her hamstrings, as they are way too tight. They also injected phenol into her abductors, which are the muscles that keep the legs closed. Hers are overpowering the weaker muscles. She did ok, but we kept her home from school on Tuesday as well, as she did not sleep good, and my wife was up with her most of the night. It appears I also brought something home from the Hospital as well, and was sick for a few days. I went to work on Friday, because money makes the world go round, but my son had surgery for his sinuses that day. He is doing ok, but it is starting to hurt more today.

We upgraded the TV in the Family room to one of those fancy LED ones as a family Christmas present, and our entertainment budget for the year. We don't get out much. Now, Rachael has a 46" "monitor" in the living room we can connect to the laptop, along with the new huge trackball. She better be able to see that!
We are hoping it will engage her more, and force more hand to eye coordination.

The caregiver is going to be with Rachael tonight, and the wife and I are going to go out and eat, so I guess things are about as good as they can get right now.
I hope everybody has a great weekend.

We have been lucky enough to share this earth with our daughter 14 years ago yesterday! She was a pistol too, and was laughing a lot. I wonder if I will have to worry about her driving or not. I hope so.
Happy Birthday to my Rachael.
*Hug*

Happy (1 day late) Birthday Rachael!

Hang in there Roy!