Finally! Some good news about my daughter.

dlowry said:

Roy,

I'm sorry we didn't get more than a quick HI at the rally, but I know that Cheryl and I are glad to hear all of the progress Rachel is making. As parents this is by far the biggest fear we all have and your strength through this and your commitment is remarkable. I know there are low points to everything, but the attitude your family has to fighting through this is probably the best treatment that can be had. We look forward to more updates and the day we can meet you again, and Rachel as well, at a rally!

Cheers!

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Hi Yes, our meeting was too brief. Thank you, it helps to feel people have our back (metaphorically speaking). I'll see you in TN. I have already started working on the wife.

BexBmr said:

Great news Roy! You and Nancy are really an inspiration. We're going through some bad times with Mitch right now and whenever I get down I think of you guys and the improvements that Rachael is making. It helps me remember that light at the end of the tunnel isn't always a train.....

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I'm sorry Bex, I hope things improve. Remember to take some decompression time for your self. Nancy called me from a Hotel in Nevada tonight. It sounds as if she is having fun.

This just in! Live! Latebreaking! (or is that braking?)
For those following, we started a new therapy called Berard AIT.
Monday of this week was her first appt of 10. Two times a day, 3 hours or more apart. All she does is listen to music. It is supposed to help with many different areas. Since we started it, she has been talking much more and repeating things we say. My wife said she got in the elevator at therapy and Rachael said "elevator." When they were done and walked out side, Rachael said "sunny." She has never commented that much on things around her. When she got home tonight, she was responding much quicker to me. I don't want to believe that something so simple would work so quick, but......

That's SUCH GOOD NEWS!! I can't think of anyone who deserves it more - you and your wife have been so devoted to Rachael's care. Awesome, just awesome, Roy! Thanks for sharing your joy!

Cheryl & Dave

Thumbs Up!!!

Roy,

That is wonderful !!! What is the music type that is being used for therapy? Are there words spoken or is it just different melodies and harmonies??
Either way it is great news to hear!

Billy Joel was one song that Rachael really jumped when it started and ABBA (I know ), so it seems they can use any music. I think they modulate it somehow with other frequencies. I could only stand about 4 seconds of it, it sounded weird to me. Rachael just sits there and listens, She seems to enjoy it an there are no needles, or flights to foreign lands. 30 minutes, twice a day, who'd a thunk it?

When they first got there today,2 ladies were talking in the hallway and Rachael said "quiet."
We were saying the alphabet last night, she did very well.
I start and she takes every other letter. I had to help her twice, where it used to be 7 or 8 times, and I have not done that with her in a while.
The therapy is supposed to help fine and gross motor skills, learning, focus, attention span, the list is huge and she has most of the symptoms to some degree. I may have found my calling, if it helps her that much.

Some dude once said, "Music hath charms to soothe the savage breast".

Thanks for sharing your good news Roy.

Mein Gott! 8-16? I have been remiss to my Bmw friends, but have been fairly busy.
Since Knary doesn't like these touchy feely subjects, it's a double bonus.
(Hi Scott)
I missed some of you at the National, which upset me more that you would think.
I forget how large and "something always Happening" they are.
Some I forgive for not being there, like Tessler wave), but I am on a mission in TN (hopefully).

With Rachael's supplements, therapy, and home therapy, and my recently ailing father, I find there are not enough hours in the day. I couldn't finish my /7 restoration, retaining wall and many other things I wanted. I also was on disability for 2 months with a traumatized gastrocnemius muscle (calf, calve? ) which oddly enough, gave me more time to help my father.


Rachael spelled her name for me the other day. She also said "Daddy" and I said "what" and she said "Hug". I told her no.
(Like you believe that) She seems to have benefited from the auditory therapy we did this summer. When I talk like Scooby Doo (google it, it's way too complicated to explain) she usually said "Scooby Doo" The other day she said "Dog." She appears to be making more connections. We have been seeing a Autism Dr to treat her syptoms. She has many in common with autistic kids. We have a (it's up to 2 pages now) list of daily supplements we have to give her. School says the same thing, she is improving slowly, and she has good days and bad days. We are also having good days and bad days. My wife was in contact with another mother whose teenage daughter had West Nile. Her body started to shut down, so the family brought her home. This affected us both, but my wife especially. I have had my hands full keeping her spirits up, and today she found out the girl had passed away. Say a prayer for L and her family to find peace from all of this, or send good thoughts.

So, I am grateful for my friends, family (technically, I have both here) the fact that my daughter is improving and I got transferred back out in the field at work and away from an unreasonable person, and Christmas is coming. I love this time of year. Thank you for letting me rest my burden for a bit.(metaphorically speaking.) Merry Christmas to everybody.

Rapid_Roy said:

Mein Gott! 8-16? I have been remiss to my Bmw friends, but have been fairly busy.
Since Knary doesn't like these touchy feely subjects, it's a double bonus.
(Hi Scott)
I missed some of you at the National, which upset me more that you would think.
I forget how large and "something always Happening" they are.
Some I forgive for not being there, like Tessler wave), but I am on a mission in TN (hopefully).

With Rachael's supplements, therapy, and home therapy, and my recently ailing father, I find there are not enough hours in the day. I couldn't finish my /7 restoration, retaining wall and many other things I wanted. I also was on disability for 2 months with a traumatized gastrocnemius muscle (calf, calve? ) which oddly enough, gave me more time to help my father.


Rachael spelled her name for me the other day. She also said "Daddy" and I said "what" and she said "Hug". I told her no.
(Like you believe that) She seems to have benefited from the auditory therapy we did this summer. When I talk like Scooby Doo (google it, it's way too complicated to explain) she usually said "Scooby Doo" The other day she said "Dog." She appears to be making more connections. We have been seeing a Autism Dr to treat her syptoms. She has many in common with autistic kids. We have a (it's up to 2 pages now) list of daily supplements we have to give her. School says the same thing, she is improving slowly, and she has good days and bad days. MY wife was in contact with another mother whose teenage daughter had West Nile. Her body started to shut down, so the family brought her home. This affected us both, but my wife especially. I have had my hands full keeping her spirits up, and today she found out the girl had passed away. Say a prayer for L and her family to find peace from all of this, or send good thoughts.

So, I am grateful for my friends, family (technically, I have both here) the fact that my daughter is improving and I got transferred back out in the field at work and away from an unreasonable person, and Christmas is coming. I love this time of year. Thank you for letting me rest my burden for a bit.(metaphorically speaking.) Merry Christmas to everybody.

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This is GREAT news, Merry Christmas to you all!

Glad to sped some time with you again!

Glad to hear of the improvements with your daughter, Roy!

Have a very Merry Christmas! Family is where its at!

Hope to meet you in TN.

I am actually hiring somebody with a watch to sit by me in TN, and when the forum frenzy starts, they will come over and kick me squarely in the .........
ambition.
Thanks for the kind words all, you folks rock.

We have just seen the Autism Dr again, and we believe she may have a yeast issue in her stomach. This also causes good days and bad days. It's frustrating because we have to give her supplements and just watch her, there is no sure fire test.

I also forgot to mention we had a meeting with Make A Wish.
It appears we may be getting a heated pool with a lift and an automatic cleaner.
Our sponsors also asked what size we were, I think there is going to be some sort of photo thing.
We may be able to work with her in the water every day (almost) next summer. This summer was a washout. I would spend almost 2 hours cleaning and adding hot water from the house throughout the day, and it still wouldn't be warm enough for her to swim. It kept me fairly busy. Anything below 83 F or so and she stiffens up and shivers, because she also has circulation issues.
We are also considering going back to China for more Stem Cell Treatment. I will keep everybody updated on that. I always post more in the Winter.


All in all though, I feel fairly good about the future

bobs98 said:

Glad to hear of the improvements with your daughter, Roy!

Have a very Merry Christmas! Family is where its at!

Hope to meet you in TN.

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Merry Christmas to you and your loved ones too!
I guess I needed this to happen for me to finally "get it."

TimeKeeper

I got a watch, how much are you paying?

I am more concerned that you have a motorcycle by that time.


I'll put you on the short list though. It may be hard trying to find somebody who won't enjoy kicking me.

Roy, that is good news. I hope you get a steady stream of good news in the days, months, and years ahead.

Happy Holidays to you, your family, and those who stand by you all.

Muriel

Thank you Muriel.

When I read that, I started thinking about the fact that it's almost always been a steady stream of good news from our beginning, but as parents, we selfishly wanted that dam upriver to break.

Happy Holidays to you and yours.

Great news

Hey Roy,

It is good to hear good things with your daughter. And if all goes as planned I will be riding to TN this summer.

I won't kick you, point and laugh maybe but no kicking.