kelly

So sorry that I haven't gotten back to you. I check the forum every couple of days but I have been getting a little behind. I would be willing to sell the remote phone. I have a woman interested in our Dynavox but she has no use for the phone component so I would be willing to sell that separatly. I am not sure how much to sell it for but I will sell it for next to nothing. Let me know if you are interested. (607) 316- 1368 Cell (607) 859-2386 Home.
OUr son is doing great. He misses his daddy but we talk to the stars at night and know that daddy is listening.he talks to us in our hearts. He knows that daddy is in heaven and that we will all be together again some day. Until then we have to do our best to make daddy proud, keep growing, learning and being happy like he wanted us to do. Sorry to get sappy!
KIM MURRAY

We got the eyegaze machine ordered. It should be here in 6-8 weeks. I'm so hoping it will be a huge help.

Hi Kelly, hope you are having a good day? Thanks for your answers.. i appreciate it so much. L

Hi Kelly, I have a couple of questions for you?? I startd with Bulbar onset a year ago. Slirring, trouble swallowing. Now i can eat soft food soup etc. Choaking lots...I am on the Bipap. Just lately my left hand has shown weekness. Can i ask you how long and if it started with Bulbar and is he totally dependent now?? How is his breathing? I hope you don't mind the questions? L

Hey girl I am good, and Brian is super! G-tube has now been in place for about 6 months, and our relocation is agreeing nicely with him. We moved to Ga back in October, and are pretty much settled in now. I was actually lurking and trying to catch up with a few people that I occassionally talked to. Hope all is well with you and the family. Happy New Year! and thanks for checking up on me

Hi Kelly:
I was wondering how you made out with NORD. Are you getting the Rilutek?

Beth

Hi, Kelly. Barry tells me your husband just got an eye gaze communication device. We are headed in that direction and I was just wanting to get some info, thoughts, etc. from you. Thanks! Jacque

Kelly,
I know you and Liz had a relationship. I have this high end dynavox eye gaze system that Liz never really got to use and I'm somewhat angry about that. I'm leery of donating it to the ALS center because I'm afraid it might not get into the hands of someone that really needs it. I don't know how advanced Andrew's ALS might be, but if he is having trouble communicating this is probably just the ticket. It's all opened up so it's a full fledged computer that he can use for both communicating and writing down his thoughts. I know Liz had much she wanted to say to the kids that never got said. If Andrew is in the same position I'd like for him to have the chance to do what she couldn't. If you guys can use it, let me know and we'll get it to you. I know enough that I could help him get up and running with it. Contact me directly at [email protected]. Thanks,

Dick

Hi Kelly: I forgot to add the following: When I sent in the Rilutek application I also sent a short cover letter expaining what our co-pay was for the drug and that it was a hardship, etc, etc. I would recommend doing that. Good luck and let me know if you get this!!!! Beth

Kelly, what part of Pittsburgh? I'm not from there, but lived there for several years, (84-99) Mt Washington, Mt Lebanon & Allison Park.

Kelly: Here are the steps 1) www.rarediseases.org 2) Click on "Programs & Services" at top of page. 3) Scroll down until you see the Rilutek help link.

I, too thought we would be excluded due to income AND WE WERE NOT. I am the most skeptical person in the world and we GOT this help. Please take the time to follow up. It will save you alot of money. I have insight on getting approved that would help. Please call me any weekday 330 376-4136.

Kelly: Here is the number to call NORD to get an application, etc. 800 459-7599. I can help you with this also. Please e-mail me if you want [email protected]. Beth

Hi Kelly: I saw your post today. You can get Rilutek FOR FREE for 1 year from an organization called NORD - National Organization for Rare Diseases. We were able to get the drug FREE, no problem. You will have to fill out an application, but it is no bid deal. I have never heard of anyone being turned down who applied. I can help you if you want. PLEASE CHECK THIS OUT. It worked for us. Take care Beth

Hi Kelly, I just signed up for facebook and wanted to say thanks for the idea. I am glad that you are all doing ok and keeping busy is good. Congratulations to Briggs and to the proud parents, those are the memories that we all need to have, good times with family and friends. I am doing good, we had a visit from the OT the other day and I am getting a wheelchair and walker soon, I hope that they both go into storage for a while as I don't need them yet. Say hi to Andrew for me.
Your friend, Barry

Hello Barry,
Do not know why I did not see your note. So nice to know that someone is thinking of us! Was crazy with all the end of the year school activities. Andrew's care is definitely becoming more demanding...keeping busy for sure. We had a great 4th with tons of friends and family. Went to a great ALS fundraiser organized by a fellow pal on this forum. My son Briggs threw the first pitch at a minor league game..memorable for all. Do you have a facebook page..I posted tons of pictures and a link to an article written about our family. My facebook is Kelly conboy Ragan. Kind of a fun networking tool. How are you doing???????? Hopefully finding some peace each day. Thanks again for your kind note. I check in almost every day to the forum..just usually to exhausted to write. Thanks again.
Kelly