Hi Mary,
I am happy that the story is progressing. I understand your pain regarding watching your child not being able to do all of the things she could. I feel that way when I watch Kevin struggling to be like his friends. It is really hard for me, but I try to focus and be thankful for how lucky we are compared to others. Kevin is ten, and a big obstacle is the emotional stress of the ups and downs associated with this condition. I am really working on trying to figure this portion of the illness out. Both for Kevie and myself.

I wish you well in your continued journey, and I will pray for your family so that God gives you all stregnth!

Sincerely,
Dawn Kevies mom

mary,

never give up hope. i did not start the good part of my recovery till month 26. take care. be well.

gene gbs 8-99
in numbers there is strength

I agree with Gene, I think it is still to early to tell how much recovery she will make. Many adults with GBS take two years or more before they quit getting better. Nerves can be so strange in the way they are able to rejuvenate. Also, she has the youth factor on her side. I think she is doing extremely well, so independent; I know many “healthy” 5 year olds who do not do all of that for themselves!

I know how you worry for the future… I raised a son who is now 26 & was paralyzed from the waist down from birth due to spina bifida. He still walks with crutches & leg AFOs, but uses a wheelchair to get around for longer distances. It did break our heart when he was born, to have one son able to do everything & one who never would. But he is happy & chose a profession where he could be an athlete vicariously (sports writing.) He has told me that he never missed what he could not do, as he never knew what it was like to ever do those things. I can now understand what he meant, as after 5 years I can’t remember what it was like to run or jump either. Strange how the mind works & forgets…

I wish your daughter a wonderful recovery, don’t give up hope after only one year!Pam

Hi Mary, I’ve been thinking alot about you 2 lately, every time I pass the hospital:) It sounds like Abby is really very independant, and has a strong will. Thats awesome that she is able to do hippotherapy, that will do wonders for the core-which is what she really needs to be able to walk in the future. Like Gene says, never give up, she will be running and skipping soon. Nerves in kids regenerate faster then adults, the hope is there. Please give Abby a Big Hug for me:)

Have you tried the MDA for a bicycle for Abby? or The MS association? They have everything you can imagine available for kids with special needs.I’ll look for the note I had wrote just for you regarding bicycles, its only been about a month ago that I came across the information-as usual I have misplaced it.:o
Take care, Keep in touch:)

Thanks for updating us on Abby. Prognosis is a fancy word for “guess”. No one, not even the docs or therapists, can know how a body will heal. I thought I’d never run again but just the other day I did a pretty good lope:D and it’s been 12.5 yrs. Childrens bodies have a greater chance of good recovery because they don’t have the years of abuse (lack of sleep, poor diet, no exercise, etc) that adults have. Just keep looking forward leaving the “nay sayers” in the dust!

Hi and thanks for the update on Abby! I wanted to encourage you that my daughter too had GBS at age 4 1/2 (she is now 7). She was in preschool and it is funny, she was tripping on her feet a bit in children’s church the evening before but we really didn’t think too much about it until the next day when she said her tummy hurt (which is what actually prompted us to take her to the dr.). The Dr. couldn’t find her reflexes and admitted her to the hospital and with in 24 hours she was fully paralyzed.
It has been just over 2 years and she is walking, running, playing, and even dancing! The dr. was not real hopeful that she would make a full recovery because of nerve damage. She still struggles with “bad days” but she is still making progress in therapy! I am going to pray for your family. I know God can heal Abby beyond what the Dr. would think is possible but I also know sometimes God doesn’t work just the way we think He “should” but He gives us the strength and courage to face our challenges in life. It sounds like Abby is a real fighter!

Take care!
~Amy

[COLOR=red]Julie[/COLOR]
[COLOR=#ff0000][/COLOR]
[COLOR=#ff0000]We have something in common about today, cool. I hope you are doing betterone year later.[/COLOR]

Julie

With the Grace of God, you’ll be better one year from now…keep your spirits
high and think positively.

Good luck to you…

Miami Girl

Julie,

I had no idea it was a year ago that all this started. I am thinking about you as I know how hard it is to be positive.

Hi Julie, best wishes for your continued progress. It will be one year August 14th for Kevie.

Dawn Kevies mom 😮

Anniversaries of life changing events are difficult . . . I wish you “well” and send you hugs 🙂

I just saw this I hope you continue to get better, my wife has so much destruction caused by the GBS & CIDP. She could never get much better, she only reached a certain point & never fully got where she could do very much. I had hopes that she would get more back to normal, but it just was not to be. I wish you the best !

It’s good to acknowledge how far you’ve come in a year. Yes, in one more year, things will be better. A lot can happen in such a little time. It might not seem like much, but a little progress and healing, is really a lot of progress and healing.
Best of luck to you! Thanks for sharing how far you’ve come along!