So Landon and myself attend the National Convention in Las Vegas this year... I totally loved seeing so many friends!! and Landon has so much fun selling buttons and bracelets and meeting people.. But our trip did not start out so great nor did it end on a good note... I can say that should the HDSA host the convention at a "resort" again.. we will not attend...the cost of food and drink at this years convention was insane!! I took with me 200.00 for 2 people for food.....from my food money I took home, less than 75.00... now keep in mind it was me and Landon only.. it was insane.. for a slice of pizza and a bottle of juice it cost 9.77.. and a coffee from me was 5.86... lets just say that for families that are living on budget... this was really a bit outrageous... and I have other items I would rather spent my money on... We were blessed and received a partial scholarship from Iowa and also received a unexpected gift of 200.00 from a very dear person. So we were blessed!! and We are able to enjoy meeting and many sessions!!
I was disappointed that I missed some of the ones I wanted to attended, Thanks to our flight being canceled and than so many issues trying to check in.. But in the end we got there and we watched the youth talent show, Landon got to enjoy a smoothie with a special Friend.. ( Katie Moser) and i was able to attend some sessions. But I must say the most important part of this whole trip.. well i will have to say it was hearing Jacey Mukka name announced as young person of the year.. ( personally I feel she should have young person of the century!!) But to be part of crowd screaming and clapping and standing ovation( that she received even though she was in Michigan... ) The tears that ran down my face were for all the kids and for Jacey.. for all her hard work and her dream coming true.. that JHDKIDS.com is helping.. kids helping kids!!!
I can't thank her enough for all the help her and her family have given us.. They are proof that LOVE is strong than than JHD or HD!!!! We can never thank her enough for showing us hope when I was struggling, and showing me what faith is!!
I am sadden with HDSA details with their funds. saddened as I read Charity Navigator rates them at a 2!! It makes me so very angry that people work so very HARD on raising money and to have not it sent for research makes this whole HD community rock with angry and betrayal! I pray that they realized what people are saying and To look at their families and come back to what this community is all about! The words and heated feelings I heard at the convention and since is truly discouraging!!
I was really blessed to sit by Larry D. Holler DVM, PhD from SDSU in Brookings. What i heard form him gives me hope and i hope to hear from him again soon!! I wont say I totally understood all what he was talking about but he was very patient with me and explained he was looking for researcher and that the last paper about hd and gm ganglidside was very very hopeful and promising. I am excited to read it!!
We arrived home and went to work on Nevaeh room.. My sister Sherry ( God Bless her) did the floor and helped paint the walls.. Shawn wrote on the wall with paint primer ( it is right by the crib, it is says I love you) and her and Dustin put the crib together! than came the fun parts!! putting up butterflies and flowers and Little Monkeys!! than the dresser.. which I picked up for free. than Sherry and CJ and the boys repainted..It really look super cute!! Cant wait for baby to come home! Mike had worked so hard on the room. He did a wonderful job and Neveah is a lucky little girl to have Grandpa looking out for her.
Kate is doing well, we are looking to go back to Iowa City in September.. ( I think) Kate is also schuled for a swallow test. I can say that I am so proud of her. She has a plan for herself and for baby. But it one that she can deal with. So very happy that she doing so well and looking forward to seeing her hold her child. I know my tears will fall when I see her hold her child. Nevaeh is giving her a reason to keep her eyes on what she has and how she is loved!!
So thats it for today..
Tommrrow is Fathers day.. Please remaber to tell your loved ones how much they are loved.
God Bless and as alwasy Keep fighting The Good Fight.
I was disappointed that I missed some of the ones I wanted to attended, Thanks to our flight being canceled and than so many issues trying to check in.. But in the end we got there and we watched the youth talent show, Landon got to enjoy a smoothie with a special Friend.. ( Katie Moser) and i was able to attend some sessions. But I must say the most important part of this whole trip.. well i will have to say it was hearing Jacey Mukka name announced as young person of the year.. ( personally I feel she should have young person of the century!!) But to be part of crowd screaming and clapping and standing ovation( that she received even though she was in Michigan... ) The tears that ran down my face were for all the kids and for Jacey.. for all her hard work and her dream coming true.. that JHDKIDS.com is helping.. kids helping kids!!!
I can't thank her enough for all the help her and her family have given us.. They are proof that LOVE is strong than than JHD or HD!!!! We can never thank her enough for showing us hope when I was struggling, and showing me what faith is!!
I am sadden with HDSA details with their funds. saddened as I read Charity Navigator rates them at a 2!! It makes me so very angry that people work so very HARD on raising money and to have not it sent for research makes this whole HD community rock with angry and betrayal! I pray that they realized what people are saying and To look at their families and come back to what this community is all about! The words and heated feelings I heard at the convention and since is truly discouraging!!
I was really blessed to sit by Larry D. Holler DVM, PhD from SDSU in Brookings. What i heard form him gives me hope and i hope to hear from him again soon!! I wont say I totally understood all what he was talking about but he was very patient with me and explained he was looking for researcher and that the last paper about hd and gm ganglidside was very very hopeful and promising. I am excited to read it!!
We arrived home and went to work on Nevaeh room.. My sister Sherry ( God Bless her) did the floor and helped paint the walls.. Shawn wrote on the wall with paint primer ( it is right by the crib, it is says I love you) and her and Dustin put the crib together! than came the fun parts!! putting up butterflies and flowers and Little Monkeys!! than the dresser.. which I picked up for free. than Sherry and CJ and the boys repainted..It really look super cute!! Cant wait for baby to come home! Mike had worked so hard on the room. He did a wonderful job and Neveah is a lucky little girl to have Grandpa looking out for her.
Kate is doing well, we are looking to go back to Iowa City in September.. ( I think) Kate is also schuled for a swallow test. I can say that I am so proud of her. She has a plan for herself and for baby. But it one that she can deal with. So very happy that she doing so well and looking forward to seeing her hold her child. I know my tears will fall when I see her hold her child. Nevaeh is giving her a reason to keep her eyes on what she has and how she is loved!!
So thats it for today..
Tommrrow is Fathers day.. Please remaber to tell your loved ones how much they are loved.
God Bless and as alwasy Keep fighting The Good Fight.
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