Sunday, May 27, 2012

best laid plans

Mike is busy building Nevaeh's room. I am amazed at his determination to get it done by himself.. Something that he can give to Kate and baby from his heart and his own hands. I am glad he is taking this on and making sure his baby girl and her daughter have rooms of their own.
We go back to Dr on Tues and than on Friday... it is kinda scary each time we go.. not sure what the dr will say. He says Kate is mostly likely deliver early. The baby keeps changing her blood rate and such.. MMM maybe she will be like her momma and keep us all on our toes.. :) But Kate has been taking care of her self and seems to be handling this all with her own quite grace and strength.

Landon and I are to leave for the HD national convention on June 7th and return on sunday june 10th... This scares me as i really need to be by Kate side should she deliver early.. yet she says mom you cant not go. Landon is so excited and you are to.. So i am praying about it and asking God to guide me no matter what comes.. As the say the best laid plans.. can always be disrupted.. Landon says that he will stay home if Kate has to go to the baby dr.. I say we will wait and see.
It goes to show that God's plans are quite often not our plans. Acceptance of the changes he brings us can be hard. But trusting in him to show us the way is never hard..

Landon made more brcelets and is looking forward to selling them and giving ther money to Jane for the JHD research. We often have issues with how the national level uses donations so we send it right to Jane in Iowa city. It is sad that so much of the monies raised for research is not spent on current research.. it is frustrating that our families with hd in them are struggling and on the national level they said we are putting in place services for our HD families.. but they cant tell us what those services are..  Yet I still will support and call attention to the disease.. I will keep calling and writing to National asking my questions and demanding answers. I will keep telling National what our families need and are asking for. it is the only way we know how to help others..
We will keep praying that a treatment can be found. That the people who guild and make the rules for us can be shown that a possible treatment is worth for our loved ones. The dragging of feet and the inbalitiy for labs and countries to work together is appalling to me. The information that could be shared and than brought to our loved ones with HD  to me is more important than money. But our government dose not see that.. that is sad ... how many other diseases could be cured if the FDA would only allow it?? I can tell you this that Kate has JHD and a possible treatment is worth trying , because with out any the end result is as we all know horrific. I have read about trials in other countries and yet our country says no way... it seems to me that all the money spent on making rosters and "collecting" date should be used on making head way with treatemts, not more paper work. Kate is part of 3 different trials and all she does if sign her name so people can look at her medial records.. that is not a active way to find treatment..
I many becoming more and more frustrated as Kate due date approaches.. I want her see her daughter attend preschool and graduate and fall in love... and it feels like there has been not forward progress in slowing this disease down or any other so called treatments. instead it is more and more pills given to her so she wont get depressed or have mood swings or movement issues or be in pain.. ect... and perhaps i am wrong and not reading the right papers and releases.. and if I am please someone  show me.... Till than I will keep talking and keep fighting and keep asking... and MOST OF ALL I KEEP PRAYING...

To all the families fighting with us.. I am fighting for us all for our loved ones!!