IOWA CITY

Iowa city,
We had so much fun hanging out and laughing and giggling. Kate's appointment went ok. We had so many moments that I will hold dear to my heart. We also had a fun time staying at the castle themed hotel. Landon says we have to stay again.. :) i love how much he makes us have fun and not dwell on the bad parts..
Our Lord was with us as we arrived safely and made it home without any car troubles or bad weather!!
The dr say that she had progressed :( as we expected, but they tell us that over all Kate is doing well.
Kate did great. She handled the appointments very well with out the irritability that has been there on past trips. Landon fell asleep.. he crashed on the floor and made everyone giggle..
We also raised enough money for Kate's new bed.. We are so grateful for all the love and prayers we have received from everyone.

2 Thessalonians 2
1Now we beseech you, brethren, by the coming of our Lord Jesus Christ, and by our gathering together unto him,2That ye be not soon shaken in mind, or be troubled, neither by spirit, nor by word, nor by letter as from us, as that the day of Christ is at hand.

so excited yet so shot

So much is happing and so fast.. Sue is home for a bit, with my DJ!! and so happy days.. Kate been so busy with her friend that she has not been around much. it ok ,, Landon is sick again.. :( bad cough and fever... back to dr and than off to set up for the benefit..

God be with us.. let us show your glory and praise your name, thank you for all you have give and all your blessings!

JDH IS INSANITY

yeah.. for real it is insane.. mood swings, crabby, and sleeplessness... and that just me..hahaha
I am at a lose i cant seem to find that middle ground with Kate..
I so worried that she is shutting her self down.. she seems to pull away more and more.. everyday..
I worry and yet I have to let her be Kate and let her live... it so hard.. i miss her hugs and her giggles..I wish i knew how to make her smile.. but i have to leave it in Gods hands.. because i cant handle this without his help.. and he gives me so many JHD families and loved ones to help me.. thank you to all of you!

i thank God..

With out God i could not do this.. God be with Kate..and help me to help her.. please

1Paul, and Silvanus, and Timotheus, unto the church of the Thessalonians which is in God the Father and in the Lord Jesus Christ: Grace be unto you, and peace, from God our Father, and the Lord Jesus Christ.

2We give thanks to God always for you all, making mention of you in our prayers;

3Remembering without ceasing your work of faith, and labour of love, and patience of hope in our Lord Jesus Christ, in the sight of God and our Father;

4Knowing, brethren beloved, your election of God.

5For our gospel came not unto you in word only, but also in power, and in the Holy Ghost, and in much assurance; as ye know what manner of men we were among you for your sake.

6And ye became followers of us, and of the Lord, having received the word in much affliction, with joy of the Holy Ghost.

Wow... i stirred the pot

So what a day.. and apparently I stirred the pot with my fundraising lies?? post .. I am soo sorry if I upset anyone.. Our Goals is to raise awareness and money for a treatment for JDH and HD..
I totally appreciate HDSA and all they do for awareness.. My problems is with the amounts..and i understand that u can earmark money for research.. which is great.. I guess I look at that the number one thing that should be done with the moneys raised is for research.. the more money the better the research.. 2 we should be taking care of our families on a basic level.. Asking them if the need food.. gas to get to dr's helping them find a lawyer when ssi or ss is denied.. yes I believe it can be done.. we love each other can Know what each of us go through with our loved ones and with ourselves..
I know that I have been blessed that my family has helped me to get Kate to and from Iowa city.. which 5 hours one way.. but i also have read and know of parents that cant afford to bring their kids to center of excellence because of cost of travel and lodging.. no to mention they cant afford the time off of work.. Why can we help them out.. to me that is more important than paying for t shirts to be given out at our walks..
I know it seems i am upset.. but i am not.. I just feel that we need to really look and ask our families what they need!

Blessings

So I received a phone call today.. From beautiful person named Judy. She and her husband Scoot are donating the drinks for Kate's Benefit. I cried.. Because this women as dealt with some pain... Thank you so much for u r love and prayers Judy and Scott D.
God is working in so many ways thru this..i see it everyday..

On another note. I am still researching where the monies are going for the HDUS ... Landon still has his money from the last fund raiser yet and I am waiting to see where to send it... well that he raising more for the JHDKIds.. he told out youth pastor that "i have to protect My sissy and all the other kids from JHD" I cried.. I want that faith the faith that will give me the peace that God will take care of it all and that Kate and all the other families will be ok..
God thank you for giving me Landon so I remember it all in your hands..

O God listen to my cry! hear my Prayer. 2 From the ends of the earth I cry to you for help when my heart is overwhlemedlead me to the towering rock of safety for you are my safe refuge

help for us! jhd and hd

We need a place to go to hear us... and guess what.. they are not hearing us in New york.. so we need to shout it from the rooftops!!

The HD View! - http://www.blogtalkradio.com/help4hd/2011/10/03/help-4-hd-the-hd-view-premier

http://jhdkids.com/



http://www.faithandhopesociety.org

http://about.me/WeHaveAFace

http://wehaveaface.org/Home.html

http://www.deshalamar.org/The_HD_Relief_Fund.html

All place to go to find help for HD and JHD