Why I stopped writing...

I know it has been a very long time since I have written. To be honest, I got into a depression, and it once you get down, it is hard to get back up. Then I just didn't want to write about it. And the longer it got, the less I wanted to talk. But I know it will help me move on and catch up if I tell you what was going on last May when I stopped writing. A couple of things happened that will seem pretty insignificant now looking back but it wasn't then. First of all, I got hurt by a close friend that I look up to very much. I felt betrayed and it sent me into a depression. Even though we worked things out, it was very hard to "get over it."

GREAT NEWS!!!!

For all of you wondering how my younger sister's test results came out...she DOES NOT have the disease!!! Isn't that wonderful!? I am so happy for her. She has so much ahead of her now without this looming over her. As my sister, she is so close to my heart. Every time I even thought about the possibility of her having it, it was worse that me going through it again. I love her so much and am so glad that she is not going to have to face this part of the battle. Granted, HD is a family disease, so she can't ignore it. In fact it's a little funny that she is the least patient among the three of us, and now she'll end up having to help take care of us!!!! =) I really do want to thank all of you for checking on me and for all of your prayers. You all are the best.

Today I am just thankful...

Updates...

Sorry it has been a while but life has been busy... I hope everyone had a Happy Easter. Ours was very nice! The kid's spring break was wonderful. We didn't go anywhere but we had nice weather the first week so we went to a couple of parks for hiking and biking. And Chip went with us to the zoo. It really does make me wish we never had to get up early and never had homework - it really does make me a nicer mom. =) I'm sure it would eventually get old. Ha!!
I went back to Memphis last week to get more drugs. The drug I'm (hopefully) taking is to help cognitive functioning and the dr. said that some patients who have been on it longer are beginning to see a difference. Now I know those people could be on a placebo and it could be "in their head" but it would be nice to think it is working. I also found out something else that is a bit encouraging. If you have been reading this from the beginning, you know that one of our problems has been finding a good neurologist in the Nashville area. Any movement disorder neurologist will treat you, but most of them deal with primarily Parkinsons patients. Last year I even went to Indianapolis because I liked the one there so much and because she had so much experience with HD. I talked to the neurologist at Memphis who is doing the study and asked him if his other patients saw other neurologists. He told me there would me no need for me to have anything other than my primary care dr and my obgyn. That he would take care of everything else for me. Of course I will be seeing him at least every 6 months so he will know me better that any other dr. would. I was excited about this - you have no idea how frustrating it is going to drs. who don't have a clue what HD is. And even better -- it is free because it is part of the study!!
My younger sister did go to have her genetic test done yesterday and now we wait. She will get her results in 3 weeks. I don't need to tell any of you how much our family could use a miracle so keep praying for one!
I want to end this on a funny note...this is what all of you parents of boys have to look forward to...So I get a call last Thursday, while I am at preschool, from the school that I need to come get Cole. Evidently he had been playing with a rolled up piece up paper and seeing how far he could get it to go in his ear. When it got so far that is wouldn't come out anymore, he decided to use a pencil to try and get it out. Which obviously pushed it much further down...so far down that you could no longer see it. The nurse said it was close to his ear drum and she didn't have an instrument skinny and long enough to get it out. So I was going to have to take him to the dr. to get out the paper. When they called me, Cole was crying, he was convinced they were going to have to cut him or put him to sleep to get it out. It was a little funny. An hour and a half later - after trying to scrape it out and flush it out and scrape it out again - it was out. Since then I have been told to be thankful it was only paper. I have heard horrible stories of peas and beans and candy in noses and ears and it's always little boys. That makes me laugh! What would we do without our boys to make us laugh?
Today I am thankful for my sisters...

I finally got my drugs!

I had great intentions of telling you all about my trip to Memphis last week but almost as soon as I got home, I got sick - with the flu! I have not had the flu as an adult and let me just say that it has been a miserable week. I was well enough by Wednesday, however, to go back to Memphis to finally begin the process with the study medication. They are chalky tablets that taste like maple and I will have to chew 4 in the morning and 4 at night with my meals. I am hoping I will soon get used to the texture/taste of them since they will be a part of my diet for the next 5 years. Obviously, I have no idea whether or not I am taking the real medication or a placebo. I won't go back to Memphis for a whole month! :)

Again, I want to ask you to keep our family in your prayers. I told you that my younger sister is being tested next month and I am having a difficult time with that. When I was the first one to go through testing and I was positive, I was okay with that. I felt like if I could just be the only one in the family with it, then that would be okay. And then when my older sister tested positive, I was angry. And it has taken me this long (6 years) to get a little peace with God about it. And now, if my little sister gets it, I am not sure I can explain how pissed and heartbroken I am going to be. It doesn't seem possible that God would allow all 3 of us to get this disease. My mom couldn't handle it if that happened. Obviously, this will be huge for all of us to deal with, so we can use all your prayers.
I have missed keeping up with you all on facebook lately. I gave it up for lent so I have only been on there on Sundays for the past few weeks. I hope everybody is doing well.
Today I am thankful for my sisters.

I had great intentions of telling you about my trip to Memphis last week but by the time I got home, I was getting sick - with the flu! I have never had the flu as an adult and let me just say - it has been miserable!

Yesterday's visit to Memphis

Yesterday was my first visit to see a neurologist at UT Memphis to participate in a new drug study. The purpose of yesterday's visit was to evaluate my cognitive and physical abilities and determine where I am in the progression of the disease. This evaluation helps them decide which trials I qualify for. These tests are the same tests I am used to doing every time I participate in any study. The fun part was that they were using spouses as non HD participants so they made Chip go through the same tests - and he got to see why I always feel so dumb! =) After the tests, the doctor decided that I definitely qualified for the 2CARE study. Don't ask me what is stands for because I can't remember right now. This is the Coenzyme Q10 study that I was hoping for. Most studies have been done at 600mg of CoQ10 and shown some "favorable trends toward slowing disease progression" but this study is doing a dose of CoQ10 at 2600mg. The frustrating part is that I have to go back next Wednesday to have my blood taken to be sure that liver and kidneys can handle the high doses of the drug.
I wanted them to do that yesterday but they were already taking blood for that study and they didn't want to draw that much in one day. =( So after next week, I will go back the following week, on the 11th and get the drug. Yesterday was a long day. With traffic, it took us 4 hours to get there. =( Of course, if you know me, I slept the almost the whole way there. We laughed about the fact that even if it might be for a yucky reason, it was pretty nice having a day to ourselves. Over all it was not a bad day. Tonight I am thankful for my husband... my friend.

I'm so proud of my babies!

I just wanted to brag on my babies a little. Both Shelby and Cole were baptized tonight at church. They both asked Jesus into their hearts several years ago but weren't ready for baptism. Shelby has been putting it off because she is nervous about doing it in front of a crowd but Cole decided he wasn't waiting on her anymore. But they both decided to do it tonight along with about 14 other kids. I was so proud of them. I pray that when times get tough, they will be able to look back on their decisions and their baptism and remember.

Thursday night, Cole was in a President's Program and he was John Adams. He was so cute in those big black pants and jacket (thanks to Marla!). And he wanted his hair white so we spray painted it. Each president had to escort his first lady to the podium and they took turns with their speaking parts. Cole almost drug his first lady back to the chairs. It was so funny! Tonight I am thankful for our children. They really do make me proud!

UT at Memphis

I have my appointment at the University of Tennesse at Memphis on February 25th. I will actually be enrolling in 2 different studies. The first one is called COHORT which is basically another observational study that involves the whole family. Chip and I will go and answer a million questions and from those answers, they will decide which drug trial is best for me. Most likely it will still be the Coenzyme Q-10 but there are 2 other trials that are now available - one is creatine and I'm not sure what the other is. All of these trials will involve several visits at first to Memphis for bloodwork. So I may be looking for friends to ride with me to Memphis when Chip doesn't have to go with me! This is all I know for now. I will tell you all more when I get back!
I just want you all to keep something in the back of your mind for me over the next couple of months. My younger sister is going to be tested for HD in April and I am having a hard time with it so please keep our whole family in your prayers when you think about it. I will also talk about this more later.
Today is my baby's 9th birthday. Cole is so much fun and has such a sweet heart. Today I am so thankful that he is a part of this family! (I do wish I could freeze time and make him stop growing while he still loves his mommy so much!)

Good Question...

Hey Laura, just to answer your question, in case anyone else was wondering, I have read the books (twice) myself. I read them first because I wasn't going to let her read them until I had checked them out. You are right about the sexual tension but she totally doesn't get that yet. She thinks I'm stupid for for talking about how cute Jacob & Edward are. And in the last book, they never talk about the actual act of sex but I warned her ahead of time that they would have sex after they were married. This still grosses her out and I'm glad :-). Want to hear something funny? Guess who else is hooked on these books? Chip! We got him to go see the movie and then he wanted to read the first book. Now he's read them all twice! We're all pathetic aren't we?

I have a question for you...

This is a question for all of my friends who love to read. Shelby loves to read as much as I do and lately she is stuck on the Twilight series. And I do mean stuck. She won't read anything else. She has read all 4 of them at least 3 times. She says she can't find anything else to read that is as good. And while I continue to agree that Edward and Jacob are very appealing, I would like for her to find something else. I am afraid she's going to be very disappointed one day when she figures out that boys don't come quite so "perfect." Ha! Ha! Ha! :) So my question for you guys is do you know of something else out there. I know that some of you teach reading/english. And some of you get to read a lot more than me, so you've got to give me some ideas.
Tonight I am glad that Cole is no longer puking. I am tired of cleaning it up and I smell like Clorox wipes!

Happy Birthday!

Last week was a week of birthday celebrations for us. Shelby turned 11 on the 12th and Chip turned 39 on the 16th. Yes, he is really 39 this year. He's not looking forward to 40 so next year may be his second 39th birthday! The weekend before Shelby's birthday, she had 6 girls over for a sleepover. It was fun but very loud. It is amazing how much 10 & 11 year old girls squeal! We only had one emotional breakdown - which is pretty good considering there were 7 girls! I am sad that my little girl is 11. She is growing up so fast right in front of me. But I also know that God has great plans for her and so I am excited to see what a wonderful young lady she is going to grow into. As far as Chip's birthday goes, his one request was that I make him a cake and so I did. It's just not as much fun to celebrate our birthdays as it is the kids. Cole's birthday in on the 15th of February and he has been negotiating his birthday plans for weeks!! And then my baby will be 9. I really wish everybody would just stop getting older! And do you know what really bugs me? Is that I sound like "old people" when I complain about not knowing where the time went! :)
Tonight I am thankful for my husband and my children and the fact that they are healthy and have celebrated another year in their lives.

Happy New Year!

Over the past couple of days I have been thinking about past New Year's. What I have done for them and whether or not I made any resolutions. There are a few New Year's Eves that I can remember growing up. A couple at church, one at a friend's house in high school, one at Food Max, and my most memorable one was in New Orleans. Since Chip and I have been married, we have spent almost every New Year's with the same group of friends from church. There are 6 couples that started out as newly married couples and now we've all been married for 12 years or more and last night there was 13 kids between us all. I always enjoy spending New Year's with all of them because I like being with my whole family. I like to have Chip and both of my kids with me at midnight. I know there will come a time when my kids don't want to kiss their mom on New Year's but for now they do and I love it!
I've never been one for resolutions because I know that I'm not very good at keeping them after January 31. I always say I'm going to eat better and exercise but if you know me well, you know I don't do that well either. The one thing I have done that motivated me the most was doing the half marathon in 2007. I have never felt so good physically or mentally. You also know that I partially tore my achilles tendon during training last year for the half marathon. I really want to do it again this year but I am also afraid of hurting that bad again. So I am thinking I am going to go really slow and see how it goes. I may not be able to run it like I want to but even if I can walk it, that would be okay. So if I am going to make just one resolution, it will be to start training slowly and see how it goes. This will make younger sister happy since she keeps bugging me to train with her again. :)
Today I am thankful for a New Year. It is always a nice way to have a "clean slate" and have a new start. Happy New Year everybody!