STICKLER SYNDROME

For those of you that know me well and know about our situation, You have heard all about Stickler Syndrome. For those of you that have no idea what it is you are not alone. It only affects about 1 in 10,000. It is a connective tissue disorder affecting the eyes, ears, joints, and sometimes the heart depending on what type you have. When our first son Tarrin was born we had no idea what it was either. Tarrin was born with a soft cleft palate, which we had repaired when he was seven months old. When he was one and a half we noticed his right eye turning in and went to see a specialist. Dr Hoffman at Primary Children's informed us that he thought Tarrin had Stickler Syndrome. Tarrin had high myopia and some of the physical features of someone with Stickler Syndrome. We looked it up on the Internet and were a hundred percent sure that is what he had. We took him in and had genetic testing and it came back that he had it. At this point we were told that it must have been sporadic(25% sporadic, 75% hereditary) To date they have never had someone with Stickler Syndrome not show any signs. Which Kevin and I have no signs, so we thought it must be sporadic. Tarrin has had four eye surgeries and has tubes put in his ears for fluid twice. A couple of months ago I took Tarrin in to see the eye doctor(he goes every six months) and I had Maisey with me at the time. Dr. Hoffman always takes his light and checks the other kids eyes to make sure everything is fine. When he looked at Maisey eyes, He told me he wanted me to make an appointment for her to be seen. I didn't want to wait so I convinced him to look at her then. Well he dilated her eyes and took a look and she has high myopia just like her brother Tarrin. He then told me I should get her checked for Stickler Syndrome. I can't put into words how it felt to get this news and have to call Kevin and tell him. I think my heart was breaking and I was so mad that my son and now my daughter would have to deal with this. I wish I could take it away from them. We took her to the geneticist and found out that she more than likely has Stickler Syndrome. He told us since we already have one child with the syndrome, that we know how to take care of a second and it's our own personal decision if we get her tested. They were baffled by our family because they have never seen a family with two children with the syndrome and the parents not have it. One of the geneticists said something like its probably one in a billion. Yesterday Kevin and I took Maisey to the E.N.T to make sure her ears are okay and to have him check her palate. Both her ears had fluid in them and since she is more susceptible to ear infections and hearing loss we are getting tubes put in next month. He checked her palate and she has a submucous palate which means the muscle is going the wrong way. Only one in five need surgery for it and he said that Maisey's palate looks pretty good. I have felt so many different emotions these past eight years from dealing with this Syndrome and I finally think that I have grown up a little bit. Driving back from the Hospital I was overcome with gratitude to my Heavenly Father for trusting in me to have these beautiful babies and take care of them in the way that they need. I am so thankful that Tarrin and now Maisey have such mild cases of the syndrome. I am also thankful to have so many capable Doctors in S.L.C at Primary Children's Hospital. Dr. Munz said that he wouldn't even know she had it unless we told him and he sees a lot of people with Stickler Syndrome. I am thankful to all of our family for their support and for my mom who puts Tarrin and Maisey's name in the temple every week.

Christmas Card

My Christmas cards were sent out on Monday and that was the first thing that I have done besides Christmas shopping that I have slowly been getting. And yes the kids can never all smile and look at the camera at the same time. It doesn't matter if I take a hundred pictures. I barely put up my tree on Tuesday.(Leave me alone Mandy) I know I'm the worst parent. It seems like everything has been so busy lately. December seems to go by so fast but it is so stressful. I want things to calm down so I can just enjoy what Christmas is all about. I am excited for my brother and his family to come stay with us through Christmas. My friends Tami, Amy, and Lea will also be around and I am so excited to be with family and friends throughout the Holiday.

Happy Birthday Kevin

I just wanted to tell my wonderful husband Happy Birthday today. The kids and I love you more than anything. We are so grateful to have you in our lives. You are such a blessing in our family. Thank you for always doing everything you possibly can to strengthen our family. We love you!!
Just a few of Kevin's wonderful qualities.
1. Great Listener.
2. Loving husband and Father.
3. A great Friend.
4. Is Trustworthy.
5. Is always Honest.
6. Cares about other people.
7. Puts other needs before his own.
8. Is always making me laugh.
9. Has a great sense of humor.
10. Treats me with respect.
Okay so maybe a little more than a few.

IT'S DEAD

It has given me comfort, happiness, joy, and pure bliss. It doesn't care when my hair is wet, If I am in need of a shower, come home late, put dirty towels on it or eat cookies on it. It has supported mine and Kevin's weight and now it is gone. It is no longer the source of comfort that I once thought it was. Now it is mean, lumpy, and too small to fit us and the children who like to come sneak in and lay on it. GOODBYE MATTRESS! It has been replaced. It was like a toxic relationship that you know you shouldn't have. It no longer supported me and was making mine and Kevin's backs heck. Kevin saw the ad in the paper and that was it. Tomorrow we will be sleeping like we are in heaven. We will wake up to a good nights rest and we won't be kicking each other in our sleep. I am not sad and I will not cry when they take it away. I will rejoice in the fact that it no longer has a hold over me and my sleep. So goodbye mattress, you will not be missed.

THANKSGIVING

This year for Thanksgiving we went up to Kevin's Parents cabin. We had a really nice time. We ate lots of food and enjoyed each others company. Kevin's brother Rob threw my niece Lyndsey so high up in the air, I think she's used to that sort of thing. I read some and visited. Kevin went out and shot the gun with the kids. Maisey kept crawling up the stairs and I was so worried that she was going to fall. My kids got to play with all of their cousin and Tarrin and Wyatt got to have a sleepover the night before. We had a good time.

Things I'm thankful for

I saw this on Amy's blog and thought it was neat. I'm just going to list a few things I am thankful for and not the obvious like family, friends, and health.

1. Parmesan chicken- I have never been much of a fan but I got the recipe out of The Lion House recipe cookbook that my parents gave us one year for Christmas. I have been making it a lot lately. You use corn flakes, Parmesan cheese, and a ranch seasonings packet. Mix together, coat chicken and top with spaghetti sauce and more Parmesan chs. I love it! I also have tried it with homemade Alfredo sauce. I'll have to take a picture of it the next time I make it which will probably be tonight. Let me know if you want to come to dinner :)


2. Books- I am on a book kick. In the last month I have read The Stolen Child, A Wife most Begrudging, The glass castle and I am reading The Island right now which is really good so far. I have started a few others but if they don't grab my attention within the first hundred pages I stop reading it. I have to read at night when the kids are in bed which means I get to bed late and that doesn't make for a happy mommy the next day. I guess I may have to cut back a little bit.

3. My camera- This is the number one best gift my husband has given me. Except for my wedding ring. I absolutely love it! I think he must have known just how much it would get used. I have gotten so mad at myself when I forget to bring it along. I went up to see my dad on Sunday and forgot to take it and when I was in the canyon I saw the most beautiful sunset. I was so mad. I have to remember to always take it with me so I don't miss out. By the way my dad is doing better. He is still pretty weak and has to take a couple of weeks off work. I am so thankful for him and glad he's still with us.

SIX RANDOM THINGS

I was tagged by Tiff and I'm finally getting around to it. Six random things about myself.

1. I love to talk on the phone. So it really isn't a surprise that I'm always on the phone with my sister-in-law Kim who also likes to talk on the phone. I usually don't go a day without talking to my sisters Amanda and Stephanie, My mom, Anissa, and Kevin on the phone. I can go on and on for hours as long as my kids don't need me which you know as soon as you pick up the phone they need something so I usually don't get to talk for long.

2. I am a people person. I love meeting new people. I love learning about different cultures and different backgrounds. I love seeing how people interact with each other.

3. I love photography. I know that's really not a big surprise. Sometimes I can't sleep at night because I keep thinking about what kind of poses I want to do next, Where I want to take the pictures, What lens to use, If I want to use my flash or not. Well you get the point.

4. I love to read. I love all sorts of books. I have even surprised myself and have rather enjoyed fantasy books like East, The Stolen child, and of course the Twilight series.

5. Honesty is number one to me. I am honest to myself and people around me. I think there needs to be honesty in every relationship that you have.

6. I am a talker. Sometimes I have been called a big mouth. I don't know if it has to do with growing up with so many siblings , but I love to talk, Voice my opinion. Tell you what I think. I am pretty blunt when I want to be. You can ask me anything and I'll tell you.