A week of "FIRSTS"

This week we had a lot of firsts, we celebrated Reese's FIRST birthday, and had a fun little party with her cousins!! She got tons of fun presents, and of course a pink tractor from her dad!!



With the nice weather this morning we also got our FIRST walk of the Spring in!!! Reese loved going out and cruising in her stroller!!!









Reese also got to go to her "FIRST" Jazz game this week. Grandma and Grandpa Bailey invited us to go with them to watch the Jazz play Charolette. It was a good game and Reese had a fun time!!

Good News

Today we went down to Primary Childrens for an eye checkup. We got very good news, Reese's eyes have stayed the same and not gotten worse. I was so excited!! They have posters that have black and white lines on them, that they are suppose to identify the lines on. There are five different posters and the lines get smaller on each poster. Her visit in September she wasn't able to identify the lines on any poster and today she identified them on the two biggest. It is crazy the little things that I get so excited about!!! Another good thing is that Reese is ready for new glasses, I am excited that we can get a little bigger pair, that will have some cute "hippie chick" gems on them!!! Once again I left the hospital so grateful for this and not other things. My heart breaks everytime I go there and see all the children in wheel chairs or who have cancer. I am so lucky.

Gymnastics and Music Lessons

Today Reese went to her second session of music and gymnastic lessons. She did so good and had so much fun. I was really suprised at all the things she could do being so little. In gymnastics she walked across the balance beam with help, hung onto the bars and let me swing her back and forth, and even put her hands on the ground and held her body up while I held her feet in the air. I think she is going to love it and love being around all the kids there!!!

This weekend we had the opportunity of going up to see my niece Ellee get baptized. Last night we sat up late talking with my sister and mom about Reese. My sister said that my brother in law had a cousin that was blind and had two blind children and she wished I could meet her and talk with her. We went to church today and this girls mom was there and came and talked to me about what a beautiful life her daughter and grandchildren were living without there sight. It gave me so much inspiration and hope. I visit with people that have no sight all the time on my online group, but to hear her talk about all her daughter does and the life she lives was awesome. It was such a blessing and lifted me up so much to talk with her.

Things I have Learned

I was thinking the other night about all the things that have changed in my life in the past two months, and the things I have learned. I used to have a clear picture in my mind of how my life would be and what the future held. Now I have no clue what the future holds, and some days that scares me to death, it is hard to put all your faith and trust in the Lord and realize he knows, and he has prepared us for it. Here is a list of the things I have learned in the past few months
1- Your heart can be completely full of joy and sadness at the same time.
2- My college chemistry class actually did pay off, when I was sitting at Primary Childrens with the geneticist and actually understood what they were telling me!!
3-Some doctors really do have hearts of gold, and would do anything for you.
4-My Heavenly Father knows me and knows what I am capable of, and knows my fears and is helping me to conquer them.
5-Medical technology is amazing and is developing so quickly.
6-The greatest blessing in life is family they can help you through anything and be your greatest support.
I started this blog as a way to connect with other mothers and children with Lebers, and hopefully connect with doctors and researchers working on genetic testing for Lebers.
Reese is doing amazing, she is so happy all the time and such a blessing. She is starting gymnastics and music lessons this Friday, which I am excited for. I think she will love it!!!

In September 2009, I took Reese to her pediatrician for her six month checkup. The minute the doctor walked in the room he asked me if Reese's eyes always made the up an down movements. I said I noticed that they did, but just thought it was normal baby eyes. The doctor said it wasn't at all normal and we needed to have it checked out by an eye doctor immediately. I sat in the doctors office crying and had to wait for quite awhile after he left to get myself together to leave. I immediately called the eye doctor when I got to the car, and got an appointment that same day. My mom and I took Reese to the eye doctor that afternoon and he couldn't find anything wrong with her and suggested we go see a specialist at Primary Childrens. They called that day and got us an appointment with Dr. Hoffman.
When we went to see Dr. Hoffman he couldn't find anything wrong with a regular eye exam but suggested because of her nystagmus (bouncing of the eyes) that we set up and MRI of her brain and then an ERG to measure what her brain does when light is shot into it.
On October 2, 2009 we took Reese down for her brain MRI. The MRI came back normal.
On October 22, 2009 we went down to have her ERG done. We were sitting in the surgery recovery room with dozens of other nervous parents waiting for their child to come out of surgery. The doctor that is working on your child usually came in called your name you go out in the hall talk for a minute and everyone was smiling and they left.
Dr. Hoffman came in the room called our names and said we need to go in the back room and talk. He told us that Reese had Leber's Congenital Amaurosis which is a rare, herediatry disorder that leads to retinal dysfuntion and visual impairment at an early age, often from birth.
I then asked the dreaded question if Reese would go blind. The doctor responded that there is a good chance that her vision will continue to decrease over time and will more than likely leave her blind one day.
After that they led me to the recovery room where Reese was screaming because she was so hungry. All of the sudden the news hit me and I don't know who was crying harder between Reese and I. The nurse said let me go get your husband, I don't think she quite knew what to do with me!!!!!
The next few days, weeks and month have been very tough and emotional for us and our families.
Some days I feel like I can conquer the world and help Reese get through anything and other days I wonder why my Heavenly Father has placed so much trust in me to help Reese. We have recieved so many blessings in the two months since the diagnosis. I have found mothers all over the country that have children with Leber's that have answered millions of questions and given me so much hope.
I also feel I have recieved so many blessings from my Heavenly Father, the biggest blessing is having Reese in my life. She is so happy and I am so grateful to have her in my life.
I love Reese and am so grateful to be her mother. I pray for Reese to have the best life possible, and hope for a medical miracle.. . . . . . .