Good News

Do you ever feel like you just need to have a good cry and you will feel better, well Tuesday night was that kind of night. I had taken Reese to the mall Tuesday and she ran right into the wall and fell on the floor hard. I feel so bad everytime she has accidents like this whether it be falling down stairs or hitting a wall or something in her path. It is so hard to watch her, but I know I have to let her learn from these to be able to recognize her other senses and let them help her navigate (except for the falling down the stairs, I would have definatley stopped her if I had seen her!!) Anyway we had an appointment the next day at Primary's and I was certain we were going to get bad news. We have noticed her running into things more and starting to squint a lot. I started to talk to Willy about this Tuesday night and ask him if he had noticed the same things and he had, and the tears started to flow!!!
Well Wednesday morning I felt pretty good about things, my mom rode down to Salt Lake with me and we actually got good news that her eyes looked the same physically and she passed the same amount of cards for her vision so I was very relieved.
We are taking Reese to Philadelphia to a Lebers conference next month and are very excited to learn more about her eye disease and to hopefully meet with the doctors at the Childrens Hospital of Philadelphia. The doctors will do breakout sessions at the conference so even if we don't get an appointment we will get to chat with them at the conference!!! My parents are going with us to watch Reese during the conference and then we are going sight seeing for a couple days after around Philadelphia and up to New York!!
I am so grateful to be Reese's mom and especially for the gospel and the power of prayer. I know why we were given this little challenge in our lives. I have seen the blessings already from it, and I know that my Heavenly Father knows me and will guide me and direct me in ways to help Reese!!

Duct tape and Obstacle courses

Today we had two different vision specialists come to the house. Lately Willy and I have been very worried about Reese not being able to identify where stairs are at and just not walk off them. We have a very big challenge in trying to get Reese to look at the ground while she is walking. She is very good at cruising around the house, but never looks at the ground to make sure it is clear, because she is so used to her path always being clear.

It was nice to talk to these specialist and run my ideas past them. So here is what we are going to try!! Next time you come to our house you will see yellow duct tape lining the stairs outside our house- hopefully as we work with Reese she will learn that by seeing this bright colored tape she will realize something is different and pay attention to what it is. The next thing I am going to try is to set up an obstacle course in our house. We are going to make little steps with foam over them for her to crawl up and down, and make some tunnels for her to crawl through and things to step over. Hopefully these things will work!! If anyone has any suggestions I would love to hear them.

We also talked today about starting Reese with her little white walking cane to help her navigate stairs and other objects in her path. I have had a hard time with this today. I don't know how to explain what I feel, I am excited for her to learn how to use a cane this early in life, but I think just the older she is getting the more reality is starting to set in.

I feel totally overwhelmed today with everything I need to try and teach her. I know that one day they will have a cure for Leber's and I hope it is in Reese's lifetime!! Until then I will keep myself busy making obstacle courses and duct taping stairs!!! I will also keep the advice in my head my Dad has given all of us girls ever since we were little "Keep your chin up sis"!!!

Easter and the Zoo!!!

Yesterday we went to the zoo with my sister and nephews. This is a good pic of Reese's teeth and her new one coming in on the bottom, but if you look close there is a monkey in the background. It came right up to the glass and Reese was able to see it. Also this week we had a lady from Salt Lake who is over the visually impaired kids in Northern Utah along with 3 other ladies come to our house to observe Reese and see how she is doing. They were so surprised at how well she is doing. They said she is ahead developmentally for her age, and they don't see kids who are visually impaired get around like Reese does. She is not afraid of anything. She rips everything apart in the house, and loves to empty out drawers. She is so smart, I tell her we need to change her diaper and she will walk back to her room. It is so fun to see her progress. We got Reese a new pair of sunglasses this week to clip onto her glasses. She is sensitive to light, however when we are driving in the car she looks directly into the sun???

I am so grateful for her in my life, she is so happy and has the cutest laugh!!!

Reese all dressed up on Easter!!

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.