Our new addition KOKO

We decided to get a new addition to our family! My sister gave us this little puppy for Reese and she is super cute!! We asked Reese what she wanted to name it and we gave her a few names to choose from and she kept saying koko, so that is her name!! We had a great Labor Day Holiday, it is my hometown Wellsville's celebration, so we get to spend time with all my family!! We have so much fun, it is by far one of my favorite holidays!!!

Mom and Reese Canes

Today our orientation and mobility specialist came and brought us canes to start using. She left one for Willy and I and one for Reese. By using ours and talking about the bumps and steps we feel with it, Reese will hopefully catch on and want to use hers!! I gave Reese her cane after she left, she picked it up said no and threw it on the ground!!! (what a great start) lol... She is just suppose to play with it and explore right now because she is so young, so I am not too worried about it!! Right now we will mostly use it for stairs. It is so crazy to be starting all this, and the older she gets the harder it is getting to think outside the box of a "visual" world.

"OUR CANES"

Doctors Visit- Gene? No Gene

Our trip to Philadelphia went really great. We took off on Friday July 30th, Me, Reese, Willy and my parents. Reese had a doctors appointment Saturday morning at CHOP (Childrens Hospital of Philadelphia). We met with Dr. Pierce who was a great doctor. He answered a lot of questions and did an exam on Reese. He confirmed what our doctor at Primary had said that yes she does have something wrong with her eyes but he didn't know the extent to which she has Lebers. He explained that there are different types of Leber's and that it could be a rod or cone dystrophy or something else. He said we would have to wait to get our genetic testing back. Willy and I also attended a two day conference on Lebers on which we learned a ton of great information. Willy went to all the medical research sessions, and I attended the informational classes like on music therapy, orientation and mobility etc... I loved the classes I went to and Willy couldn't quit talking about all the things he had learned. My parents even went to a grandparents discussion that they said was really neat.

After our the conference each day we were able to tour Philly and see all the sights Liberty Bell, Independence Hall, Betsy Ross House. Philly was a fun city to be in, but very dirty and a little scary. Willy and I took the underground Trolley one night downtown and it was a little creepy!!

After three days in Philly we took a bus to New York for two days. We had such a great time there, I will never forget all the fun memories we made and it was so great to have my parents there with us. Willy, my dad and Reese went back to the motel each night at about 11 and me and my mom shopped till we dropped each night. The last night there My mom and I went to the Broadway show Mary Poppins, it was amazing. The show lasted until 11 of course we couldn't go back to the motel we headed out shopping at about 2 we decided to head back to the motel because we had to get up at 5 to catch our flight. We were only about 5 blocks from our motel but decided to get a cab because we didn't think our legs could hold up for even 5 blocks!!!

Monday morning after we got home I got a call from our geneticist at Primary. She said that after 9 months of waiting she had recieved our genetic testing back from Carver Lab in Iowa. NO GENE FOUND. What this means is- there are 15 know gene mutations that cause Lebers. The Foundation for Retinal Research is still researching possible genes that could cause it but right now only have 15. 30% of the people that have Lebers however have genes that are unidentified. We are one of them. This means that we are farther than ever away from a cure. Reese's DNA will go into research now, but I have heard from other parents that you feel your child has been completely forgotten about once it goes to research. I HAVE HOPE....... I will NEVER give up hope. On the other hand though I am coming to accept the fact that Reese will probably be all the way blind one day. I am brushing peoples comments off easier lately that I know they don't realize hurt. I feel like I have spent the last year since we got our diagnosis in a cloud feeling confused, grieving, being a little angry, but also being so grateful and overcome with joy for having Reese in my life. The last year has taught me so much about being compassionate and realizing that the Lord prepares you for everything in life. Willy and I talked tonight about things that we felt have prepared us to help Reese. I am so blessed in my life. I know that my Heavenly Father knows me and knows that I can learn the things I need to help and teach Reese. I have so much HOPE...WE WILL NEVER GIVE UP HOPE!!!!

There's still a Chance!!

So when we go to Philadelphia there was a chance that we would be able to see one of the specialty doctors that research Lebers. Well I was getting kind of bummed because we were suppose to know the first of June if we got an appointment or not and I never heard. So this morning I e-mailed the gal over the Foundation for Retinal Research and asked her if she knew anything about doc appointments and she said the schedule hasn't came out yet but should next week!!! I was so excited to hear that. I know the doctors back there won't have any miracle cure, but I want to talk to someone that knows there stuff about Lebers and who can give me straight answers!! Dr. Stone is the master mind with Leber's and he studies at CHOP in Philadelphia. He will be at the conference which even if we don't have an exam with him it will be great to introduce ourselves to him and kind of get our foot in the door in case there is a cure for our gene type down the road. I am getting so excited to go. I can't wait to meet all these families around the world in our same position and see all the awesome kids with Leber's!! I will update the blog hopefully next week when I hear if we got an appointment. Until then if any one has any great suggestions on how to entertain an 18 month old on a 5 hour flight I would love to hear them!!

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!!