City of Rocks!

Ten Kids, Ten Adults, One Razor, Two Rangers, 6 Four Wheelers, and a Truck pulling a trailer in case of any breakdowns and we're off!!! We had an awesome weekend with my family.

We started at my sisters house in Oakley, Idaho, rode up to the City of Rocks, down to Almo to the Outpost for lunch and up over the top of the mountain back to Oakley. It was about a 60 mile trip and we had an amazing ride. The City of Rocks was great, the kids had fun crawling all over them, and the leaves on the way back were such a pretty yellow!!

Willy and my nephew Brogan ready to head out in the Razor!!

Reese and I on top of the mountain looking into Oakley!!

Willy took this picture of all our ATV's from on top of Bath Rock!! Him my two brother in laws and nephew Will climbed to the top of the rock!!

My FAMILY!!! We had such a great time. Everyone took turns riding together!! No kid wanted to ride with there own parents, Reese and grandma spent the whole day in the Ranger together with different nieces and nephews riding along with them!! It was so much fun to be together, we all get a long so good. Of course all of us girls stayed up until way late talking and laughing!!!



When we got back to Oakley, we stopped at "Robins Pumpkin Patch". It was such a cute place they pulled the kids around on a trailer and let them pick which pumpkin they wanted. It was quite the decision to pick one, since there were over 5000 to choose from!!!

Our First Fundraiser

Last weekend we had our first fundraiser for The Foundation for Retinal Research. My nephews wanted to do have a little booth at Portage Days so we decided to do a bake sale, sell purses and braille bracelets. They did an awesome job raising over $150, and we had a great time doing it. My sister talked me into riding her bike through the parade with my nephew in the wagon tied on behind me!! We had these shirts made that say "Reese's Fight 4 sight Team". We plan to do more fundraisers for FRR in the future with the next possibly being a 5k run in the spring!!

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!!