Reese's Amazing Journey

Reese's Amazing Journey
The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart. - Helen Keller-

Monday, March 21, 2011

We have a Gene!!




I just got word today from our geneticist that Dr. Chiang in Denver has found a gene mutation in Reese. This is exciting news but it makes me face reality also. Knowing her gene we will be able to know if there is anything they can do for her in the future with the research they are doing

so that part is good. On the other hand, I have always hoped in the back of my mind that she was misdiagnosed and that maybe there is something they could do to help her vision. With this diagnosis she for sure has Lebers Congenital Amaurosis, we are just not sure which type. It is all pretty confusing actually how many different types of this disease there are. Our geneticist wants to meet with us to discuss the risks for future pregnancies and what this gene diagnosis means, but I am in no hurry to meet with her. I need to just take this and let it soak in. I put my faith and trust in my Heavenly Father that he will guide me in having more children and let me know what his plan is for us. We trust our Heavenly Father completely and know that when we come to that point in our lives that he will guide us and give us the strength we need. Somedays my heart breaks when I see Reese constantly running into things and not being able to find toys that she has dropped that our within her reach. But on the other hand she is such an amazing little girl and can do so many things that I thought she would struggle with. I love her so much and she is such a great example to me. I love to watch my nieces and nephews with her. The other day my nephew Brogan was playing with her and some other kids were around and he said "This is my niece Reese, she is blind so you have to help her!!" It was so cute, and they are all so amazing with her.

Reese had her second birthday last month so I included a pic of her at her party. We had a little party with family and she had a blast!!

Thursday, March 17, 2011

Update

It has been so long since I have updated our blog. My computer has something wrong with it, and won't open blogs so I can only do this when I am at another computer. Anyways we have had a great few months. We started our second round of genetic testing at Primary Childrens 3 weeks ago. The bloodwork is sent to Denver to be tested and should only take about 3-4 weeks this round instead of 9 months. The genes they are testing for are the "rare" genes that cause Lebers, and I feel like they won't find a gene again, but I am OK with that. I just want to make sure that I have done everything possible in finding a gene, so I can move on!! They took me and Willy's blood too for testing so we will see what happens.
Reese is still going to preschool in Ogden twice a month and loves it, her teacher is really good with her, and I love to visit with her because she has two visually impaired children, so it is good therapy for me as well!
Reese is getting big some of the things she picks up on just amaze me. She can say her ABC's and what sounds they make and words that start with that letter now. Her Grandma Branch gave her flashcards that have the letters and sounds on them and we read them a lot and she has picked up on them so quick!!
Reese is also learning to use her starter cane!! She is so good at getting around with it, and loves to run it into things. We meet with her O&M specialist at the school for the Deaf and Blind twice monthly and they work on her cane skills. Her picture is in the hall of the school using her cane, and they call her their little model child!!
Her other favorite thing that cracks me up lately is she loves to play with her older cousin Miles. Miles loves to play with my cell phone and talks on it and then tells me the cops are coming to take me to jail. So last night Reese picks up my phone and starts talking and says Hi-- the cops are coming!!! Miles and Reese are definately trouble together!!! They love to play!!
Well I will update again when we get our genetic testing results back and hopefully get some new pics posted!