It's INDIE... rock and roll for me!

We have something to tell you all and if your moms are as good at keeping secrets as my mom then you probably already know…

Our little Indie has some issues…she has a rare genetic abnormality called partial trisomy 13. It is a genetic disorder where she has extra material on her 13th chromosome. We are waiting for more blood work to be done to determine what part of her chromosome has been duplicated and that will better indicate the severity of the problem and what types of things will be affected. Don’t be too scared when you google trisomy 13 and look at the images because they are awful, she is already doing way better then most, as most full trisomy 13 babies only live 1 or 2 days so we have already been blessed immensely. Due to the abnormalities in her genes, doctors found that she has what they call “agenesis” of the corpus callosum. This means that during gestation she never developed this part of her brain. The corpus callosum is centrally located in the brain and is a structure that is basically a network of nerves that allow the left and right halves of the brain to talk to each other. How much of her cognative function will be affected by this is yet to be determined, however, we have done some limited research and have found that some literature states that as high as 75% of children born with this abnormality have normal brain function by the time the reach three years old. Again the waters are murky as to how much of her higher brain functions will be affected. but we have all the faith in the world that miracles are real and she will have all the opportunities that heavenly father intends her to have while here on earth. A couple of other things that they have found in their testing is that she has a fairly normal atrioseptal defect, in her heart, and a small cataract in her right eye, neither of which should require immediate surgery or intervention and should cause no problems with her activity or vision.

We have been working with the most amazing doctors. Her pediatrician is brilliant and the geneticists at the University of Utah are world renowned. We are working closely with Primary Children’s Medical Center as well as the Moran Eye Center near the University of Utah and we feel comfortable that all of these facilities are the “best in the west!” She is in the most capable of hands.

We’re sorry we didn’t tell you all sooner. We were waiting to get some more definite answers from her doctors but because things are still unclear and probably will be for a while we figured we might as well tell everyone. At least this way you can keep her in your prayers. I wanted to call you all or tell you face to face but it is kind of an odd subject to bring up and I have had a sick stomach thinking about how to tell everyone and when to tell everyone. For the longest time only our parents and siblings knew and I just told grandma and grandpa a few weeks ago. It is hard because every time we tell someone they go through all of the scared emotions that we went through months ago and we go through it all over again so I guess I wasn’t ready for that but now I am. We really didn’t know how else to handle the situation, none of us have ever had to deal with anything like this, and this is how we decided to approach it.

We just want to let you all know that we couldn’t be happier right now, Indie is the most incredible blessing in our lives and we wouldn’t have things any other way. She has brought an indescribable spirit of peace and love into our home and we have already learned so much from her. She is truly a blessing in every sense of the word and everyone who knows her and has been around her can feel it. WE ARE SO PROUD!!!

On August 11th she is going in for an MRI of her brain to make sure everything is working properly including her eyesight which is something they are slightly worried about. Alicia suggested we do a fast sometime before then so if you would like to join us that would be great. We will let you know.

We love you all,

Jess, Tony, and Indie