The Truth Hurts

Today I ventured into Dallas and took Kennedy to her first appointment with the Geneticist. For whatever reason this appoitnment opened all those wounds that I thought were healed.

Yes... I have come to accept that Kennedy has Albinism. Yes... I understand that this will have a huge affect on her daily functioning. Yes... I know that there is no cure. No... It doesn't make it an easier going through the process to identify where the mutation occured. As many doctors that we have been to you would think that this would just be another rock to climb but for whatever reason today was really hard for me. I found it difficult to hear the doctor say "mutation" over and over again. I found it heart wrenching to hear her discuss with me Kennedy's future as far as being a mother. I almost cried when we talked about the lack of pigment she found when examining Ken-Ken. I keep holding onto the slight chance that a doctor will say that she does indeed have a moderate amount of pigment. I am coming to face the reality that she probably has the most complex form of Albinism resulting in severe vision impairments.

Needless to say the Geneticist has found a loop hole to get us around paying the $2000 I was going to have to pay to get the tests done that will locate the exact gene that mutated. If the pediatrician orders the labwork we will have to be admitted to Plano Presby to get it done. These samples will then be sent to Colorado for testing. The lab in Colorado will then bill the hospital who will then bill us. This means we will only pay 20% of the bill. If we do not get admitted to a hospital to have this done we will pay $2000- yikes!!! It will all be outpatient and lengthy but much more cost efficient. I should get this done within the next few days! I am leary of the results because I will then have to face the truth!!!

Brooklyn has gotten her new bifocals and has been doing great. Today we got them readjusted so they are no longer slipping off her little nose. I will post a pic soon because I recently got her hair cut into a little bob and it is darling!!!!!

For those of you who do not know I have been faced with much pain since having Kennedy. After many tests including sonograms and biopsies the doctor thinks we have found the cause. My uterus and cervix have come back showing pre-cancerous cells. We caught the cells in a stage or two before they progressed into cancer. I go back in November to have more biopsies done and then we will go from there with our plan of treatment. My doctor is very positive and seems to have faith that we can prevent these cells from progressing any farther. Some days I feel fine and other days I am ready to throw in the towel and have it all cut out. My heating pad has become my new BFF!!!! Other than pain medication, muscle relaxers, heating pads and faith there is not much more we can do at this time!!!!

Daddy has started football. I know he wishes he could be at home helping me more and spending time with our girls but such is life. He is gearing up for what we hope is a winning Raccoon football season! I know his head is spinning just as fast as mine right now as he tries to take everything in! We love you Daddy!!!!

I will no longer update Kennedy's Caring bridge website- I will actually delete it soon. This is a much better way to keep you updated on all of us!!!

Much Love,

Mommy Gibson