The Peanut Gallery

Wednesday, February 10, 2010

All in the Name of Love

Wednesday, February 10 , 2010
You may ask why we are still meeting with doctors and still trying to pinpoint what is plaguing Kennedy. I hear the comments and receive the stares more times then I would like to admit. But I stand behind our decision to fight on with our daughter. With the exception of a feeding tube, she breathes on her own and exists with this terminal disease she was inflicted with. Until she proves to me otherwise, my family and I will do everything in our means to keep Kennedy around. We have many limitations put in place for our daughter - a palette of care program setup and a D.N.R. established. To those who think I am playing god, I assure you I am not.

There must be something in the air, because it seems to be pregnancy season. As people share with me the news and excitement, there dreams, hopes, aspirations, wonder and curiosity of the new life they hold inside them I can't help, but to feel pain and sadness for myself and for my daughter. At this point in time I am unable to have another baby because of fear that I carry some maternally inherited defect that I could pass on to my offspring. This is the reason why I long to find out what is wrong with Kennedy. Her disease/syndrome holds so many answers. In essence, it is the key that will unlock my future.

Before I go into great detail about our appointment I would like to let everyone know how Kennedy is doing. She has been hospital free for over 8 months. This alone has been an amazing gift. Our family's number one goal is to keep Kennedy healthy. Brian and I could not have achieved such success with this goal if it was not for the help of my Mom! We have seen significant deterioration in the last 3 - 4 months. Kennedy is no longer able to manage her own secretions while sitting up. In addition, her seizures are back with a vengeance at night. Finally, her peripheral nervous system has become more damaged. She used to react to pain immediately, however, her reaction time as slowed immensely.

We were given this opportunity (by our Neurologist - who I think is amazing) to meet with a doctor down in San Diego. This doctor is head of UCSD's Mitochondrial and Metabolic Research Center. Dr. Haas seemed eager and willing to take on our case. He performed a very detailed examination (initial intake) on Kennedy, noting any and all abnormalities. We analyzed her current medication list and decided to add a couple more vitamins to Kennedy's Mito Cocktail. The following is Kennedy's new medication list:
  • Lamictal - Used to control seizures
  • Levocarnitine - helps to break fat from the food that we eat into energy
  • Coenzyme Q10 - is a fat like substance present in every cell of your body
  • Creatine Monohydrate - I guess he wants her to become a body builder (New Medication)
  • B-100 - provides certain cofactors which are important to Mitochondrial reactions (New Medication)
Dr. Haas felt very confident that our Neurologists' diagnosis of Leigh's Syndrome with Encephalomyopathy was accurate, however, he could not rule out without any uncertainty a couple other disease/defects. The two other diagnosis we will be looking at are extremely rare. There is not much research and/or case studies written on either.
A plethora of lab work was ordered and will take two trips down to San Diego to complete. We will have our first set of labs drawn on Saturday and will again travel down to San Diego the following week or two. In addition, we have scheduled our fresh enzyme muscle biopsy. As long as the lab work yields positive result(s) we will not need to proceed with the muscle biopsy.

We continue to travel down this road with positivity and optimism in hopes to find an answer. Every day I get to spend with my daughter has been a gift and I have been lucky enough to have been given 18 months and counting. And when the time comes for Kennedy to go to a better place, I will continue to forever cherish the time I was able to spend in her presence. She is worth every up and down, happy and sad emotion I have experienced - all the pain, sorrow, sadness, happiness, joy, excitement, anticipation, anxiousness etc....Being able to call her "my daughter" was worth it!


Sarah Bug said...

You ARE amazing. I can't put into words how I feel when reading your blogs. Your strength, determination, devotion.... it is ALL amazing! This last post has brought me to tears (as usual), but more than that, has proven how great of a mother you are. No matter what people say or how they look at you, you are an amazing mom who has and will give up more than any other to help your child. You amaze me!!!!!

Our little Miracles said...

I agree with Sarah's comments. Also, every child is precious no matter how they are given to us. It takes a very unselfish person and wonderful Mom to take care of a child who is sick. Enjoy every minute you have with Kennedy. Know that your lives are touching people that you don't even know. Stay strong and keep away from those negative people who could never understand what you are going thru.

Jennifer said...

I'm so glad you have a Dr willing to go the extra step to help you guys discover what Kennedy has. You have chosen to give Kennedy life and not just life but A LIFE! You guys are amazing!

Kerstetter's said...

yOU ARE AN AMAZING MOTHER!!! I am so touched by your families determination to do everything you can for her and realize there will be a time to let go! I think you are awesome and that is why God gave you Kennedy to love and care for- believe me not everyone cherishes their babies like you guys!!! I miss you!!!! Eventually we will get together!

Shannon Cecil said...

Your devotion and strength make me cry, it always makes me wonder if I could be as strong if I was faced with a similar situation.
It makes me so sad to think that people must be making harsh comments to you about how your taking care of your daughter. So sorry you have to deal with that!
Love you,

Teo said...

Be Positive!! All things happens because of a reason! The attitude opens doors!!

A good friend.