The Peanut Gallery

Thursday, February 25, 2010

The Strength of an Egg

Thursday, February 25, 2010
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albiet flattering,it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes!

If you'll think about it, you'll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid.

Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.

A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock.

It takes a lot more than pure hardness to hold the hand of hope. Parents of [medically fragile] children are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household, going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed! Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence.

Unlike Humpty Dumpty, though, parents of [medically fragile] kids will pick themselves up and put themselves back together again.

~~ by Juliet Freitag ~~


Thursday, February 25, 2010
The art of waiting......It has become a trait that I have learned to master. Waiting for test results, waiting for answers. At this time, waiting is a word that defines my life, my existence. While I lay in bed at night I eagerly wait for morning to come. Since Kennedy has been born I suffer with severe insomnia. It is so bad that I dread night time. I dread getting into bed and having to wait there for 6 hours. But why - is it the silence, the peace, the calmness? I do not know.

Maybe it is because the night leaves me weak and vulnerable. Oh the things your mind can think of when it is idle - scary! And then it hits me, my daughter is dying and I don't know when, I don't know why, I don't even know what from (still waiting test confirmation). I wait. I wait for the day when just one moment, a split second will change my life forever. It will re-write my history and leave me a changed person. So, I wait.......

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!

Monday, February 1, 2010

Simply Kennedy

Monday, February 1, 2010
It has come to my attention that I have neglected my blog for sometime now. So I am composing a great post, but to hold everyone over until it is complete here are some pictures I had taken of my precious Kennedy. These were done by a wonderful friend and an amazing photographer - Jennifer Bagwell. You can see more of her work by going to: