Lord - Forgive me for selfishly wanting to control everything in my life. I know it is all in your hands. Tomorrow is our muscle and skin biopsy and lumbar puncture (spinal tap?) and gathering of all blood amd samples etc needed for the scientist researching Sam's case. Please give Sam strength and help him through what should be a relatively basic surgery. Nothing for our Sam has ever gone the simple and smooth way and we are told he is at high risk for anesthesia issues. Lord, help Jason with these last few days keeping the girls and life at home going smoothly till we can all be together. Help our girls to understand that we will be home soon and that amidst all this craziness, we will find normalcy for them. We are so thankful, Lord, for all our blessings and for each moment, and smile and kiss we share with our son. Our children are such gifts in whatever packages they come. We thank you for making us a strong family that can get through hard times and for the hope that keeps us all going. Thank you for the people who come into Sam's path and are kind to him and pray for him. Thank you for my dear friend that makes each day possible here in Atlanta..going as far as driving here in the middle of the night tonight to bring Sam Pedialyte for his preop needs. Help us to have opportunities to do the same for others too. I pray we have calm and peace tomorrow and find that tomorrow is just another procedure that shows how strong really actually made our sweet Sammy. We humbly ask that we may know more from these tests and that the knowledge will help us to better his quality of life.
It has been a rough day.. I kept it together through a long 2 hour meeting with the Mitochondrial specialist about all of Sam's history and possible prognosis. He would not venture to give me his full suspicions but did seem to think we would have answers which is far more than most have told us. He strongly felt our Drs had spent more time on the acute issues of the Bradycardia etc.. and not near as much on discussing with us the full nature of some of the possible neurological and neuromuscular implications. He did not beat around the bush and it made me have to face some realities that I wish I did not have to think about.. he pointed out some things I of course knew but did not like to analyze about Sam's overall development. It seems to soon to question certain things. So..now we have to just get through tomorrow and pray that he has no problems with anesthesia. They are taking MH precautions with him especially due to his past issues post op and the fact that children with these types of symptoms are at higher risk of problems relating to anesthesia and or intubation. Thank you all that follow the blog and are praying.. we feel the prayers. Sam is being wonderful all through the week for me and I can tell he just misses his dad and sisters. It breaks my heart when he calls out for da-da.