I am not sure why I am blogging today as I have no time and am flooded with a million to-dos but I guess I need an outlet. Late in the evening, I have been trying to work on a little photo video project of Sam's first year and honestly I am having a hard time getting through it. I am a total emotional mess. I look at his sweet face on the day he was born and I think... what a nightmare it all was and yet the most beautiful little man came into our lives amidst traumatic events. I can't let go of the anger I have about the events leading up to the birth. The very complicated pregnancy and how my Dr kept saying everything was absolutely fine.. I know I have to let go and that God wants me to do that. I need to process these rough feelings and in some ways, I need to allow myself to grieve the transition we have been in this year to where we are moving forward with a positive and hopeful attitude for him. It is just easier to say it than to overcome it.
Sam slept most of the weekend and although he initially had a rough time with the introduction of the MCT oil to his diet, he seems to be handling it ok today. Praying he has gained by the next appt tomorrow. His little diapers are seeming to get bigger on him and I realize they are not growing..he is getting smaller. He has not been able to hold the stance on hands and knees as he did for the physical therapaist the other day but it gives us something to work for. He sat in his little bouncy seat for a few minutes during my impromptu garage sale saturday morning but as it warmed up he seemed taxed, eyes getting red and showing fatigue and so he went back inside. We are supposed to have nursing care start with full time day coverage and weekend nights soon but they are having trouble getting it staffed. One of their issues is that all their nurses are smokers..crazy insane! I have to set limits though and he could not handle the smoke he smelled on a therapist's clothing and it nearly put him over the edge every time she walked in our door so I am going to listen to him on that one. His mito Dr said smoke is a HUGE problem for mitochondrial production.
In an effort to get my mind back in rainbows and sunshiney places..I am going to try very hard to tackle a few big home projects this week. I feel like alot has been allowed to slip through the cracks this year and the cracks are beginning to show!! I need to put more work into my new years resolution of shedding out the clutter in my life (physical and mental)so that is the name of the game this week..after we tackle therapies, Dr appts and all the normal craziness! Well better run get my kids from various schools... The day is gone in such a blink!