Tonight I scanned back on the blog a bit and realized that it is not that exciting or fun to look at..plus it is completely full of errors I normally would never make but am just too tired to care to fix. I would love to make it more interesting with flowers and cool fonts and neat links or sidebars or more pictures. I just type away at night when I am so tired but am needing to get it all out of my head so I can rest. My messy run-ons and spelling blunders are so indicative of how easily little stuff gets swallowed up in life's cracks when there are bigger earthquakes in the area...no time to stop and edit. I am so tired and often rushed or plain overwhelmed..sometimes the cup runneth over. So for now I will have to be like Scarlett and put off the fun attention to detail parts of life that just don't work in today's schedule.."after all tomorrow is another day."
Sam and I are leaving in the morning with the nurse on an angel flight bound for Atlanta for a few days. It is a tiny 4 seater (mooney?)with strict weight requirements so Jason can't go as they are barely letting me and the tiny nurse go. Sam just can't take strain of a long drive so this is best option. I am so thankful for this nurse as I am not sure I could do this one alone. She offered to go along out of the kindness of her heart. (God sends us angels..) The nursing company can't pay her as it is across state lines and we can't pay her for conflict contract issues. This is a followup meeting with the mitochondrial disease expert's nurse who will go over in detail the report findings and treatments/ managment plan as well as answering questions etc. I am a little worried about what she will say about what to expect..do most kids with his level of dysfunction do well over time or does this have more of a progressive outlook. I need to have a more solid basis for the probable origin of his condition. It is listed as "probable Mitochondrial disease" because not all the testing is complete or indicating clear origins of this disease as a primary or secondary dysfunction. They may never have a clear understanding of what has happened to put his metabolic biorhythems into this malfunctioning state. I need to know how to maximize his health and optimize the cell's production of the energy his body needs. They don't have any info since October on Sam's case so I want to know how the GI down turn plays into all this as it is the most recent change in his condition. I also need to understand options for attempting to get insurance to cover his mitochondrial cocktail of medications..mostly supportive vitamins/ enzymes however they are very very expensive and we just realized the $200 boxes we ordered that we thought would cover 1 month actually only cover 4 days! I lost it a little bit when I made this discovery while reading through the treatment plan. We are praying about it and hopefully we can get insurance to cover it once we have a new policy number..that is the other big prayer..please let the insurance approve and send the policy number..equipement company called me today..With all the equipment Sam requires, we absolutely can not have issues for long on this front.
On a positive note, since receiving all feeds in a more broken down formula placed right into the intestines (skipping the stomach)Sam has had about 1 BM per day and is tolerating feeds well. His system seems to be happier but is it because in general he is at best health or did switching to the GJ help.. don't know. Sammy's mood was also great. He was upbeat and social today and I was able to place him into a seated position although the arms were holding his body like kick stands. At least this held for a few seconds and he seemed to want to stabilize. I tried very hard today to get him to do more with tummy time and try to pull arms up and under to push himself up but that is still a tough task for him. He is making lots of new sounds which it had been weeks and maybe more since he had tried to do that. When he turns a corner to feeling better and having lots of fluid and food in his system, he makes more progress. I have to be patient and give him time. I know he will get to each of those milestones as his body allows him the strength. Tomorrow will be a big day for him so I am glad he is resting easy tonight. Send up a prayer if you read this before our flight at noon tomorrow and the appt at 10 am on Monday...need an easy flight and a productive optimistic meeting. Thank you to all of those praying for Samuel and our family.. this may be a valley in the topography of life but we are moving along and looking for hills ahead. :)