Last week was Mitochondrial Disease Awareness week and although I wanted people to know about this too common, greatly unknown and often fatal disease, all I could really think about was how much I just want us all to wake up and give thanks for our blessings. Awareness to me really means being informed so we better understand, support and show compassion for something outside our usual understanding. The ultimate awareness for me seems to surround figuring out how God would have me best live this life. I am still seeking knowledge on this and in some ways fully reaching this type of awareness may take the rest of my life. For now, I work at it each time I count the blessings in my life. I look at my children and even when they drive me nuts or make me worry or require every bit of my energy.. they are indescribable blessings.
Tonight I found out my sister, and their family of 6, were in a pretty big car crash halfway around the world today in Belgium after a drunk driver rammed into their car. It could have been tragic, but by God's grace, they are doing ok after a pretty serious scare. My brother in law, who had sustained a previous back injury during a past deployment, is apparently experiencing problems with it now since the wreck. I will be praying for relief and healing for them all. It is so hard to be so far away.
There are some prayers for local families weighing heavy on my heart right now. Our community lost another brave soldier and another has lost his legs and one arm. It is such a tragedy for these families. Such sacrifices for all of us... I can't even find the words. Two personal friends lost parents this week. I hope God embraces them and reminds them of the beauty they shared in their lives.
I have a praise too for the addition of my cousin's first baby.. what joy it is to see a family born! I know she will make a wonderful mother.
As for our family over the last few weeks, it has been a busy time, but overall things are going okay. Knock on wood. Samuel is back on antibiotics within 2 weeks of the last round for a staph boil that appeared on his back but is doing okay. It was concerning since it showed up all of a sudden due to the wires of his heart moniter becoming exposed and cutting into his back. The stressful part for me was trying to understand how it went unnoticed for several days. It looked like something out of nursing home abuse weekly. I had not seen him fully nude myself for almost 4 days since the nurses do most of his changes and baths except on the weekends when he is fully in my care again. On this one particular Thursday the nurse was prepping him for a bath and called me in to show me this really red and open sore that was white at the center and very painful to the touch. The redness extended across half his back and I was left feeling so upset that I did not know it was there for probably several days. Sam does not communicate like other babies and has endured such pain, that he is not quick to let you know somethings.
Meanwhile the exposed wires had blood on them and were probably not even of any real use at monitering his vitals in their state. I will no longer take for granted that trained professionals are checking him over, dressing him etc.. Luckily it seems under control since starting oral and topical antibiotics, but it could have been a much worse outcome. It is always fresh in my mind that he does not seem to heal easily and his symptoms can culminate in an overall serious crash after the slightest taxing insult to his system.
I have some prayers on my heart right now about other issues I am working through but they are too complicated to flesh out here. I just need to take some time to listen to what God would have me do and stop questioning myself so much. We have alot coming up between appointments in Atlanta and a consultation with all his therapists to assess where he is at right now. I feel pretty good about that since he is cruising now around our coffee table and is standing up against whatever will hold his weight. He wants to walk badly. He does sometimes still seem very weak in the trunk and sometimes I have difficulty getting him to hold his own weight in a standing position when I hold his arms. For now we are rooting on every new accomplishment. The last and best peice of news is that Samuel is officially on the growth chart around the 5th percentile for weight. He is not even approaching it on height but, hey my roly poly is at least tipping the scales at 22 lbs and growing!
The girls are busy with school and soccer. They are loving Saturday morning games and I think Bella actually "gets" it this year. She is not off pulling daisies when the ball passes her way. Sofie was born to get after that ball as she is more the natural athelete. I love watching their unique skillsets and personalities develop. God is so good to make such a diverse world. I have another OB appt this coming week. I have not posted much on the last one as I really don't know that there was much to post. They did another very thorough ultrasound and they said the kidneys were slightly dilated but not to worry since sometimes they see that with boys.. They will watch it at this next appt again since they also did not get a good look at the heart and will need a retry. In the meantime, they had me do a 24 hr urine test and bloodwork to get a baseline for the preeclampsia concerns from my prior history. I picked up a copy of the labs since the Dr had not called and I am keeping my records due to the history from before. You would think I was requesting records of natl security for how strange the records girl acted at my request. Labs did show proteins in the urine and some off bloodwork here and there, but nothing I would think much of in relation to what they were before Sam's birth. I think they would call me if there were any concern..I just don't want to go through what I did before. I think I would fall apart. Well, my Gator team just got smashed and I am feeling rather tired and done for the day.