Saturday, February 5, 2011

When you can't, He can.

This has been a real seesaw of a week as usual. However..though it is dark and rainy following yesterday's collossal winter storm, I actually feel rather at peace this morning. Sam is quietly sitting with his dad watching roman history on the tube, the girls are having coloring time in the playroom.
It is a cozy and monkey bread and still in my jams. No hospital admissions in a month (thank you lord) and Sam is doing relatively ok this week. I could ask for more.. but it seems fruitless. There are soo many things to worry about and prayers that are much to hand over to God. Then I read about several sweet children who passed away this last month from complex problems relating to mitochondrial disease. I pray for peace for those families. I can only imagine the absolutely heartbreaking pain they are feeling. I am trying to stay thankful for each day's blessings.

Bella was star of the week in her class this week which meant I was invited to bring her class a special snack and read to them. This meant Sam had to accompany me to the school. I was concerned about shielding him from catching some kind of illness but what I did not account for was how he would react to the change from being bundled up for the very cold outdoors to adjusting to the heat of the classroom. It was warmer than we keep our house and due to his autonomic dysfunction, he does not regulate his temperature well. He immediately started getting blotchy skin coloring, red eyes and breathing rapidly and stressing out. I was stripping his clothes down but he was full of panic. He is so quiet and in that way.. it can be hard to read him. He does not cry like other babies do. He fusses, frets and arches his body with little grunts. Eventually after a walk outside, he calmed and fell asleep but I felt bad because I know what I witnessed was the beginnings of a metabolic meltdown. The rest of the school visit went well and Bella was sooo happy to have me apart of her day. For that aspect, I was so thankful I could be there.

We finally got a conversion health insurance policy number for Samuel which is good as the huge hospital bills were rolling in during the interim. The new one is ridiculus expensive and the rest of us are not covered yet while waiting for answer to our application. Alot of meds and specialty formulas have not been covered unfortunately and we are in the midst of a fight to get those covered.

This week Sam had a reevaluation by his therapist team (0-3 early intervention program) with a new plan. Even as they have huge changes limiting most people's access to multi therapies, Sam will be still getting each seperately (thank you Lord for this blessing) as he is in a higher level of need. There are some changes but overall it will still be complete coverage headed up primarily by his physical therapist who is absolutely wonderful. We will be backing off alot of the oral feeding we were trying as it was his mito docs opionion that he was being overly taxed, was not ready and would become aversive.

They think he will need more equipment in the near future which makes it all the more real that we are in an uphill battle. They said we may need to utilize a stander soon as he is not bearing weight on his own and never really has before. He still does not move his arms into position when on his belly to push up. He does lift up his neck and head when you set him up on his arms. He does have some kind of tremor or nervous movement that we are noticing in his little hands from time to time and shakes his head back and forth alot. Many of his nurses think this is a cute "no" that he is communicating but when I find him doing it in his crib hitting his head against the bars in the dark it feels more worrisome. He does now hold a sit for short periods when placed in a sit but is no where ready to get to a sit on his own. Baby steps for our little man but we will eventually get there. I have faith in that.

The end of our week was a solemn goodbye to a very kind man, my close friend's dad. He has long been fighting for his life and now he can finally rest in peace. I am so grateful to have known him. His family is in my prayers as they cope with this loss. I found this poem on another blog. It is so true and we all need to remember this when facing challenging periods in life.


When you are the neediest,
He is the most sufficient.
When you are completely helpless,
He is the most helpful.
When you feel totally dependent,
He is absolutely dependable.
When you are the weakest,
He is the most able.
When you are the most alone,
He is intimately present.
When you feel you are the least,
He is the greatest.
When you feel the most useless,
He is preparing you.
When it is the darkest,
He is the only Light you need.
When you feel the least secure,
He is your Rock and Fortress.
When you are the most humble,
He is the most gracious.
When you can't,
He can.
~Author Unknown

1 comment:

  1. Enjoyed all of the pictures! We have to keep Abigail in temps between 60-70* degrees (70 is really pushing it, actually. under 65* is ideal)... it's tough.. hard to go visiting or anywhere that we can't control the temp ourselves. So many things come along with mito... a lot of adjusting.. praying for you all!