Our Little Violet

This morning came very quickly as the night sort of blurred into the morning. The insatiable hunger has kicked in, along with the irritability. Again, not as bad as I imagined, but he's cranky pretty much all the time. He wants to be held all the time and sometimes that doesn't help. The only thing that always calms him down is nursing. I'm either holding him or nursing him so often I don't seem to have time for anything else like picking up my house, cooking, cleaning, getting dressed or entertaining Mitchell. Last night Mike and I finally got Dominic to bed at midnight and at 1:15 he was up. Every time he'd fall asleep I'd try to put him down and he'd wake up crying. So, I slept sitting up in bed and basically nursed him from 1:15 to 6:30 this morning. Finally I told Mike at 6:30 that I had to get some sleep and he took him from 6:30 until 8:30 when of course, he wanted to nurse again. I can see why babies on this med gain so much weight, I feel like a freaking milking cow! But, hopefully this helps me lose some of that baby weight :o)

Although the crankiness and hunger have kicked into high gear, the other side effects seem to have stayed away so far. The nurse came again this morning and his weight, glucose levels, and blood pressure are still normal, so that is a good thing. Although, we're only on day 6. But, we take it day by day and today is a good day.

On a good note, I think we're seeing some progress. On Thursday, he only had two episodes and they were 13 hours apart. He was having the clusters about every 3-5 hours prior to the ACTH. Then yesterday, he only had two episodes. He had some this morning at 6:30 am but he had gone 20 hours since his last episode. So, we're seeing them start to space out, which is good. Also, I spoke with Dr. Arndt and he said the EEG Dominic had on Tuesday is much better than his original EEG. He's starting to see some normal sleep patterns and his "background" activity (which I'm not really sure what this is) is sometimes in the "normal" range. Obviously, because of his condition, Dominic will never have a "normal" EEG, but to see some normal activity here and there is a great sign that the medication is working. His first EEG I was told was all over the place and full of a lot of chaotic brain activity, so this is a great improvement.

A dear friend of my family sent me a daily devotional called "Streams in the Desert" and I have been trying to read it each day, although that doesn't always happen. But yesterday Dominic was really fussy so I sat down with him and read the reading out loud to him. The verse was from Philippians 4:11 - "I have learned to be content whatever the circumstances". Paul wrote these words from a dark prison cell. The reading went on to tell the story of a king who went to his garden one day only to find it withered and dying. He went to each plant and asked what the trouble was. The Oak tree wanted to be as tall as a Pine, the Pine was mad it didn't bear fruit like the grapevine, the grapevine wanted to produce fruit as large as peaches and the geranium was fretting because it wasn't as tall as the lilac. Yet coming to a violet, the king found it bright and happy and he told the violet he was glad to find a brave little flower in the midst of this discouragement. The king told him he didn't seem least bit disheartened. The violet responded "No, I'm not. I know I'm small, yet I thought if you wanted an oak or a pine or a peach tree or even a lilac, you would have planted one. Since I knew you wanted a violet, I'm determined to be the best little violet I can be". The moral of the story being that "others can do a greater work, but you have a part to do and no one in God's family can do it as well as you". It hit me as I was reading this and looking at my little crying baby that Dominic is God's little violet. He may not ever go on to be a great athlete, or become valedictorian, or go on to become CEO of a company, or do other great things as others will, but he can do what God has planned for him to do. I need listen to Paul's words and be content whatever the circumstances and know that when I strip myself of everything, it is in that nakedness that I will find everything restored a hundredfold.

My mother-in-law gave me a necklace for my birthday, which happened to fall on the day we were released from the hospital for our first visit. She had ordered it months prior, not knowing what was to come, but it seemed to be such a fitting gift. It is a necklace with a ring and on that ring it says "I can do all things through Christ who strengthens me". The other night I was nursing Dominic and when I tried to pull him away to burp him, he was stuck on something. When I looked down, I saw his little hand grasping the necklace and holding onto it, what looked like, for dear life. I'm not sure if I'm just more emotional right now, but I started crying. Because it's true, he can do all things through Christ, who will give him the strength. And it seems like he knows that as well, and is holding onto that with a small, firm grasp.