Six months ago today our second angel, Logan, entered this world. Who knew that our life would take such a different journey than we had imagined? Only God could have known and we are so blessed that he is traveling this road with us.
As of right now, we are done with the Diflucan (for the infection in his mouth, at least if it all looks clear tomorrow), by next Thursday we will be off of the ACTH which means we can also stop the Zantac twice a day. After that we will discuss the schedule to remove the Keppra (3 times a day), B6 (twice a day) and Klonopin (twice a day). At that point we will be on ONE medication! Now, that's not to say we won't be adding another one in the near future, but even the thought of only one is exciting. Not to mention that our child will get his body back! It has been overtaken for a while with the increased weight, infections, crazy hunger and anything else that the steroid affects. Oh the joy we will feel when he is steroid free!
I know that every parent is overwhelmed with love for there little ones, but it hits me sometimes and I just can't believe it. We are so incredibly blessed with our two boys that it almost seems unfair.
Freddie...I don't even know how to put it into words. The words he uses, the way he phrases things, the way his little mind works, his sense of humor, his wit, the way his eyes sparkle, his smile, the way he says "Don't worry. I'll take care of you Mommy", the hugs he gives, the way he loves us as only a child can...I could go on and on. As hard as the days are sometimes, there is nothing like the love of a child.
And Logan, the light in his eyes says it all. When he smiles, he smiles with his whole body. His eyes light up, his big 'ol cheeks tighten and I think his toes even curl. It would soften even the hardest of hearts. God has so much planned for him. The neurologist, Dr. Nelson, reviewed the results of his sleep deprived EEG with us yesterday, and some of them even surprised her. The spasms are gone (YAY!), there is still abnormal activity - spiking from right to left (not surprising), but she said the background was clear. It looked like an EEG from a 5 month old. And she said that she can also tell his brain was maturing. She was surprised to see both of these, it was not what she expected at all. See what I mean? He's not your typical 6 month old, in many ways. He has had a busy 6 months in sharing God's love, and showing us God's love in a whole new light, and he has a lot more to do. Guess that's why he's had to increase his calories lately. We may be in for a wild ride over the next few months!
Getting the boys back on track has sort of become the easy part. What's hard now is even having a decent conversation with my sweet husband. Between sleeping on separate sides of the house, running a business and keeping the boys straight, the time for us tends to run short these days. I know that God will take care of that, but there's a lot we have to do also. It's all a work in progress, but it sometimes feels like an uphill battle.
We're still working through insurance issues. The timing of everything could still prove to be a challenge. In short, the temporary insurance that we had when Logan was diagnosed may not cover everything and consider his condition preexisting. Luckily that's only 3 hospital stays and a slew of tests. Yikes! But, we can't tackle that until it becomes an issue. So we'll pray that it all works out and focus on what we can control right now.
We are beginning our journey down the road of therapy for Logan, starting with physical therapy - PT. I can't wait to see him come alive when he has a chance to do all of the things that he should be doing at his age. From what we've been told, many times kids really bounce back fast after they come off of all of the meds. If Logan's little brain allows it, I know he will be able to do so much.
Last night as I was getting into bed, I knew I wouldn't be able to just lay down, close my eyes and go to sleep. I have to admit that I dread the night time most nights because I have no idea what to expect. Are the boys going to sleep? If they get up, who will get up first? If I'm in Freddie's room, will I hear Logan? If Logan is already up and Freddie wakes up, how will I get him back to sleep? When Logan wakes up, how long will he be up and how tough of a night will he have? I didn't want to watch TV and I couldn't find a book I wanted to read. I have always been good at trusting God, but I've never been very good about reading and studying my Bible, Last night however, it was what brought me comfort. I read a few passages, read my devotion and felt a comforting peace fall over me. It was still hard when Freddie got up around 2:30, then Logan was up from 2:45 off and on until this morning around 7am, but at least I went to sleep feeling peace!
I'm realizing that all of this with Logan encompasses so much more than just a diagnosis. I realized that initially, but it takes a while for the magnitude of it all to sink in and we still don't grasp it all. Some days we are great. Everything goes according to some sort of plan, things seem to get done, everyone is fed and well cared for and seem generally happy to be part of this family. Then there are those days when the opposite of all of that seems to happen. There are even days that have some of both scenarios. I also realize that is part of everyone's lives. Ours just have different circumstances. It's like that saying that says something to the effect of life being 10% of what happens to you and 90% of how you react to what happens to you. It's so true. We're all human and we all have ups and downs.
So, this has been the first six months of our little one's life and six months out of the first three years of our big boy's life. It has been quite the roller coaster ride, but we have learned more than I would have ever believed about so many things. God has given us angels of his to care for here and we are trying to learn how to do that daily. He has blessed me with time to be home with the boys and a renewed sense of myself. I don't always like who I see in the mirror, but I'm learning who that is and that part feels great. I realize I've missed being me. Finding myself again really helps me to be a better mother. Now I have to work on the other roles in my life - servant, wife, daughter, sister, friend. Luckily God is patient, hopefully everyone else will be too.
Sweet dreams my sweet boys. I love you all more than life itself and I thank God for blessing my life with you.
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