Things are much the same around here, I guess. It's hard to really know as the days seem to blend together. I saw a comment from someone the other day that said "The days seem to pass so slowly, but the weeks fly by." That is so true. I'm starting to realize that everything that I think I can sort of carve into stone, even if it's soft stone, is going to change. So basically, I'm back to the same thing I say every time - one day at a time is the only way we can approach our life. It's a good thing I'm not a huge planner. I knew that would somehow payoff for me at some point in my life.
We thought that we were only about two weeks away from Logan getting off of the ACTH steroid for the spasms. That was about a week ago and it has become painfully clear that we still may be on it through the end of October. His little life seems like such a roller coaster ride for him. He had a couple of good days recently where we had some smiles and actual laughter, however beginning about 3am this morning the picture was very different. He is sleeping peacefully as I type this, but that's about the first time since 7:30am. It's a toss up as to what is actually bothering him, or maybe bothering him the most. Is it the 5 medications he's currently taking? The breakout on his face from the steroid? The thrush infection that developed in his mouth because of the steroid? The raw places on his little bottom from all of the medications? The activity in his brain that we cannot see? Who really knows at this point? It just stinks to see him this miserable and not be able to really help him. It's so sad to leave him lying on the couch or in the swing crying when you know that he's actually more comfortable there than when we try and hold him. I've heard that the steroids make you feel like you want to come out of your skin!!! No one should have to endure the things that he is enduring. And yet, I realize that we don't have it nearly as bad as so many others who are suffering. He's a tough little guy and I know once we are on the other side of all of this that he is going through right now, his sweet little precious personality is going to shine again!
Freddie is doing great, once we get past the crying and whining each morning. It's amazing how a 3 year old can learn so quickly to milk the sick thing. We think he takes after his dad!
He hasn't complained of pain at all and he is taking his medicine like a champ! Some days it's a little tough to get him going on food and liquids, but he's getting better each day. He's been having a tough time sleeping at night and finally fell asleep from pure exhaustion yesterday afternoon. He had a great nap, but unfortunately that kept him up until about 1am. After that though, he was able to sleep very peacefully until about 8:30 this morning - well, once he moved from his bed to the couch at about 6:30.
Nana had Freddie duty last night and I had Logan duty. Logan was up from 3-4:30am and then back up at 7:30. We joked that from 1-3am and 4:30-6:00am (Fred was up at 6am), this house was actually quiet. Welcome to our world! It's always an adventure to see what each night holds. My mom and I compare notes on how the kids did through the night. Then Fred calls during the day and I give him the update as the chaos occurs in the background. Ahh!! Whoever coined the phrase "Laughter is the best medicine" knew what they were talking about. A Corona or Miller High Life here and there helps as well.
So now Logan is awake and starting to fuss again. Poor little thing. Freddie and Nana will be back from her house soon. They went to take care of one of her crape myrtles that is diseased. Believe it or not we let her out of our house every once and a while. Apparently the deal is she has to take one kid with her when she goes and she also has to promise to come back. We also had Papa running errands today.
We are planning for Logan to have a sleep deprived EEG in the morning. Basically we have to wake him up early, around 6am, feed him and get all of the meds in him and keep him awake so that when we arrive to his appointment at 10am he will be tired and hungry. They want him to sleep through the hour long EEG. I don't think he has slept more than 20 minutes today, so we'll see how that goes. Either way, we'll get through it with the Lord by our side. He's working overtime on us lately.
It's just before 5pm now and time to start the night time routine. It will take us from now until about 9pm nonstop to get the kids fed, medicated, bathed and in the bed. Sounds crazy, but it's so true. It only takes 2-3 of us adults. Luckily Fred just walked in for the night, very early for him, so we might actually get it all together easier than usual. I'm not placing any bets however.
Laughter through all of this is one of the many blessings that God has showered upon us. There are times throughout the day when we simply burst into laughter. We can't take things too seriously, it's not fair to anyone. Even though we have some serious things we are dealing with, being so serious about it all the time is not going to help. I'm very thankful to God for keeping the bitterness and anger out of my heart during this journey. He continues to keep us focused on so many positive things. We have an ongoing joke that if Nana gets a shower then she can't eat that day, and I get to eat but no shower. We certainly can't find time for both of us to eat and shower on the same day! We both ate today, so you can figure out what that means. Oh well, we'll smell good and starve tomorrow.
As I was getting ready yesterday (it was my day to shower) I caught a portion of a sermon from Creflo Dollar Ministries. When I started listening he was talking to the congregation about the economy and job loss. He was focusing on the fact that we are all employed by God. Any job that you have is just an assignment, so if you lose your job - say from a homebuilder - that was just that particular assignment. You're still employed by God to do his work, for his kingdom and he will give you your next assignment, you just have to listen to him. I guess this is mine. Thank you God, I couldn't be happier and feel privileged that you have this kind of faith in me.
God speaks to us in so many ways, we just have to be aware. I happened to have to call the nurse Saturday night, just to check on Logan's breathing. Everything was fine, but I just had to be sure. The nurse that God placed there to take my call was perfect. She was so patient and compassionate. She also mentioned her son, who is now 4 years old, has been battling issues of his own most of his life. She didn't tell me what his condition was, but she definitely understood. It was just what I needed to help me feel okay with going to sleep that night instead of staying up and watching Logan breath until morning.
It's getting later now and I should probably start on something around here, but I'm not sure what. The kitchen is a wreck, this desk is a wreck, clothes need to be washed and plenty of stuff needs to be filed. Oh well, it will get done one way or another. The most important thing right now is helping both boys feel better. I wish there was an instruction book on how to help them both. Until that book is published, specifically for Freddie and Logan, we will rely on the power of God and the wisdom he has provided our amazing doctors.
Once again, thank you all for your continued prayers. They are changing lives, including ours.
1 comment:
The ability to keep a sense of humor when facing adversity is such a gift, I think. I'm glad you're finding things to laugh at. Thinking of you and your family often!
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