The last week has been interesting to say the least. I know God tests us from time to time and I know the devil always plays his role well, so I'm guessing this last week has been a combination of the two. If I had found the time I would have updated this blog every day. I needed the outlet, however you guys might want to say a thank you prayer. I think God was probably trying to spare everyone all of the details.
So we made it home from the hospital late Monday afternoon. It was wonderful to be home, but the highlight was probably giving Logan his first real bath in a week! That poor child. You could tell he felt so much better being home, clean and nothing stuck in him or to him. Nana stayed that night because we were not sure what either child might do throughout the night and Fred had to work the next day. Logan slept well, but Freddie was up as usual. Over the next few nights we actually did well as far as sleeping. For some reason though, Freddie still seems to wake up sleepy, like he hasn't slept - but it's been 10-12 hours. He is still restless when he sleeps at night and we can't figure out what is going on. What might have been going on this week however, showed itself Friday night. He was up off and on all night with croup and fever (sorry Amanda! Hope we didn't pass it to Abby). We called the nurse just because we are still concerned with Logan's threshold for new viruses, so she sent us in to see the doctor on Saturday morning. As we suspected, it's basically just a cold and not much we can do other than let it run its course. Last night was another night of up and down all night, coughing with fever. Hopefully we are going to work our way through this pretty quickly.
Logan is like a different child...in a good way! He is smiling, kicking, laughing and playing more than he ever has. It's like he is finally getting to be a little baby boy! We went for our neurology appointment this past week and she was pleased with his progress. We were also excited to show her his seizure log which showed that we were down to a max of 3 seizures a day and sometimes less. YAY! She mentioned that the stress dose of steroids that he was receiving from the hospital might be helping, but we were sure that it was just our sweet little boy doing better. Assuming he didn't have more than 3 seizures a day, hopefully less, we could start weaning from some of the meds around the first of November and hopefully by the end of November we would be off of everything but the Topamax. Over the next couple of days he had about 6 a day including a couple during the night. We called to get a new prescription for the Keppra and give the neurologist the news that the seizures were back. They increased his dose of Topamax and we now restart the clock for weaning off of the meds. I'm not even sure that the "roller coaster" description is entirely accurate at this point. There is quite a bit of fun and excitement associated with roller coaster rides and that's not exactly how I would describe our life right now. However, having him smiling all the time, kicking and playing and acting just like a baby should is more than enough to help get through all of the other stuff....I just have to keep reminding myself.
The combination of getting home from a week in the hospital, readjusting to some sort of schedule here and reacquainting ourselves with a 3 year old who is having to deal with more than he should has been challenging. After a week of feeling like I was beating my head against a brick wall we have finally come to the conclusion that we need to reorganize our lives a little. We do this about once a month, which coincides nicely with getting home from our monthly hospital visits. I'm pretty sure that's not a coincidence. So it's time to regroup and regain some sort of focus for everyone. I know that prayer is the key. That is the only way I have gotten through this past week. And I need to say a Thank You and an apology to Amanda and Janet who caught a little of my breakdown on Friday. So....prayer AND wonderful, sweet friends have helped me get through this week.
As hard as it is sometimes there are still silver linings and blessings. We got two big pumpkins at the pumpkin patch this week - mommy and daddy pumpkins. We had Freddie and Logan pumpkins at home already from Freddie's trip to the pumpkin patch with Nana and Papa. Granted, it wasn't the beautiful family trip I had imagined. Freddie was screaming to go, we gave in, Fred chased him around the pumpkin patch while I drove the car around the parking lot to keep Logan from crying - but we have the pumpkins, bale of hay and light purple mums to decorate nonetheless. It's a step in the right direction - last year I had all of it but the hay. We also got our decorations down from the attic. Freddie said we had a Halloween party house! It was so fun to see the excitement on his face pulling everything out. Next year maybe I'll get it together more than a week before Halloween!
Since I have been staying up with Freddie at night, Fred has been handling Logan so we keep the germ passing to a minimum. Freddie and I had a wonderful day together yesterday. We went to the grocery store, Best Buy and Blockbuster. We now have a membership to Blockbuster simply because we were trying to find Dumbo and Bambi DVD's. Has anyone watched Dumbo in a while? It's a little strange. Glad we rented it instead of purchasing it. We finished off the night with Max and Ruby which always makes him happy. He was such an angel. Listened to everything I said and asked. It's amazing how agreeable he can be sometimes and how defiant he can be at other times. The life of a 3 year old!
Fred and Logan also had a wonderful day together. The played, ate and napped together and were on a walk when Freddie and I pulled into the neighborhood. We have been so blessed that Fred has had the time to spend in the hospital and at home to bond with Logan. If that had not been somewhat forced, I can see that it may have been hard to make it happen. Life just gets in the way sometimes. We are very thankful though that it has all worked out the way it has. They have such a good time together!
We had a couple of showings on the house Friday, so we got everything cleaned up - code for, we moved all of our clutter into the garage. Either way, it's been nice to have a semi-clean house this weekend. It makes everyone happier. Last night, for the first time in a while Fred and I watched a movie together on the couch while both boys slept. What a wonderful night! We actually got to have a little conversation too, about something other than the kids or medical stuff. Hallelujah!
So here we are, it's Sunday morning. I've always thought of Sunday as the end of the week, but I'm trying to change my brain to think of Sunday as the start of a new week. That way there's not so much pressure on Monday and we can be excited that we start the week with a relaxing day. The relaxing part may have to wait as we have a showing this morning between 10 and 11am. It will be interesting getting everything done to be out of the house in a couple of hours. It may not be pretty, but somehow we will get it done.
Just when I think I can't take any more, God swoops in and saves the day. I was literally at the end of my rope this week, but time with Freddie, a movie with Fred, smiles from Logan and an unexpected gift in the mail (devotion book with sweet note) help to part the dark clouds and remind us that there is light at the end of what sometimes feels like a long, dark tunnel. I've really struggled at times this week - with life in general. And I know I'm not the only one. Everyone has really been having a tough time. But, if we can ever remember to let go and give it all back to God, things miraculously get better. I'm all about the little miracles these days. I don't need huge ones. Although, I wouldn't turn those away either.
I'll try and post some video and photos of the boys later today. It's one thing for me to tell you about them, but they are so precious to see for yourself!
Enjoy this beautiful day!
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