One step forward, two steps back. Or so it seems.

As always, the last few weeks have been interesting...to say the least.  Below are the basics, in a rather large nutshell.

We made it home from the hospital on January 7th and Logan has been doing well since.  We talked with his neurologist and based on the report she received from the EEG at the hospital we began weaning him off of the Keppra! This was the first seizure med Logan started when he was diagnosed, so he has been on this one since last July. That's not necessarily a bad thing, but we didn't feel like it was doing much in the way of controlling his seizures. At the same time we began decreasing his Keppra we increased his Depakote. Apparently Depakote is considered one of the "big guns" in the world of seizure meds, so hopefully we will see some good results over the next few weeks. Within another week and a half he will be taking Depakote and Klonopin....and that's all. It's not like we have been dealing with these meds for years, but in his short life (other than the first few months of his life) I think this is the fewest amount of meds he has taken on any given day.  YAY LOGAN!

The week after we were discharged we resumed physical therapy. Although we love our PT Debbie, I can't say that this is my favorite appointment and I can only assume by his crying and breath holding fits, Logan feels the same. As Debbie puts it, we have to "turn on" or "activate" the muscles that he has not been using. We like to think this is solely from his illnesses and seizure roller coaster, however it may also be attributed to the fact that he is somewhat spoiled and has never been forced to use those muscles. Forgive us for wanting to hold and comfort our small little one....and yes, Nana has been known to spoil a child now and then.  Either way, we are moving forward and although PT is pretty hard to watch sometimes, we know it's what is best for Logan. We also got Freddie's hair cut - just Freddie, Logan and I went - and everyone did great!

We had a follow up neurology appointment that same week. These appointments used to be somewhat exciting for me. I felt like we were getting good news and making progress. These days though, they seem to leave me with a whirlwind of emotions. On the drive home I have to try rearrange those emotions and put myself back on track. Neurologists, as brilliant as they are, sometimes lack a delivery mechanism in their speaking. An example: Logan is way behind on his vaccinations due to the Infantile Spasms/steroid treatment. So, we are beginning the vaccine process again, but he has to take them one at a time with four weeks in between. I was asking our neurologist if the spasms could come back and she explained how they could by giving me an example of an 8-year old patient of hers who developed them again because she caught a rare strain of whooping cough. I told her that I was a little worried about whooping cough because Logan had not had that vaccine yet and she used the words "it's bad" and "it kills". Funny thing about it is that after that statement, the fact that she had mentioned possibly adding back another medicine again became no big deal. I guess it's all about perspective.

As I'm driving home and trying to regain my perspective on our lives again, I remember that we are heading to the mountains that night for a family weekend! That sure does help things. Fred's dad, as a Christmas present to us all, took our family, Fred's sister, Nana and Papa to Lake Lure for the weekend. Most of you know that Fred and I were married there in 2002, so it was really nice to be back up there with our family. We had plenty of adventures during our time there and Freddie didn't want to leave. The boys did so well, especially with sleeping! They adjusted and adapted like we could only hope they would.  Needless to say, we'll be sure to head back to the mountains for another adventure!

During all of this, we have been dealing with a little real estate issue that I mentioned briefly in another post. Let's just say something that looked like a good idea a few years ago doesn't seem like such a great idea now with the way the market has turned. Add in the fact that the developer and some of the banks that were involved participated in some not-so-legitimate acts and we are now part of a class action lawsuit. That part makes it difficult to talk with anyone at the bank when your loan comes due - in full. That was the case this past Monday, January 18th. We finally talked with the attorney on Sunday and he is contacting Wachovia on our behalf. There's not a lot that we can do at this point with this situation, it has just been an added pressure during all of this and with the loan coming due, well let's just say I didn't plan to add "foreclosure" to my list of accomplishments for 2010.

This brings us to today. It's Tuesday, January 19th around 10pm and both boys are asleep. Fred left Lake Lure and headed to Raleigh for meetings and will be back tomorrow night late, after a deacon's meeting at church. Nana basically moved in once we got home on Monday and will stay here until Fred gets back and Papa is headed to Danville tomorrow to help my aunt and uncle with some things they have going on.

Today went something like this for us.
3:30am - Logan wakes up, with a seizure I think, I made a bottle around 4:45am and he finally fell back to sleep shortly after that.
5:45am - Freddie came into my room because he was ready to start his day. He is such a sweet boy and whispers, because he knows Logan is sleeping. Because I am still nervous about leaving Logan alone...and I'm plain tired...I sent him into Logan's room where Nana was sleeping.
7:30am - Nana woke me up to get Freddie dressed (so she could get dressed) and Logan's meds done so she could head off to take Freddie to school.
8:10am - I got dressed and got Logan dressed and Debbie, our physical therapist was here around 8:30am with the medical equipment rep to get the process started on ordering the bath chair (finally!) and the stroller type wheelchair that will allow Logan to enjoy life so much more.
9:45am - I jumped in the shower just after the therapist and medical rep left so I could be ready for the day!  Ha!
Around 11am - Nana, Logan and I headed to Omni to pick up Freddie. It was his request that we all three come to get him. How could we say no?
Just after 12pm - we get home and get lunch started for Freddie and me. Nana takes Logan and makes sure he gets a bottle. After lunch, I make a few phone calls regarding our new medicaid approval to make sure we have the correct plan in place. All seems well and I plan to call a few of the doctor's offices along the way to give them the medicaid number and get this process rolling!
2pm - Logan gets a dose of motrin that is needed before he receives any vaccines.
2:30pm - Logan and I arrive at the pediatrician's office and find out that they don't accept South Carolina medicaid - they are a North Carolina office. Whoa.
2:45pm - As we wait for our appointment I text Fred, call my mom and try and get a grip not fearing the worst - that multiple providers where we have racked up charges are going to tell us the same thing. As God would have it (there's no luck in our lives, ONLY ONE ALMIGHTY POWER), we seem to be safe. The neurologist calls back and they do accept SC medicaid. Apparently specialists are a little different. Whew.
5pm - we finally head home from the pediatrician's office. They were super busy, but still treated us as wonderful as always. They treat Logan like his a king. It was super hot in there, Logan was tired and was not exactly enjoying the exam. By the time it was all said and done, he had a pretty bad seizure. Because of that we decided to hold off on the vaccine. Still, he had a good checkup. Ears look good, he's in the 90-95th percentile for his head, and the 97th for height and weight. He's not a small child, which would explain why he is in 24 months and 3T clothes!
5:45pm - we make it home, start dinner for Freddie and begin our nightime routine.
6:15pm - our sweet neighbors, the Nelsons come to visit. They are concerned because they have only seen one car in the driveway - often a sign that we have gone for another hospital stay. They were excited to find out that was not the case this time.
6:30pm - everyone has dinner, including Papa
8pm - Freddie is asleep...and so is Logan, on the couch.
9pm - We change Logan's diaper, put him in his pajamas and give him his evening meds....he doesn't even wake up. The poor child was exhausted.

It's now 10:24 and I'm about to head to bed myself. I laugh and think that what I described above is not really a typical day, but all too often it is. The specifics of it may change, but it's like a marathon every day. Today, Nana was so upset about the medicaid issue - mad really - that when I got home she had cleaned out the pantry, drawers in Logan's room, drawers in Freddie's room and had pulled stuff out in our room. I'm trying to figure out what will set her off tomorrow so we can make some progress on the closets around here!

It's funny. I start out thinking that we are taking one step forward and two steps back, but when I try and type that out in black and white I realize that I don't really feel that way. I can tell you I don't read my devotion these days, I haven't read my book lately, I don't get to go to church often and I miss Bible Study more often than I go (I haven't been in over a year) - but I don't feel alone. True, part of that is our family. Without them we would be even more of a mess than we are now. But in talking to Fred tonight, he mentioned how blessed we are with our family. It's so true. We have two angels living with us - one a rambunctious 3 year old who tests limits every time we turn around and a 9 month old who is fighting every day to show everyone who he is all the while expressing more with his sweet little sapphires (as sweet Mrs. Amanda calls them) that we could begin to with volumes of printed words. There are a lot of things in life that we have control over, but only God could give us the amazing children that He has given us and the sense of peace that only comes from Him.

Fear has truly been a "four-letter-word" for me for a long time. I've always been somewhat of a worrier. Some would say I get it honest. But lately I have tried with all my might to face my fear head on. I would not have been able to describe it to you, but I had this feeling that every time I had a fear, it somehow came true. I was watching Creflo Dollar Ministries one Sunday morning and it was about FEAR. No coincidence, I'm sure. Or maybe it was, since that's God's way of remaining anonymous...right Uncle Jimmy? Either way, I know I was there listening to it for a reason. I wish I could remember it word for word, but the gist was that FEAR opened the door for the devil. If I had so much FEAR, then I obviously didn't have FAITH. Hmm. I could give you a sermon if I tried, but who needs more words to say the same thing. If you have FAITH, there is no room for FEAR.

I started seeing messages about FEAR everywhere I turned. A church sign read: "Fear forces. Love leads. Faith follows." There was a T-shirt at a coffee shop that it took me a while to understand, but once I did it was another "Ah ha" moment: "Fear 2 Faith, with the word "Cross" above it and "Over" below it. Coincidence? 

For some reason I have always felt that if I didn't worry I somehow wasn't caring. I try to remind myself that my worry, doesn't keep everyone safe. God does. So, the night after the church sign and coffee shop t-shirt I prayed for everyone to sleep peacefully. Not just a typical "Please God let everyone have a peaceful night's sleep" but one in which I truly handed everything over to God, trusted that he could handle it better than I could and I closed my eyes. It's no surprise that I was overjoyed as I was telling my mom the next morning when I woke up after a peaceful, FULL night's sleep. There it is again...a coincidence.


We've talked about a miracle with Logan and I believe in that more now than I ever have. If I were to look at our lives from the sidelines I would literally freak out. But living it....I wouldn't choose anything else. God has big plans, I just have to keep praying for the patience and guidance we need to live out His will. He has blessed us beyond measure. There's really no more we could ask for. So when He is ready for His miracle with Logan, we'll be ready too. Until then we are excited about all life has to offer - for everyone. Sure, if you ask me to give you this type of overview of my life at any given point of the day it may not come out quite like it does in this blog. But that's one of the reasons I enjoy writing this as much as I do. As I've mentioned so many times before, it helps me get my head and heart back on track. And the world is a much brighter place when I'm grounded in our Father's love, peace, strength and guidance.

Sweet dreams to my boys...here and across the state. You three make my heart happy and I am immeasurably blessed because of you. I love you boys!