New News!

Crazy, crazy times. Last week was the most awesome week we've had with Lex since mid-April. Lex went 9 days and only on 2 of them did he have desat seizures!.That is AWESOME, people!! We had really high hopes that the new medication he started a couple of weeks ago (Sabril) was responsible, and it may have been. Unfortunately we started noticing some unusual jumpy motions that we hadn't seen before, which I finally admitted to myself looked like spasms on Saturday. After showing a video that I caught of it to the neurologist they set him up for a continuous EEG until they had the info they needed. They have special Epilepsy monitoring units-which at one glance would appear to be like any other patient room. The difference is that there are cameras and microphones set up so that they can get detailed video and sound of the seizures. Of all the EEG's Lex has had we've never stayed in one of these rooms before. At first it wasn't so bad, other than having to leave what has become "home" to us on the 8th floor. The idea of being on video wasn't exactly thrilling to me, but I was willing to deal. It wasn't until later that night that the creep factor set in. The camera's moved-they followed Lex around anytime we picked him up and moved him. The creepiest part? Someone was sitting out there watching and making the camera's follow him! I was so not a fan of that, but again-I dealt with it, Lex had a hard time of it though-he's a tad camera shy. He had many spasms through that night and the next morning which were confirmed to be seizures. Monday morning (before they had taken the EEG off) Lex broke his 4 day desat-seizure free streak. I was holding him and noticed that the inhale-exhale rhythm that I've gotten quite attached to had stopped, and looked down to see his mouth twitching. Despite the fact that we were told to never expect Lex to be completely seizure-free, we were hoping that at least maybe these pesky desat seizures would leave him alone! He went on that day to have several more and has been having multiple seizures (in which he likes to do magic and change colors-particularly blue) daily.
Last week we had also began to wean his Keppra, but when the infantile spasms decided to stop by for their unexpected visit, the doctors invited Keppra to come back and stay a while too. He will be back up to his previous normal dosage today. In addition-medicine #7 would like to introduce itself. Everyone say "hello" to Zonegran. He starts today and we're hoping to see some seizure control within the next few days so that we can then begin to wean Trileptal. We need lots of prayers everyone. There are fears that Lex's underlying condition continues to worsen more and more which is why it seems nearly impossible to get seizure control. Sometimes it is so hard for me to not give into this mentality. I have to really stop and catch myself and remember my faith and where to put it. Every now and then I tend to pick up my faith and say "hey, I'm going to set it right here for a while-yep, I like it there", but it doesn't take very long and I notice that my entire mood, outlook and attitude is completely negative and just sad. This isn't to say that I stop putting trust and hope in God, I just lose focus every now and then and need a little reminder. That's when I really feel like I'm being tugged on. So I pick my faith back up and put it right back where it belongs-in Jesus, guess how I feel after that? Hopeful, strong, encouraged and confident. "If God is for us, who can be against us?" (Romans 8:31). So, we are just praying for seizure-control, someway, somehow-we're not picky :D. More than this we always pray that God's will be done, whatever it may be.
Also, to quickly update you guys on the home situation. We are basically only still in the hospital because there have been issues regarding the nurse situation. No home health companies in the surrounding counties are willing to accept him due to his..complexities, shall we call them? There are other options that we are looking into that our insurance may cover in which we could get a private nurse. Unfortunately it doesn't look hopeful, but we are trusting that God will provide in some way. We do feel that Lebanon is where we are being lead and that is where we intend to be, for a while anyway.
So I've decided to start including five little happy times in every entry I make in all things Lex related. We'll call them:
Five Reasons to Praise
1.) No seizures for 5 hours now
2.) The head of neurology has taken over all medication decisions
3.) He loves sucking his binky again (even if it is the easy one :p)
4.) Tolerating all of his feeds very well
5.) He's been staying awake despite being on 6 seizure meds which are very sedating (pray he keeps it up with the introduction of #7!)
oh and f.y.i. we got to keep our room on the 8th floor!