Oh our dear little Drew

Well, we've been out of the hospital for over 3 weeks now (I didn't say that out loud!), and Drew is doing about the same.  He is not improving but we are learning how to cope with his condition and how to manage it at home.  We have been on the verge of taking him to the ER about 7 times in the last 2 weeks, but after a call to the neurologist on call we have drugged him, waited it out and ended up staying at home each time.  It has been unnerving to say the least, and I don't know if I will get used to this.  Drew usually does fine during the day and then tends to get worse towards evening or in the middle of the night (when one can hardly think straight!).  This is not unusual for seizure kids, as going into and out of sleep are the prime times for seizures.  As he gets tired, his seizures get stronger and sometimes the ones that are usually intermittent, lasting only a minute or two, will get worse and go on for hours without a break.  Those are the ones we try to stop as they seem to bother him more.  I can't begin to describe what goes on in our minds when that occurs, but that's when I wish someone else was making the decisions other than me!  When he gets into these longer ones, he often seems only semi-conscious, and unable to get to sleep.  He can't look around, his eyes start wiggling, his left side tenses stronger and longer, his eyebrow twitches and he gets really weak.  My greatest concern is that these seizures might damage his brain or that if we don't stop them they will just get worse.  I keep asking Drew's neurologist for guidelines about when to push the panic button or when to call but he is just about as baffled as we are.  There are 7 neurologists on the team and a couple of residents and almost all of them are now familiar with Drew to some degree.  When we call the neurologist on call, we usually get one of the residents or one of the other neurologists aside from our primary one.  They are very good and it is so helpful and almost comforting to be able to call 24/7 and get another opinion on what we should do next, but they are so reliant upon our diagnosis of Drew's state and really depend on our input for direction.  I can't seem to remember from one episode to the next how intense the last one was and whether or not we should do something about the new episode.  In one way, I don't really want to because the only thing we can do right now to stop them is to give Drew a good dose of Phenobarb which then completely sedates him and he's dopey for the next couple days.  On the other hand, I don't want to hurt him by not giving it to him.  I just don't know enough about what's going on in his little brain and the impact these prolonged seizures have had to know whether to act on them or ride them out!!!   All of his MRIs to this point have not indicated any deterioration or damage to his brain... thankfully.  Can we just get this in black and white please???  This is my greatest challenge right now!  

I really just want my little Drew back - I miss him.  Insert tears here...  ok, I'll be alright.  Anyway, with all the extra doses we've had to give Drew lately he's not really been himself, and he's also not interested in eating right now either.  He was doing quite well for a while there, but he's not into food right now.  He is fortunately still nursing pretty well and the feeding tube is doing it's job in keeping the weight on thank God.  That is one stress that is pushed to the back burner for now, and I just don't even mind doing the tube thing anymore!!!  

We are doing alright most days, and had a wonderful week in Canmore with my parents last week.  What a peaceful place!  There is just no place like the mountains.  On one hike we did last week, I just kept thinking about the massiveness and majesty of the mountain underfoot,  how great my God is and how he knows all about this little sparrow of his that is struggling.  That comforts me like nothing else, while challenging me at the same time.

The doctor mentioned he is expecting some preliminary results as early as this week or next from Calgary and/or Toronto.  We are praying more fervently now that it is coming closer that there will be some good news.  I pray every day primarily for healing, but also with alot of uncertainty about what to pray.  I just pray that God will bless my little Drew, his brother, our possibilities for future children and our family in the best way He can.  This article has been really helpful and says better than I can what's been going through my head.  The verse from Romans about suffering producing character, endurance and hope and further, a hope that does not disappoint has been in the front of my mind for some time - this just helped put a new spin on it.  If you get a chance you should check this out - http://www.liveasif.org/view.cgi?article=3803.  Anyway, enough on that for now.  I should probably sign out and get to bed before Drew wakes up!  Thank you for keeping us in your thoughts and prayers.

Prayers for the week:

Peace for Jordan and I

Please pray (we are praying hard) that Drew's new antiseizure med will work to stop the seizures or at least to manage them well!!!!!!!

Drew is not using his left side still - as I am his primary therapist I am feeling a little discouraged and partly responsible.  Please pray that God will give me endurance, some good ideas and some hope here, and that Drew will get some movement on this side of his body.

We are thankful for the way God has been involved so far, and that He does not abandon us!