Friday, November 6, 2009

 Another aspect to our lives...

So K has been having seizures, and we weren't completely aware of it. I had to just write that out to let it sink in - for me. We suspected it, but had been given the brush off by ER docs a few times. We assumed he must have just been sick, or over tired... or something. Remember the little episode he had three weeks ago? We are now pretty much convinced that was seizure activity. That time the doctors said he must have had a virus... or something. He had a similar episode back in July. That time he was fine when he arrived at the ER, so they only observed him for a while and then sent him home. Wednesday night he was at AWANA when symptoms began presenting themselves yet again. Trembling, paleness, confusion, lack of visual focus, rapid eye movement. Dave brought him home early and we watched him for awhile. Things seemed a little worse than the other times. He began to seem very disoriented. In the past we would have suspected shunt issues. Now we are learning more details. We are more in tune whith his body and his neurological issues. We were pretty sure something else was going on. But the worry and the wondering of what exactly it was made my stomach tie into knots. We went ahead and put him to bed as he seemed pretty tired. But he did not go to sleep. He was wide awake, and really he was just so not right. He vomited a couple of times. He was not himself. I checked on him each time I nursed Kai and through out the night his eyes remained wide open. At the 3 am feeding I heard K's bedroom door open and some one going down the stairs. It was K. It was pitch dark and no lights were on. By the time I found him he had gone all the way down the stairs and was wandering around. So not right. Dave awoke and brought K to bed with us. Through out the early morning hours K went back and forth from a deep sleep to waking up with very off the wall questions and comments. Really not himself. Very confused. Dave and I became more and more concerned. We would have been highly entertained if it weren't for the worry and the seriousness of the situation. As Dave brought K into our room he asked him what room we were in - to test his alertness. He said "The library". Yeah, we don't have a library in our house. K is a tease and he will often say stuff like that to be silly, but this time he was not teasing and he was very sure that he was in a library. We finally got a little sleep. Around 9 am I left with Jay, Noe, and Kai for preschool and Mom's group and Dave left for the ER. This time he headed to the hospital that K was born in. K's neurologist works from that hospital and we hoped he would be able to give some input. Needless to say, it was a long day for each of us. My phone was always very close by me. K had a CT scan, brain x-ray, blood tests, urine tests, and finally an EEG. We have the best neurologist - but Dave was originally told, by the ER docs, that he was not seeing patients that day. God's hand was so evident in the way every thing played out as some how, through Dave's insistence, not only were they able to see the neurologist, he acted as though he had all of the time in the world for Dave and K. He is a very busy man and we usually have to book appointments 6 months in advance. They got in to see him within an hour. Thank you God! Our neurologist was the one who finally gave us the answers we so desperately needed for our little guy. He showed Dave a list of 6 symptoms of a seizure. K had 6 of 6 on Wednesday night. We are now trying a new medication combination for K in the hope that this will stop the seizure activity which he has been having in the last 3 months. Fortunately Our neurologist really put our hearts and minds at ease. It seems crazy to say "a seizure is no big deal" but really, as he was explaining things to Dave, and Dave later explained them to me, we realized that they have not harmed him,will not harm him and are not as intimidating as we had thought. We now know what to look for quite well. We know the difference between shunt failure and seizure activity. What an education! Oh this child. This dear precious little boy has always had a way of keeping us guessing. And right when we think one thing, he changes it up and we must figure out something else. He has confused doctors, charmed nurses, made brain surgeons second guess themselves, and perplexed neurological psychologists. Thank you God for my little mystery. Thank you for teaching me flexibility, refocusing my eyes, helping me to learn to adjust my expectations and just roll with the punches... So I have a child who has seizures. And today is no different than any other day. He is no different than he has always been. Lovable, stubborn, entertaining, silly. That's my K!

9 comments:

Anthony's Mommy said...

Just when you think you have it all figured out something new pops up huh? Wasn't it this summer you took him for a sleepy study or something similar and they said he was having seizures but they were silent or something? Meaning they weren't showing? I can't remember exactly. I really hope the meds help. K amazes me every day! And I know i'm not his mother, or even a relative.... but i'm just so proud of him!

Kim

Amy@My Front Porch said...

Wow Wendi -- you continue to amaze me with the strength of your faith and the way you take these things in stride, trusting the Lord. You're such a great encouragement to me!

BaronessBlack said...

Well, it's always better to know!
It's good to know that it doesn't seem to impact on his enjoyment of life. He always seems to be having a fine time between episodes!
Worrying situation for you at the time, but still a classic answer, 'I'm in the library!'. I'm sure you'll remember that one!
I hope the meds help. You all have such a great attitude!

Katarina said...

WOW! My God;s hand continue to surround K as you take this road with him.

I can sense that you have at least some peace about this through the words you are writing, praying this peace conintues.

LOVE that you can still see that K is K and always will be, what a blessing!

Rachel @ Future Pastor's Wife said...

Glad to know it's nothing to be concerned about, but I will still pray for your family. It can't be easy on K being up all night!

Lindsay said...

Strength, faith, and love ... those words describe you ... over and over and over again!

Rachel said...

This must have been really scary for you to see him acting so not himself. I am so glad they were able to get you some answers quickly and that he is okay! And as the others have said...you are an encouragement to me in the way you handle all the different things life throws at you! So thankful he is okay.

Cottage Mommy said...

Wow, you are one brave, strong Momma! So glad that you were able to get some answers so quickly....that sounds so scary! Praying for all of you...hugs

Jackie @ Our Moments Our Memories said...

Man - my heart was beating fast just reading all of this - the wondering, not knowing, being concerned...I know that it's so hard on a mommy heart, isn't it? Praise Jesus that He worked it out so perfectly so that Dave and K could see the neurologist - awesome!

Flexibility - wow, I know from my things in my own life how hard it can be to just learn to go it, especially things that could cause a lot of anxiety - so proud of you for learning to trust and just rely on God. A never-ending lesson, I guess.

Just finished catching up on , oh, your last 8 posts or so - and wow, Malachi is just a bundle of yumminess. Seriously. It doesn't get any cuter than that.