Saturday, July 09, 2011

the appointment

the conclusion:

Hewitt was really excited for the appointment, I'm not really sure why - but he was really looking forward to it.  We had a fantastic technician who worked so well with him, I praised her tremendously because she seemed to know just how to put him at ease!  When we got in there though and they got him all "hooked up" his nerves kicked in.  He told me he was scared and that he felt like he was going to be there for "ten years!"  I reassured him it would be less than an hour and he settled in for the test.  Hands down, it was the easiest EEG we've ever had.  Amazing how much easier an EEG is with a 6 year old than a 3 year old!

Hewitt is still having seizures.  During the EEG there is a 5 minute period where he has to breathe deeply.  It's pretty challenging for a 6 year old (or anyone I would think) - we put a little pinwheel in front of him and he blows on it to make it spin for 5 minutes straight.  He did a fantastic job.  It was during this period that he had a few absence seizures.  We met with the Dr. after the EEG and she recommended upping his dose of the medicine for the absence seizures.  She is thinking that a lot of the odd behavior is related to the increased seizure activity as well.  The EEG was nothing like it was when things were out of control, but also not as "good" as it was 2 years ago when the seizures first stopped.  We will up his dose, check his blood levels in a few weeks and go back in September for a longer 24-48 hour EEG.  Hopefully the increased dose will be more appropriate for his increased size!  He was 4'3" and 58lbs!  When they gave him the dose - I don't know how tall he was but he weighed around 42lbs!  He was 99.7% for his height and I think 90% for his weight!  I knew he was tall for his age, but that caught me off guard!  It seems fitting that for that much of an increase that his dose should bump up.

my response:
What is there to say?  After she told me there were some seizures on the EEG, I fought to hold myself together for the rest of our appointment.  I went into this appointment with the door closed on this part of our life.  I had said goodbye, I had convinced myself that the seizures were gone and that he'd grown out of it.  I am so far past where we were 2 years ago I hardly knew how to respond when she came back and said he had some absence seizures on the EEG.  Not only did he have a few on there, they happened when I was sitting in front of him, holding the pinwheel in my hand watching him blow on it.  I didn't even notice.  I didn't even notice.  He was sitting in front of me and I didn't even see them, how is that even possible?  My pride was hurt.  I felt like a failure and I know I can't beat myself up over it, I had no way of knowing, but  I have been following my "mom gut" through this entire process and to be so far off base really threw me.  I guess I got a little ahead of myself and maybe even confused my fantastic ability of disconnecting myself from things I hate with an actual peace about the situation.  At this point none of that really matters.  What matters is that we have a new plan in place.  What matters is that we are still fighting this beast.  And as much as I want to mourn the reappearance of these wretched seizures I have much to be thankful for:

*Hewitt is no longer wearing a helmet to protect himself!
*The seizures are brief enough that they aren't noticeable to us.
*Hewitt is learning, growing, progressing in all stages of life, including spiritually and that is beautiful, regardless of seizures.
*We live in a place where we have access to state of the art diagnostic tools and we have an extraordinary Dr. that knows how to use them and cares about Hewitt.
*We have health insurance
*We have a beautiful, thriving, smart, compassionate, imaginative, spunky 6 year old that God uses in our lives to challenge us to grow, to love, to look out for the underdog, and to fight for life!



S fam said...

I love your heart, your honesty, your attitude and your spunk! Colleen, you encourage me and I am sure many other Mama's out there. You are an amazing Mama to these boys of yours- so proud of you.

Sarahendipity said...

Miss 'S Fam' took the words right out of my mouth. ☺ Hewitt is such a wonderful and sweet little boy. It is because you and Hayden have done a great job of training, encouraging and loving him. Keep up the great work! Love you, friend!