March 2010

Sorry it has been a while since the last update. We started off the 2010 in great shape with Amanda making lots of progress. Amanda has learned to scoot now so she scoots all over the house, chasing the ball, ELLIE and Ringo, Katie, Dan and me. She really enjoys exploring and going to get all the toys she wants to play with. She is also progressing cognitively and is such a social and happy child. We are grateful to have her in our lives. Now that you know she is doing well, I will give you a flashback to a little incident that occurred earlier this year ...

In late January, I decided that I would take Katie and her friend Rebecca up to see snow about an hour and half north of Wilmington, since it hadn't snowed in Wilmington (if I had only known we would later get 5 inches in Wilmington, this trip would not have happened). Julie also went with us and we were all excited for a fun adventure. Little did we know how adventurous it would become.

We drove for about an hour and a half and were just into Sampson County when the snow got deep enough that we could actually play in it. We found an exit to pull off of to start our adventure. At that moment, within 20 seconds of pulling on to the exit, Amanda started screaming out of the blue and then threw a huge seizure and started throwing up everywhere. I stopped the car, ran around and got her in the recovery position, gave her Diastat and waited a few minutes for it to take effect. Katie and her friend stood out in the snow while Julie and I attended to Amanda, on an exit ramp, in the middle of nowhere. Unfortunately, the Diastat didn't stop the seizure so we called 911 and they sent an ambulance. Since we were so far from anything, it took the ambulance 20-25 minutes to get to us.

So Amanda and I got in the ambulance and headed for the ER while Julie, Katie, and Becca followed in my car. While in the ambulance, the EMTs attended to Amanda, started an IV, and attempted to get vitals. Because she was still seizing and had lots of tone, they couldn't even get the blood pressure cuff on. So, they administered IV diazapam and finally the seizure stopped. However, her breathing then became labored so they had to assist breathing all the way to the hospital. When we got there, a whole team was waiting for us. I have to interject here that the care on the ambulance and at the hospital was wonderful. Amanda stabilized and in a few hours, we were allowed to go home. (A completely random fact is that we saw a bobcat on the way home, so that was pretty neat).

So, we get home and think all is well but we start to notice that Amanda is just not herself, even after a few days pass. Eventually, after several more seizure-like experiences, incessant crying, tearing eyes, sensitivity to light, no playing, etc, we end up in Duke ER to get her shunt checked (once again great care) and finally end up back at her neurologist once we determine that the shunt is ok. After talking at length with Dr Wooten (who is wonderful!!!), he believes that driving up to the snow probably caused a migraine and that migraine lasted about 12 straight days before we were able to knock it out with increased meds. The meds however caused her intestines to "back up" so once we figured this out, we had to take the next two weeks doing intensive Miralax therapy to get things unclogged. Once that happened, our beautiful, wonderful, fun, happy, and mobile child returned. Praise God!

We are very thankful to have that silly little impish child back!!! She is a joy to be around and every second we get with her is a gift! She is back up to all of her antics and is just tons of fun again. So we are eagerly looking forward to a fun spring and summer and can't wait to see what new skills emerge as we move forward.

We hope all of you are doing well! Love ya!
Susan

P.S. The moral of the story is not to take your children to see snow. Wait for it to come to you, as it later did for us. Have a great day, week, month!