Thursday, March 4, 2010


A lot has been going on in the last month and there is a lot to come in the next two months.  I am going to be very busy to say the least.

I took Dylan to the Neurologist today because for the last 2 weeks he has been having these little eye flutters/tremors throughout the day.  They only last a few seconds but have made me concerned that they may be seizure related.  Luckly Dylan happened to have 3 of these little episodes during the appointment so the doctor could see what I was talking about.  This doctor hasn't seen Dylan since he was a infant but he remembered us very well and it was great to go to an appointment and not have to educate the doctor on WHS.  He performed a very thorough exam and he is not sure if they are seizures or not.  He thinks they maybe are just benign tremors but is scheduling an EEG just to make sure.  (Dylan had an EEG - which was normal - when he was about 2 months old because he was having a lot of eye rolling/body flinching.)  He just wants me to let him know if they increase in severity and/or duration and does not want to put him on medication at this time.  He was pleased to see how well he is progressing.  I guess it was a good appointment but I am still very worried about him.  I pray that he does not have seizures.  On a good note he weighed in at 14lbs 2oz! 

The rest of March and April are kind of crazy for me.  On top of 3 days/week of PT/OT, he will be going to see Cardiology, Opthomology, the Pediatrician for his 1 yr check up, have an EEG, and spinal surgery (scheduled for April 21st - which Mitch and I have to go down to San Diego a few days before and donate blood just in case he needs it).  Also thrown into the mix - I still have to work part-time, am in the process of finding a new boarding stable for my horse (which is a whole other story and adds a lot of extra stress for me), take Hailey to 3 birthday parties and plan her 4th B-Day, try to keep my house clean and all the laundry done, and hopefully get a hair appointment in somewhere.  I am a tad bit overwhelmed at this point in my life, but what can I do except take it day by day.  I know that March and April will fly by and then everything will be better (hopefully). 

To end this post: a video of Dylan after his bath tonight and some pictures of a happy little pickle.


  1. Dylan is the happiest little guy, always smiling! Sounds like your month is just like ours, busy, busy, busy. We hope for all great appointments.

  2. You sound incredibly busy. Definitely just take one day at a time and try and take care of yourself in between.
    Love the video!

  3. Hello Kristy,
    The eye flutters you are describing do sound like seizures. They are absence seizures. Haley was diagnosed in 2008 with them. We had seen them in the year before but the neuro thought since Haley always seemed to be "there" and they only lasted a second or two they were not seizures.
    At the WHS conference in D.C. in 2008 we saw a video with the same situation and they were indeed seizures. That fall when Haley went back to neuro we scheduled a 48 hr. EEG. Basically, she was hooked up for 2 days and we had a little battery pack to carry around and everytime we saw an eye flutter, we hit a button to record it and wrote down the time and described what we saw. She was having up to 20 or more a day. The findings were yes they were seizures. However, they couldn't tell us how many she had but only that when we hit the button there was definitely some kind of event. I purposefully did not hit it for everyone and many times they were so quick it was over before I could even think to hit the button.
    She had been on Tegretol because she had had a big seizure requiring intubation and hospitlization in 2007. (Her EEG after this seizure was normal.) This drug also made the eye flutters worse. So now she is on Keppra which controls both types of seizures. When you think of seizures they all seem scary. The eye flutters were described to us as someone turning out the lights momentarily or trying to listen or attend to something and your attention is diverted for a second or two.
    So if I had to pick between the two I'd pick the eye flutters. Haley doesn't have tremors with hers like you mentioned with Dylan but sometimes there is a slight "falling" action with her arms or body which is typical for absence seizures. Our email is if you have any questions.
    I check in on most of the kids listed on my blog nearly daily but don't often comment due to our busy life. I understand your feeling of being overwhelmed. The first couple years are rough due to all the appointments and procedures with our kiddos. For some reason though, the appointments have slowed down and I am feeling even more stressed. Lately, I've been missing deadlines for having papers turned in at daycare and school, and picture days... And I could not tell you how many cards I've bought for people in the last two months and they are still on my counter because I didn't have time to write a note in them. Typically I'm not like this but even last year I just felt as though I was struggling to keep my head above water. I have been debating about staying at home. I'm away at work M-F from 7 AM until 5 PM and have worked over half of my Sat. (my day off) in the past year. It's just too much.

  4. Kristy- Hang in there. You are so incredibly strong. Remember the poem you posted? I'm sorry you're feeling overwhelmed. PLEASE DON'T hesitate to ask for help. Let me know if there is anything I can do to OK? Love, Aunt Joanne

  5. Kristy - still praying that the flutters are NOT seizures. For Norrah and Hannah's Riley they were not - SO THERE IS HOPE! Norrah did them several times while hooked up to the EEG and all brain waves were normal. JUST THOUGHT I WOULD CONTINUE TO ENCOURAGE YOU! We are praying Dylan is always seizure free!

    I have been MIA due to our crazy medical dramas this past week but wanted to check in to say hello, hugs to Dylan and I am still keeping up with everyone even if my comments have been sparce.


  6. Oh, you sound so busy!! I hope that things are going well with each of the appointments, and that you will be able to catch your breath soon. And spend some time with that beautiful horse of yours! Also hoping you might be going to the conference in Utah this summer. We're planning on going and are looking forward to meeting people in person.


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