Tuesday, March 3, 2009
No Rest for the Weary
When my sister and I were kids, my dad always used to say "sleep fast" when we'd go to sleep late at night and have to wake up early in the morning. Unfortunately, I am now 30 and still don't know how to do that! Sleep is not easy to come by these days. Kendall has started to have seizures in her sleep. I thought this was uncommon for Infantile Spasms, but like everything else with Kendall, unlikely things seem to always happen!
I picked up copies of Kendall's past 5 EEG's. The last one shows that the "study does not rise to the level of a modified hypsarrhythmia, but is consistent with an epileptic encephalopathy." If anybody knows what that means, please let me know. Also, the last video EEG (done before the one I just asked about) states that she had "multiple tonic spasms, hemihypsarrhythmia, and diffuse slowing and disorganized." So, does that mean she has IS on only one side? I don't understand!
Her seizures are disturbingly increasing in frequency and force. This morning at PT she had several, but her head control was great! We have officially added OT to our list of services now too. The new OT gave us some great things to do with Kendall to promote more reaching and grabbing. It's just really frustrating to me because her seizures rudely interrupt pretty much everything we do in the morning. I'm really ready to move on to the next medication. Our hematologist appt. is on Thursday, so hopefully we will make new decisions soon after.
Please continue to keep us in your prayers this week.
Posted by jocalyn at 3:20 PM