Monday, September 29, 2008

'What's the Prommo?!'

When Eli was about 2 years old, he couldn't quite get the word 'problem' out, so when he was frustrated or concerned about something, he posed the question 'what's the problem', which loosely translated into 'what's the prommo?!' It's just stuck with me over the years and I now find myself staring at Mira every day when she is screaming her head off asking 'what IS the prommo?!' It's so difficult to understand what exactly is going on in Mira's world and becomes so frustrating when you feel that there is nothing you can do for her. It's really a helpless feeling as a parent and you can't help but feel like a failure at times. Sarah and I find ourselves every day wondering what she is she tired, is she hungry, is she bored, does her stomach hurt, is it something neurological, is it the medication(s), or all of the above?!

Mira spends some part of her day, every day, being irritable. Some days it's a half hour; other days it's sun up to sun down. Other days, nothing makes or keeps her happy and we feel like we are always two steps behind whatever she wants or needs. Sarah and I call it LGF (Low Grade Fuss) where she will just whine, whimper, or all out cry and there is seemingly nothing we can do about it.

On a good note, my Mom came in from Saint Louis for the weekend and was able to see Mira's gymnastics moves, live in action. Mira's mobility increases a little every week. She is still popping right off of the floor into a sitting position. She will do it over and over until she is exhausted. It's great exercise for her and she seems pretty excited when she is in an upward position. Who knows - maybe she can solidify a spot on the 2016 Olympic squad soon.

All that aside, she seems to be adjusting to the Keppra fine - no increased irritability for the past few days, then again, no decrease in seizure activity. I thought I didn't see anything for the first two days, then yesterday I swore I saw a half dozen before noon. We will just keep watching and waiting.

We did add some vitamins back into her diet, since going back on additional medications. We added B12 and folic acid, added to the B6 and omega 3 she has been taking for some time.

1 comment:

Reagan Leigh said...

I know what you mean. So much of our lives is spent wondering what the heck is wrong with Reagan. With the moaning and groaning, whining and fussing, and flat out screaming crying! It definitely gets frustrating. That's great news that she's making progress in her mobility. I can hardly wait for Reagan to gain some sort of mobility...even rolling would be great! I really hope the Keppra works for her! (But keep in mind, there is something they call Keppra Rage!! It made Reagan even more irritable, so we stopped it pretty quickly, probably without giving it a fair chance to work.)