survival mode and Aggie update

For one reason or another we've been on survival mode the past two weeks. (Survival mode = much lower standards! If we make it through the day and everyone has eaten and is relatively clean, it's a good day!) It has just been an accumulation of little things, colds, holiday preparation, etc. I have thought of blogging a few times this week, but now feel like I have so many little anecdotes to report I don't know where to start! So instead of doing nothing, I will start with the most asked about child- Aggie.

We are officially to the point of weaning medicine that makes me nervous. Trileptal was the one medicine we thought helped her seizures last fall, and we are now just passing the dose that (may have) made a difference. She was taking 6ml twice a day before her surgery- she is now down to 1.5ml twice a day, and should be completely off of it in three more weeks! (after this she has one more med to go, which she will not start weaning until after her Cleveland appt in January.) And still, no seizures! While technically we are still supposed to take seizure precautions with her, we have relaxed significantly- I am even able to let her out of my sight without panicking now!

While we have not seen seizures, she is definitely "quirky." If you have been around her, you know what I mean. For those who haven't, how do I explain? Her word-finding troubles are probably the most noticeable. The meds may or may not be to blame for that- her neurologist reminded us at her appointment last week that her year of seizures did basically take away a year of development- so though she is five, it is not surprising to see behaviors that are typical of a much younger child.

There are times I feel a little like I did when she had constant seizures- during some days, or even parts of days, she is very difficult to communicate with and does very odd things (chewing on everything, repetitive behavior, talking to herself, wanting to play by herself- this is odd for Aggie! etc) She absolutely cannot miss a nap or she becomes completely goofy. Yet sometimes she has long stretches of "normal" Aggie behavior.

If I get comfortable seeing her as the old Aggie, normal Aggie, then when the quirks come up I get frustrated and worried. But if I cut her a little slack, remember what she has been through, and accept the fact that she still has special needs, then her quirks are just quirks, and they become much easier for me to handle. Her special needs may go away after she's off the meds and completely healed from surgery, or they may not, but for now they are here, undefined, and unpredictable.

So (after struggling with these thoughts for awhile,) I think, so what? So she's quirky, she's HERE, she's alive, and compared to where she was before, she's doing GREAT! Her "quirks" are much less problematic than the seizures, and we get to see her huge Aggie smile several times a day. And her unique, Aggie personality is shining brightly-

Every morning when I wake Lorraine up to go to school Aggie whines "Don't turn on the light! I want to still sleep!" As Lorraine gets dressed in the bathroom, Aggie lays in bed for just a moment before she hops out of bed and quietly makes both of their beds. Then she runs to get Lorraine for the big surprise, "Rainey, you have to close your eyes and come to your room and see, it's so beautiful!" Lorraine is very good about playing along even though she has ceased being surprised a long time ago!

One day I let her take a nap in my room. After about an hour (not near enough time for a typical Aggie sized nap,) Aggie came out of my room. "Mommy, I'm ready to get up now. I sleepded already." I knew this was untrue, because she looked relatively put together for Aggie. When she really does sleep, she comes out of her room looking like she's just had a ride on a helicopter.

"Aggie, did you really sleep?"
Her mouth was going a million miles a minute already. "Oh yes mommy, I sleepded really good. I sleepded in your bed and I am ready to get up now but mommy... I have to show you something." She got very serious and took my hand. I let her lead me into my room to the table by the side of my bed. My digital clock said 11:37pm.
"Mommy I sleepded but the numbers....the numbers.... I don't know what happened to the numbers because I sleepded really good and my feet were under the covers and.... I was being good... and my feet were sleeping under the covers... and look I made your bed for you...and I'm really sorry mommy..... but my feet where under the covers but the numbers.... I don't... my feet... I sleepded I really did.... my feet... ............maybe my fingers did it."