Minnesota is in the dreary early winter stage. The snowflakes falling have been beautiful! Oddly enough, just 80 miles north, in the Twin Cities, they received a true blizzard, not just flurries - over 10" in some areas, I think?
The lines on Amy's little head are so lyrical with this little headdress.
Painting nails was a favorite activity for both Amy and Rosy! Never before have I spent the time to do multiple coats of color, PLUS the glittery top coat! I am afraid I have falsely elevated their expectations and it will come back to haunt me some busy evening when I am bathing them...
Movie time!
Doing her evening "stretches" in bed this evening.
I think she's got a hockey goalie somewhere inside!
Playing computer games - Olivia's painting game was a hit!
(click on "Fun with Olivia")
Amy still hasn't had a grand mal seizure. The resident covering the epilepsy team this weekend is an adult physician, so she didn't have much information to share with us. I have a list of questions a mile long for the epileptologist (seizure doctor - who knew they had their own name??!!) tomorrow. I do know that Amy has been having almost constant epileptic "spikes" - abnormal brain waves - during sleep, but I don't know how these "spikes" are interpreted, what they mean practically for Amy, or how they might guide her treatment in the future. Tomorrow I will probably have more answers instead of just questions.
Aaron and I also decided that we needed to draw the line and put a deadline on discharge from the hospital, for practical reasons like childcare issues, as well as to protect Amelia, who is reacting to the glue they use to attach the electrodes, and is developing a worsening cough because of her relative inactivity in bed. We feel it is in her best interest to go home soon. We allowed the doctor to decrease her anti-seizure medications again today, but they will put her back on her full dose tomorrow at 10 a.m. That means that they can discontinue monitoring at 10 a.m. on Tuesday (24 hours later), and we will be discharged sometime Tuesday afternoon. The whole family is pretty excited to have a specific discharge time established! We learned today that they had planned on keeping her up to 14-18 days if they didn't catch a grand mal seizure at night! That seems virtually impossible with a 4 year old. They were planning on removing the electrodes, scrubbing her head, and putting all new electrodes on Tuesday. I don't think Amelia would handle that well, and I don't think it's a good idea for her health on all kinds of levels.
There is still time for her to have a grand mal seizure - which would greatly enhance the diagnostic value of this hospital stay! Please pray that she would have one while still being monitored, if that would be best for her. We don't know if it would be or not - I also found out today from a very helpful nurse that often this just gives them leverage to suggest surgery to remove part of the brain. Aaron and I are absolutely opposed to that idea in Amelia's case because we don't feel she is limited anywhere near enough by her seizures to risk that kind of invasive and forever life-altering treatment. So perhaps God is keeping Amelia from seizing so that we don't have to fight to keep her brain intact! We don't know. As usual, we are praying that His will be done, not ours.
We appreciate your calls, visits, prayers, and thoughts through this whole stay! Two more days feel somewhat like an eternity...yet I am so thankful to be seeing the light at the end of an arduous tunnel!
Videos of more hospital fun tomorrow...
And a give-away (there's a first time for everything) in a few days!
1 comment:
praying.....
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