Hi Everyone. This is just a quick post to let you know that Ellie is fairing very well after her big scary seizure. They think at the end of the day it was triggered by the ear infection and that she had viral meningitis.
She seems to be recovered from all of that and the spasticity in her ankles is GREATLY reduced. What is up with that? Ok for silver linings.
But the more important outcome is that she is herself, her bright, loving, funny, smart little girl self. We didn't lose any of her that I can tell - thank all the powers that be. She is extra tired from the increased seizure dose. We get her levels checked tomorrow so we will see where she is. We are aiming for the 90's which if you had told me that a year ago I would have been really upset. In the past the initial medication increase fatigue lasted about 2 weeks. We are coming to the end of that two weeks so hopefully she will start getting her energy back. It's hard to see her with dark circles under her eyes and having trouble staying asleep at the same time.
I, on the other hand, and Dave, are really tired. I think I have viral meningitis too due to the constant headache I have in the back of my head going on two weeks or more now. We are not sleeping well because every little movement we run in to her. I really should take up donations for a king size bed. It's the only way any of us will ever sleep well again.
Ellie is so quirky too. She might be scared as we are for all I know. She wants us to come in to her if she wakes at night. Which we do, if we are not hovering there already because we heard her catch her breath. Then she wants a snuggle. Then if she is hungry we feed her and diaper her if that is the need. Then, when all is said and done, including reading ALL the language on the baby wipes box (Kirkland from Costco) several times she wants to go to sleep - NOW. She says, "Ahhh!" and pushes me away and curls onto her left side, forehead buried in the pillow and goes to sleep. It's a somewhat abrupt dismissal at times. But ah well, maybe she is just preparing me for her teen years when she won't want me in her room at all.
On top of all of this we are having to make some critical repairs on our ramshackle house regardless of headaches and braced up knees I have been digging some ditches. Nothing so humbling as digging a ditch.
In between all this chaos we have managed to take Ellie to the beach once as well as the farm to pet the animals. At the beach she loved the pop up tent we got her as did every little toddler in the immediate vincinty so we were blessed to have a lot of little curious visitors that day. She took her nap in it and then played in the tidal pools with dada. She loved the ocean and wanted to keep going in the waves. Then the minute she got in she wanted out because it was really cold and then after warming up in a minute or two would want to go back. Her love of the water is one of the ways we know she is truly our daughter. She was just delighted with the whole thing. She even had her first ride on the Merry-G0-Round, though I don't think we will do it again because it made her pretty dizzy. Not a good thing with the seizure factor in there.
At the farm yesterday she actually initiated reaching out to touch the sheep. She laughed at the baby goats who all wanted to meet her. She has also started signing. Really signing. She will imitate me signing and will sign back. This is a HUGE new development.
That is the current state of things. Apologies to all for not getting back to you more quickly. Looking at the computer is painful right now, it seems to make my headache worse. I will post some pictures tomorrow and post responses to everyone's comments. Thanks to all for your leads on alternative treatments for Ellie and healing thoughts.