Here we go again...

Unfortunately, Abby has started having seizures again. She had a couple on Wednesday and Thursday. Our plan was to wait and see if they stopped, and schedule a video 23 hour EEG for next month. On Friday, however, she had 13 seizures. Our neuro's office sent us to the hospital, but when we got there and talked to the neuro, we decided that Abby didn't need to be admitted. Abby had a rather high dose of generic Keppra last month when she was sick. Since then, we have been slowly lowering the dose to a level that will not cause dizziness, but will keep seizures at bay. Apparently it is now too low. We also refilled her prescription on Monday. Apparently, pharmacies get generics that can be 85-115% absorption (as opposed to 100% for the name brand). Each month, they buy the cheapest one, so the absorption rate can change from month to month. The refill we got on Monday could have had a much as 30% less of an absorption rate as the month before, which isn't great when her body is still adjusting to the medicine. That seems a little crazy to me, but what do I know? It was the perfect storm. I hate that Abby had to have seizures, but at least now we have know that she cannot tolerate generic AED's.

Now, we raised her dose a little, and we are giving her only the name brand Keppra. We could do that at home, so we definitely didn't want to stay in the hospital if it wasn't totally necessary. We are also giving Abby Klonopin, which is a pretty fast acting AED, to prevent seizures until the increased dose gets in her system. The Klonopin does make her unsteady, so she is unable to walk again. We are praying that she will only be on the Klonopin a few days, and she will recover much quicker this time. This was her 3rd visit to Kosair this year. We're hoping it is her last. The more we learn about managing her seizures, the fewer trips we will have to make.....I hope. Of course, Abby has been a good sport. The Klonopin makes her a little agitated, but she likes it when we hold her up and let her "walk" around the house. Of course, she's loving her movies. Thank goodness for Little Einsteins!

Snow Days

Abby went back to school on Monday, and had a good day. Her teacher said she seemed happy to be back, which is always great to hear. School was out yesterday and today because of the snow. We enjoyed hanging out around the house in our pajamas.

Abby's Nonnie gave her a Violet puppy a few weeks ago, and we finally got online to personalize it for her. She has been having so much fun with it. It is so cute. She grins whenever it says her name.




I love it!

Abby is doing well enough to start back at school on Monday. She has been without seizures for a couple of weeks, and the medicine seems to have very few side affects, other than making her a little dizzy, or unsteady on her feet. We have lowered the dose almost in half, which has helped out a lot. She is walking independently again, but her balance is still not quite what it was before. She has run into the wall a time or two, and has almost fallen several times. We are letting her walk, but we're just staying close enough to catch her if we need to. We're thinking after a few more days, she won't even need us to do that.

Wishes in the Dark

I can't take credit for writing this, but it really hits home for many of us. I've seen it posted on a listserve, and came across it again tonight on another blog. It's a tearjerker, but so true.

WISHES IN THE DARK
Sometimes when she's sleeping
I can see in my mind's eye
the little girl I thought I had,
the one who said good-bye.

Sometimes when she's sleeping
hands folded by her cheek
I close my eyes and see before me
a child who can speak.

Sometimes when she's sleeping
she seems so whole and well
I can't believe she won't awaken
with dreams of which to tell.

Sometimes when she's sleeping
and the tears in my eyes overflow,
I steal what kisses I can in the dark
and wonder what joys she will know.

Sometimes when she's sleeping
and my eyes ache with tears unshed,
I pray she'll always be full of peace
as she slumbers in her bed.

Sometimes when she's sleeping
I can almost hear her say
"I love you, Mom, with my heart
and my soul, each and every day".

But always when she's sleeping
I am full of pride
at the miracle that is my daughter
and the perfection that is inside.

-----author unknown

Painting

Finger painting sounded like a good idea.....or not.

She's up and moving!

Abby likes to stand in front of the computer and listen to the fan. She thought it was particularly funny this evening.



Abby is walking better every day. Today is the first time she has been able to walk without support since she started having seizures a few weeks ago. Yay Abby!!!!

Great Day!

Abby had a GREAT day today!!! First of all, she slept well last night. She has now gone a whole week without seizing. I'm thinking we are finally getting a handle on it. We are slowly lower her dose of Keppra. Her balance has improved so much. She is sitting up independently again, and is walking so much better than yesterday. Her balance is still preventing her from walking without help, but I am thinking that the balance problems may be due to the Keppra. Hopefully, she will greadually adjust to the medicine, or we can lower the dose to a more manageable level for her. She is getting her strength and energy back. It's so great to see her up and moving!!!