Monday, June 19, 2006

The ups and downs (by Brandon)....
Long time no blog. Since the last update, Sophie has been about the same. She continues to have mild (sometimes almost unnoticeable) seizures after she wakes up. The good news is that it has been 11 days since she has had an episode that upsets her. We were hoping that they would be completely gone by now as we would prefer not to put her on Topamax. The plan would be to start tapering off of the steroids starting in about 8 days. If the seizures aren't gone though, the next medicine would begin.

Yesterday, Sophie revived her ability to sit up unassisted as long as she wants (a father's day present to daddy). She continues to be happy and has found her voice again too. Every time we lay her down to go to sleep or when she wakes, she pushes up on her arms and "screams"/ahhs at herself in the mirror attached to her crib. She also rolled over to her left side for the first time on Saturday.

The weight keeps adding up every day. She is eating about 25oz of food a day (not including her milk every 3 hours), which is much higher than the recommended amount for a baby not on steroids (please send food donations to 1467... -- joking). Actually, if anyone knows of a good chiropractor, let us know.

We hope for a positive step forward today. Thanks for all of the kind words and encouragement; it really does make a difference!

2 comments:

great aunt barb said...

Glad to hear Sophie had a good weekend and Daddy got to enjoy Father's Day with his girls.

Look how far she has come from Mother's Day to Father's Day!!! She's on the way..maybe not as fast as we'd like..but on her way none the less.

I've got a little something for Sophie when I see her next weekend that I know she will really enjoy.

Love,

Aunt Barb and Uncle Neil

michelle said...

Hi,

I was introduced to your site by Melissa Ralston. She thought I might be interested because I have a daughter with epilepsy. Anna began having seizures when she was 3 months old. She is now 2 1/2 and still has seizures but now they are infrequent (once every 2-3 months). She too is idiopathic (had MRI, CT, etc.etc.)and to this day we do not know the cause.

I wanted to write just to offer some words of encouragement since I can remember the early days of Anna's seizures like they were yesterday. I remember the fear, the unknown future, the pain of watching her have a seizure and wishing they would just go away.

Her neurologists then did not have any idea whether Anna would progress normally, but now we see that we have been blessed because the seizures went from happening frequently to now only once every 2-3 months and she is developing normally. She rolled over later than she should have, she walked a little later than her friends and began talking a little later, and she still isn't ahead of the curve in any area, but she is absolutely fine. And there was so much uncertainty for us that wore me down.

From reading your posts I can hear your positive attitude and the hope and faith you have and most certainly need. Some days will be good and some won't. It sounds like you're experiencing that.

I know choosing the medications is difficult and frightening. We've been down that path too! I hope you have a good neurologist whom you trust and with whom you have good rapport. You mentioned the B6, are you seeing a metabolic specialist too?

Our childrens' neurological conditions are different (no two are the same, as I'm sure you've found in the complicated world of the brain), but I know that I can relate to what you've been through.

I feel like we've come out on the other side to some degree and I just wanted to offer our story to let you know that a day will come when you will feel like you too have come out on the other side.

There is so much that I would like to offer, but I don't want to get carried away. I feel a little like I've intruded, as I don't know you and I'm quite unfamiliar with the blogsphere.

But I just felt compelled to let you know that I am a mother who has been through something similar and I really understand and feel for what you're going through.

Continued success with Sophie!

Michelle Sanders