Quick update...

Today Avangeline is 6 months old. She looks so big! We are still working on her smiles, but she was very talkative today. And Praise the Lord, I did not see any spasms today!!! I did not ask Pam and Joe if the saw any, but we have been seeing lots of an evening and we did not see any today. What a 1/2 birthday present!

I also wrecked our van yesterday. It was a bad deal, I made a lane change and smashed into the back of a little jeep. No one was hurt, my arms are bruised because of the airbag, but nothing serious. It is taking the insurance company a long time to process the claim as they are dealing with the Tornado. I guess that houses take prescience over cars. I can totally understand that. Pam and Joe have been so wonderful, they have allowed me to drive their van since the accident. They are such a blessing in our lives, I don't know what we would do with out them. I should have a rental car tomorrow, the dealership has been out for the last 2 days. I will not be posting a picture of the van as I feel like a jerk over the whole situation...

Ezra is loving day camp. He comes home and falls on the couch, they really wear him out. He is getting an awesome tan, I am quite jealous.

The big girls are as cute as ever. Ivy is talking up a storm, and forming large sentences. Olivet has started to dress herself in the mornings. She likes to wear the same things several days in a row, but we have to pick our battles. She has had such issues with independence as far as things like that go, so the fact that she is being responsible for herself is a good thing.

Pray that this is the first of many seizure free days.

Sleep Much???

Avangeline has this little routine of play time at 3 o'clock sharp. AM that is!!! So needless to say I am a little tired. To top that off we have started flexible scheduling at work so we set our own hours. I decided that I wanted to get off at 4:30 every day, so that I could get home before 6 every night. Well to make that work and still get my 40 I am going in at 7:30. This is somewhat difficult for me, as that requires me to get up and get myself ready before everyone else gets up. So my alarm goes off at 5:30. Mind you I am usually just getting Avangeline back to sleep around 4. So yesterday I had turned off the alarm rather than hitting snooze, I was kind of rushing around to get out of the house and to work on time.....

And well see for yourself.....

I went to work like this. And get this, I didn't even notice till like 3pm. I took a late lunch and went to the consignment store down the street. I had found some skirts that I liked so I went to try them on. As I was putting my clothes on to leave I looked down to put on my shoes, and this is what I saw. I laughed out loud, for a long time. The little old ladies running the shop had to be wondering what was going on. I went back to work and asked if anyone noticed anything strange about my outfit, and the one guy in the office pointed out my shoes. They all swear that until I said something they had not noticed..

June Already?!?!!

Wow time is flying!!! So Miami... Good news/Bad news...

First off we received an official diagnosis of Infantile Spasms. She has always shown the characteristics of the disorder, but never any of the EEG markers that are typical. So she was hooked up to the video EEG for some thing like 24 hrs and the readings showed the beginning stages of hypsorythmia. This is the marker of the infantile spasms. So that was the bad news, as this is something that if not controlled can be very damaging.

Good news. They started us on a medication that is not FDA approved. It is the first line treatment in the rest of the world, but due to the fact that it is not made in the US, no one profits, so no one is working towards getting it approved... Well anyway we were able to get the drug on a compassion basis. So we started her on the meds right away, and it has made night and day difference. She is still having the seizures, but she is smiling, and cooing, and talking. She is holding her hands in a very relaxed manner on her chest. She is following things with her eyes. She has really come out of the funk we had fallen into. The Dr told us not to expect to see anything for at least 10 days. Well the first day we took it I could see a difference. Praise the Lord!!! We are enjoying getting to know our new little girl. Please continue to pray that the seizures will indeed stop and that complete healing will come to her.