Saturday, April 3, 2010


Eh, is how I feel. Not great but not the worst that I have been.

Emily has been seizing everyday. Some days are better than others. She has had a few seizure-free days and those days are fantastic! It just makes the days when she does have seizures seem worse.

She has only been on the ketogentic diet a couple weeks and we have seen improvement in the length and frequency of seizures but no amount of seizures is ok.

Emily's seizures are mostly tonic-clonic and come in clusters. Some only last 2-5 seconds and others will last 30-45 seconds. The past few days she has begun to have single seizures lasting just a few seconds and not going into clusters. Yesterday she had 2 clusters one was 13 minutes that had about 7 individual seizures and the other cluster was over 2 1/2 hours and I have no idea how many seizures were in that one.

So some times I think things are getting better than she has one for 2 hours.

I have heard of some kids seizures getting better after they began to wean off some of their seizure meds. Emily is currently on klonopin, phenobarbital, and levocarnitine routine and lorazepam and diastat for prolonged seizures.
I would love to wean her off klonopin but she has been on it for a long time and weaning will need to be very slow so she does not withdraw from it.

Also if I may continue to complain for a minute, I am not very happy with Emily's home health company. Professional and helpful are the last two words I would use to describe them.
We had a fantastic home heath and a wonderful tiny portable feeding pump through them but fantastic home health can not provide Emily's ketocal formula so we had to go through crappy home health and they threw a hissy fit and said they would not provide her formula unless they provided her pump WHICH would be fine but they will only give us a hospital grade 79lb (kidding) feeding pump. GRRR! I tried to get the formula through WIC but Indiana chose not to provide that formula but KY WIC does.

So after all that complaining I compare my suffering to Jesus'. Kinda makes you stop stop complaining a little huh.

As I am typing this Emily has fallen asleep (for a little while at least) and she looks so perfect. She is perfect in every way because God made her perfect. Not our idea of perfect, but His idea of perfect. Just like to Mary Jesus' death was not perfect by any means to her, but to God it was perfect. The wonderful thing though is a few days later Jesus was perfect to us all! One day Emily will be perfect to us all too! That is the promise we have in Jesus. He died so that we can one day be healed and be perfect with Him. I keep my faith in Him.

Happy Easter. I pray that you celebrate the true meaning and find comfort in His resurrection.

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