Sunday, October 10, 2010

general update all things Emily

I just thought I would update everyone on Emily in general.
I talk about her seizures more than anything and it gets easy not to talk about the other things she has going on.

Lets get the seizures out of the way first.

She went 7 days with no seizures and had a 50% reduction in spasms. On the 7th day her spasms increased and she began to seize again. This time it only lasted 3 days and only 2 of those days required minimal extra meds to control them. Right now she is at almost 36 hours with no seizures and her spasms are super short and very weak and are down about 50% from what she normally does.
We changed one of her her fat sources on the ketogentic diet from canola oil to butter and we have seen an improvement with seizures. Don't know if it is just a coincidence or not but I will take it!

Developmentally she is right around a 4 month age level. I look back at video of her at 4 months old and she is doing things all over again. She is moving so much while she is laying down. She wants to badly to set up and I think she will get there soon! Her head control is getting pretty consistent, it of course is weak when she is tired but she is doing really well with it.
Emily has always been a clingy baby but lately it has gotten worse. She knows who she wants and will let you know if it is not you. Sometimes she only wants me and other times she just wants her daddy.

She has never liked any type of seat. She hates everything we have tried so she sets on the couch with us a lot on her boppy with a pillow under it to set her up but the last couple of weeks she just gets fussy and won't take her passy and it gets hard to hold her all of the time. One day when she was not happy I just set her up on the couch next to me and she was happy as a lark! Now that is all she wants to do. I think it is great because she is tolerating setting up and it is making her core stronger.

Her vision is getting so much better as well! Before I would have to say something to get her attention but now I can just walk in the room and she smiles because she sees me and recognizes my face. This makes me very happy. I have noticed her looking at the computer and the ceiling fan most recently too.

She still does not have teeth. At her most recent ped appt she said not to worry about it until she is 18 months old (she is 16 now) and then she would get x-rays. We have seen her teeth on an MRI before so I know they are there, just don't know why the won't break through.
She has no desire to eat ANYTHING. I try but she acts like I am feeding her acid. She especially dislikes water. She always has. Thank goodness for a g-tube. :)

We still have a long way to go with her sensory issues. She completely shuts down when we go out. Her pediatrician does not know her well, thankfully we don't go often, so last week she looked at Emily, who just got finished crying her self to sleep, and she asked if she looks at things or me. I am sure she did not believe me when I told her everything she is doing but I can't make her like going out and I can't make her tolerate a million sounds and smells at one time. We are working on it.

Last but not least...sleep.
Clearly there has not been an improvement (hence the blog at 4AM)
When she we seizure-free for 7 days I was beginning to get her on a better schedule but one seizure can ruin all of my work. Right now she is laying next to me kicking her legs and "talking" to me. I am giving daddy a couple more hours and then I am going to bed.

I could go on for days but I will stop.

I have another blog to post tomorrow. We have a friend ,Christy, who is doing a small fundraiser for us. It is more for locals but I will tell everyone the details tomorrow.

5 comments:

  1. I love hearing the small things that Emily is doing! :) Sitting up by you, looking at things, those are fantastic. My Emily was SO much like your Emily when she was little. We would go places and she would immediately shut down and be "asleep". She was so overly stimulated by everything and sensory overload was constant. She is much better now, but I have horrible memories of those times. PT and OT was a nightmare - she would either scream bloody murder the entire session until she puked, or she would "sleep" through it all. Our therapists still talk about it - she was the worst sensory kid they had ever seen. Luckily she is SO much better now.

    Wow, I made that all about me didn't I. Sorry! LOL I am glad that the new fat is helping her seizure control. Or that coincidently her seizures are better - whichever it is, it's great! I hope they stay calm.

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  2. I loved reading this! I read it out loud to Jeff :) We love to hear of the progress Emily is making. Even the small things :) She is such a special spirit!
    I hope you were able to get some much needed sleep. Kisses for Emily!

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  3. Thank you Erica for letting us know all of the things she is doing. She certainly has a mind of her own. She is on my mind all the time and so many people you don't even know are praying for her. Love you all 3! Love, Aunt Shirley

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  4. May God continue to Bless her...Emily is beautiful! Prayers always...

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  5. Thinking of you guys and hoping you are doing well.
    Sorry I haven't been around much...
    you guys are always in thought and prayer though!

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