Thursday, February 4, 2010

good and bad

This past week has been busy and full of good and not so good stuff.

Lets start with the good shall we.

We finally got to go back to church for the first time since the end of November. Let me tell you how much we missed everybody!! Our church family has been playing a huge roll in our lives since Emily was diagnosed in Dec.

From hospital and home visits, cards and emails, phone calls and prayers, gifts cards to the grocery, fixing our furnace, yummy meals, thoughtful prayers, and an amazing love offering they have been such a blessing to our little family. They even showed up days before Christmas with arms full of Christmas gifts for Emily! They got her several outfits and a wonderful high chair that is appropriate for her now.

So needless to say we missed them so very much. Emily is so loved by so many.
We cannot thank you all enough!!

On Monday Emily started occupational and physical therapy through first steps. She hated it! Right now they are mainly stretching her and working on head control. I really like the therapist and eventually Emily will like them too. Her leg muscles are so tight I never thought to stretch her legs. I have already seen an improvement in them.

This past weekend we had a "family" game night with some friends. We are so close we are just family now :). We had so much fun! It was so nice to get out and enjoy ourselves for a little while. I have to show you one of the hats that Lynn made for Emily. I sent Lynn an email asking her if she could make Emily a hat that I can clip a flower in for Easter and she made her 2 hats in one day. She is very talented!!!

I love those cheeks!!

Onto the not so good stuff.

Emily's seizures have increased daily since we stopped the ACTH injection, in turn we have upped her topamax dose three times and it is not seeming to help anymore. On Tuesday she had 16 that we saw or recognized so I called the neurologist and he started her on Klonopin and yesterday she had 11. It has decreased her seizures but she has lost any muscle tone that she had left. Every medicine has a different side effect and so far we have been very blessed to not have had as many side effects as she could have had

We are still waiting on the referral to Cincinnati children's hospital. Hopefully we will hear something this week.

Sometimes I think this is all too overwhelming but honestly there is nothing I wouldn't do for that little girl. I love her more than I ever thought I could love.


  1. I just adore her in that hat.. & with her ribbon.. & in her dress.... I just adore that baby! :)

    I just told someone yesterday I think that would have the be the coolest job - to do PT or OT with babies... to help them progress & get stronger! And get to hold babies in the process!!! A wonderful job!

  2. Thanks for coming by Reagan's blog. Please feel free to send me an email and ask any questions that you might have. We also have links to other IS kid's sites at the bottom, so you may find some helpful resources there as well. Hang in there, IS can be a long and bumpy ride, but it does get better! Reagan had the most difficult to control seizures I had ever heard of and now she's seizure-free on Banzel. Stay positive and keep the faith!

  3. I got to your site through Reagan's,and read through your journey the past few months.
    I am so sorry you join this I.S. World...but you are among some amazing parents and kids, and there is a ton of support out there.

    So glad you are walking in is what keeps me afloat!

    Your beginning sounds very similar to ours. We had no cause for our sons I.S. for well over a year. All tests came back normal until we did a muscle biopsy, and we found our sons seizures were a symptom of mitochondrial disease.
    You can read the whole story on our blog.

    Just wanted to reach out and let you know you are not alone.

    Blessings to you and your family.