Tuesday, October 26, 2010


I am a blog slacker! I admit it.

I, sometimes, just get tired of saying the same things..seizures, seizures, seizures....

So since her last hospital admit Emily has been ok. Seizures daily but they are manageable.

We got her home oxygen and oxygen saturation monitor delivered last week. Getting those, hopefully, will keep her out of the hospital more during cold and flu season. The main reason she goes in the hospital is because we have to give her so much medicine to stop her seizures she gets sedated and needs to be monitored. This way we can throw the monitor on her and feel more confident about staying home and avoid a chance at her getting sick from germs in the hospital.

I am not holding my breath but she is SUPPOSED to get shower chair and new medical stroller today. Once I get them I will post pics.

Right now it has been 2 1/2 days since her last seizure. She is still having spasms this whole time but no seizures that I have seen. She even slept last night from 10:30PM-4AM.

We did get to go to church on Sunday. I was nervous because we, along with two other men, we asked to speak on the topic of suffering. So, yea that was hard. In the end I felt good about letting my church family know how we feel. We feel so blessed to have them care so much about us!!
This was also the first time I have let anyone watch Emily at church. During first service my friend, Angie, just set in service and held her so I could see her the whole time. During 2nd service she took her down stairs and said if she needed me she would send someone up to get me. About half way through someone stuck their head in and motioned me to come. When I got down there she was crying so hard and as soon as I took her she stopped. We have been having some separation anxiety issues lately especially when she wants comforted. I hate that others have so much trouble calming her down BUT it is a normal 17 month old behavior :)
I was afraid Emily would just shut down but she did very well with all the sounds and one of our friends, Chasity, even got her to smile. That is a pretty big deal because normally she will only smile for us.
Later that evening we had a visit from Emily's great-aunt Shirley and Emily really enjoyed being loved on and started to fall asleep in her arms without her paci! Emily loves her paci :)
It was a fun but busy day and I am so proud of Emily, she was such a good girl!

She had her cardiology appt yesterday and it went well. She still has a "very tiny" pvo (hole) in her heart but he feels it will be just fine on its own. She also has an innocent murmur because she has false tendons, he described them as like "pumpkin guts" and when the blood flows over them you hear an extra sound. He is actually the only one to ever hear it. So we don't have to go back and see him for 1-2 years!

Yesterday I changed Emily's g-tube! I know this sounds silly but I was very nervous and I made sure Emily's nurse was here but I did it all myself so that I would feel comfortable in the future. I piece of the tab you use to open it broke off, it was still usable but it would have to be changed soon anyway.  It was easy and now I don't worry if I have to do it again.

Sorry for the lack of picture, I need to download them from my camera. I promise more next blog, whenever that will be :)


  1. wow...very brave of you to get up and speak on suffering...you truly amaze me!
    Sometimes I find myself welling up with tears when speak to a newbie about Hudson...a congregation? forget about it...i'd be a mess!

  2. oh Debbie 1st service I was a mess, it was easier the 2nd time around though. Joe was setting next to me so if I could not talk he could take over.

  3. Emily is SOO lucky to have such a wonderful mommy and daddy! God knew you two would take wonnderful care of her and love her dearly. This is why He chose you two for her parents. I love you all 3 VERY DEARLY!
    Grandma and Grandpa Johnson

  4. I'm glad you were able to go to church and change the tube by yourself. I think it's wonderful that you shared your story with your church.