Friday, March 4, 2011

So much to do and not enough time to even think about doing it all


I didn't have Jacob draw a name yet for the Yoplait giveaway, I will have him do it this weekend. Sorry for the delay.

Emily has had a crappy seizure week. She got Klonopin many, many, many times for seizures. She got Diastat twice this week. Once was at a metabolics appointment, where we threw her on a pulse ox machine and she was satting at 88 percent. Not great. :( I called her insurance case manager and was told that the VNS authorization should be in by next week. Three weeks later?? Insane. So we are just waiting (im)patiently for that.

We had a long appointment with our metabolic dr this week. It was not a great day. Emily was doing horrible, and the doctor really loves her. We talked and talked, and we ended with both the Dr and I in tears. We had The Talk. You know, the one where you talk about the future and what it looks like. The one where you compare Emily today to Emily a year ago. Or even three months ago. Her decline is rapid and scary as shit. :(

We talked a lot about mitochondrial disorders and how the metabolicist has always felt she has one. We did a muscle biopsy 5 years ago and it was normal, but he says they were only looking for a few disorders. We are looking into some much, much more extensive testing.

He was quick to tell me that any answer we get at this point won't be good. There is nothing we can diagnose her with at this point that will be treatable, or have a cure. It will just give us an answer, and information for the future.

This appointment SUCKED. I am just so thankful that I really like this Dr, and I know he loves Emily. It was clearly hard for him to talk to me this bluntly, as it was for me to hear it.

We see the geneticist next Friday. We haven't seen her in 4 years. I don't expect anything earth shattering to come of that appointment, other than her reiterating what the metabolic Dr said already.

We have a busy weekend coming, lots of house cleaning and organizing. My mother-in-law is coming for the week, so it will be nice to see her. She hasn't seen the kids in forever. Hopefully Emily will have a better week next week, while she is here.

8 comments:

Alison said...

I'm so sorry to hear you have had to have that talk with the doctor. I wish there was something I could say that would help.

Please know I am thinking of you and praying for your precious girl.

Hugs

Zoey's mom said...

Made me so sad reading this.I can almost hear your sadness and heartache through the words you typed.

Wondered if you had a chance to connect with Reagan's mom,Tera.She knows everything there is about the biopsies and especially what things should be specifically screened for.Infact,a little girl in their town,had a muscle biopsy,came back normal and it turns out they didn't test for a few of the the things they should have and the second test,yielded different results.Kendall is her name and you can find her on Tera's blogroll.

I know how much we depend on each other for support,sometimes that support is the difference between keeping or losing our sanity,so I just thought I would throw out Tera to you again.

Will be sending you love and prayers this weekend and hoping to see you at Ella's.

Rebecca Jackson said...

My heart breaks for you and your sweet girl. Know that our thoughts and prayers are with you. Hopefully next week will better.

Elizabeth said...

Oh dear, I am so sorry. I will say prayers and send good wishes for healing, for something better.

Debbie said...

I am so sorry...
I do know the helplessness...the fear of looking to far into the future...the suckey seizures that drain the life out of you and your child....
i guess one day at a time...sometimes one moment at a time is more bearable...it's a tough road with far too many emotions...

hugs to you and my prayers for your sweet emily.

Clarissa said...

My prayers are with you!

Cathy said...

I adore those precious eyes. But when I am reading I get so sad looking at them. I can't imagine enduring all those seizure then having to take all the medicine. I so wish they would just disappear. Don't know what a VNS is or mean but so hoping it is a miracle for sweet Emily.

Jenny said...

Oh. oh oh oh (sigh) Praying for you all.