Saturday, January 15, 2011

How is Emily doing?


I have come to realize that different people blog differently. Some people are able to blog daily, regardless of how busy their lives are, and keep everyone up to date. Some people blog when things are rough, because the support we get online is irreplaceable. And then some of us, when times are tough, bury ourselves in our lives and hide from our blogs. Not that I don't want to blog and tell you all how Emily is doing, but I just can't bring myself to do it lately.

How is Emily doing? The answer depends on who's asking. Most people get the answer of "She's good, thanks for asking".

The honest answer? She's doing horrible. We just had an ER trip for increased seizures and an overnight hospital stay. She had a CT scan (these new seizures are affecting her left side seriously). She had an overnight EEG.



She is now being referred to a neurosurgeon for a VNS. If you are lucky enough to not know what a VNS is, here's a link with some basic information. This is not something that will stop all of her seizures (unless we get extremely lucky, but not likely). It is something that hopefully will lower the number she has each day, and help us control the bigger/longer ones.



Right now all I want to do is grab my girl and rock her in our comfy chair and watch cartoons. Unfortunately real life gets in the way of that, so we forge ahead and try our best to deal with this f*&n seizures.



And that is how Emily is doing lately. :(

28 comments:

Our Family said...

i'm so sorry things have gotten so tough. :(

Ashley Dykman said...

I am so sorry to hear things are bad. Please know I am praying for yall!

Melissa and Luke Young said...

I too am really sorry to hear what you have been going through. Emily and your family is in my thoughts xx

The VW's said...

I'm so sorry that the seizures are getting worse! Watching you child having them and not being able to do anything about it is such a frustrationg and powerless feeling! I HATE seizures!!! Praying the VNS helps and Emily and your family are able to move on with your life!

I love her hair in the braids! What a cutie! Love and Big Hugs!!!

Elizabeth said...

Oh, I hear you and I know, I know, I know. Love and blessings and peace and ease to you, dear Emily --

Jamie said...

I have been trying so hard to get Maddie on her Keto Diet and the Nutritionist told us she wants 5 bottles of Ketocal a day! My madie only wants about 3-4.With huge food adversions...solids have been out of the picture.. Twitches and Jerks and Med Tonics still get her each day..As she is on 3 ketos a day and one Pediasure.. Your blog has made me teary...sweet girl. Strong mama...I hear you too...and I know...:(

Becca said...

Oh, I am so sorry to hear this. My heart goes out to you and your beautiful, sweet little girl. Hoping for some relief soon...

Zoey's mom said...

Oh sweet Emily.How I wish we could find the magic to rid you of these nasty things.To ease your mommies worried and anxious heart.Hate seeing that EEG.Hate that I know what those squiggles mean.Hate this for you.Really I do.Will just keep praying.Only thing I know to do.


Sending love and prayers.

Jessica mommy to Alex/ RTS said...

Precious beautiful Emily. All you can do is push forward, love on your girl, and try your best to feel surrounded.

Cathy said...

Oh that precious face. I am so sorry she is going through so much. I am praying for answers and a break from these horrible things. I know it is so hard to blog, also to tell everything over and over. Sometimes I just hide from my phone because I barely understand all that is happening to Annabel much less trying to explain.
As far as the question you asked about the mitronoff, he isn't considering it now. She did have several good months after the dialation. This is really the first Kidney infection she has had since she had the reimplantation at 16mths. We will just have to see if she has begun refluxing back into her kidneys.
Thank you for your update...give her some big hugs from Annabel and myself. Praying for your strenght to keep up and keep on!

Alison said...

So sorry to hear this :(

Rebecca Jackson said...

Tears for you and your family

Denise said...

All I can say is :( Hopefully that prize winning smile of hers keeps you going each day.

Michelle and Sean said...

I really hope that the VNS will help! It sucks that she needs it but hopefully it will at least help.

Praying for you all!!

Lacey said...

Ugh, what we would do if seizures had a physical form that we could beat to a bloody pulp! I hate the damn things, and I hate what they are doing to our Emily.
Jax EEG is horrid, but because he is not having a lot of clinical seizures, everyone things he's fine. But how much would he be able to do if the seizures were controlled?
Kiss my girl for me, and hopefully we'll be down there soon!

Bethany said...

There are no words to describe how much I hate seizures and what they do to some of the most incredible children. I am so sorry that Emily is having so many more of them and that she will require the VNS. I pray that it will give her relief. I am holding Emily and your entire family close in prayers!

Kiley said...

You and I have never met, but I understand completely. We are in the same boat. Reading your post brings tears to my eyes. It is so frustrating that these damn tornados keep happening to our kids. Hunter my son has infantile spasms and has had for 2.5 years. We have had no relief either. Just wanted to let you know I understand and am thinking about you and your family.

Posh Totty said...

I am sorry to hear things are so rough right now, sending lots of love and positive thoughts your way and hoping things start to improve real soon Xxxx

Not a Perfect Mom said...

I'm so sorry...I can't even imagine how you feel but I imagine that everyone constantly asking you does absolutely nothing to help...
thinking of you..

Colleen said...

Poor girl, I was hoping those seizures were getting better. I'm sorry to hear about all of this.....
Big hugs!

Donna said...

Praying for Emily :( Those pictures are so heartbreaking. I hope the VNS is your answer.

Becky said...

Praying for sweet Emily! I'm sorry things continue to be hard. I'm grateful that she's still here though...she's a fighter!

ferfischer said...

So sorry to hear about the latest challenges. I hope you get those seizures under control soon. I hate seizures.

JAYDENS MOMMY said...

Hi Emily's mommy! My name is Jessica. I had googled my son's disease and i saw your daughters pictures. So I started to read your blog and saw that you wrote about Ethymalonic Encephalopathy, but I didnt read if you had ever gotten the results from Italy. My son has Ethylmalonic Encephalopathy, he too had his blood sent to Milan, Italy and 2 1/2 months later the results were in. His metabolic doc requested jayden's father and I to send our blood also. Both parents must carry the disorder in order to have a child born with that disease. The statistics for someone to be born with EE is less THEN 1 in a 1,000,000, which is phenomenal! I would like to speak to you more about it, but i gotta run. Take care
- Jessica

http://jaydenisanangel.blogspot.com/

Timothy Ethan said...

Oh, I'm heartbroken to hear that Emily hasn't been doing well. Hopefully the NVS will be the magical tool to help control the seizures. You guys are in my thoughts and prayers.

Donna

Julie Shaw said...

So sorry

Christy Shake said...

dear peanut's mom,
you commented on my blog "calvins story". thank you. we call calvin peanut, too. i am sorry to hear about your daughter. i like your blog and since i am new to blogging i have not read one that shares our experience. keep up the good work fighting for your child's health and well being.
xoxo, christy, calvin's mom

Carla said...

I so hear you on the blog writing. Sorry to hear about peanut's eeg. These things just suck.