Brakes

The brakes have been slammed on Emily's good seizure streak.

On Saturday we noticed she was having very subtle spasms again, well we thought they were. As the night went on it was much more clear that they were spasms.

Right before her 9pm meds she was asleep and she started shaking her head back and forth, again very subtle, like she was saying no. We were pretty sure it was a seizure and luckily it was the only one and it only lasted 10 seconds.

Joe and I took shifts through the night to watch her. She did not sleep much through the night and in turn she has slept most of the day.

Today, more spasms, they are still very subtle. Sadly she has two seizures, well we are almost 99% sure they are seizures. Both were less than 15 seconds and were the same as the day before and both while she slept and they never woke her up.

Joe and I have been racking our brains to see what it could have been.

There are several different things it could be. She has been constipated ( sorry if this is TMI) she has not had a good BM in 2 days in spite of miralax.

She was out in the heat on Saturday. We did a good job on keeping her cool though. I did forget to give her MCT oil with her 10am feeding which brought her calories down slightly but her urine ketones and blood sugar remained perfect the past 2 days.

She has also been super gassy. When I vent her g-tube air rushes out so I am trying to vent her more often.

For the life of me I just don't understand her seizures. She has a virus with a fever of 103.7 and no seizures and now she has had seizures out of the blue with no reason what so ever. I guess that is just the nature of stupid seizures.

She had 22 days with no seizure or spasms. She is capable of doing it again! I keep telling myself this.

Happy Father's Day!

Emily has an amazing father. I know I am biased but he really is a great dad!

Being a parent of a child that has special needs it hard. Much harder than I ever thought it would be.

Emily does not show her love like "typical" kids do. She may not crawl, roll over or play with toys but we know she loves her daddy!

When he comes home from work everyday she hears the kitchen door open and she turns her head in that direction knowing her daddy will be walking in soon.

As soon as he says one word her face lights up and soon to follow is usually a big ole grin!

Thank you Joe for being the daddy that God has chosen you to be.

I love this song! You may not be chasing monster from under her bed but you sure do chase a "monster" from her!!

I love you daddy -pretty pretty!

epilepsy walk

We participated in the Louisville epilepsy walk today and it was great! It started storming first thing in the morning which turned out to be a great blessing because it kept it cooler for a while longer. Once the sun came out it heated up pretty quickly though.

The walk itself was only an hour and we cut if short and went to the cool exhibits until the awards ceremony.

Our team consisted of 25 walkers and we raised over $1000!!

In total the walkers raised over $50,000 for the foundation!

We had a really great time seeing lots of our friends, family and even several nurses from the hospital.

Thank you all so much for spending your morning with us and raising so much money in honor of Emily!!

We love you all !

Emily ready for the walk. I tied a few fans to her stroller to keep her cool.

A few of Emily's nurses from the hospital. They are the best!!

Lots of people were there for Emily!


Britt and Stacy both came too!

Jakob kissing Emily. He is such a sweet boy.

Group picture! Well partial, several of our team had to leave.

Emily's nurse made these ribbons for everyone!

Emily with Joe's mom, step-dad, and brother.

That is her shirt on the front of her stroller. That was the smallest they had!! haha

Joe was playing!

Haha!!

Epilepsy Walk Notice

I just got this email about the walk tomorrow that I thought would be good to pass along to all of you who may be participating...

This Saturday is going to be a real scorcher, and the Epilepsy Foundation of Kentuckiana wants to make sure we do everything we can to keep everyone attending Walk Around Kentucky for Epilepsy at the Louisville Zoo as comfortable as possible. So, yesterday, Connie and I met with our friends at the Zoo and they made arrangements for us to use the Gheen’s Center, which is air conditioned and has tables and chairs, to hold the door prize drawing and awards ceremony! And, this building is close to the Meta Zoo Stage where the walk will begin and end.

Also, the Zoo has ample air conditioned exhibits for Zoo goers to go in and out of to take shelter from the heat. Best yet, is the Calistoga Spray Park for those wishing to cool down in the spraying water. Kids can bring their bathing suits to change in and out of…..which is just another perk to having our Walk at the Louisville Zoo!!

The Epilepsy Foundation will have plenty of water on hand, along with fruit, breakfast bars and yummy donuts. So, if you haven’t already made plans to join us…..its not too late! Go to www.efky.org to download a walk brochure or register online. Or, just come to the Zoo between 8:00 and 9:00 a.m., tomorrow to register to participate. The cost is only $25. You can make a donation in this amount or ask family and friends to support your efforts in the Walk. Our goal is to raise $1 for every child and adult impacted by seizures in Kentucky and southern Indiana, and with your help we can reach this goal of raising $90,000!!

On behalf of the Board of Directors and staff of the Epilepsy Foundation of Kentuckiana, we hope to see you tomorrow, as we work together to raise awareness and necessary funds to support the more than 90,000 children and adults living with epilepsy and seizures in our service area. Thank you!!


Deb McGrath

Executive Director/Co-Founder

Epilepsy Foundation of Kentuckiana

Epilepsy Walk

Let me start by saying I am so excited about the epilepsy walk on Saturday!

We have raised over $1000!!!

That is double our goal!!

We called and double checked a few things, first, everyone over the age of 2 must be registered. I suggest to do it online so that you do not have to wait in line to do it there.

Secondly, she said that everyone has to pay $25 to walk. She did say that if everyone registers together they will take the money that we have raised as a team and divide that amongst the walkers in our team so that everyone has technically paid their $25 but you have to sign in with our team .

We are all meeting in front of the zoo at 8:30am. The walk starts at 9am. Lynn has bought purple bandannas for us to wear so look for those.

I am so excited to see everyone. Joe and I are blown away at the amount of people that are sacrificing their Saturday morning, leaving late for vacation, and giving so generously all for Emily.

You all mean so much to us!!

Can't wait to see you there.

If you need my number just email me or message me on facebook and I will send it to you.

just don't know

I have not been blogging as much lately because I have actually been sleeping at night and that is normally when I update my blog.

For the past week Emily has sleep from about 10am-10pm. It's nice to sleep more. Unfortunately I have still have to feed her at 10pm, 2am, 6am and meds at 8am so I don't get to sleep straight through the night but it is still nice!

The other day I had really good eye contact with Emily too. You could tell that she was looking right into my eyes. It did not last long but she did it a couple times.

She has been very jittery and moving a lot the past week or so too. I am not sure if it's seizure related or it could be the increase in meds too. She has an appointment with neurology in a couple weeks so we will see what he says then.

Here are some more pictures from Emily's professional photos done by Shanna Simpson.

party pictures!

Emily's 1st birthday party was amazing!

We are so thankful for all the people who came to celebrate with us.

She slept through the entire party and as soon and we came home she was wide awake!

I took a few pictures but as soon as people started coming in I forgot to take any more so if you have pictures please email them to me.

Here are a few that I managed to take before the party started.

This cake is so beautiful. My friend Lynn made this for Emily. She also made my baby shower cake.

Rebecca and Emily

The whole Neal gang.

Joe's dad, step-mom, grandma, and brother.

4 generations.

My best friend Angie and her baby Ava.

Emily in her new car seat.

This is Annie her son Collin was also diagnosed with infantile spasms. It is so nice to have met someone that really does understand what we are going through! Collin has the sweetest smile and a very contagious laugh!!

This is a rattle Annie made Emily. Very few "things" make Emily smile. Mostly just me and daddy but when I jingled this she smiled and looked in its direction.

She also made her an egg plant one. How creative! Thanks Annie!

Emily got so many wonderful gifts. Tons of clothes, a few super cute bathing suits, a car seat and a pool for her to use her waterwaybabies neck ring in. It is not a huge pool but big enough for us and her therapist to get in with her.

Thank you each and everyone of you came or sent a card. You all helped make Emily's 1st birthday wonderful.

Hopefully I can get some more pictures of the family with Emily .