10,080

10,080 sounds like a strange way to title a blog post huh?

10,080 is a pretty large number.

To most people 10,080 is a pretty meaningless number.

To us it means a lot.

To us it represents many things.

Mainly it means minutes in a week.

10, 080 minutes in one week.

One week that Emily has been seizure and spasm free!!!!!!!!!!!!

So see why 10,080 means a lot!

For one week we have been able to laugh more, rest better, and breath!

Emily acts like she feels better too!

I pray this continues!

Thank you all so much for all of the prayers!!

boring, sunshine and butterflies!!

Things are still going great!

Emily made it through day 5 of no seizures or spasms!! Woo hoo!! PTL!!!

I also found out that her medicaid is going to pay for the $1100 co-pay on her lamictal another WOO HOO!

I still can't wrap my head around an $1100 co-pay. How do those people sleep at night? We have great insurance too. So now we have 2 insurances, that takes a lot of stress off of us!

Praying for more boring, sunshine and butterflies!!!

still going strong

Well today is 4 days seizure and spasm free!!!!!

I am just so darn excited!!

I know that at any moment her seizures can return. I am not oblivious to that fact. I know many other children who that did happen to. So I am prepared for it.

She has been so happy the past few days too. I can only imagine how much different she fills. It seems like she is seeing better too!

Just a reminder about Emily's birthday party. It is on June 13th (Sunday) at 3pm. If you are coming please email me or just leave a comment so we have a head count.

I still can't believe she will be one Saturday! ahhh!!

She fell asleep with her arms crossed. It was too cute!!!

holding our breath

This is now 3 days seizure and spasm free!!

You don't understand what a big deal this is for Emily!! In the past she has only had 1-2 days without seizures and only one day without spasms. In the beginning (Dec) when she was taking ACTH her spasms seemed to stop but they started right back up as soon as she stopped the injections.

Yesterday was a really good day too! After staying up with my little 3rd shifter all night, daddy got up with her around 5am and I slept for 9 hours straight!! He had a hard time getting her to nap so at 3pm he laid her in bed with me and she was out and we slept for 2 more hours! ahhh, all she needed was her mommy. Most of the time she is a daddy's girl but when she wants to sleep or gets hungry she wants me. I love that I am loved!!

So we are praying for another seizure/spasms free day!!

just good

We are home! This is Emily's reaction to being home!

I think this was the quickest admission ever!

They got her stabilized pretty quick too. She got a round of IV steroids again. They always do help her seizures pretty well for a short time but they have never stopped her spasms but this time it did.

Drum roll please......................Emily's last seizure and spasms that we have seen was at 9:30pm on Thursday!!!! That is amazing because for over 48 hours she has not had any!!! WOO HOO!!!

We are having a problem with the lamictal though. When we went to pick up her meds they said they did not have any and when they did get it in it was gonna cost us $1100 AFTER insurance!! We have really good insurance too! UGH! So Tuesday is going to be busy making phone calls and figuring this out. Emily does have medicaid now but it does not go into effect until June 1st and they said it would require prior authorization.

Good news is that I remembered while we were in the hospital they made a bottle of compounded lamictal for Emily because she is still on the ketogenic diet but we found out that the chewable tablets were fine for her to take so we never used the compounded bottle. I called after we left and they still had it!! Since she was charged for the whole bottle the pharmacy let us have it!! It is only a 2 week supply though so hopefully we can get this all figured out by then.

We are hoping for a calm boring week. Also hoping her g-tube stays were it is supposed to!

Emily's 1st birthday is this weekend. I can not believe she will be one already! Her party is the next weekend, Sunday the 13th at 3pm. It will be at our church in Greenville. Everyone is welcome to come. If you would like to come just email me or comment and let me know so I can have a head count. I am looking forward to spending time with everyone!!

out of ICU

Emily got moved to a regular floor yesterday (friday).

This is her "room" in ICU. One wall and a curtain.

We have never had to go there before and I can honestly say I don't ever want to go back. It was not bad for us, it was just heart breaking to see all of the other kids there.

Emily was there because she was given a lot of medicine to stop her seizures, so they needed to monitor her very closely and fortunately she did great!

Privacy is definitely something you don't get there so you hear and see a lot of things you don't want to.

To hear the cry of a mother who just lost her baby is a sound I don't think I will ever forget. I have never been so thankful for Emily. I don't have to give specifics but please pray for that young mother.

The nurses and doctors that work there are some very special people and I have a lot of respect for them.

Enough with sad things.....

So, good news is Emily did not have a seizure that we saw yesterday. She has been extremely drugged and now that I think of it I did not see any spasms either, I will have to ask Joe if he did. Actually it's been 27 hours since her last one but hey who's counting? :)

I had a great talk with Emily's neuro dream team :) and we have decided to add a new medicine, lamictal. That drug will slowly be increased to her max dose along with zonegran. Once she is on those we are going to wean her off phenobarb and we have already began to wean klonopin.

So while she has been here she has been getting iv steroids and oral valium, that combination seems to really work when she has a major cluster like she had. In the coarse of two days Emily had over 120 seizures, that we saw, and that is not including her spasms that she has almost every time she wakes up. On top of her g-tube balloon exploding again, it has been a rough couple days for her.

I want to thank everyone who called and left us messages or send us messages on facebook. I am sorry if we were unable to return all of the phone calls but know that we listened to them all. We were not allowed to have our phones turned on in the ICU. I am thankful for the people who support us!!!

So if Emily behaves tonight we just may get to go home in morning. Keep your fingers crossed! If not we will go home on Sunday.

Please keep in mind if you plan on visiting in the hospital or at home please make sure you are healthy. Emily has taken another round of steroids which can lower her immune system and we need to continue to keep her healthy. Seizures are enough for this girl!

One last thing, June 19th is the epilepsy walk and we still have not met our goal of raising $500. Every dollar helps!

Click here -> Epilepsy walk

If you would like to walk with our team just click join team, if not you can donate any amount you like. It looks like we are going to have a pretty good sized team!! I can't wait. I am going to try my best to get shirts made so if you are for sure walking and would like one send me an email or message on FB and let me know sizes.

In the hospital again

Emily's g-tube balloon popped again! Actually it looks more like it exploded! Ugg! Except this time we could not get the g-tube back in so we had to rush to the ER to have them put it back in.

Meanwhile she has been seizing a ton yesterday and the day before. I gave her tons of meds but nothing was stopping them. I was desperately trying NOT to go to the ER and then she pops her balloon and now we had no choice.

While we are in the ER she starts showing off her seizure skills and it really impresses the doctors so she got a free ride to the ICU.

She is really not doing that bad, they are just extra cautious because they have given her so much medicine and they need to monitor her more closely.

Let me tell you it is a WHOLE different world here. I cannot have my phone on. So if you did not get a phone call that is why. I plan on making all of the phone calls in the morning, so don't worry.

Hopefully we will go to the floor in the morning or either be discharged home.

So that is that. I have gotten no sleep, well I lied I got 1 1/2 hours. I don't see much sleep in my future either.

Please keep us in your prayers. I would love to go home and spend a relaxing Memorial weekend there.