Epliepsy Walk

Join our team for the Epilepsy walk!

June 19th 2010
It will be at the Louisville Zoo.

louisvilleepilepsywalk.kintera.org

If the link does not work just type in the address and click on sponsor participant and type in Emily Rollins.

Our goal is 25 walkers and $500 but I know we get do better than that!!

Registration begins at 8am and the walk starts at 9:15am.

Hope to see you there!

quick

Emily had a good day yesterday.

Only 4 seizures, that we saw, all day and they were not in a cluster just single and all under 5-10 seconds. That is a pretty big deal!! The day before she had over 40.

The new nurse is working our great! She will be here Mon-Thur and we have another nurse that comes every Friday. They both just love Emily. How could you not love this face?!

Emily had pink eye a few days ago. We are still giving her drops for it. This is her first infection of any type. Believe it or not she is incredibly healthy. The only fever she has ever had was after her g-tube surgery and that is pretty normal. No ear infections or colds. We are def blessed in that department.

She is becoming more and more clingy. She LOVES to be held. We do lots of exercise with her and make her stretch but how can you deny her when you know she just wants to cuddle. She is so snugly too!

She is babbling so much too! I read her a book last night and she "talked" with me the whole time.

catching up

Guess I need to update this thing huh?

When we left Cleveland Emily's seizure were doing so much better, anywhere from 0-8 is what we saw. I say saw because she has many more that we don't see. Still that is amazing, much better than 40-70/day.

We did not know if it was the new med, increase in another or the steroids. Emily always does really well for a few days after a dose of steroids and yesterday we found out that it was the steroids because yesterday she had 41 seizures and she has already started this morning.

Every night before we go to bed we pray with Emily and we pray that the monster (seizures) will leave her alone, I pray one day I will see her last seizure.

So now that I got the bad stuff out of the way.....

We got our new full time nurse , well she is 4 days/week, and I really like her. I think she will work out great for us. I am so thankful too because we have had a few that I just did not feel comfortable with and now that she is here 4 days and then we have another nurse for Fridays that I really like too I feel like soon I will be able to sleep a little more :) yay!!

I had to get Emily a new bathtub because the one she was using was getting too small for her, it just was not made to hold a baby her size. I am on a few online support groups and they have been so incredibly helpful and I asked them what they did for a tub when their kids outgrew the baby bath but could not set up to use the big tub. Some one suggested a pillow like "bathtub" called safer bather. So we got it and it's amazing! I wish that I would have known about this before I had her. It is great for newborns and it is perfect for Emily. She really likes it too because she can stretch out. It holds her perfectly and it tapers slightly so that when she gets bigger it can just go under her back to support her head.

welcome home

We finally got home yesterday.

We decided to stay in Cincinnati for the night when we stopped for dinner because we were just too tired to drive any further.

Emily is doing good. She really has been such a good baby this past week. She has had to endure 16+ hours in her car seat, 5 days of eeg leads glued to her head, 5 different people trying to get an IV in her, she was sedated, and drugged up for days. That is a lot for a grown person to take and she did all of that in a week and never even threw a fit!

There is not anything new to share today so I am just gonna post some pics. We stopped at lake Erie and took pics, we tried to have as much fun as we could.

staying in a hotel for the first time

ahhh bath time or nap time?

sleeping so good!

what do you have glued to my head??

We stopped at lake Erie and took a few pics.

Yay! We are staying in another hotel!!

So happy to finally get a bath after having probes glued to my head for 5 days!

Seriously thinking about getting a hotel bed for her to sleep in at home.

This is what we saw coming home! There were signs all over our yard, inside and outside of our house!

Thank you!!

She did not want her sunglasses off!

cleveland update

First I want to start off by saying thank you.

Thank you all so much for all of the kind words, prayers, and very thoughtful messages. It really did help us get through a horrible day. So many people love and care about Emily, even complete strangers, and for that we are eternally grateful!

Emily had a MUCH better day today. We did not see any visible seizures but with that being said since she is still on an eeg we saw many on the screen, mostly when she is sleeping or when she is falling asleep or just waking up.

She was much happier today also. We got lots of smiles and some pretty good eye contact too!

She saw the ophthalmologist, who was also great, and he said she does have CVI. Her eyes are healthy and her vision is perfect, her brain does not let her see properly right now. When we get home with will start a vi son program for her to help her see better.

Yesterday we met with the neuro/metabolic specialist, he was so great! He explained what he thought and what we are going to look for. He thinks Emily may have an early onset of Rett's syndrome or cdkl5. She has actually been tested for cdkl5 before and it was negative but apparently the lab the preformed the test is not "the best" so if all of the other testing comes back negative we are going to re-test her for that one. He was explaining that finding Emily's disorder is going to be very difficult. He described it to us like this-finding a typo in a book with 20 trillion letters in it.

Finding what is "wrong" with her may not change anything, but if we do find out we can prepare ourselves for what is to come and some disorders have other problems that arise in the future like heart or kidney issues and we can already be on top of things if we have a heads up.

So blood and urine were sent off and we should hear something in 4-8 weeks.

Also we have decided to change her diet slightly. Stacy if you are reading this I am going to email you all of the new info this weekend :)

She is currently on a 4:1 ratio *4 fat to 1 carb* and the formula that she is on has artificial sweetener and some people are much more sensitive to it so we are changing formulas and ratios to see if that will help at all.

I will leave you with a few pictures.

This is Emily's very first hotel stay. She looks pretty darn comfy.

Her eeg leads on. She did so great with them, all 4 days worth!

bad to worse

I am blogging this because it is too hard to tell 35 people the same thing over and over. Please do not get your feelings hurt because we did not call you and tell you personally. We are choosing not to call anyone right now. It is too hard to say what we are going to say. If you would like, you may call us later tonight and ask questions but right now this is how we are choosing to update about Emily.

Last night she had a really bad night. Really bad seizures that would not respond to ANY meds and they were very strong. They were getting ready to send her to the PICU-(pediatric intensive care unit) when she finally stopped.

So that was our night-BAD

This morning the neurologist-neurosurgeon/epiologist came in to give us the results of her PET scan. Emily's seizures are from everywhere in her brain. She is not a surgery candidate. He also said from monitoring her on a constant eeg the past few days she has a very severe form of epilepsy. We already knew that but we had hoped that the PET scan would show that she was a surgery candidate so that was a huge blow.

She does not respond to most meds so we are adding some meds to her already extensive list. Once she is on the new drugs well we will begin to wean her off her klonopin and then use klonopin as an emergency drug instead of ativan and diastat because neither of those are working for her.

Our new plan, since she does typically respond well to steroids (for a short time) is when she starts a big cluster of seizures we will begin a round of 3 days or so of oral steroids-starting now because as I am typing she is seizing.

We are also starting a new drug zonagran (tonight), there are only 3 drugs left he thinks could work for Emily and this is the first one we are choosing to try. We will also be increasing her phenobarb because her phenobarb level is still a little low and in higher doses she does respond for a little while.

We will also be meeting with the keto dietitian to see if there is any tweaking we can do with the diet because she is still not in large ketones. That meeting is tomorrow.

Our new goal with Emily is less seizures, seizure freedom is not realistic right now.-WORSE

The doctors here are amazing and incredible. Sadly there is just not much else to do for Emily. Only time will tell what the future holds.

This is the hardest thing to deal with because there has always been a next step, many other drug choices and tests. Now we are down to 3 drugs and that is it. We have hit a brick wall and it hurts.

So please be understanding that right now we are grieving again. It may sound horrible to say that but we are. We are grieving the hope that we had in new meds, new doctors, new tests, new outcomes for Emily.

The reason we chose not to call anyone is because this is hard enough to type let alone tell so many people. Emily does have a lot of people who love her. Again, it is not personal. It is actually selfish and right now that is what Joe and I need to worry about, ourselves and Emily.

We will be coming home on Friday probably. She is not stable for travel right now, so hopefully we will be home this weekend. We love you all so much and are so thankful for all the support we get. Please keep our family in your prayers. This is just more difficult then I thought it would be.

I love Emily so much and to see her suffer like this is beyond fathomable.

Cleveland-day one

We are in Cleveland now and Emily is all hooked up to her eeg for the next few days. They want to see all the different types of seizures she has on the monitor so they may back off some of her meds temporarily and see what happens.

It is defiantly a different world here. Don't get me wrong it seems like a fantastic hospital and they have an amazing reputation for the most modern technology it's just not our little,everyone knows you, hospital.

The accommodations are a def lacking comparing to our home hospital. We have a very tiny room and we share a bathroom with another room. There is one shower on the unit and the door does not lock (ha!) Honestly I think we are just spoiled with what we are used to.
On a positive note, they left the hospital bed in the room so we have that to sleep on and a pull out chair/bed thing. The Ronald McDonald house is full so we could not get a room but they are letting both of us stay here so we don't need it now. They have a Ronald McDonald room on the floor for all the pediatric patients family's that has a couple computers, TVs, showers and laundry that we can use while we are here.

So enough with the complaining.....We met the neurologist up here and he is incredibly thorough, he knows his stuff. Joe and I were both very impressed. He agrees that something is going on with Emily's brain that is causing her problems, seizures, developmental delays, and low muscle tone, we just need to find what. He said he finds the cause in about 60-70% of cases but even if we find out what it is it may not change what we are doing. Finding a cause may just may be just that and not being able to fix anything.

That is pretty much whats going on so far, in the morning she has a PET scan done. Unfortunately, she has to be NPO (nothing to eat) after midnight and her test is not until 11am. I am freaking out a bit because I know she will be. We were 1 1/2 hours late feeding her earlier and you would have though I had not fed her all day! Also when she does not eat her blood sugar drops because of the diet she is on so we are going to have to watch the pretty closely. So needless to say I am a nervous wreck about this. She also has to be sedated for the test.

So tomorrow is going to be a long day. We also meet with the metabolic specialist tomorrow and they had me fill out a 10+ page packet to help them fill in on Emily. Maybe they will see something no one else has so far.

I will update sometime tomorrow.