Seizure Monitoring--Day 3

At the end of the third day, we still have not been able to capture a seizure.  Even though a seizure didn't occur during the hours we hoped in order to do the scan right after, they would still like to see one on the EEG.  So they've asked me if I'm willing to keep staying until we see one, even into the weekend if necessary.  I really don't want to have to do that.  

Here are a few thoughts that the facts of the last two posts haven't told you:

-Elsie is miserable with that stuff on her head.  She's scratching at it constantly.  So she's sleeping with a sock on her hand. 

-She's being video taped and we're being listened to non stop.  So sometimes, okay often, I imagine what the technicians' comments about us are.  

-I'm enjoying one on one time with Elsie, but I miss Emma like crazy.  

-I'm thankful for three "free" meals for Mommy daily, but they're just not tasty. 

During Emma's hospital stay, she got to meet Minnie Mouse.  Elsie got to meet Santonio Holmes today!  I knew it was a big deal, but honestly didn't know much about him before today.  (He's a football player.  First round draft pick from Ohio State.  Has played for the Steelers and the Jets. And he was the Super Bowl MVP in 2009.) Mark was so bummed he wasn't here.  

Seizure Monitoring--Day 2

Well, no seizure was captured today.  Our day started at 4:15 am.  They asked us to wake early so that Elsie would be really tired in hopes of triggering a seizure.  Instead of causing a seizure, it caused her to be extra cuddly and to take a nap on my lap.  I'll gladly take it!  Because she's so active I very rarely get that at home.  

We just played for a while today.  

She can get around the room like this, but she can't leave it: 

Because she didn't seize by 1:00 they gave her an injection and brought her downstairs to a brain scan.  That ride was the highlight of her day.  She stood up with a huge smile as if to say "my bed moves!?!  And I'm leaving my room!"  I wish I could have captured it for you.  

They're not only trying to capture a seizure on camera, they're also hoping to inject Elsie with something within ten seconds after she starts seizing to help them understand what her brain is doing at that moment.  So, we need to pray that she seizes between 9:30 am and 3 pm tomorrow.  That's how long the technician will sit with Elsie to give the injection.  Thankfully they don't entrust moms with that task!  

Overall today has been a much better day than yesterday.  Thanks for your prayers!  

Seizure monitoring--Day 1

This is Elsie now, at 2:30, but her day didn't start out so peaceful. 

We went first to an outpatient office where she had to get all the electrodes put on and then have a PET scan, which is a lot like an MRI.  I can type that in one quick sentence like it was no big thing.  Believe me, it was horrible.  On a scale of 1-10, I give it a 15.  Elsie hates to be restrained and hates to be messed with.  She screamed, cried, and ground her teeth.  She fought and fought and fought and never gave in.  We sang, we rocked, we tried to soothe her, but settling down only happened when they finally got the sedation medication into her system.  That was after about two hours of struggling.  

Then we brought her over to the hospital.

We got her settled in her room and after another technician had to fix a few more of the electrodes, we finally got her wired for monitoring.  She has a lovely mesh covering and a Rapunzel-like white ponytail where the wires are enclosed.  They're long wires that she's getting tangled in.  And they don't come off until she's discharged, at the earliest Thursday.  They'll be doing various testing daily looking for why Elsie is having seizures and where in the brain they are coming from.  They would really like for her to have a seizure tomorrow.  So, this may be the one and only time I ask you to pray that she has one.  

Thanks for praying and being in this with us!  

Easter 2014

Elsie needs your prayers

Seizures are scary.  If you’ve never experienced one, trust me.  Apparently they look differently in different people.  For us a seizure means that my poor child loses control of her body, her eyes roll back, and she convulses.   Unfortunately, Elsie’s medication is not controlling these seizures.  We went for a long stretch without seeing any and so it seemed the medication was working.  But recently she’s been at the full dosage and is still having them.  In fact, this past Wednesday she was sick and tired, and the doctor said those can both be triggers.  We saw five in one day.  They’ve all been short.  We’ve never seen one longer than two minutes and on Wednesday they only lasted about 30 seconds.  

So, her specialist is telling us that they need more information in order to know how to proceed.  They want to do more testing.  This means that Elsie will be admitted to the hospital for round the clock EEG and video monitoring.  She’ll have a PET scan too and maybe more.  She’ll be admitted on April 28th and may be there for up to five days.  

Elsie still has a VERY short attention span.  She’s constantly in motion.  She hates to be constrained and loves to run and climb and be swung.  How we are going to keep her somewhat content in a hospital room for days is beyond me.  

Please pray for our family during that week.  Please pray that the doctors will get some answers from this testing and know the best form of treatment for Elsie.  And pray too that the seizures would end and we would not have to deal with this for months and years to come. 

Emma's Fourth Birthday

We started the celebrations with a special date with Mommy and Daddy to Disney to watch the light parade.  (We are blessed with season passes this year as a special perk of the internship.  What fun!)

Presents awaited her when she woke up!

And the next day we had a Candyland birthday party!

Emma, we love you so much!  We stand in awe of the way God has made you and everyday we thank Him that He blessed us with you.  You are learning and growing and changing so fast.  You are silly and smart and spunky.  You bring us so much joy.