B.E.A.C.H

We had such a fun weekend!

A big group of friends went to the lake for
the afternoon Sunday.
We packed lunch, toys, and rafts!
The kids had a blast and so did the moms!!

Then to top it off I got a food processor...
Who would have thought that me of all
people would be so excited about this
but after borrowing my neighbors
while Sarah and I made our jam I decided
it is a household must.
Thanks dad;)

:Update:

We had our appointment today up at Primary's.

The doctor was great and apologised a million

times for the space ship costume confusion

during the traumatic EEG.

He said he laughed when he read over the chart

and the first thing that came to mind was that

scene in ET;)

The good news: EEG results were in and normal!!

The bad news: They are still not ruling out seizures

as the cause of everything.

The treatment plan for now is to watch Rylee closely over the

next 4 weeks and see how many times a day she has

"episodes" including the newest... zoning out.

Along with her eye twitch I have been noticing

that Rylee will go into a daze a couple times a day.

Today for instance she did it after a shower. It took

me 3 times of saying her name and asking her what

she was looking at for her to even acknowledge me.

All this time I have thought she was just ignoring

until I paid closer attention. So...I have gotten mad at her

and told her to LISTEN and PAY ATTENTION.

Might not be the poor kids fault!

I'm such a mean mom

She also did this in the dr office.

He wants me to write down and take notes of how often

and the duration of each time she does this.

In 4 weeks depending on what I find we will

do another EEG and an MRI:(

The doctor feels bad for putting her through it all again

but these types of seizures are hard to diagnose.

He said if those results come back negative as well

that he would consider putting Rylee on a

trial run with seizure medication and see if it helps.

Thanks for all your concerns, thoughts, and prayers

coming our way.

I'm just happy Ry gets a 4 week break from

doctors invading her personal space!

Good little patient

They said they wanted
sleep deprived.
So...
this is what they got;)

It was an early morning for us.
We arrived to Primary Children's Hospital
and went to desk B.
This is where EEG and sleep tests are done.
We checked in and sat down.
After 3 minutes of waiting it was our turn to head back.
These two girls dressed in gowns, gloves, hats, and MASKS
Came to get us.
I was asking myself...
"is all this gear really necessary?"
They walked us back to a little room.
By this point Rylee was terrified.
Why were these girls dressed so strange
and what were they going to do?
Once we got into the room they asked what
contagious illness Rylee has.
I said "I didn't know she was sick?"
Were they aware of something I was not?
Then they stated
"Rylee has MRSA correct?"
HAHAHAHHA
Yes in April of 2009 Rylee had MRSA.
Apparently once you have had MRSA you are
flagged for life as contagious.
WoW...
We were off to a GREAT start!
Rylee was terrified.
Throwing a fit the size of China.
She had to be swaddled in a blanket so tight
she wasn't able to move then I basically had to
sit on her.
After they got all the Cords pasted in all over her
head and wrapped with gauze the nurses left the
room. Rylee finally calmed down and laid still on her bed.
The first test was 40 minutes then
another test which used a strobe light was for
5 minutes.

After she realized NONE of this hurt
at all she was okay with people touching her.
Rylee is so brave;)
We have our next appointment at
Primary's on Friday at 1:00.
They are sure on top of things.
I will be sure to keep you posted.
Thanks for your thoughts and prayers.
They are helping!
I noticed that Rylee had 2 "episodes"
today during her EEG which was a huge
blessing. Hopefully this will show the doctors what
going on inside this cute girls head!

Sleep deprived sugar free EEG...

Just wanted to update on Rylee's neurologist appointment this past Friday. It ended up being 3 1/2 hours during which we met with 2 different doctors. The second doctor was the Optha-Neurologist. She did a few different tests and we talked a lot about Rylee's "episodes." A few weeks ago I video recorded 5 minutes worth of her eye spasms. The recording ended up being very helpful in trying to figure out our next step. While replaying the video about 10 times she realized every time her eye started to twitch her mouth, face, etc... would stop moving. Even though this only lasted a second or two at a time it was also very noticeable once she pointed it out. Without video she wouldn't have been able to "witness" the problem. That's now appointments like this work... it NEVER happens while in the doctor office;) She did say that she feel confident to mention that this has nothing to do with Rylee's eye, even stating that her eyes are very healthy. She also never mentioned anything about a tumor! GOOD GOOD GOOD! The doctor we met with is referring us to a pediatric neurologist at Primary Children's Hospital. We are on the fast track list which is a fast moving list kids go on when they are suspected to be having brain seizures. They like to get a diagnosis figured out quickly for these kids. Rylee will be having an EEG done on her brain Wed and hopefully we will meet our new neurologist Friday. She also thinks this could be the reason why is having such a hard time getting her speech down. I will let you know how all of this goes. They called today to remind me that Rylee needs to be sleep deprived on Wed morning. This means going to bed at least 2 hours late and wake up 2 hours early. Should be interesting... Ry needs/loves her beauty rest!

Rylee is home!!

Ry came home late last night!
Its so nice to have her back!!!
Today she really wanted the neighbor
girls to come play outside.

Brooklyn, Paisley, Capri, Sofie, and Rylee
popcicles...swings...giggles

The girls were swinging
so high they said they could see
*DISNEY WORLD*

Next Josh and Sarah came over for lunch
and a jeep ride;)
These two kids sure love each other!

Rylee's Neurologist appointment is
in the morning... wish us luck!

Betty and Martha

Lots and lots of strawberry jam
Tons and tons of sister fun

D.E.L.I.C.I.O.U.S.

Lemon Drops and Gum Drops

Today was Rylee's end of the year
pre-school performance!
It was so fun to watch a bunch
of 4 year olds sing songs
they have practiced over the past few months!

Rylee had so much fun coming home
from school showing off her singing skills.
She LOVES to practice singing.
She especially loves to practice in the bathroom;)
Who doesn't like to sing in the bathroom?
It's the most perfect singing place in the house.
One night she convinced Grandpa and Granny to
follow her into the bathroom so they could hear
one of her favorite songs.
Grandpa sat on the pot and granny got front row
on the floor. Rylee sat in the sink and preformed
a solo!

All of that practicing sure paid off!
~Rylee was the star of the show~
My favorite song they sang was
"If all the rain drops were
lemon drops and gum drops
ohhh what a rain it would be"
The kids all wore umbrella hats!
DARLING

It was the highlight of my week
getting to watch my brave little lady
sing on stage in front of a full audience!
The Draper theater was packed!
Way to go Rylee!
I love you SO much!