We Finally Have Answers

Poor little monkey girl...she was SO good considering she was connected every which way and couldn't roll or get out of bed (I think the whole bed incident the night before scared her straight!).

Sleeping was a challenge for her - she LOVES to roll around in her bed to find just her right spot - and she typically sleeps on her stomach with her butt up in the air - clearly she couldn't do that.  She would get really frustrated when she wanted to sleep and had to stay in the same spot.

Keeping her entertained proved to be a fun task, but she had her faithful little car that she loves and that kept her happy for a while.

And unfortunately for them, but good for us, our best friends the Woodrums were in the room right next to us with their daughter Jenna.

On Wednesday the doctors took Alex off all of her seizure meds to see if there would be any changes to her brain activity and to try and bring seizures on.  At 4:58AM on Thursday morning Alex had a seizure - a bad one....she lets out this funny noise when one is about to happen so I jumped out of my bed and the nurses got to her bed the same time I did....after everything was all said and done I asked them how did they get in her room so fast and they said they were sitting at the desk watching the monitors and saw Alex's monitor just explode with colors and knew she was having a seizure (I now forgive them for the bed incident!).  Kind of strange to say but I am so happy and relieved that they saw what I have been seeing and dealing with for months.  There words were...."boy, that was a doozey"...Everything with Alex is never black and white....we think  she may have Angelman Syndrome.....we think she may have reflux....we think she may have a seizure disorder, we think.....

I don't want people to think...this is my world... I want you to KNOW.   The doctor came in on Thursday morning and said that Alex's brain waves showed "MARKED" changes while she was not on her medicine.  Her brain waves surged and spiked and it was clear that she has a seizure disorder.  They have OFFICIALLY diagnosed her with Generalized Tonic Clonic seizures (aka Grand Mals).  Of course I do not want her to have any type of seizures, but to FINALLY say that we have some sort of diagnosis, a real and tangible diagnosis is very comforting in a strange and crazy way.  I have hated that she has been on the seizure medicine because of the effects it can have on her liver, but to have the study show how her brain was functioning with the medicine, AND without it brings me so much peace of mind.  

So we have our answer.  We've changed the doses and schedules of her medication and we have an emergency medication on hand in case we need it...again, more comfort.   Nothing left to do or say except unhook my girl and let's go home!!

How many people does it take to 28 leads off of one small child's head?!?

Alex doesn't care, she is just happy to FREE and out of that BED!!!

And Mommy (a very tired, un-showered Mommy)  has the room all packed and THRILLED to be heading home!!

And Alex and Daddy are having a few kissing moments!  Clearly everyone is happy to be going home!

But, ummm, one small glitch.....apparently the wrap on her head to protect the leads was just a little to tight, and they left perfect indents on her head...

And her poor skin just did not tolerate the leads very well.  She had EKG monitors for heart on as well and her chest is one big ugly rash.

But let's deal with that later,...let's get this car moving!!! 

We got her home and put her straight in the shower...I'm pretty sure we will be removing glue and goop from her hair for the next six months :)

She was so happy to be in her own house and in her own bed!  Once she was showered though it was even more evident of how much her poor head must have been killing her...again the joys of her being non-verbal  :( 

Oh...one more thing...when we went to Christmas Town two weeks ago, Alex LOVED the snowflakes hanging from all of the trees...she was constantly looking up at them mesmerized.  So while we were at the hospital her Papa and MeMe came over (thank you MeMe for all of the laundry and ironing you did!!) and Papa hung all of these snowflakes above her bed!!!!!

I will say the first thing she did when she got in her bed was to make sure her Justin Beiber poster was still there, but once she saw the snowflakes, she was equally excited!!!

I am so happy to have my girl home safe and sound.  And I am so, so, so very thankful for all the people who support us and are here for us exactly when we need them.