Another EMU Stay

Last week we had another visit to the Epilepsy Monitoring Unit.  This stay was 5 days, our longest so far (and hopefully ever!).  The main goal of the stay was to successfully get Alex off the Valproic Acid she has been on for years as it was beginning to elevate her liver enzymes.  Her seizures had amped up the last few weeks and she has also been having a lot of episodes at night that have her waking up screaming - almost like night terrors.  We are still on seizure meds but she came off the Valproic beautifully.  We were also able to capture the night terrors which are basically seizures building up and intensifying but before they peak, she senses it and wakes up screaming which actually prevents her from seizing.  Most people who have seizures get an "aura" like a certain taste or smell before the seize, the night terrors are Alex's aura.  The brain is a crazy thing!

 

I love this picture of Alex and Aaron - she has so much love and complete trust for him.  He's such a hands on Dad and it's times like this that he can keep her comforted and calm that truly make me fall in love with him all over again.

 

I will say keeping her head wrapped like this for 5 days was no easy task.

Actually, it was more like nailing jello to a tree - and she thought it was super funny too!

 

At one point they put a hat like this on her head.

 

 

I said she looked like a Smurf, my mom said she looked like a Hershey Kiss...I put it on Facebook and we got some other good ones too...warrior princess, cup cake frosting, Dairy Queen vanilla cone and a Tibetan Monk :)

 

 

Yeah, that one didn't last more than an hour. At least Daddy had some fun with it :)

 

 

Alex has been on the Valproic Acid for more than 10 years and I really do feel like she is more focused off this medicine.  For the first time ever she was completely engaged with her I-pad for more than 2 hours watching PBS cartoons.

 

 

I am so thankful for all of my friends - and even those that I don't know who pitched in last week and really supported us.  While it wasn't a major surgery it was a stressful time and it sucked to be separated as a family.  Between the visits, calls, texts, food, and goody bags I was completely overwhelmed with everyone's generosity.  I wish I would have taken pictures of everyone who visited with us, and I'm sorry I didn't.  I did get a picture of the cool poster my friend Jennifer made to brighten up her room that people were signing ;)

 

Being silly with Ms. Kate

Loving all the attention from her brother...

Finally, I have to give a huge shout out and heartfelt thank you to my friend Lynda.  Lynda is the founder of the organization that Alex is a part of called We Hear Harlie and Friends.  Lynda's mission is to offset the financial strain of having a medically fragile child but she does so much more than that too, she spreads awareness, she spreads kindness and joy.  I didn't leave the hospital the whole time Alex was there and every time Lynda came to visit she had food, care packages and lots of big hugs for me. This has been a very trying and emotional time for us with her recent diagnosis, an oral surgery (which was the week before), this week long stay and a potential spinal surgery on the horizon.  To know you are truly cared and thought about during those times is priceless.  She is trying to make the world a better place a little bit at a time.  We all need a Lynda in our life! 

Lynda snuggling with Alex during one of her visits.

I am so thankful that Alex had such great spirits the whole time we were there - 5 days of me in her face with all of those leads glued on (and everyone messing with her to re-glue them a few times a day), laying in the same spot without seeing the light of day and she was still smiling.  I can tell you we were all very excited to get outside and head home.

I'll end with two of my favorite pictures from the week (like we were on vacation or something!)

 

 

Tomorrow's a really big day - we go get her new wheelchair in the morning and then we go for her back x-rays and find out if her curve has progressed and if surgery will be required.  Extra prayers are more than welcome!!!