I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Wednesday, January 30, 2013

EMU Visit

Back at the EMU - this is our third visit here for Alex's seizure monitoring.  We got here Monday morning, but there were three of us getting admitted at the same time so we had to wait a while to get her hooked up. 

She was good for a little bit....

Then she started getting really bored.  So we played with the I-Pad for a little while but then that got boring too.

So then we decided to walk the hallways. 

But there was only so far we could go so back to the room we went.  Late afternoon and we finally started to get hooked up.  I let Daddy be the bad guy this time and he got to be the one to hold her down.  She was NOT happy about it either.  I don't know if it's because she's been here before, or if she's getting older, but she clearly made it known she was very upset.  We kept telling her no ouchies, but it didn't make a difference.  She was being held down and that never means anything good.  I wish so bad I could know if she understands what I'm telling her. The glue they use to keep the leads in place is so strong - so that could have been part of it too - the fumes bothered my eyes and we had a major contact high by the time she was all done.

By the time we were all done she was screaming and crying.

It took quite a while to get a smile back out of her.

And then she got revenge...less than 30 minutes after being all hooked up, she took her head dressing off.

By the time we got her in her chair for dinner it was completely gone.

And she wasn't a happy camper - and she stayed grumpy the rest of the day.
Day 2 started out pretty good - she was happy for a bit.

Mmmmm....notice anything missing in this picture?

Yep, head wrap missing again and she pulled leads out at the same time, which remember are glued in, so she takes nice chunks of hair out too.  One of the problems is that when Alex is super excited, or really frustrated, she pulls her hair.  For the last couple of days it's been like wrestling an octopus trying to keep her hands away from her head. 
Picture from this afternoon....again, notice anything missing?!?

Tonight she pulled out 10 leads.  The techs have been in here 5 different times to re-hook her leads.  I'm tired of fighting her :)

Speaking of tired, they changed the beds in this unit to the same beds they have in the ICU so that the rails are lower in case of emergencies.  Which is great....for them.  Not so great for me.  We pushed the bed to the wall so we only have to worry about the one side.  The rails are so low that she can flip right out of the bed - so she has to be watched 24/7.  I have to call a nurse to come in just so that I can go to the bathroom!

And this is what I'm 'sleeping' in...

We are on day 3 and she hasn't had any seizures since we've been here.  I can't tell you how FRUSTRATING this is to me!  The doctors laugh and say they have magical air in here - they see it happen all the time.  But that doesn't really make me feel any better.  I know it's only day 3 but it's exhausting being here.  She can't go but from the bed to her chair and she's over everything I brought to keep her entertained - she can't play independently so I'll admit I'm bored with everything too - and {Insert whine here :)...} I'm bored of these four walls.  I miss my boys, I miss the dog, I miss my routine, I want us both to sleep in our own beds! BUT I do NOT want to go home without any answers either.  Frustrating, frustrating, frustrating.
I totally wish I knew how to read these! 

The highlights of the nights are the visits from Aaron and Zach.  Zach loves on Alex for a few minutes and then he and I leave and go outside for a walk and talk and then go play in the day room while Aaron gets some time with Alex. 
A big thank you to my parents for taking care of things at home for me and for taking care of Zach till Aaron gets home.  Today they came down for lunch so I could shower.  Everyone has to adjust their schedules when stuff like this comes up so I'm very thankful everyone is so flexible and supportive. 
She's sleeping pretty soundly now.  A lot of her seizures seem to be driven by the barometric pressure - with the crazy storms moving in tonight we are all praying that triggers seizures for her.  Sounds crazy to pray for seizures since we're usually praying for the opposite!
Here's to hoping I have good news tomorrow!

Monday, January 28, 2013

Going Crazy!

I started this post last week, but couldn't get around to finishing it!

So apparently we had a leak under our dishwasher.  And apparently it had been going on for quite sometime.  At first I felt like we were at the end of the movie ET with the big plastic wrap quarantining the area in the kitchen.  It had two really loud dryers that after day 2 was on my nerves.  But Alex and mold DON'T mix so we had to do what we had to do. 

Then we learned the whole floor was going to have to be ripped up.  Suddenly the loud noise didn't seem like a big deal!  So everything had to be removed from all of the cabinets.

So my dining room looks like this...


...and my living room looks like this....
Alex apparently likes living in chaos :)

My garage like this...
And my kitchen now looks like this!

Obviously I can't cook - so we either have to go out to eat or order in.  And since Alex goes to bed so early, we've mostly been ordering in - which has mortified me every time a delivery person comes to the door - I know they're thinking we should be on the next episode of Hoarders....I can hear them now..."dude, these people had stuff piled everywhere - and they had a refrigerator in their living room!"  Honestly, I feel like I'm on an episode of Hoarders!  And if you know Aaron, you KNOW how much this is driving him insane! 

We're all so out of sorts - even the dog is confused - I hate it - I don't like chaos!  And I had about 2 days to prep enough food for Alex for 7-10 days.  It's no problem for us to have to eat out - but it's not like I can drive thru Taco Bell and give her some nachos or something!  It's not easy blending 27 meals in two days - trust me!!! 

I'm so ready for everything to be back in its place...it's truly driving me crazy!! :)

We checked into the hospital today for Alex's seizure monitoring.  It's been a long day so more to come tomorrow.

Tuesday, January 15, 2013

Seizure Alarm

For 5 months I have waited for this little box!  5 MONTHS!

But boy oh boy am I happy!!!  This is Alex's new MedPage MP5 seizure alarm system!!

This is the sensor that goes underneath her mattress and connects to the piece above with the knobs. The knobs allow you to select the levels of sensitivity for movement and noise.  There are 2 separate pagers so we can keep one in our bedroom and the other downstairs.  There are three settings for the alarm which is nice too. 

We put the sensor in between her mattress and had Zach lay in her bed and simulate her convulsions in all different areas of her bed.  It works SO great.  I don't want to say it was worth the wait because I'm not that happy about how long it took to get to us, but definitely happy with the product.   

You can see the cord coming out of her bed here and it sits on the chest just outside her bed.

Unfortunately we got to see just how well it works all weekend.  This morning she had three seizures so the first alarm was 4:15AM, then 5:00AM then again at 5:30AM - I'm SO thankful to finally have this for more peace of mind, but it definitely is not a fun sound to wake up to.

We are scheduled to go in the hospital on January 28th back to the EMU (Epilepsy Monitoring Unit) for a few days.  Her seizures are becoming far more frequent and her medicine combinations are not working at this point.   There are several new things she's doing now when she is awake that we are questioning if they are seizures.  At this point, my thinking is that they will change her medications while we are there too since her levels aren't keeping her maintained and the increase of what she is currently on isn't an option based on the reactions she had over Christmas.  It sounds odd to say I'm looking forward to being in the hospital, but I think I am really relieved to be going because there are so many questions that need to be answered.

Thursday, January 10, 2013

Meet Rudy!

For multiple reasons we had to give our dog up in June.  Ever since she left, Zach has talked about her, asked about her, asked to visit her, etc.  With the holidays approaching all Zach wanted was a puppy.  Every list to Santa said "Puppy....please, please, please, please, please".  One of the biggest reasons we had to give the dog up was she was already two years old when we got her and we just couldn't break her of the potty accidents in the house so we had to keep her confined to our downstairs - which meant lots of baby gates.  Twice our nurse fell over the gates WHILE holding Alex.  Another reason was Alex would throw all of her toys on the floor, and she was very skittish - she would literally shake and find any spot she could to hide and I always felt bad for her from that standpoint - it is NOT quiet in our house, for sure!!
Anyway - every time I would see one of Zach's list I would bring the subject up to Aaron (who, for the record, has always been ADAMANT that he doesn't want pets) he would say no, bring up all of the reasons why a dog was not conducive to our life  and move on to the next subject.  I would argue my points until he would get annoyed and tell me end of subject.  I can't begin to tell you how many conversations like that we had.  The last conversation we had I was going on and on the reasons why he should consider it, what it would mean to Zach - how much I would like to have a dog as well, how much we all missed having a dog in the house, etc., etc. - I was relentless (as usual) and he finally got stern and said the discussion was over and he didn't want to talk about it anymore.  And he was serious too!  We have Elfie at our house during the holidays - the Elf On The Shelf - and he always reports to Santa each night and tells him what Zach's been up to.  One night I heard him talking to Elfie and mentioning a puppy.  When Santa's letter from the North Pole arrived a few weeks before Christmas, it said that he knew how much Zach wanted a puppy, but unless Elfie gave him the okay from his dad, there really wasn't much he could do about it.  All of the puppy conversations ended with Aaron saying he didn't want it brought up anymore. 

Fast forward to Christmas Eve - Santa made an early delivery.  I never in my wildest imagination thought Aaron would tell Elfie it was OK so needless to say I was BEYOND shocked when Santa delivered this adorable bundle of fur!!!
Zach was upstairs in his room with his friend and didn't hear Santa ring the door bell - so we brought his Christmas present up to his room...
His face was PRICELESS....he actually dropped what he was playing with and was in shock :)
He asked multiple times if it was his and if Aaron was going to let him keep him!!!
So meet our new Lhasa Apso, RUDY!!! (Short for Rudolph since he and Santa delivered him!)
I think my husband is pretty awesome for putting his feelings aside to make me and Zach happy. He's really an amazing dad and husband - but I've already said that in other posts :)
Christmas morning he sat with Alex - who really isn't a big fan right now because he jumps on her and puppy nips her...she does like when he whines or barks though :)

And Zach and I were VERY happy!!!

By the end of Christmas night he was exhausted from all of the excitement and meeting everyone - he is SUCH a social dog....LOVES people and gets super excited when he sees anyone.
I'm surprised he remembers how to walk because someone is always holding him! 
Here he is on New Year's Eve:

He's such a nice addition!!!!  He's a puppy, so he's a lot of work, but for the most part he's a good dog.  He's already learned to sit and stay - and his potty training is going as good as to be expected for a 12 week old. He had his first grooming yesterday so I'll have to post more pictures of him soon. 
Oh, and remember Aaron, the guy who didn't want a dog....the guy who now brings the dog up to our bed?!?


A few more pictures just because I think he's so darn cute!! 




Tuesday, January 8, 2013

Merry Christmas!

A little late, but I hope everyone had a very Merry Christmas!  We enjoyed lots of family time and that's one of the things I love most about this time of year.  We hosted Christmas Eve dinner at our house and exchanged some presents.

Zach was quite happy to go first!

More stuff to be just like Daddy - thanks Uncle Danny and Aunt Rebecca!

His expressions crack me up - we are VERY into football right now so receiving a box of football cards with all the 2012 NFL players was extremely exciting - Thanks Aunt Dana and Uncle Shane!

And the camera he had been dying for...thank you MeMe and Papa!
Here are a few pictures of Alex with her brother and cousins...you can see in these pictures how dazed she was - and also the movements she was constantly doing with her mouth.

I'm happy to report since coming down from the increased dose in her medicine that we have our happy girl back.
 My niece Abby

My niece Emily




My sister-in-law Rebecca

My brother Danny

My B-F-F Dana

My sister Dana
My brother-in-law Shane

Me and Emily

Uncle Danny being silly

Sibling Love!


Trying to keep Alex happy :(

I love spending so much time with the family, and I know the kids love it too.

Christmas Day Santa was very good to the kids.  We had a nice morning at home and then headed to my sister's house for dinner - but I really don't have pictures because like I said in my last post, it was a bad day for Alex and our afternoon was cut short.

Every year Zach helps Alex open her presents before he will open any of his.  He's so good to her.

Finally, some sort of  a smile!


Trying to get her to engage in opening her presents.
And the crying begins!

For the most part, this is how she spent the time at my sisters.

This is the one shot of her that Aaron got that I love.

My mom has so many pictures from both days - I'm hoping to grab her  memory card at some point!

I hope you all had a very Merry Christmas and a very Happy New Year. 

More to come on Zach's favorite gift.... :)