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.

Sunday, March 29, 2015

Surgery Update

Tomorrow is one week since Alex's gland surgery.  Tomorrow is also one week since she has had to wear any bandannas!
The surgery took 3 hours.  The surgeon did an excision of  her submandibular glands and completely removed those glands and she also did a bilateral ligation of the parotid glands which was done inside her mouth and tied the glands off so they could no longer produce saliva.  Time seems to go extra slow when you're waiting for news and it really didn't help that at hour 2 she was the only one left in surgery, I wanted her to be yellow in the worst way!

When we were able to see her in recovery I was a little shocked at the incisions.  For some reason I had it in my head that they would be more under her chin, not on her neck and I didn't realize how large they would be - both incisions were about 3 inches long.

The rest of Monday was a bit rough for her.  I honestly think it was a result of the anesthesia and not necessarily the surgery itself.

 I say that because the next morning she was back to her happy, smiling self!!

She started to swell just a little bit, mostly on the left side of her face.  The glands that were tied off inside her mouth are going to still produce saliva until they atrophy and basically die off.  The glands swell with the saliva since there's no place for it to go resulting in swollen cheeks. 

Quite frankly I thought she looked pretty cute with a little "chunk" in her face and I've been calling her "munk" (short for chipmunk) all week :)

She was beyond happy to be home and resting in her own bed!

I am extremely pleased with her recovery.  If you asked me before she went in what my expectations were afterward, I wouldn't even have come close to how well she's done. 
Day 3, less swelling and enjoying some quality time with Daddy!

Day 4, even less swelling, she was able to eat a little something by mouth....and still smiling away!

This had made such a huge difference in her life - and mine!  There will be no more skin break down on her face, no more excessive acid build up on her teeth and she has not choked one time since last Monday!!  She has gone for so long not being able to manage her secretions so it's been so great seeing her swallow and staying dry :) :) :) :)
Thank you so much for everyone that prayed for Alex last week.  I appreciate them, the phone calls, texts and Facebook messages more than you know.  Thank you to my parents for holding down the fort with Zach and for bringing him to the hospital.  Also, a big thank you as well to our friends Kate and Bob for the delicious dinner from Zoe's kitchen they brought to the hospital - Alex loves her some Bob and it was seriously enough food to feed half the hospital :)
Yesterday we took Ms. sassy pants out for a hair cut.  Her hair always had to be put up to keep the drool out of it.  I joked that between no more bandannas and no more hair ties she was getting lighter by the minute :)
Alex is so happy to be heading back to school tomorrow to see her teacher and all of her friends and to ride the bus.  I'm so happy that her backpack is going to be so much lighter and I wont have to do laundry when she gets home!

Friday, March 20, 2015

Happy Alex Day!

Thanks to our fabulous Uncle Louie and our family in Niagara Falls, there was an amazing benefit for Alex in 2011.  The mayor was there and he gave Alex a key to the city and a proclamation that declared March 19th Alexandra Elizabeth Hayes Day.
Every March 19th we celebrate "Happy Alex Day"
This year we were lucky to have Grandma Joan and Papa John with us.  They have been travelling for the last three weeks to a few of the south east and western states and their plans initially did not have their route home travelling by us, but they changed their route and arrived on Wednesday.
Grandma Joan, Papa John, MeMe and Papa
Zach made her a special poster to help decorate...
I love his kind spirit so much and even though I KNOW he would like to have an additional day during the year for himself, he just smiles and goes along with everything.
There were balloons, and of course, a tiara.  No party is complete without a tiara :)
We had pizza and beautiful cupcakes that Papa John bought for her.

Life is good with cupcakes!

And Grandma Joan bought her beautiful flowers to celebrate her day.
With all the bad in the world and all of the extra "stuff" we always have to endure I always try to find reasons for celebration and my kids are always cause for celebration in my eyes.

No fair that Daddy always gets a bigger smile though :)

So Happy Alex Day sweet girl - I hope you feel and know just how very loved you are.  Every day. 

Wednesday, March 11, 2015

Another Stay at the EMU

 I swear sometimes I think our lives would make for some really good reality TV. 

Last week we all had the flu.  Alex and I definitely had it worse than the boys.  Today's actually day 10 for me and I'm still struggling a little with it.  So is Alex.  Alex started with a fever and some coughing last Saturday.  I started to feel bad Sunday night. Monday morning both Alex and I were clearly sick.  Aaron took the day off and got Alex to the doctor while I slept.  She was swabbed at the doctor and tested positive for the flu - type B.  Monday night my doctor called in Tamiflu for me.  We were both running fevers and we were both feeling miserable.  I spent all of Tuesday, Wednesday, Thursday and Friday morning in bed.  Tuesday Aaron started coughing and feeling a little achy so he stopped by his doctors office and got Tamiflu too.  Wednesday he was already feeling better.  Wednesday night Zach started with the nasty cough and Thursday morning he had a fever.   Lucky for Zach and the perfect attendance award he's working towards this year, we got some snow and ice so school was closed Thursday and Friday!

On Friday Alex was admitted into the Epilepsy Monitoring Unit (EMU) for an overnight EEG to see how her brain functions were in addition to checking out what was going on with her seizures.  Zach started throwing up Friday morning and when Aaron was getting ready to leave with Alex, my van was dead.  So on top of dealing with everything else, Aaron had to have the battery in the van replaced before heading to the hospital.  Fun times.  :)

Sweet girl waiting for her room.

I was still sick and there was no way I could spend the night in the hospital with Alex sleeping in a chair.  I know Aaron is completely capable of taking care of her, but I have never not been with her during a hospital stay and not being there was completely stressing me out.  I barely slept Friday night between worrying about her and coughing so much so I was up at the crack of dawn on Saturday and at the hospital by 9.  When I got there the doctor had already rounded and decided he wanted Alex to stay an additional night.  I hadn't brought anything with me to stay, but I knew leaving that day was not an option for me!

I have to stop for just a minute and just say how incredibly thankful I am that Aaron is the hands on dad that he is.  He is just as involved in Alex's care as I am, he's an amazing dad and I can honestly say I count that as one of the biggest blessings in my life.  He was right by her side getting her leads glued on, reading to her, feeding her, changing her, entertaining her.  I don't give him enough credit.  Ever. 

My parents too.  I'd be lost without them and their support.  For sure. 

Sweet girl with the first of many 'crowns' she received!

I take for granted what an incredibly laid back, go with the flow kind of kid Zach is.  I guess he has not other choice growing up with a special needs sibling, but I often don't take into consideration what all of her therapy, appointments and hospital stays do to him.  He's constantly being dragged from one thing to the next and he does it with virtually zero complaining.  His only gripe this hospital stay is that he wanted to spend the night with her. 

Kissing sissy goodnight.

On Saturday Alex got a special visit from a sweet puppy named Jolly!

Alex has therapy dogs that come to visit her at school too and she LOVES when the dogs visit.  Zach said having a dog like this that visits hospitals is something he would like to do when he's old enough.  I think that would be an awesome volunteer project for him and something I may look into down the road. 
Happy to be out of bed and up in her chair - but definitely ready for a crown change!

The neurologist rounding this weekend was great.  I wish I could write what he observed in Alex's study as eloquently as he spoke it, but that's not going to happen!  In a nut shell he basically said that when Alex is in non dream sleep, there are spikes and sharps in her brain that are exploding every 12-13 seconds.  Those spikes and sharps fire off so rapidly that they build up to an epileptic occurrence and that  there is so much 'background noise' going on that she needed to have her night meds increased to try and quiet her brain.  He also said that a typical person, on average, will wake up approximately 5 times a night, but usually only for a minute or less, maybe changing positions, or glancing at the clock, but then falling right back to sleep.  He said that Alex wakes up A LOT during the night and that she is typically awake for 8-10 minutes at a time.   We were hoping to capture an actual seizure so the study could give some additional information, but of course, as usual, she behaves when she's in the EMU :)  He asked if we wanted to stay Sunday night as well, but there was no guarantee she would have a seizure and I knew she wanted to break out - as did I! And not a moment too soon - it was almost time for crown number 5!

She was beyond excited to have all of that mess off of her head - but holy hair!

 In the waiting room waiting for Daddy with the princess balloon that Zach brought her that was bigger than she was :)

And one happy girl to be in the car heading home!!

Other than the fact that we are still picking lots of glue out of her head, she is happy to be home, happy to be back at school and happy to be back in a routine!  It will be short lived though since she's having her gland surgery in two weeks.  Hopefully that will not be a very exciting episode, I mean chapter, I mean event :)