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.

Friday, December 30, 2011

Poor Girl!

I knew something was brewing when Alex was so sleepy on Christmas day.  On Monday she was really tired and on Tuesday she started coughing a really wet cough and was running a 103.5 temperature.  We took her to the doctor on Wednesday and they ran a strep test which was negative and just said she caught something viral.  She's been so pitiful the last few days and it was quite concerning to me that she's been sleeping almost 19 hours a day, but I guess her body needs it.  Even on Motrin and Tylenol she was still running a 101 temp and she has refused to eat anything by mouth...one HUGE benefit to having a feeding tube!  She's been on breathing treatments around the clock since Wednesday and I think things are starting to break up.  We had to pull her old suction machine and oxygen tank out and it's been a loooooooong time since we've needed any of that, which was a really great reminder of just how far she's come.  It's actually been so long that I didn't have all of the supplies I needed so I had to call my friend Christy and asked her to 'borrow' some suction tubing - one of the many great benefits of having friends with special needs kids! :)

My other concern was that I had called her neurologist yesterday to get the results of her blood levels from her draw last week since she's now on higher doses of her seizure meds.  The normal blood range for her medicine is between 50-100.  We took her for her blood draw right before her afternoon dose so that she would be at her trough level (the lowest level that a medicine is present in the body).  I was pretty alarmed when they told me that her levels were 117.  I started panicking that if that was the lowest level in her body that meant when she was at her peak, the numbers were obviously going to be much higher.  I started googleing toxic effects of the medicine because of the way it metabolizes through the liver and the number one thing was being lethargic.  So is she lethargic because she's sick, or because she's toxic?!?  Ughh!  Her neurologist called me last night and assured me it was fine that her levels were higher than the 'standard', especially since the medicine is obviously working because she hasn't had a seizure since we've increased her medicine (KNOCK ON WOOD!!).  He said our first priority was to get her over her illness and then for me to call him if she still seemed lethargic or we had any other concerns - so I feel 'slightly' comforted that he wasn't alarmed about her numbers and the fact that she's seemed to have perked up as of this morning.  I'm praying she's turned the corner today so that we can enjoy the holiday weekend and start 2012 off on the right foot!

One more thing....(Of course I can't have one blog post without a picture :P)

Santa had brought Alex a really cool pink fuzzy chair for Christmas....it's such a comfortable chair (I want one!)...she loves the way it feels and likes to move her feet back and forth on when she's in it.  We took this picture of her Monday morning and I just love it - she looks so 'typical'.

Monday, December 26, 2011

Merry Christmas!!

What a great holiday we've had! 

One of the best gifts was having Aaron's parents John and Joan with us....we have been married 12 years and have never spent a Christmas together....

They were here for six days, and thanks to Zach getting the 24 hour stomach bug things did not go quite as planned, but I think it was still a great visit.  My mother in-law and I got to spend the day Christmas Eve making Italian Pizzelle cookies and my best friend Dana spent the evening with us too.

We had a FABULOUS 'Italian Style Fish Feast' with my parents on Christmas Eve and my sister and her husband Shane had an AMAZING feast on Christmas day.  Allie Bean has come down with a pretty nasty head cold was NOT feeling so great so unfortunately we had to cut our visit shorter than we would have liked, but it was a great Christmas day.  And thanks to Allie Bean's Uncle Danny for letting her spend the whole afternoon on his lap :)

Once again Santa was very good to the kids.  Zach has been DYING for an X-Box 360 and Santa delivered.  He also got the coolest gift from our Aunt Helen who saw how much he enjoyed seeing the Wicked play last month....an autographed and framed Wicked poster AND an autographed copy of the book...something he will definitely appreciate in the years to come.  Alex got tons of great gifts, and I'm happy to say, just like her birthday, pretty much all age appropriate....oh, the simple things in life!! :)

Aaron and I were truly blessed to be surrounded by all of our family and SO much love this Christmas.  It was a wonderful, wonderful Christmas.

I hope each and everyone had as magical of a time as we did.  Merry Christmas!!!!!

Friday, December 23, 2011

Some Zach Stuff

Haven't really posted much about Zach with all of Alex's issues so I wanted to post a few quick pictures. 

Right before Alex went in the hospital we went to Macy's so he could mail his letter to Santa....I think it's obvious from the look on his face this will probably be the last picture like this that I get! :)

And I mentioned in one of my last posts that he insisted on sleeping with Alex the night before she went in the hospital.  I love this picture.

He had his very first school play and thankfully we had gotten home from the hospital that day in time for both me and Aaron to be there, and my parents.  They did the play "Really Rosie" and there's an alphabet song in it...he was letter F...

With all of his lung capacity issues right now the doctor has pretty much banned him from sports, which he was pretty bummed about.  He had asked a few times to learn how to play the piano so we started piano lessons with him at the end of September.  I'm proud of how well he's doing!

Here's a little Christmas Cheer from Zach to you :)

Friday, December 16, 2011

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.

Wednesday, December 14, 2011


Since September Alex's neurologist has been saying he's going to get Alex into the Epilepsy Monitoring Unit at MCV to see what's actually going on with the episodes that she's been having.  I honestly believe she has some kind of apnea because the seizures only happen when she's falling asleep or lately when she's in a deep sleep. Without going into too much detail, we FINALLY were scheduled and we got here yesterday morning. 

She was checking out the view from her room...top floor of the hospital so I keep teasing her about her penthouse suite:

Hooking her up to everything has GOT to be the worst part.  She has to stay very still with her head in the direction they're working on AND you have to keep her hands held down so she doesn't start pulling all of the leads off - it is not an easy task.  My back was not happy after an hour and a half of this position:

She was not a fan of it either, but all things considering she was so good.

I think she forgave me once she was done and her head was wrapped up.

Clearly she was much happier to be with Tabitha.

Zach and Aaron came for dinner and Alex was so happy to see them - and Zach wanted to be in bed with her (the night before we came in he insisted on sleeping with her).
 He's always very loving to her, but he's been even more so the last couple of days.  His kiss goodnight...

We barely got any sleep - one of the top 5 things I hate most about hospitals.  At one point we both fell asleep and I woke up to her making a bunch of noises.  It was dark in the room but when I got out of my bed I couldn't see her...then I saw why...despite lots of padding on the bed, she managed to squeeze herself out of the bed in between the two bed rails.  The only part of her that was still on the bed was her head.  I had to buzz for the nurse because she was so wedged I couldn't release the bed rail or lift her back on the bed.  The room is equipped with two huge cameras that follow your every move.  The nurses station is supposed to be manned at all times but they clearly didn't see her so I have no clue how long she had been like that.  There went any sleep I might have thought about getting!  I'm just very thankful she didn't completely fall out onto the floor. 

Of course, she didn't have any episodes last night.  Today they are going to stop her seizure medicines to see what her scans look like without the medicine and to see if they can catch one of her episodes.  The bad part about that is that they have to hook her up to an IV in case she needs emergency meds.  She is NOT a good stick and she often pulls her IV's out so I am really not looking forward to that. 

Monday, December 12, 2011


I have to share our Santa experience yesterday.  Aaron had to work all day yesterday and Alex was going stir crazy (lots going on with her and I promise to post about that soon) so I loaded the kids up and we headed to the mall.  Zach wanted to see Santa and since I'm guessing this will be one of the last years he wants to, I was all for it.  So we get to where Santa is and there's a bunch of people in line but I can't tell how you actually GET in line...(insert joke here...), so I walked all around the Santa area only to come to the line to find they've blocked it off because Santa was done for the day.  Bummer.  We started to walk away and Santa's elf came running up behind us and said that Santa wanted to meet Alex!  They took us straight to him and Santa (who was not very young I might add!) got off his chair and bent down on his knees to talk to Alex.  It was probably one of the most touching things I've seen in quite a while.  Alex just kept staring at him with her mouth WIDE open (kind of how she looks at Papa) like "what in the world....!"  And then...she grabbed a hold of his beard and pulled with all of her might!! Yikes - SORRY SANTA!!!  He spent a few minutes talking with her and Zach and he was so incredibly kind.  When we were done, they handed us this picture and said Santa wanted her to have it - free of charge.

Zach and I often talk about "heart happy" moments and this was definitely one of them.  When we were walking away Zach said, "Mommy, I'm starting to think that was actually the REAL Santa Clause".  I just smiled because I couldn't have agreed more. 

Friday, December 9, 2011

Christmas Town!

On Saturday we had a family trip to Busch Gardens for Christmas Town.  I had never been before and I wasn't sure what to expect, but I will say I was highly impressed.  The way they decorate the park is absolutely beautiful.

Zach and Micah

My sister, me and my mom

My sister and my nieces Emily and Abby

 Shane, Dana and the girls
Tabitha and Micah
Aaron and Zach being silly

Ok, I know this is not a good picture of Alex - but I am allllllllways saying how her Papa is her favorite man....

I mean seriously?!?  I'm sure her neck hurt by the time we got home....she just can't take her eyes off him!

I was trying to get a picture of her with some of the lights...she looks scary though :)

Aaron and Me

Alex and Tabitha
Me and my cold girl!

There was one part of the night where I got a little upset.  Some of the rides were open so we went and got Alex a bracelet that would let her go to the front of the line.  They asked if she could grasp things (yes, she can) and they asked if she "just" couldn't walk or if she had neurological issues as well and then they printed out a piece of paper and we went on our merry way.  Last year we took Alex to a Fair and she went on a ride called the Sizzler that she LOVED...this is the link to that post...anyway - they had a ride very similar to that one that was open - we were waiting for everyone to get off a different ride so I told Alex that as soon as everyone was done we would take her on that ride...and I was so excited for her.  We got to the gate and they asked for that piece of paper I got and it wasn't until then that I realized they had printed what rides they THOUGHT she could go on.  And of course, that ride wasn't one of them....so we took her over to the little kid rides and they wouldn't let her on any of those either - I should add here that they WOULD have let her ride the ride that brings you straight up and then drops you 300 feet.  Yeah, good choice.   I know the people were just doing their jobs but it bugged me so bad.  I'm her mother, I know what her capabilities are and THEY were deciding what she could and couldn't go on and it made me mad...and sad.  So I pouted for a while, but Alex was having such a good time watching all of the lights and everything else going on that I got over it.  She was happy and that's all that mattered.

We got home close to 10PM and her bedtime is typically 7PM so I'm not sure if she was over tired or over stimulated from the entire day or what but she had a seizure around 10:30 and then again at 4AM  (a post about that coming soon)....crappy way to end a really great family day.  

Friday, December 2, 2011

Happy Thanksgiving

Ok so I'm a little late...but I hope everyone had a wonderful Thanksgiving!  We hosted this year, and unfortunately I was not feeling good at all (I have since shared the love with my sister and my dad - sorry guys!) but it was a nice family day nonetheless.

My dad and brother-in-law cutting one of the two turkeys we had

My mom and my mother-in-law Beverly who was in town for the week

My brother, niece, dad and Zach

Thanksgiving day also happened to be my dad's birthday so we celebrated him as well.

Ok, so he had a birthday pie...but he's not a sweets person and this is his favorite pie!

Happy Birthday Dad!!
Sorry to the rest of the family that I did not get pictures of...I'll blame it on the sickness :)

Saturday we had a party to celebrate Alex's birthday. 

I was going to have a Justin Beiber party for her, but we opted for Pinkalicious!

The birthday girl with her favorite man...

Mom and Bev toasting the birthday girl :)

My sister and my niece Abby

Cake time!!!

Bean and Tabitha

Loving her attention from Jennifer!

And her Auntie Dearest!

Then it was present time...this picture makes me laugh, don't know why.

Thank you Aunt Dana for my Justin Beiber poster!!!

Best pedicure set ever from our friends Scott and Leslie!

It was all way too much....she was so exhausted by the time we were doing presents all she wanted to do was go to bed...being 10 is exhausting :)

We have amazing family and friends and we are so thankful for everyone.  We are so lucky to have Alex, because without her we would not have half of the amazing people we have in our lives!

Me and Miss Jennifer

Christy and Harlie

 Some of the boys!

My B.F.F!

 Dana and Mesa

Our best friends the Woodrums!
One of the best parts of her birthday???  For the first time, EVER, she got all age appropriate gifts!!!!  Great day with great people!