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, June 28, 2013

Nuerology Appointment

Last week we went for our neurology appointment.  You may recall from this post http://www.ourlifewithalex.blogspot.com/2013/03/neurology-update.html that I had a really hard time at her last neurology appointment so I emotionally  prepared myself for this appointment.  When the subject of her genetic testing came up (she saw the other doctors notes in her computer system) and I mentioned that I had to admit I was a little anxious to have the results back she said - you really shouldn't get your hopes up, chances of getting an answer are slim to none.  I have a lot of kids who are just like Alex that have no answers and the sad truth is that they probably never will.  Sigh.  I was very glad that I had prepared myself.  And maybe she says these things because she doesn't want people banking all of their emotional energy in one spot, especially people who are new to this kind of gig - I don't know.  I always jokingly say that Alex is the most not normal, normal kid I know.  All of her tests come back normal.  That's always my own little running joke.  So I just said that to her and let it roll right off my back.  Of course, somewhere in a tiny spot in the back of my mind that bugs me if I let myself think about it - but I have bigger fish to fry so I try not to.  It's not in my hands - never has been so I'm just waiting patiently and continue to pray that sometime in my lifetime I will have answers.  We are about a month out from getting the genetic results back - and I KNOW I shouldn't get my hopes up that this will give us an answer - but how can I not?  Almost 12 years of not knowing and that part just doesn't get any easier.
Ok, back to the appointment!  Alex has been doing relatively well with her seizures.  The week before school was out she had a few days that she seized at school - and there were two days that she had two back to back grand mals - but they were quick.  Like seconds.  So that's been an improvement in itself.  At that appointment back in March we had added a third seizure medicine called Zonagran.  Alex's blood work this month showed that her blood levels weren't in the therapeutic range so she's upped that dose.  I really HATE that she's on any seizure medicine, let alone THREE of them. And she's not on little doses either.  She gets 5 ml's of her Keppra and 5ml's of her Valproic Acid at 7:00AM - then she gets another 5 ml's of both of those at 2:30PM  then she gets 75 ml's of the Zonagran at 5:00PM and then she gets 7 ml's of the Valproic and another 5 ml's of the Keppra at 10:30PM.  To me, that's a lot.  And thank goodness I can set more than one alarm on my phone to remind me!  These meds can be tough on the body - they process through the liver and kidneys so it's really important to me that I space them out just right so that there's optimal time for her body to process everything.  Now on top of that, we are changing her night Zonagran dose to 100 ml's and this week we added 25 ml's of that to her morning dose and next week we will up that again to 50 ml's.  And the most annoying thing about the Zonagran is that it is not a liquid like the other two, so we have to break the capsules apart and dissolve it in water before we give it to her through her g-tube.  It's annoying.  If your hands are the slightest bit wet, which they usually are because I forget to prepare this one first and I've already prepared the other two and the water flush, the capsules start to dissolve in your hands and get all sticky and it makes breaking them apart harder.  And if you don't dump the capsules just right half of it ends up on the counter.  And if you put the powder from the capsules in first and then add the water the powder starts fizzing so it overflows the medicine cup.  Ugh, I'm getting annoyed just writing about it!  Anyway, in true Alex format, the night we upped the dose to 100 ml's, guess what happened?  She seized.  And the next day?  Yep, she seized.  And the day after that, ding ding ding....she seized.  Back to that last post in March - the night we added that medicine she seized five times in a two hour period.  Is that just her body adjusting to new meds and new doses?  Does anyone else think it's very strange that she seizes when you ADD anti-convulsants?  Oh wait - she's the most not normal, normal kid....that's right! :)
The Zonagran metabolizes through the kidneys - and the neurologist reminded us that with this medicine Alex wont sweat when she's hot.  Now that it's summer it's really important the we remember to hydrate her even more because her body wont let us know she's hot, and she wont be able to tell us that she's hot or that she's extra thirsty.  Wonder if there's another alarm spot open on my phone?!?

Good thing she's so darn sweet:)

Tuesday, June 25, 2013

Aqua Therapy

Because life isn't busy enough with all of the therapy and doctor appointments already in place and running from here to there like a crazy lady, I went ahead and decided to add one more therapy to the calendar :)
Alex LOVES water - loves anything that has to do with water - washing dishes, hysterical, bath time, crazy, pool - even crazier, etc.  Trying to handle Alex in the water is like trying to nail jello to a tree.  It's pretty much impossible.  She just gets so excited and the bigger she gets, the harder it is to control her from squirming every which way to Sunday, screaming so loud your ears ring for days, ripping her hair out and pinching you in those ever so sensitive spots, like the backside of your arm, as well as trying to keep her from sticking her hands in her mouth.  Good mental picture yet?  Because her tone is so low in her trunk we can't use typical tubes or floats, she goes face first right into the water.  We've been desperately searching for the last two years for a way to securely get her in the water and not have to physically hold her.  No luck.  If anyone knows of anything, by all means please leave a comment!  After about an hour in the pool you can't help but be exhausted.  It's really not a relaxing day at the pool!
I've wanted to do aquatic therapy with Alex for years.  I wanted to combine something she loves with something she doesn't like so much.  And I figured if she was preoccupied with being in the pool, maybe she wouldn't realize she was actually working at the same time.  We found a therapist and last week we had our first session.  It's an indoor pool, and the facility actually has a therapy pool.

 And....it even has a lift to get her into  the pool.

And here is the coolest thing EVER - they have treadmills - UNDER water!  How crazy is that?!?

So we met with Sally, the Occupational Therapist, who runs the program.  Alex was excited at first, and Sally got a few pinches that I'm sure left a mark the next day but then she started doing some Tai Chi movements with her and I swear it was like she was the "Alex Whisperer!"
Just look at how calm and relaxed she is!

Alex's knees and hamstrings get VERY tight.  She keeps her knees completely bent and trying to get her to stand with straight legs is impossible.  She was so relaxed in the pool it made it easy to be able to work with her legs.

We tried a few of the floatation devices that were readily available, but you can really tell even in the pictures that they just don't hold her up enough to allow you any freedom to not have to constantly hold her up.

As of right now the therapy is not covered by insurance.  That is supposed to change soon and if it doesn't I will have to reevaluate, but for now I I look at it this way....Zach gets to participate in sports, he gets music lessons, he gets to go to fun places and enjoy doing things that kids his age love to do.  I take Zach to Target - and it's Mom, can I have....[insert request of the AISLE here], at the grocery store, Mom, can I have....[again, insert request of the AISLE here]...Mom, can we go to McDonalds, Mom, can we go get ice cream, Mom, can we.....you get the point.  Alex can't ever ask for anything for herself, and I KNOW she is truly enjoying herself - so not only is it potentially going to help her but it makes me feel good taking her because I know she's happy. 
Just look at that happiness!

Saturday, June 22, 2013

Happy Birthday Mom!

Today is my mom's birthday and I'm looking forward to spending the day with her and my sister.  My mother, who to this day will tell me she doesn't know where I came from, where I get my strength from.  You know the old saying the apple doesn't fall far from the tree?  My mother has taught me so many lessons in my life and still doesn't realize that all the credit goes to her.  My mother is the first person I call when I have important news, or I want to laugh about something, or I want to cry about something, or I want to vent because I'm mad about something.  She always knows what to say and she has such a way with words.  A Hallmark card from my mom will have you running for the Kleenex.  She is the first person to call me in the morning to check in and see how every ones night was, or to comment or laugh about one of my blog posts.  There isn't a day that goes by that we don't talk to each other at least two or three times a day.  In retrospect when I think back to the early days when we were realizing that Alex was going to be, well, Alex, how much harder it must have be for her, and I'm sure is still harder to this day.  I sometimes hurt for my daughter, but my mother has the double hurt.  She hurts for her daughter and her granddaughter.  My mother definitely did not have it easy growing up, and there is a lot I will probably never know about the difficulties she had and that's mostly because she doesn't complain and she has always strived to give me and my siblings a better life than she had.
This may come as a shocker to some, and some may cringe at the remembrance, but I was NOT an easy teenager growing up.  More often than not mom and I butted heads.  I was hip and cool and I knew all there was to know and she knew nothing.  My biggest regrets in life are knowing what I put my parents through in those hard teenage years.  But the one constant thing was their unwavering love.  And it has made the person that I am today.  Being a nurse she was always compassionate to her neighbors in need.  And from that I learned to have a generous heart.  My mother has always taught me that sometimes you don't do things because you want to, but because it's the right thing to do.  She's taught me that sometimes you decorate your dining room table because it's a holiday, and sometimes,  just because.  She's taught me sometimes you have to hit your knees praying because there is no where else to go.  She has taught me so many life lessons and I could write on and on about them.  My mother is an amazing mother.  She's an amazing Me-Me (and Me-Maw) to her grandchildren.  I'm lucky that I have the mother that I do.  I'm blessed beyond words.  Our whole family is.  She is our matriarch. 

I was driving the other day and heard this song on the radio.  It reminded me so much of my mom, not only because she likes this song, but because she truly does raise me up. I wish the pictures could have gone back further in time, but due to technical difficulties I couldn't, I hope you enjoy.  I love you Mom!

Tuesday, June 18, 2013

First Swim Meet and My Melt Down!

Last Sunday was the first swim meet of the season.  It was the Sunday Aaron had gotten home from his golf trip and he got home about an hour before we had to be at the meet.  To say it was a fire drill getting everything ready and getting everyone out of the house would be understatement!  I was running around like a chicken with my head cut off and  must have asked Zach 15 times to pack his bag, go to the bathroom and get ready.  I had made him lunch and he was whining that he wasn't hungry and didn't want to eat.  I told him 5 times he needed to eat so he would have the strength to swim, but after 30 minutes of his grumbling, I was frazzled, gave up and said fine - don't eat - but don't you dare ask for anything from the snack bar when we get there!!!  By the time we got on the road we were already running about 10 minutes behind and that stressed me out.  When we got to the pool (it was an away meet so it wasn't at our pool) we realized the pool had two levels - and the meet pool was DOWN two deep flights of stairs.  Clearly that wasn't going to be an option for Alex!  Without going into a lot of detail it was a pretty big debacle getting Alex down to the meet pool and I was fuming mad about how the situation was handled and frustrated beyond words.  And it was hot.  And I was miserable.  And Alex was miserable.  She was mad too - she wouldn't stop biting herself or pulling her hair.   I had found a seat that was somewhat shaded and was getting Alex's medicine out of her bag when a teenager just came over and sat right in my spot.  Ok, maybe he left me a quarter of an inch to sit, but it was pretty obvious that I was in the middle of doing something and he just plopped himself down.  So I was already fuming mad and that certainly didn't help!!!  And Alex was still mad, and she was still pulling her hair and she was still biting herself and it was still hot! 
I was trying to get her settled when one of the Mom's came up and asked me where Zach was because he was swimming the first relay.  And he was no where to be found...why you ask?!?  Because he didn't listen to me before we left the house and he was in the bathroom!!!  Insert scream here. 
He managed to get back just in time.
First relay of the season!
Waiting patiently for his team mate to make it to the end of the pool!
And he's off!

Back to Alex.  It's time for her to eat.  And I'm trying to manage and maneuver around in my quarter inch spot because apparently it's nice to be a teenager and live in a pretty oblivious world.  And Alex was still mad, and she was still pulling her hair and she was still biting herself and it was still hot! My attempts at feeding her where futile and she was pushing the spoon away and spilling food everywhere and trying to pull her hair and push me out of her way at the same time.  I am now beyond exasperated!  Insert louder scream here.
Time for Zach to swim the free-style heat.  Same Mom comes looking for Zach.  And I can't find him. Why you ask?!?  Because his dad has taken him TO THE SNACK BAR!!!!!!!!  INSERT EVEN LOUDER SCREAM HERE!!!  By the time he came casually walking back with his chocolate chip cookie and his bag of chips - you know lunch of champions, I lost it and yelled at him.  And Alex was still mad, and she was still pulling her hair and she was still biting herself and it was still hot!  And I finally looked at her and yelled STOP, JUST STOP! 
Oh imagine what a train wreck I looked like screaming at both of my children!!  I can laugh about it now, but man oh man it was not pretty.  I hardly ever loose my patience with Alex.  I really don't.  I know she can't help it.  But I am human after all - and she was still mad, and she was still pulling her hair and she was still biting herself and it was still hot and combined with all of the other events of the afternoon I just couldn't take it!  Of course, after the fact, I felt HORRIBLE about it.  :(

Luckily Aaron was nice and calm.

Doesn't look like Zach was too phased either, huh??
Adjusting his goggles getting ready to swim free-style.
One last pep talk from his coach.
One last look back to make sure we were watching (I love this picture)
On your mark, Get Set....
He came in second but had a great qualifying time! 

I don't look like a crazy deranged lady do I?!?  Zach still looks like he loves me, doesn't he?!?

Even after taking Alex out of her wheel chair and letting her stretch out, she was still mad, and she was still pulling her hair and she was still biting herself and it was still hot!  We finally decided enough was enough and packed it up and called it a day.  We left Zach with our friends Scott and Leslie so he could swim his final heat - which was the backstroke and he came in fourth. 

The second we got Alex in the car, she was a very happy camper.  Sigh. 

So, hopefully people who don't know me and have never seen me interact with my children don't think I'm a crazy, deranged, mean ole mom.  Hopefully they realized everyone just has one of those days!!  I'm THANKFUL though that they are very far and few between!!

Monday, June 17, 2013

Happy Father's Day!

I got to spend Father's Day with a bunch of pretty amazing dads.  First and foremost, my Dad.  Thank you Dad for all that you do.     


Even yesterday, you didn't get a break and you never complain about all the tasks we assign you with!  Thank you for the delicious barbecue.

The love you have for our Allie Bean is second to none and anyone who has seen the two of you together can't help but to notice or comment on the obvious special bond the two of you share.  We all know that Alex is a great judge of  character.   From the food you make her to the phone conversations you have with her to the butterflies or snowflakes that you hang above her bed to the ramp you made to make it easier to get her in the house and everything else in between that you do, thank you.  Most importantly, thank you for loving her so unconditionally.  I love you!

 The un-denying look of adoration on her face says it all.

We had a nice barbecue at my parents and we got to spend time with my brother-in-law Shane.
Not only is Shane a good dad and step-dad, but he's doing a pretty fine job of kicking some cancer butt.  We are praying he finished his last round of chemo last week but we wont know for sure until after an appointment tomorrow, so for all of my praying friends, a prayer right about now would be most welcomed. 
Of course then there is my husband.  I honestly couldn't have asked for a better person to share this journey with.  He is such an involved father whose love for his children is evident.  Without hesitation he'll head to play basketball or go fishing or bike riding or any other request Zach has after working all day.  He's Alex's cheer leader.  The first one up at 5:30 every morning to give Alex her medicines and start her tube feeding.  The one who changes out her g-tube and any other "icky" job I don't want to do and will make any accommodations for her.  You would go to the ends of the earth for our kids and I love you for that and for the dad that you are.  We are truly blessed to have you.  Thank you for all that you do for our family.
I hope you enjoyed your little cat nap yesterday!
(I gave him that shirt as one of his Father's Day presents - couldn't resist!)
Happy Father's Day guys!!!

After my parents house we went to our friends Dara and Jerry's house.  They have four girls and two of their girls have special needs and Jerry is an amazing dad to those girls who would do anything for them as well.

Their daughter Jule is Alex's BFF - they love spending time together and often have their own little conversations - it's quite cute to watch them interact.

When we were about to leave, Jule bent over to give Alex a kiss.  It was the sweetest thing.

I hope everyone had a nice Father's Day.  A special Happy Father's Day to my father-in-law John as well. The miles between us all has always made it challenging to spend holidays and birthdays together, but we are thankful for all that you do even from all those miles away.  Thank you for being such an involved Dad and raising your son to be the kind of man who respects his wife and is hands on with his children.  We love you!

Friday, June 14, 2013

Last Day of School!!!!

Goodbye 4th Grade!!!
Here's Zach on the first day of  third grade:
And here he is this morning - look how big that smile is!
Also notice how much more slack we are with the back pack :)

Alex on her first day:

And just as happy this morning!!

I have to say I am very glad this school year is over.  It's been tough.  I can't believe Alex will graduate next year!  She will have a new teacher next year too, which we are also excited about.
I'm looking forward to a fun summer and making some great memories!

Monday, June 10, 2013


I mentioned that it was Aaron's 40th birthday - and he didn't feel well on his birthday so it was kind of a bust.  There was no party, and while there were some gifts, they certainly weren't milestone birthday gifts :) Well what Aaron didn't know was that I had been planning a surprise trip for him.  And for that trip I was arranging for his best friend Jerry from back home (Rochester, NY) to fly in and surprise him.  Well that all happened this past week.  And he was SUPRISED!  Yeay!  I will say - I told Aaron there was no way he would ever have to worry about me having an affair - it's WAY to complicated to tell lies, keep them all the straight and hide stuff at the same time!
To make sure that he had the day off I told him that I had to go out of town for the day on Friday for work and that Alex had a nutrition appointment that he HAD to take her to because she had missed her last appointment and it was really important that she didn't miss this one.  I had called his bosses and requested that he have the day off - which they were fine with - but they said that if he scheduled something for that day there was nothing they could do about that.  So I made up this whole elaborate story (I even wrote it on our white board calendar in the kitchen which had my nurse totally confused!)  He kept making comments that he would go into work if her appointment was done early enough and he kept making plans for the weekend that I had to remember to write down so those plans could be undone.  I had to remember to erase all relevant text messages, delete call logs, hide e-mail confirmations...sheesh, it was exhausting!
Jerry flew in on Thursday - and his flight was almost two hours late - so we were pulling in from the airport at the exact time Aaron was due to get home.  We pulled in the driveway and Jerry darted in the house and a minute later Aaron pulled up.  I had to turn away and pretend to be looking at the mail that I had gotten when I saw him driving down the street because I kept smiling - I was SO excited for his reaction - I had been like a kid waiting for Christmas for the longest time!  Jerry was inside in the living room and Aaron normally goes right upstairs to change out of his uniform - I was stalling him in the kitchen talking to him for a minute and in my head trying to figure out how to surprise him with Jerry (our original plan was screwed up due to the 2 hour flight delay) - but as luck would have it, Zach had been watching TV and had turned the cable box off so there was no picture on the screen, but left the TV on - which Aaron happened to notice so he went in to turn the TV off and as he walked in the room Jerry said something like, "Gee, it sure would be nice if someone offered me a beverage or something" - and when Aaron looked up his face was PRICELESS!!  He had no clue! And he was SO happy!  It was just awesome!!!

I then told him to go pack because he, Jerry, my brother and our friend Scott were leaving for a boys golfing weekend. They played 9 holes of golf on Friday and when they went out to eat that night my brother apparently paid the entertainment to have the restaurant sing happy birthday to him - which was great!  They played 18 holes on Saturday and even though the weather here was horrible here, they had great weather for golf.  Of course, it was all boys so they didn't think to take any pictures - the only pictures I have of their weekend are pictures of the golf course!

Aaron must have thanked me a hundred times over the weekend.  He said it was the BEST birthday ever.  Every time I spoke to him on the phone he was laughing and you could just hear in his voice how happy he was.  When they got home yesterday he was still smiling.   And that made me happy! 
Mission accomplished!!!!!