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.

Monday, September 30, 2013

Never A Dull

Notice anything missing from this picture? 
No, that big red hole is not Alex's belly button - that would be the hole where her feeding tube NORMALLY is.  Friday night she was in her bed watching a movie and having a tube feeding.  I was on the phone with my mom and when I went in to check on her I initially thought she had thrown up because there was a lot of formula in her bed - but then I saw her extension tube laying on the side of the bed with her feeding tube attached to it, and the pump was still running.  Yikes.  I hung up with my mom and went to get Aaron who was trying to get some yard work done (and had been for the whole day with a million different interruptions).  I told him Alex's tube had come out - no big deal for him - he had replaced it just two days ago (her tube has to be changed out and replaced every three months and Aaron is the one that always changes it out - it's not one of my favorite things to do!).  Only thing is I wasn't home when he changed it out so neither of us realized that was our last one and we didn't have a back up tube.  Whoops. 
I am a little concerned with how red her site is - I use a special cream around her stoma and it always looks really good so this is out of the norm for her.  It's still red today so we're keeping an eye on it and hoping it will resolve itself soon.

This is what her feeding tube looks like - the long stem is placed in her stomach and then it's anchored in place with a balloon... 
 This is what hers looked like - the balloon had burst so there was nothing keeping it in her stomach. 
No crisis really, it was after hours so we called the medical supply company who had to call their on call person.  It took a bit for them to call us back so I called my friend Christy to see if she had an extra one I could borrow in case - I joked with her because the conversation was so "normal" for us... "Hey, do you have an extra Mic-Key feeding tube? Is it an 18 French, 2.0?"  It's like calling and asking your neighbor to borrow a cup of sugar or something :) The main thing you have to worry about is keeping the site sterile, and getting another tube back in as soon as possible.  The hole will start closing after about four hours.  When the company finally called back they said they had to drive to the warehouse - which was about 30 minutes away from where they were - so we were looking at about an hour and a half at least before they could get the tube to us and they recommended we call the hospital closest to us to see if they had one in case they didn't have any at the warehouse, which they did.  There was nothing to do but wait - I was laying in her bed and she and Aaron were laying on the floor on her bean bag and we watched Beauty and the Beast - just another day in paradise :) To make a long story short, they finally got to our house and....they brought the wrong kind of tube.  Ugh, seriously?  We put it in anyway and we're waiting on the right tube to get here.  This tube is SO much more of a pain - we had in once in the past and it was a nightmare - I really don't know why anyone would want to use this type - you have to have an extension in just to be able to give meds...and we do that a lot during the day - so it's an extra step, and extra 'thing' I need to have ready and very annoying to me! 

Back in and back in business! 
And serious props to my husband for always taking care of issues like this and hanging with us girls while we waited...it was a crazy kind of bonding time...in our own twisted little way!

Thursday, September 26, 2013

Date Night With My Favorite Little Man!

From the time Zach was two years old he loved the movie the Wizard of Oz.  It's always been one of my favorites.  Back in the day before VCR's and DVD's (how bad am I aging myself?!?) we had to wait ALL YEAR LONG for it to come on TV - and it always came on around Thanksgiving time and the excitement year after year always grew - just ask my sister about our family memories of the Wizard of Oz.  Or my Dad...(inside joke). :)

Zach would watch the movie over and over and over.  He was never afraid of the witch or the flying monkey's.  He was prime time in LOVE with one Dorothy Gale.  Or as he called her at the time "Dorfey".  Just thinking about it makes me smile. 

When he was three months shy of his third birthday my mom and I took him to see the play at one of the local theatres.  We had front row center seats - and I was a little bit afraid of how well he would be able to sit through the performance given his age and the fact that the show didn't even start until 7PM, but he sat with his eyes fixated on that stage the whole entire time and soaked up every single minute of it.  When the play was over the cast was out in the lobby and you could wait in line to take pictures with them - even at two years old Zach knew to be shy around his crush and his face was like, "Mom - you are seriously cramping my style and embarrassing me! " (It's only going to get worse buddy, I can promise you that!) :)

Back when I actually thought I would be able to keep up scrap books for both of my kids...(I honestly never even fished the adjoining "The Wizard" page!)

Fast forward 6 years and it is the 75th anniversary of the movie.  For one week only it is here in the IMAX movie theatre in 3D - and oh yes, date night with my little love is on! 
I did not realize how expensive our little outing was going to be!

$31 for two tickets~geez!!  Of course then there is the obligitory popcorn and box of Reeses Pieces!  I think I paid more to go to the movies than we did the theatre!

He's worth it though - we were both super excited when the movie started.  And then I embarrassed him by singing.  See, I told you it would get worse! 

A great memory made today - well I hope for him - definitely for me! :)

Friday, September 20, 2013

HAD to Share!!

Last night was Back to School night.  When we got to Zach's desk there was this picture and three paragraphs about himself.  As soon as I started to read it I was smiling, then I was crying.  There are no words to describe my love for this kid!

It says this:

By Zach Hayes
Have you ever wanted to know what other people's lives are like?  Read on and I'll tell you about mine.  My name is Zach.  I am nine years old.  On July 28th I will be ten years old.  I have sort of brownish hair color.  I have hazel blue eyes.  I am sort of short but I am like medium height.  And same about my weight.
My name is Zach and I have the most awesome family ever.  Let me start off with my sister.  I have the greatest sister in the whole world.  She is so smart considering what she has.  I lover her so much and I love having her in our family.  The next person I want to talk about is my mom.  I lover her so much what doesn't she do she cooks for me she serves it to me.  I lover her so much.  I love my dad so much he is my favorite guy ever!  He takes me hunting, but that's not all.  I have a really fun dog.  He is a Lopsa Opsa, he is the greatest.  I also have the worlds greatest cat!
I like hunting, basketball, fishing, hockey, football and biking.  I kind of like oysters, but I really LOVE bacon!  I do not like Justin Bieber, nor One Direction, Big Time Rush or black widows!  I do like dogs and cats.  I also don't like sharks, but I still go in the ocean.  I love tacos and I absolutely adore pancakes.  I do not like going to bed.  Those are my likes and dislikes!
As you can see I love my family.  I have the best life in the universe.  I love my life.
SNIFF!   That is SUCH a keeper, I can't wait for it to come home. I may just have to have frame it.  One of those moments where you think to yourself, ok, I must be doing something right!

Thursday, September 19, 2013

Totally Random

No rhyme or reason to this post.  Just totally random thoughts/pics.  I was telling my friend the other day that sometimes I just blog because I don't have time to do the things I liked to do before my life got so crazy to capture our moments in time like scrap book anymore.  For all intensive purposes, my blog is my scrap book.  I print my blog into a hard covered book every year and some day when Zach or Zach's children want to know what life was like, he'll have something tangible to go by. 
Alex is doing really good with all of her therapy.  A few weeks ago she got to take a break from the stretching and standing and got to ride the bike.  This picture makes me smile.
One of Zach and Aaron's favorite past time is spending time together at their hunt club.  A few weekends ago they went and had a boys weekend while Alex and I had a fun girls weekend at home.  
One of the things I had been wanting /needing to do was get Alex's food ready for school.  Alex gets two feedings via her feeding tube each day (sometimes more based on the amount she can consume by mouth) but for the most part she will eat two blenderized meals at school -  the last thing I want to have to do is think about adding that chore to the end of each day!  I got a great jump start on her meals and had about three weeks worth ready to freeze - each night I just pull out the next days meal from the freezer and she's good to go.  
The next morning when she got up I brought her into my room - there is something about my room that gets her crazy excited.  She screams so loud and flaps her arms like crazy so she loved every minute of it!

We played a few games on her I-pad and snuggled for a bit.  It was such a calm/relaxing morning with her.

We got dressed and moved the party to the living room where we played with a few of her favorite toys and read her favorite books.  She's loved the same two books since she was about three years old and they never get old.  She gets just as excited every time.

The next morning we spent some good quality time out on the porch.  She let me paint her toe nails and I even got to bedazzle them with some little diamond stickers :)

I think this is probably my most favorite picture of her in a long time.  When I looked back through the pictures I had taken of her that morning it hit me just how grown up looking she is lately.

She is certainly a tween, no denying it.

On to my littlest love. 

So far so good in 4th grade.  He is loving his teachers and really having a good time.  He's been great about doing his homework and doing his reading.  I walked in his room the other day and he was sitting on his bed reading and next to him were his two favorite bears and he had books open in front them reading with him :)

He is SUPER excited that he was picked to be one of the bus safety monitors this year.  He had to write an essay at the end of last year on why he would like the assignment and couldn't wait for the school year to start to find out if he got it. 

Last but not least for this post - Rudy.  Ole Rootie Tootie Fresh and Fruity is a handful!  He's definitely all that a puppy is cracked up to be...and he is definitely a chewer - so I try to keep him entertained with toys and bones, but he absolutely destroys any stuffed toy we get him within minutes.  His last casualty only took about 4 minutes before he met his demise!
Alex uses a pacifier when she goes to sleep.  The other day I was getting ready to lay her down and I knew I had brought the pacifier in with me but couldn't find it....only to look up on the couch....
 He's a mess. 


But he's just so stinking cute you can't help but to love him!

Tuesday, September 17, 2013

Weight Therapy

I was cleaning up yesterday and I had to chuckle at the 'grave yard' of casts that's been building up!
Now that Alex is back at school we are finished with the casts....whoo hoo!  I know she's happy!!  However, now that she's not in the casts it's  super important to do therapy and exercises at home to keep her legs stretched and not regress.  I've mentioned a few times that we bought a universal cage for Alex's room so that we can do some of the same therapies that they do in her intensive physical therapy sessions at home.  I'm embarrassed to say though that it became a really expensive laundry spot that housed all of Alex's clean laundry!
But not any more!!! Getting her hooked up for all of the exercises took two people so it was very challenging finding the right times to do exercises with her.  BUT, Shannon showed us a few exercises that we can do with her that only require one person, much to Alex's dismay!   As soon as I start putting the boots on her she knows she's in for it!
I call it her weight therapy.  Basically all we do is lay her on her stomach and attach weights to boots which forces her legs to stretch....easy peasy!

And the longer she tolerates it, the more weight I add.  These weights are in kilograms so in that picture she has three pounds of weight on each foot.  I've gotten her up to six pounds so far - she definitely lets me know when she's reached the point she can't take it anymore. For the most part as long as we keep her entertained, she tolerates it pretty well - and Zach is usually there to help entertain her and make her laugh.  He's so good to her. 


The second I took my hand off her ankles she turned a bit to try and get out of the stretch, but look how straight those legs are!

NOT to be compared to how they look once the weights are removed.  She's such a stinker.

We start intensive therapy next week so I'm anxious to see what her leg measurements are and how she looks after her three weeks of boot camp with Shannon!

Wednesday, September 11, 2013

The Weekend

This past weekend was a busy one.  The NASCAR races were here, so that meant that Aaron was gone for the most part.  Saturday my parents came over to visit with the kids and normally that makes Alex one happy camper - only she really wasn't one.  She woke up pretty grumpy and stayed that way most of the morning and when she woke up from her nap she was still pretty grumpy - not like her.  She had been having a lot of drainage from her ear - but that has been going on for almost a year.  Her pediatrician checked her ears out about 6 months ago and said they looked great.  We have been chalking the drainage up to all of her drool possibly running into her ear when she is laying down.  Anyway - her throat looked red and she had some little red bumps on her chin so my mom and I decided to take her to KidMed just to have her checked out. This is my biggest frustration with Alex being non-verbal.  She can't tell me when something hurts - it's a forever guessing game.  Do I really need to take her somewhere and expose her to more germs if maybe she only has a head ache for heaven's sake, or is there something deeper going on that needs attention?  I hate having to be the one that has to decide that.  Alex's universal sign for something is bothering her is to bite herself.  She NEVER rubs or points or indicates what is wrong.  Could be a hang nail, could be a sore throat, could be a stomach ache - only she knows.  
Her strep test was negative but when they looked in her ear they said her ear canal was pretty backed up with wax and they couldn't even see the membranes in her ear.  There was a possibility that her ear drum could have burst, but they couldn't say for sure.  They couldn't get in her ear deep enough to remove the wax so they suggested we get some over the counter medicine called Debrox to soften up the wax, give her Motrin for the pain and schedule an appointment with an ENT because they weren't going to be able to do anything further.   
Monday we headed off to the ENT.  Her left ear, in his words, was "pristine", her right ear had "a wax issue" and while it was not a big deal at all, he was glad that we were "punted" to him instead of KidMed trying to remedy it on their own. 
He placed some peroxide in her ear and went to get his irrigation tools.  I think things must have felt or sounded funny to Alex with the peroxide bubbling up in her ear because she sat like this the whole time the doctor was out of the room.
When he and the nurse came back in they started to irrigate her ear and not to be gross, but what was coming out of her ear was pretty nasty.  I said I wanted to take a picture and after a minute or two the nurse dumped everything down the sink - and when I commented again that I had wanted to take a picture she looked at me and said "You were serious about that?!?"  I had to laugh.  The doctor laughed and pretty much said "whatever floats your boat"!  Sometimes my oh so not normal life seems so "normal" to me that I forget how we can come across to complete and total strangers!
After a few more syringes of warm water in her ear this came out.  Yes, this time I actually took a picture :)
That had to FEEL SO MUCH BETTER....but I guess maybe it hurt coming out because she screamed and cried.  I really wonder how having that stuck in her ear canal felt - were sounds muffled?  Is it like when you stick your finger in your ear and talk and everything sounds louder?  Once again, only she knows and I can only wonder.  The doctor said her ear canal was red and that it could have been from the irrigation, but since it was apparent she had been in pain before the 'extraction', he put her on an anti-biotic just in case it is an actual infection. 
On Sunday Zach started ice-hockey.
I have to say, I was really proud of him. All of the kids had taken this clinic already, and some of them multiple times, so they all knew how to skate really well and knew what to do.  The few times Zach's been ice skating he's been a 'wall hugger' so he was pretty intimidated watching the other kids get out on the ice and start practicing drills.  By the time he got on the ice the coach and I had a brief discussion about him maybe not continuing on for the rest of the scheduled clinics - but, he sucked it up, got on the ice and gave it all he had.  By the time the hour was over he was already skating better and asking when he was coming back - he loved every minute of it.
Alex thought he looked pretty funny in all of his get up and she laughed at him every time she looked at him :) She was pretty cold so entertaining her for the hour was a little challenging.
I don't think Alex is going to enjoy this experience as much as Zach will!

Friday, September 6, 2013


Yesterday was therapy day.  I had to pick Alex up from school early and have her to physical therapy at 1.  Shannon started her PT session  checking out the range in her legs.  Still pretty much at a -12.  If she REALLY stretches her out, she can get her right leg to -5 and left leg to -10.  So not terrible, but not really where I was hoping she would be after all of that casting.
After her measurements were done we went to the 'cage' - (you can see images here - and we have this at home too) and Shannon placed her on her belly and hung weights off of the boots that were on her feet to stretch her legs.  Alex was NOT a fan!  This is what she looked like after three minutes.
My poor girl works so hard so I don't mean to laugh - but I do giggle every time I look at the picture!

 It only took her a minute or two to regroup and smile again :)

After that exercise Shannon set her up to do some standing.  This is the first time Alex has been set up to stand like this and she was intently watching the process.

I'm amazed at how many bungees, pads, belts and straps it takes to get her to stand up straight. 

And even after all that Alex still found a way to twist her legs so Shannon had to put a mini basketball between her legs!

This is one of the set-ups Shannon would like us to use at home and I made several jokes and wise cracks about what Alex is going to wind up looking like if she thinks that I can set all this up exactly the way it should be.  Alex will likely be hanging from the ceiling :)  I took lots of pictures so I can try and figure it out.  Stay tuned :)

One of Alex's favorite noise is 'kissy sounds' - so anytime we want to engage her or try and make her smile if she's frustrated is to make the kiss sound....here Shannon's getting her lip work out while Alex is getting her leg work out.

Shannon ended the session with her with a dance :) 
After we left physical therapy we had to head over to speech therapy.  Alex has been in speech therapy since she was about a year old.  And you might remember I just blogged last week about how she totally rocked her speech session.  I guess her therapist didn't think so because when I walked in she started talking about how Alex had been working on the same goals for quite a long time now (which has been about the last year and half since she started working with this therapist) and the basic gist of the conversation was that she didn't feel like Alex was making that much progress and that she couldn't do anything else for Alex so we were being discharged.  At first I was on the defensive and then I just started getting mad.  Anytime Alex has gotten to a stand still or didn't make progress in an area different goals were created for her.  If one method of communication didn't seem to be working, something new was tried.   Her plan of care had not been updated in years so I was mad that instead of changing her plan, the decision was ultimately made to just dismiss her.  I've always learned neat things from her therapy sessions and different ways to present things to her - or have found a toy or book that a therapist used that really motivated her so I've always found her therapies to be very helpful.  Believe me, if I didn't, or I didn't think she was getting anything out of it, I wouldn't juggle all of the therapies on top of the thousand other things we have to do.   I didn't even stay for her session yesterday - I left after that conversation.  What was the point of staying?  I can't believe I haven't blogged about it before now, but we have been implementing a new communication style with Alex called PODD.  I think we'll take a little break and get back into a school schedule and routine and then I'll work on finding a therapist that is trained in PODD and see where we go from there.   For right now I'm focused on getting her cage hook up right so she's not all tied up upside down :)