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.

Thursday, February 27, 2014

Snap Shot Of Our Day

I woke up this morning feeling pretty overwhelmed. I like to think of myself as a roll with the punches kind of person (like it or not that's the way we definitely have to roll around here!) and I really try not to overthink or stress myself out over things I ultimately can't control.   Having said that, when I went in to Alex's room to give her her morning seizure meds and start her tube feeding I was processing all of the things I had to do today.  I had to get Zach up, dressed and fed, get the dog taken care of,  pack lunch for Zach, walk him up to school, come home and grab a quick shower, I had to order all of Alex's feeding supplies for the next month because she was out of feeding bags and needed a delivery tomorrow, I had to call the insurance company about their screwed up billing, I had to blend up some food for Alex for lunch, take her to therapy, which was going to make me an hour an half late to work, work for two hours, then leave to pick her up from therapy, drop her back off at home, run back out because tomorrow is Super Hero day at school and Zach needs some sort of costume, pick Zach up from school, he was having a friend over after school so I was planning snacks and activities in my head, then there's going to be homework, we had sibling support group tonight so I was figuring out what I was going to leave for Aaron to eat and then I walked past our spare bedroom that had a ridiculous amount of clean laundry thrown on the bed to come downstairs to finally make my morning cup of coffee only to find the dishwasher needed to be emptied and I just momentarily lost it!  90% of the above is just a typical morning in the Hayes house so when I really started to think about why I was freaking out it came down to my stress about Alex.  I'm stressed about her being worse off, standing wise, than she's ever been and I'm stressing because we are pretty much through week two of intensive therapy and for the first time in years I am not at all of her intensive sessions and the exercises that's she's doing are different and I am completely out of the loop even though Aaron, Tammy and Shannon give me their synopsis of her day.  BUT, at the end of the day, I'm the one that facilitates what Alex is going to be doing, I'm the one coming up with her exercises and plans and I'm not there to see what's going on and I'm feeling completely on the outside looking in.  Whether I like it or not, Alex is getting bigger and her plan of care is changing and I felt like it was running totally off course because I haven't been there to witness all of the changes.    I really, really, felt like I had to be at therapy today so I took the day off and spent it with her.  Not only did Alex have a great day, BUT it really helped me to gain the perspective that I needed and Alex proved to me once again that she's a complete rock star. In hindsight I thought Aaron being able to take her so I could go to work would take some of the stress off of me but it actually did the opposite because instead of being there seeing what she was doing and the areas she was improving in, I was only guessing, not to mention by the time I was getting home from work she had already done a full days work and so she had nothing left to give.

This is how Alex spent her day. 

She started off riding her bike...

 Then she laid down and started to get ready for her heat therapy and her massage.

And while she's being 'tortured' through that awful pampering, she's screaming and crying - she absolutely hates that part of therapy.....she seriously is wired backwards!!!

After that torture she has to prop and support herself on her arms.

 And then she has to have bigger stretches done.  Her battle scars are still pretty prevalent.

After all of the stretching it's time to put her 'suit' on and stand at the wall.  She has been tolerating zero weight bearing at home so to see her doing this gives me a glimpse of hope.

This is BY FAR my most favorite picture.  Look at how AMAZINGLY TALL she is STANDING - AND she is NOT using the wall for support!!!! 

Granted she has leg immobilizers on and the suit with the bungees to help support her, but how can I not get excited seeing her standing so tall, straight and with a smile on her face?!?
After standing it was time to do some sit to standing - and this is where she's been petering out, but by this time she's already been working for two solid hours so could I really blame her?

 BUT, today, perhaps just for her tired, ole, mom, she pulled it out and rocked her sit to stands.  And again, remember she hasn't used a lot of these muscles for months so her endurance (she did almost an hour of these) floored me.
Once that was done it was time to rock out some triple flexion with weights. 

And finally, the last exercise of the session!

Unfortunately for her the therapy isn't over for her once she leaves the building.  She got home, ate, chilled out for a few minutes and then had to have her braces put on for an hour.

And after that, she had to have a different set of braces put on and hit the stander for another hour. 

And might I mention, all still with a smile on her face.  Is it really any wonder she is crashed out and in bed by 6:00? 

I really needed to be with her today, to see her try so hard and to do so well.  I know I have said it before but she truly works SO hard everyday to do the simplest things we take for granted and yes, she may get grumpy about it and try to get out of doing it, and sometimes she may be just a little stubborn, but for the most part, she's trying and she's doing it with a smile on her face.  She truly humbles me.

Wednesday, February 26, 2014

Love and Roosters?

I often write about Alex not being able to play independently and that sometimes the most frustrating thing is not knowing what she knows.    This afternoon she and I were playing and she kept trying to pull the lever on her favorite toy - the See N Say - she loves, loves, loves the rooster sound.  The difference today was that she was really trying to do it all by herself and she actually did it twice....for her that was huge.  There are two commands Alex knows - why only 2, I have no idea and I wish I knew what was the key to getting her to understand those 2 - I really wish I did so we could turn 2 into 200!  She will give me five and she will 'give me love'.  I think I've been a little preoccupied with my disappointment in her physical therapy that I've lost sight of the fact that she is constantly working on so many areas at the same time that sometimes I just have to stop focusing on what I want her to do and focus on what she's actually doing.

Here's me getting my love, lots of love and her getting her rooster!

Friday, February 21, 2014

Where Does The Time Go?

It's so hard to believe we had a meeting at Alex's school yesterday to discuss her transition from Elementary School to Middle School.  I was really glad they had a box of tissues on the table when we walked in.  It's no secret Alex loves going to school.  I love that she loves getting on the bus and going to school. Even when we drive by the school on a weekend she gets so excited, and that makes me happy.  She's been at the same school, in the same classroom for the last seven years.  It's all we know.  To think about her going out to the big league is so bittersweet for me.  It is SO hard to see how fast time has gone.
My sweet girl in Kindergarten...
                     Just before she went to bed tonight.

We had her IEP (Individualized Education Plan) for the rest of the year and set goals for next year.  I will say the staff from the Middle School made me feel really good about her going there and the team made Aaron and I feel like they are really involved on all levels.  I know a few other kiddos that have gone through the program and the parents have spoken very highly of the program .  They told us to bring Alex, starting now, to visit the school at anytime.  They want her to attend the rising 6th grader camp day, invited and highly recommended that Alex attend the pep rallies (just the thought of her being at a pep rally made me smile) as well as all sporting events.  Again, I just had to smile because I know Alex will just love that.  The louder the noises the better.  Maybe I can get her on the marching band and she can bang the symbols! :)  
I don't know if I'm more sad about her leaving what is so familiar, or the fact that she's not such a little girl anymore. I really, truly feel like this is going to be a great thing for her and I'm excited to see what Middle School has in store for her.   BUT, my little Allie Bean is growing up and it's such a hard thing for me to grasp.  I see her changing, I see her becoming more social and interactive and I as much as I'm proud of her for that, for how hard we've worked to get her there,  I want to keep her where she is, but she's ready, it's me whose not.
On a side note, Zach really wants me to hold her back just one more year in Elementary School so they can both start Middle School at the same time.  In two years for the first time ever they will both be in the same school - another positive in the pro column on my mental pros/con list :)  For now, I'm going to really make a conscious effort to enjoy the last couple of months of our current norm and worry about the rest when the time comes!

Wednesday, February 19, 2014

Another Round Of Intensive Begins!

Monday started another round of intensive physical therapy.  It's worked out with Aaron's schedule that he's been able to take Alex and her nurse Tammy to therapy while I go to work.  Tammy's been sending me pictures so I feel like I'm there with some funny captions --  it about broke my heart to get this first one though.  She looks so scared and unsure and I wanted so bad to be there in front of her to cheer her on.  Her surgery was two months ago and on top of the incisions that she's had to deal with, she's grown...AGAIN.  I'm so proud of her and happy to say that she totally pulled it together and gave 100%.

She has muscles she hasn't used in SO long so this intensive has to be just that, INTENSE.  So after 3 hours of therapy, she was less than thrilled with me and Tammy when we put her in her stander after she got home and ate her lunch. Being in her stander is really imperative to getting her and her glutes and hamstrings to facilitate properly.  Alex still refuses to put any weight whatsoever on her legs so the stander is an integral part of that. 

When Alex woke up this morning she was all smiles as usual.  She stretched a little and winced a little bit and I fully anticipated that today was going to be a battle but I could not have been more pleasantly surprised when Tammy texted me that she was having a phenomenal session and she had not fussed one time and was all smiles.   She rocked out another session and only started to fuss when her daddy walked in and she felt like she needed to put on a show :)

Oh Shannon!  I have just mastered cage therapy 101 and now this?!? 
In true Shannon fashion, she was trying to facilitate and isolate certain muscles and this is NOT a typical cage exercise.  In fact, no one has ever quite seen a set up like this before :)  Shannon knows what Alex needs and she 'Magyvers' whatever she can to achieve optimal success.  She constantly thinks outside of the box and is not afraid to take the initiative to do what needs to be done or go into uncharted territories. 

3 days down, 12 more to go - we have SO much to gain in this intensive and I'm SO anxious to see where we are going to be once we are done. I am praying, praying, praying that Alex is going to be able to support her own weight and that maybe, just maybe she'll be able to be in her walker taking some really purposeful steps. 

Friday, February 14, 2014

Tube Feeding Awareness Week

One year ago I posted this to Facebook as my status update:

I remember a few years ago when the Terry Shivo case was being highly covered in the media a local radio DJ said that it was his opinion that anyone who needed a feeding tube was a waste of space. I remember being completely floored at his ignorance and feeling so depressed about if for a few days and then REALLY mad!  Here's hoping more people become educated on feeding tubes through awareness...this beautiful face is definitely not a waste of space - nor are any of her cool 'tubie' friends!!

Alex began having feeding problems when she was roughly six months old but she was able to still suck from a bottle so we weren't overly concerned and thought we would have time to figure things out and come up with a plan to get her eating solids.  A feeding tube came as an added bonus (insert sarcasm there!) when we were admitted to the Pediatric Intensive Care Unit for a virus, which led to dehydration and subsequent seizures and she lost her suck/swallow coordination.  I had absolutely no clue what a feeding tube would mean - and honestly, it wasn't until she actually came out of surgery that I was able to fully digest what it meant - I was so naive back then - I remember thinking, OK, we'll get this tube thing for a couple of weeks (we were in the hosptial almost 5 weeks)  and once we get her better and really work on getting her to eat we'll be good to go. 

And....here we are 11 and a half years later!

I really wish I had known before hand that she was going to have the tube surgically inserted.  I only have 2 pictures of her little baby belly without a tube. 

Having a tube and tube feedings is all Alex knows - and clearly from her laid back self here having her 'breakfast', she's pretty much OK with it :)

I love this picture - with her pump in the forefront and her sticking her tongue out - I like to think that she's sticking her tongue out at that DJ!

And then finding it extremely funny that he could possibly think her sweet, beautiful, happy self could be a waste of space!

So, Happy Feeding Tube Awareness Week!


Sunday, February 9, 2014

Basketball, Basketball, Basketball!

I think it's safe to say we've become a basketball obsessed household.  If we're not at a game, we're watching one on TV.  This weekend we were at 5 basketball games.  Zach had a game Friday night at 8PM - it was too late for Alex to go so only Aaron went, but Zach's team won - way to go Duke :)    Saturday morning Alex had her last game of the season and the end of season party.  I LOVE, LOVE, LOVE River City Buddy Ball and what it means to/gives to Alex so it was bittersweet for me.  When they say a picture's worth a thousand words, well...

...this is what Alex loves, this is where she shines, this is where she can be herself, this is where her friends are, this where we all walk in with a grin and walk out with the biggest smiles on our faces.
We have SO many people to thank for River City, but one in particular is Kate - there are SO many people who make up River City but none of it would really be possible without her vision and dedication.
And just like all of the sports pictures all of the other athletes get to take, Alex got her own basketball picture (well, this is the one from my camera, but you get the 'picture'!)

We were getting ready to leave and Alex had a few more stares of adoration for one of her favorite buddies who volunteers all of his Saturday mornings to running her and her bud Jonathan up and down the courts - so thank you Mr. Steve for all that you do!!

While we were at Alex's last game we were talking to one of our other River City Buddy Ball friends, Bob, who happens to know just about anything and everything there is to know about basketball and also happens to be a coach (to put it mildly) for the older kids in the league that Zach is on.  When we told Alex that morning that it was her last game of the season she gave me a little bit of an attitude and I shared that with Bob when we were talking about Alex loving the program and loving all the free 'flirting' she gets with her buddies.  Without even skipping a beat Bob invited Alex and Zach to his game that evening at the local Middle School.  Alex was going to be an 'honorary VIP', and Zach was going to help 'manage' the team!

The team so welcomed Alex with open arms!!
  Thank you Western Kentucky!!

I can't even begin to explain how great they were with Zach.  Zach received his very own jersey that he got to keep - which just happened to be number one...AND they included him in every single aspect of the game - from the opening 'strategy' talks...

...to the court side "VIP' seats they both had...

to including him in 'free throw' practice...
...and team huddles

...and team handshakes!

...and team strategies...

 We may have 'suggested' to Zach that it would be kind of funny if he mimicked everything Bob did since he was "managing " the team with Bob and I have to say, he didn't disappoint :)


I love how Zach is truly 'looking up' to Bob in this picture and hanging on his every word.  Zach left that game even more on fire for basketball than he already was, if that's even possible!  He kept talking about how great the team was - did we see the fist bumps the team gave him? Did we see how they asked him questions about his favorite teams?  Did we see how they included him?  Did we see how he got to see team plays? Did we see him get to practice free throws? Did we see this, did we see that?...I am THRILLED to report that Kentucky won - so remember your promise at the next practice coach - take it easy on Alex's new friends!  Zach was in his GLORY...thank you Coach Bob and Western Kentucky :)
I love our basketball family - I love River City Buddy Ball, I love our community involvement.  We feel REALLY blessed that we were given this opportunity and so thankful that we were able to share it as a family.  Thank you River City, thank you Kate, thank you Bob!  You made us feel so special at this game and we truly cannot thank you enough.

Alex thanks you too!
For all of our Richmond friends, PLEASE consider coming out to support River City Buddy Ball at The Barrel Thief on Tuesday, February 25th from 6:00-8:00!

Tuesday, February 4, 2014

Rough Week

The last week has been a rough one for me from a parenting stand point.  Not just dealing with my special needs child, but my 'typical' child. At the end of the day I pray really hard and just hope that I am making sense to a 9 year old when half the world doesn't make sense to me.  There's no other job I could possibly take more seriously and there's absolutely no greater love than a mother's love for her children.  I pray I'm leading him on the right path.  I  pray that when he looks back on his childhood he smiles and realizes how incredibly loved he is.  I pray he knows his parents love him "to the moon and back" and always will, no matter how old he gets.  It's a pretty huge weight parents have to bear hoping and praying they are guiding their kids in the right direction at all times and sometimes, it's just plain scary - not to mention exhausting! 
Miss Allie Bean is so happy to be back at school this week.  Unfortunately I'm back to having a lot of concerns about her legs.  It seems to me that she is worse now than before the surgery and that we have gone in the opposite direction - she refuses to put ANY weight on her legs, zero.  We have been doing more stretches, exercises and standing than we have ever done, I've had her in her stander, her bike, her walker and she's wearing those god awful  hound dog braces for hours a day and it's just not making a difference.   I'm afraid sometimes when I'm trying to transfer her that I'm going to hurt her because she's 100% dead weight and sometimes she catches me off guard when I'm trying to maneuver her.  This weekend I wound up in the emergency room myself with an issue with my knee - the whole time I kept thinking I don't have time for this!  I can't have anything physically be wrong with me, I have to be able to lift her and  I have to be able to fire on all cylinders! 
We have been going to physical therapy twice a week since surgery and in two weeks we will be starting another round of intensive physical therapy - we will take her out of school and she will be at physical therapy for 3 hours a day, five days a week for three weeks.  I spoke to Shannon today at her therapy appointment and she  put some of my fears to rest - we still have a LOT of work to do at home, but Shannon said she's gotten so tall, and the fact that she's basically been in casts and immobilizers since the summer has done great things to stretch her but has definitely hindered her in being able to find her quads and the muscles she needs to help support her weight.  It's SO hard to try and look at this big picture.  I'm such an instant gratification person and we have been through a lot since her surgery and I just want to be able to stand her up, have her support some of her weight and know that the surgery has been a success.  The surgeon did say it could take a year to see the full benefits, but we are almost two months post op and I haven't been able to see one iota of a benefit.  I am SO thankful that Shannon did look at this big picture and had scheduled her for a round of intensive - my hope is that the constant repetition every day at physical therapy is going to be just what she needs - and if anyone is going to whip her legs into shape, it's Shannon!

We teased today that I should put in Tammy's (our nurse) job description that one of the benefits of working with Alex is the full gym membership....you lift weight, do squats, get great cardio lifting her in and out of her chair, etc :)  I love that everyone on "Team Allie Bean" has a GREAT sense of humor - it is true that sometimes laughter is the best medicine!!
 Today Alex had a pretty good therapy session - for one, she didn't scream through the whole thing - progress :)  She did some supported standing with her new braces on, but for the most part she got to have a lot of fun bouncing on a ball trying to find her center and pushing herself up using her legs.

She was VERY expressive during this session and it was so fun to interact with her.  It pains me to look at some of these pictures and see how skinny her tiny little legs have gotten.  We definitely have our work cut out for us....

 ...but everyone on Team Allie Bean is up for the challenge!