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.