Tuesday, July 17, 2012

Watch out!

This kid is stealing hearts left and right.  Yours is next :)  Just look at Ty today.  AHHHH!!  I love him so much I want to eat him!  I know I'm his mom, but anyone would agree.  Right?  That smile makes my whole day happy. 



 
Ty is doing well.  He hates coming here every morning, but after his treatment he always looks so good.  We go home immediately for a day jam-packed with therapy, and he has a lot of energy which is wonderful.  I was afraid he would be tired after such a long morning every day, but it's the opposite.  If he isn't being entertained every minute, he yells at us from the couch, "I'm bored!"  It drives me crazy, but on the plus side... can you believe I can hear him from across the room?  He is getting so much stronger, and that includes his voice.  On occasion, I even catch him trying to sing again.  It's beautiful. 

Ty's physical therapists works on something new every day.  One day Ty had to work on shaking and nodding his head "yes" or "no" so communication can improve and he's getting there slowly.  Shaking his head "no" is happening faster than the nod because his head is too heavy/neck is too weak for the up and down.  FIGURES!  Haha.  Other days he is forced to sit more upright in a special support chair to improve his core body strength.  She works on his legs, where the greatest motion is seen in his inner thighs because he can bring his knees together slightly.  Before she started doing this with him, I had no idea the ability was even there.  Yesterday she taught him that he can hold onto some of his lighter toys if he "hugs" them to his chest.  All of this helps Ty to regain some confidence.  It is exciting to see.  Speech and occupational therapy is coming along great, as well.  He really loves them coming to the house and often says things like "I wonder what they gunna bwing to pway wif today!"

One of the most discouraging factors in this entire process has been getting Ty the appropriate equipment so he can continue recovery at home.  We have ordered all of these items through our insurance three months ago, and still they haven't come in.  Lou can't even get a call back, and we are told this is the norm.  For example - Ty sits on the couch propped up with pillows that we are constantly fluffing and adjusting to keep him comfortable.  He still hasn't received his wheelchair.  There is a device called a "stander" that is used to make sure his leg muscles remain activated to avoid atrophy.  Considering the fact that every one day spent immobilized in a bed can mean one week's worth of muscle depreciation, this is imperative and it is an immediate need for kids like Ty.  Three months wait time is simply too long, the atrophy started setting in before the device was even ordered.  Three months!  For an individual suffering a traumatic brain injury - the first three months of recovery are the most crucial.  By the time the equipment arrives, the individual's needs may have changed!  What a mess.  Thank God we already owned a bath chair and a few other items that we purchased with the money raised through Ty's fund to avoid this disgusting, inexcusable wait on some levels.  This is not just our experience.  This is what happens to everyone in similar situations and I am horrified by it.  Who knew?  These are children who need wheelchairs!  Toddlers who are in pain without the necessary equipment! I could go on and on. 

But, I digress.  We have had some fantastic thunderstorms over the past two or three days.  I love a good thunderstorm.  The mysterious crackling, the loud boom, the house shaking and the flashes of lightning.  How come something so loud and intrusive can be so calming?  I thoroughly enjoyed it. 
The heat, however, has been brutal.  I had to cancel my run this morning - boo hoo :) - and instead I picked up People magazine to read with my coffee!  A favorite pass time of mine that I used to enjoy every single Friday, but these days it's more like never.  

I just realized that I don't even enjoy it anymore because I can't read about stupid Kim Kardashian (or whomever) without becoming disgusted with some of the ridiculous quotes.  I was reading about Katie and Tom's divorce just now and thinking - "Really?  Am I supposed to be sad or surprised about how hard it might be to decide who gets the $30 million mansion?  They should sell that indulgent waste of space and donate the money to pediatric cancer research because it can happen to Suri.  Pediatric cancer isn't selective and it can't be prevented - even if you're a scientologist - but people like you can help change that!!!"  Ugh - I just turned the page and saw an article about Casey Anthony and now I have to just close this and throw it away.  Online shopping will be a much better escape for me.  This magazine is only making my head spin.  So much wrong on so many levels.  The gluttony and self indulgence makes me embarrassed to be human.

I digress even more!  Sorry!  A good gossip column is nothing to be embarrassed of.  I enjoy celebrity news myself and will step down from my soap box now.    I hope you all have a wonderful day.  Time to pick up Ty and drive home on this beautiful day. 

8 comments:

  1. Cindy, I couldn't agree with you more. Those kind of thing drive me crazy too. I am glad to hear that Ty is doing well and I hope you get the equipment you need soon.
    Keep your chin up! We are praying for all of you!!!

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  2. I like the sound of your voice.. Your spirit sounds good and even though things are not where they need to be, we know that you are key to this moving forward. His smile is BEAUTIFUL just like his mother's.

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  3. oh, AMEN! Totally agree! TOO much Money being wasted and what a shame, could be used to fund research and new drugs. Cancer should Never attack our precious children. Your love and compassion is an inspiration for us all. your blog and your life is so similar to a family here in Texas that I know who just had the loss of their 4 1/2 yr old son from a brain tumor ( DIPG ). God Bless Ty and You and his whole family! And, pray that All the celebs who have Money to Squander, will be touched and donate lots of their money to cure Cancer!

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  4. oh, AMEN! Totally agree! TOO much Money being wasted and what a shame, could be used to fund research and new drugs. Cancer should Never attack our precious children. Your love and compassion is an inspiration for us all. your blog and your life is so similar to a family here in Texas that I know who just had the loss of their 4 1/2 yr old son from a brain tumor ( DIPG ). God Bless Ty and You and his whole family! And, pray that All the celebs who have Money to Squander, will be touched and donate lots of their money to cure Cancer!

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  5. I have been reading and praying for Ty and the your family for a few months now. I happen to know a family that has an organization that helps children in need, receive the equipment they need. You can view their web site at - http://www.helpingfromheaven.org/.

    Feel free to reach out to them - they might be able to help Ty!

    Much hope,
    Jennifer (IL)

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  6. It disgusts me to hear how much work families in real need must do to get the things they need - all those years paying in to insurance that you didn't use, and now when you do - they play these games. It disgusts me. I know that there is a fund for Ty and that you've been able to use some of that money for the things he needs. But in terms of the wheelchair he needs - can you find out the costs and put out a call to ask people to donate just to this?? You have to know that people will come together to get Ty what he needs. No one wants to see you guys battling an insurance company when a group of people coming together can get him what he needs without the red tape/headaches or paperwork!!! And if it's not a wheelchair and it's something else that's vital to him right now - ask for funds to help purchasing that. You don't know me but I am NOT shy about asking people to help out for a good cause.

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