Update on Matt... Mad Love Boy.

This is a message sent form my niece/Matt's primary advocate, and it is so GOOD!  I adore the fact that he flared his nostrils at the smell of coffee!  That's our boy! WHOOOT!


Matt's doing pretty well right now. He was alert and awake most of the day today. He got a lot of stimulation and didn't seem to tire of it as quickly as usual. We have been exercising his arms and hands, giving him different things to smell (coffee, dryer sheets, peppermint, etc.), and of course talking to him and playing music. He was really good about focusing on the person talking to him and he did a lot of mouth movements in response. He flared his nostrils and moved his tongue out for the coffee beans, and I hadn't seen his nostrils do anything until then. His face was a little more expressive and his mouth movements look more like words are being formed, although we still can't understand anything. He has also been moving his left leg voluntarily.

He was scheduled to have surgery on his spine tomorrow morning, but as of this moment it looks like that will be postponed. He had a fever Thursday afternoon that spiked pretty high (103.8 at the worst), so there was concern about infection. Since then, the fever has been under control and his white blood cell count hasn't increased. They even removed some white blood cells, tagged them, put them back in, then did a white blood cell scan to locate the tagged cells. The results didn't reveal an infection site. If they decide to go forward with the surgery tomorrow (or set a new date/time), I'll send a quick update

Watching and wating

It's odd how when someone you love and are so very connected to is in a state of suspended reality...  You go in and out of some kind of self preservation Buddhist induced detachment, living your life as best and earnestly as possible, but it's always there.  

Then, flash back to reality moments.  Convince yourself all over again that yes, this HAS happened and IS going on despite the reality of your day to day... which in your mind, you can convince yourself that it hasn't happened because your life, your child and your husband require you to remain present and attentive.  Everyday.  Then there are the moments when you get some down time, and it comes back like some kind of strange flashback and then you have to realize again, that yes, this is not a nightmare and you are awake.

Meanwhile, my son is learning his multiplication tables by watching PBS and playing their computer games.  We also play lots of board games and games that he makes up. (Yea, he's pretty brilliant)  He made up a game where there are 4 different colored crystals (actually they are magic markers)  Each one represents a different power.  

"One contains the power of love"

"One contains the power of slowing down"

"One contains the power of going fast"

"One contains the power of water"

In order to get the crystals back to their rightful places and release their special powers you have to perform certain tasks.  For instance:

Put together a puzzle

Win a race (Sometimes they are slow races)

Win a board game

Win a memory game

Each task places a respective crystal (marker) in it's rightful place.  When all for are placed, you win!  Easy peazy.

Then it's back to waiting for news about Matt.  Checking my computer for the update emails.  This is what's going on.  Sometimes we swim or go shopping or do laundry.  And then I wait some more.  

This is the last message I received from my niece on Weds. after Matt got is tracheotomy.

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"Matt's out of surgery and it went well. Yay, Matt! Yay, surgical team!

He now has a tube in his neck instead of his mouth, so he'll be more comfortable. All his vitals look good, and he's sedated. He also finally gets to "eat" his vanilla protein drink after a long day of no food. (Why is it vanilla if it goes straight through a tube in his nose and into his stomach? I have no idea.)They removed the collar around his neck for the surgery and apparently now it can stay off. They will continue to monitor how his brain is progressing daily using a transcranial doppler. It's a very cool thingamabob that basically works like an ultrasound. If Matt is in good enough condition, his neurosurgeon would like to replace the skull and perform surgery on Matt's dislocated thoracic vertebrae next week.Thanks for all the support and positive energy.Love and hugs"

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So that's it.

Thanks to everyone who has left sweet comments or emails or remembers Matt in their prayers.  It means a lot to me.  

One of my wishes today is that everyone take a deep breath and take in their reality.  Love what is and who is in their lives and indulge completely in his/her conscious experience of now and enjoy the living hell out of it.

Peace.