At 6 Weeks Post Surgery

It's amazing that it has only been six weeks since Byron's surgery.  He is doing so well it is quite remarkable!  We have not seen any evidence of seizures which is amazing in and of itself, but Byron is SO much more present, alert and happy.  I imagine that, for him, there was a constant static or interference going on in his brain due to the malformation and spiking occurring almost constantly in his right right hemisphere.    Now, with a quiet brain, he can connect more with his heart, his good feeling and hopefully his intellect.  We have had a hard time getting the tutor here, she has missed two weeks already, but she is scheduled again to come on Monday.  I hope to hear from her that his academics are improved as well.  Byron has told us in the last two years that he "hates" school. I believe this is because, once the seizures started, it was simply exhausting to focus.

Here is a little video interview done today:

Lyme Disease

There has been an interesting development on Byron's health front.  Last week Byron was complaining about stomach pain and headache.  It was so severe that he was sent home from school. He has had stomach pain like this on and off for the past 6 - 12 months.

After it continued for two more days, I decided to take him to the doctor.   His regular pediatrician wasn't in so we saw the pediatrician that is also an infectious diseases specialist.  I encouraged him to give Byron a full blood work up which Byron hasn't had for several years.

They took at least 10 vials of blood (Byron was a trooper!) They tested for a large spectrum of possible issues including Chrons, irritable bowl, liver and kidney function and several tests for Lyme.  So far all have come back negative except for Lyme.  It turns out Byron has full blown Lyme disease - and has for at least 6 months.  For those who know this is the result:

IgG and IgM antibodies by Western blot 

• Positive IgG and negative IgM – Lyme disease confirmed

Now Byron will be on oral Amoxicillin for one month.  I hope this is really the right med for this.  We'll see.  

But the thing that makes me go hmmmm..... is that neurological symptoms, including seizures, can be a bi-product of Lyme.  Of course Byron is already predisposed to seizures due to the hemiplegia -  but wouldn't it be interesting if when we get the Lyme under control, the seizures go away.  

I'm not even sure how we would find that out, another EEG test with him off his seizure meds I guess?  Anyway - poor poor Byron.  The sweet guy can't get a break.  But maybe, just maybe, there is a hidden blessing in this new development.  I'm guessing I may be the only person on the planet who sees Lyme as a possible blessing!  

Center for Discovery and a Great Therapy Day - Yay!

We are so fortunate and grateful to have a world class health facility for medically challenged adults and children right here in Hurleyville.  It's called the Center for Discovery.

Byron has been receiving excellent Physical Therapy, Occupational Therapy, Physiatry and Dentistry at the health center since 2012.

Today he had an excellent session with his therapist Lindsay on bike riding. Notice the two hands!

The center has an amazing campus with biodynamic farming practices to feed the folks who are in residence there. All of their buildings are Leeds certified which is the highest green building certification you can receive. 

They bought our friend Ajit Bond's house and turned it into another great farm

They have a very progressive philosophy about food - They have a Department of Nourishment Arts.  This is one of their trucks:

They are also renovating the hamlet of Hurleyville adding many exciting shops and encouraging others to join.

This is the Makers Lab which they hope one day will be the largest manufacturer of 3D printed prosthetic limbs.  Many of their residents will work here.

The old Sullivan Dairy - they like to use nifty colors.

A great bakery and market

Future sight of a large movie theater and dance studio.

These two buildings will house an art gallery and store

Cool church building

And a nice GastroPub! - The Pickled Owl

Byron insisted on being in ALL the photos!

Children Have Strokes More Common Than Thought - ABC News

Chidren Have Strokes More Common Than Thought - ABC News

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A new research study came out today that's hopefully bringing awareness about pediatric stroke. It even reached the mainstream news this evening.  This media attention is so important because many children who have strokes are not diagnosed right away, missing crucial therapy time. Byron's stroke was diagnosed at three months and so therapy could begin immediately.

To see this you have to click on the link, not the header.