Easter weekend & Monday update

I love this banner that hangs at church.

Our neighbors dogwood trees...so beautiful!

It is so hard to get Shayla to dress for church.  I recently had to ban jeans!  I told her no more jeans--so Shayla found this dress to wear for Easter & I bought it....we all followed along with the purple color.  The color suited us well.  Honey would have been happy with this color too.

photo by Shayla...need I say more??!

oh Hayden....this weekend has not been kind to you.  What you cannot see are Hayden's hands....they are clenched tight & his wrist are bent inward & he is barely sitting up by himself, & there is a HUGE knot on the back of his head from falling & he cannot feed himself nor hold a cup....there is something majorly wrong.  While Hayden checked out 'clinically normal' on Thursday with the pediatrician, we KNOW this isn't our Hayden!  His seizure activity is all over the place.  We have been in close contact with Hopkins prior to Sunday & emailed again late Sunday night.

A ray of hope...beautiful flowers to brighten the day!

It's been a rough weekend. I will not lie. We have s-t-r-u-g-g-l-e-d with Hayden's epilepsy & the ketogenic diet.  Hayden is mostly like a limp noodle....he has no energy, he has regressed in so many areas....it is been challenging.  We have been tag teaming 1-on-1 with Hayden protecting him from injury.  We have several emails in to Hayden's medical team---hopefully tomorrow we will have some answers

Brown family Easter Sunday 2011

Easter was a little different this year.  Shayla is growing up.  She didn't want to do colored Easter eggs....so we didn't.  It seemed strange not having dyed fingers & dozens of eggs floating around. The weather was warmer--yeah, the sun was out--yum, loved soaking up the sun & the day was longer--thank goodness!  She has enjoyed being off from school for a couple of days.  Now's it time to figure out what Shayla will do to fill her days once school is out.


Monday update---

Hayden is no longer on the ketogenic diet.  We received word from the neurologist at Hopkins in charge of the ketogetic diet to stop the diet ASAP late last night.  We are frustrated....we have tried many medications, had the VNS implanted in Hayden's chest & now the diet failed...are we back to square one??  Heck if we know!  Right now we are awaiting UVa to call with a bed assignment.  The child neurology team wants to admit Hayden for observation & 'tune up' purposes.
My head is spinning!
More later!