Storm of the Century!...

Thank you for the kind and supportive comments and emails many of you sent my way after my last post.  It has been an overwhelmingly stressful month.

Last week, Ed had his first business trip with his new company. He hasn't had to travel since he started with them about a year and a half ago.  He was gone for about three days and I had forgotten just how much I miss him when he's away!   Gavin definitely missed his Daddy. 

They are such good buddies!  

And Brian was SO excited when he got home - especially when he saw that Ed brought him a big Wegman's truck!

This boy loves Wegman's.  He has been filling up the truck with his play food and delivers it to each store.

This weekend we attended a first birthday party in our costumes!!  Our friends, Drew and Melissa (remember her beach themed baby shower??) celebrated the fastest first year on record for their sweet son, AJ.  We all had a great time.

I made the executive decision to not keep Gavin in his wheelchair and I let him down to explore the house and play with the toys that were out.  Drew and Melissa have pets, which were upstairs and away from everyone, but I hated to hold Gavin back from the fun.  Turns out I made a bad decision.  Within a half hour or so, Gavin's face and neck were filled with welts and his eye was puffy and swollen.  I felt horrible!!!  Our first thought was - we all need to go.  But I turned and looked at Brian, who I knew was so looking forward to cake and games and presents, and I couldn't do it.  Ed was the hero.  He took Gavin home (5 minutes away!) and gave him a bath and some Benadryl while Brian and I partied it up.

Watching Brian at the party got me emotional several times.  It was the first time he ever played "birthday party games" like swinging at a pumpkin piñata... 

being blindfolded to play "pin the face on the pumpkin" and more.  He listened to the instructions and waited his turn and was so excited to decorate his own "goody bag."  All totally typical things, so you're probably wondering why I was so emotional.  But that's just it - it was all totally typical.  I don't take that for granted.  Not one bit.

Today has been spent getting ready for what they are calling the "Storm of the Century."  Hurricane Sandy.  Thanks to Hurricane Irene last August, I'm feeling a little more prepared!  Oh man - how could we forget Hurricane Irene.  We had to turn around at the airport and cancel our trip to the Bahamas.  Then we had an earthquake.  Then we decided we'd drive to Ocean City, Maryland... only to be evacuated because Irene was about to arrive.  We got home - and she did arrive.  And flooded our basement.

They are telling us that Hurricane Sandy will be worse than Irene.  Ed worked all day to bring in all the outside furniture - put the grill in the garage in case we need it to cook - move things in the basement in case we get water - and transfer all the freezer food to one big freezer in the basement.  We feel pretty prepared.  The only major thing we worry about is Gavin.  We need a microwave to heat up his pureed food!  Ed has the local Hilton on speed dial.  Just in case.  He was definitely the superhero today!

I was no help at all.  I woke up in crazy pain.  My knees were throbbing... my muscles and skin were burning and tender... my hands and wrists were barely functional... even my shins hurt.  My shins!  What's that about??  I'm praying - hard - that I will start to feel better soon.  Dr. Trish is making headway with me - but she has a big ol' mountain to climb.  And in a few weeks I'll be starting the IV infusions of Orencia.  Something has to give - I really need to start feeling better.  I can't imagine that it can get any worse!!

If you are in the path of "Sandy," please be safe!!