Snuggle time with Eve and JoJo:

Sunggle time with Seamus and JoJo:

This has been a crazy winter.  I'll be very glad to see it go.  We were running out of places to put the snow. 

My in-laws were back up for Jim's recovery.  He's doing so well, by the way.  He's still in pain and gets winded easily, but he's really doing well considering they removed a portion of his lung.  He still isn't lifting Eve, but I'm really enjoying having him around the house.  I could really get used to this.  I think he's bored and doing a little too much sometimes, and pays the price.  On the whole, he's doing great.  His followup with the doctor went well and his biggest complaint is nerve pain. 

belated Christmas post

Wow.  I've really been remiss with keeping up with this blog.  Here are some pictures from our January Christmas celebration with Jim's parents and brother. 

This last picture makes me laugh so hard.  I love Jim's face.  He's in the danger zone. 

You're gonna miss me by my taco

 Here's what he's watching: cups

"Daddy, do you know what spiders are called in real life?  A-RACK-a-nids."

surgery update

Great news!  Jim's surgery went better than expected.  I don't have all the details yet, but they were actually able to do it all by camera (and didn't have to do a thoracotomy).  The sequestration was infected, but not attached to the diaphragm, so it was able to be done by camera.  Thus, his recovery will be MUCH quicker and MUCH less painful.  He should even be able to drive himself to Boston for his follow-up CT scan in 2-3 weeks.  I am over the moon and so grateful for this much needed piece of good news in our lives.  He may come home from the hospital by Saturday.

I'll post more as I learn more.  :)

We're still waiting to hear when Jim's surgery will be rescheduled.  We have a tentative date for three weeks from now.  Jim is doing fine while we wait. 

Eve had her first series of Botox shots in her thighs last week.  It was a very low dose, but if it doesn't seem to help the doctor will increase the dosage until it does.  We have a followup in 3 weeks.  Eve starts physical therapy this week to capitalize on the (hopefully) loosened muscles.  She has been in a lot of pain lately.  She's been having pain episodes about every other day this month.  Also, when we've vented her g-tube (in case she has gas causing pain), we've seen bile in her stomach.  I'm going to call both the GI (about the bile) and the Neuro (about the pain) tomorrow.  We've got a snow day today and the commonwealth is under a state of emergency, so the offices are closed.  I can't explain the weight of my worry for this child.  If ever there was a lesson in life not being fair, this is it.  This poor child has enough to deal with without the chronic pain.  I want to be able to fix this for her, but I'm not sure how. 

I need to schedule her gj tube switch, but it's tricky with Jim's surgery coming up.  Both valves on the ports are blown and leak when you open them to hook her up.  Major pain in the rear end.  They have also popped open by accident a few times and soaked her and her clothes.  Yuck. 

In other news, she's doing great at school and you just can't imagine how well cared for and loved she is by everyone.  There is one classmate in particular who has stolen my heart (because I think Eve has stolen his).  They seem to be partners in crime which is Eve's favorite part I think.  Thank goodness for a lenient teacher!!

Ok.....so there's been a major change in plans. Some of you know that Jim was going to have major lung surgery in Boston today (long story, but it's pretty scary stuff - pulmonary sequestration with complications, risk for aneurism, etc.). He was scheduled for an early morning surgery. There was an emergency at 4am in which his Dr had to operate. So, they postponed his surgery. Then there was a shooting at the hospital. It wasn't his doctor (but I'm not sure if it was one on the team that would be operating on him). He was scheduled to go in next when they shut the OR down. So, they canceled the surgery. They will reschedule in a couple of weeks. He and his parents are coming home tonight. I'm in total shock. Thank you so much for the prayers and well wishes I received today. Maybe you can resend them in a few weeks? Unreal.