Wednesday, May 30, 2012


Well we went and we spoke with the team that would be doing Sky's surgery. We found out he would not be able to have any food for 24 hours, this on top of the 15 hour fast he was doing for the surgery and the day before he fasted for 8 hours for his upper GI. This was not ok with us or our doctors once it was pointed out. So we are in process if making a plan for sky one where we go in for two days the first day is to get an iv so he can have tpn (a special type of food) and the second day he will have his gtube surgery. This will is a much better plan as fasting is so hard on kids with SMA. And the surgical team is happy to have me do all of Sky's transfers, so I will be the only one moving him, I know how he moves and this should help limit the risk of any fractures. So now we wait for a day to open up and we will head back in. It's been a crazy day, ok a crazy two weeks, but we feel much better knowing we have a plan in place for the best care for our Sky bug!

Tuesday, May 29, 2012

Tomorrow is the big day

Say a prayer for Skylar and the team that will be doing his gtube surgery tomorrow. Sky will go into surgery at 11:30 and should be out of recovery by 12:30. I've got almost everything packed and ready for our over night stay. Here is a pic of Sky getting ready for his upper GI today, which went great.

Wednesday, May 23, 2012

Our children's visit

Sky has his first apt of three yesterday he saw PASS clinic for his peg placement next week. The apt went well. Friday we go in for his upper GI and then we get to enjoy a nice long weekend (: Wednesday we head back to children's in the morning Sky Gtube surgery is scheduled for 11:15 and it's a 15 min surgery with a 24 hour stay I'll be sticking to my little man like glue!!!! So we have been crazy busy and we will be busy with aprs almost all summer (or so it feels). Here are a few pictures of the dude yesterday while waiting for his apt.