Sunday, March 10, 2013

Day 10- PM

The super hero carnival was a lot of fun. It was to support the "Alliance For Kids". I wasn't familiar with this oganization prior to our recover at St. Mary's Children's hospital after Em's surgery. What I can say after today and learning a bit more of what their organization is about, is this- it is top notch! I need to thank the organization, all the volunteers, local law enforcement and the hospital for all that they do to make this such a special event. To give you an idea of the day, Em, Teagan and Grace played so many games they came home with trash bags full of quality prizes. They had a bunch of activities such as sand art, painting, build a bear- just to name a few, that could have kept the kids busy of hours. Visit the following site if your interested in a little more of what they are about:
After the carnival we planned a little cook out at our place with Em's BFF and her folks. I can only imagine that Kevin and Mandy agreed to come as a sort of birth control as it was mayhem as usual at the OBrien house. We couldn't be more grateful to them for continuing to share their real world experiences with us and help guide us down this unknown path. A true example of paying it forward. Thank you as I'm unsure how we could have got this far without you.
Special guests arrived tonight!!! Mema, Boppa and Auntie Amy! It was great for all of us to see them. Em was disappointed that they weren't sleeping over but I reassured her that they will be soon enough! We look forward to seeing them often over the next few weeks!
I turned Em's struts again tonight and I now know that it hurts. I thought doing this while she was asleep would be a process I wouldn't have to stress about but now don't believe that is the case. I may revert to turning a few struts at a time throughout the day, as Emmy wakes up from a dead sleep saying it hurts. Thanks to Kevin for this tip, as I've been given no information besides a black and white schedule that was emailed to me. Although each pin is numbered, the color coded band and corresponding schedule would make this easier had I received this in color. Something I'lll need to address at our first doctors appt, which we were told was every 2 weeks (this Thursday) but will need to confirm that on Monday. Overall a great day. My only concern at this point is getting an infection at a pin site which I'm quickly understanding is an everyday worry for all. The information that we have received on pin care is minimal and conflicting at this point but we continue to seek information from anyone willing to provide it to us, listen to all the advice that has worked for others and pray for the best. It feels as though you are graded on your parenting skills by these damn pin sites without having a true definition of what is right or wrong. Frustrating but we are surviving and just hoping for a good report card at this weeks appt!

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