11/15 - Update - HAPPY 16 MONTHS EMILY!!!

Today Emily is 16 months old!! That is a big deal for SMA type I kids. She has beaten many odds in surviving this long and we are so glad that we get to be her parents. :)

Today was a little different b/c Emily's right lung showed signs of re-collapsing so her weaning process came to a halt while they raised the settings back up on her vent. She was generally irritated all day long b/c she needed a lot of suctioning and we think her G-tube site is hurting her. It is hard to just sit there knowing that she wants to move around, but she can't. She can physically move, but they have to restrain her little arms so she won't pull her vent tube out. They call the straps "no-no straps." "No, no Emily, don't pull your tube out." She doesn't like them and for good reasons. We try to move her arms and legs around throughout the day, so if you come in to see her we can help you do this too. :) The lung issues for today sorta make us step back a little, so we are not sure exactly when we will be able to get her off the vent, but we are hopeful that it will be soon. I'm not sure exactly what I meant by that, but we really just hope that she gets over this and we can go home soon. Annabelle misses us and we miss being a complete (minus 1) family again.

NEWS FLASH!! We are now staying in the Ronald McDonald House (RMH). We are no strangers to the amazing accommodations provided by the Hamburger King and we are blessed to be served in this way. They make these places just the way families need them when they are dealing with situations like ours. We'd love to help a local RMH some day when we are able. Community members provide daily meals and stuff for the residents. It's pretty neat. We will have a room here for $15/night for as long as we need it and there is FREE parking and a FREE shuttle to/from the hospital nearly any time we need it. What a blessing.

Thank you again for the calls, visits, gifts, prayers, and meals. We have an incredible support group (again, you all) and we are a blessed family b/c of you.


Viv said…
Dear Emily and Family, I am one of Emman and Jade's prayer warriors. Just wanting you to know you all are on our urgent prayer list. My Mom, (Emman's Great Aunt Nora Lea) is also in constant prayer, all through the day. Be brave. Sending you strength and love.
Emman's Cousin Viv Benedict