Life as a Leach

This is my new shirt and it has never been more true.  The last few days have been filled with phone calls, paper work, scanning documents, and faxes.  We have prayed about our decision, talked to Abby's pulmonologist, weighed the options, and cried.  There's no great answer, and our pulmonologist recognized that.  She was quick to acknowledge that we have had to make hard decisions for Abby before and we have always made the right one.  She did echo a lot of our concerns and validated our feelings on the options, which helped us to make a decision. 1.  We are going to meet with Dr. Lenke at Columbia University Hospital in New York City.  There was a 14 page application (yes, I said application ) and I had to request all of Abby's medical history related to her spine, as well as her most recent CTs, MRIs, and Xrays be sent to them.  Once all of that is received and reviewed by Dr. Lenke's team, they will decide whether or not they will accept Abby.  If we are able

I love this song.  This is what I strive to do.  I'm far from perfect and the scratches on my hand from a panic attack are a visible reminder that sometimes my anxiety gets the best of me.  The last few days have been tough, but today is a new day.  I count on one thing The same God that never fails Will not fail me now You won't fail me now In the waiting The same God who's never late Is working all things out Is working all things out Yes I will, lift You high in the lowest valley Yes I will, bless Your name Oh, yes I will, sing for joy when my heart is heavy For all my days, oh yes I will I count on one thing The same God that never fails Will not fail me now You won't fail me now In the waiting The same God who's never late Is working all things out Is working all things out Oh, yes I will, lift You high in the lowest valley Yes I will, bless Your name Oh, yes I will, sing for joy when my heart is heavy For all my days, oh yes I will For all my days, oh ye

We went to CHOP orthopedics today and are still reeling from all of the information.  I'll do my best to explain everything, but I'm still processing myself.  When Dr. Anari came in, he didn't beat around the bush.  He told us he had spoken with the pulmonologist we saw last week and that it's obvious we are seeing a decline.  While the kyphosis looks to be about the same on the xray, there could be subtle changes that could be pushing Abby over the edge, so to speak.  Then he proceeded to tell us that Abby was one of his top two or three patients in terms of difficulty, complexity of the chest wall, and high risk.  Everyone has to be good at something, right?  😒 He laid out 3 options for us to consider. 1.  This is the most aggressive option.  Abby would be put in a halo for several months, then she would go into surgery for a removal of a section of her vertebrae.  It is called a Vertebral Column Resection and you can read about it here. She would have to be

Oh CHOP... We have had an ongoing disagreement with CHOP orthopedics over which pulmonologist we should see.  We adore our pulm at Hopkins.  She has been with Abby since the beginning and really gets the whole picture.  She truly cares about Abby and we feel like she always has her best interests in mind.  CHOP ortho really only seems to value the opinion of their own pulmonologist with the Center for Thoracic Insufficiency team.  We have nothing against him!  He is a very nice guy and very knowledgeable, but we see no need to switch pulmonologists when ours is wonderful and 2 hours closer.  We don't care for the attitude of superiority we sometimes feel at CHOP and feel like all of her doctors should work together to give her the best care possible, no matter where they work! (Not to mention, Hopkins is not a two bit hospital!!) With Abby's recent lung decline and us feeling that a surgical intervention is needed, Abby's pulm has been communicating with CHOP to share h