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...

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 abo...

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 communicatin...

Dear Abby Joy, Once upon a time, your mom was a blogger who wrote almost every day...life has gotten away from me, but I figured what better day than your birthday to start blogging again?! Nine. Years. Old.  Where did the time go??  I still remember every vivid detail of your birth day.  After only being released from the hospital two days before, I started having contractions that didn't stop after I took my medication.  Daddy was at a meeting at the church, so I called Uncle Bruce to take me there and pick up Caleb.  He was worried about my water breaking in his police car, so he made me sit on towels!  We met Daddy, then he raced up to Baltimore to the hospital where you were to be born.  You were determined to come fast, and the doctors scrambled to get everything set up that you were going to need.  We thought you were going to be born on October 21st, the way things were going, but you waited until just 12:12 a.m. to be born. You flew...

After months of cleaning and selling household items, my grandmother's house is for sale.  While we are thankful to still have her with us, she can no longer live by herself.  It was time to sell it, but that doesn't make saying goodbye any easier. Next to my own house, I spent most of my time at "Mommom's House."  I stayed there on inservice days when my mom had to work.  My sick days were usually spent there.  When my parents went somewhere on a date, I went to Mommom's.  I loved every second I spent there.  I have SO many memories in that house, and I thought I might share a few with you. The tree has long-since been cut down, but a huge pine tree used to be here.  You can see the stump in the ground.  It was the perfect climbing tree, and I would spend hours in it.  I had "rooms," would make up stories, and would read books in it.  It was the best! This stoop was the location of so many mud pie concoctions!  S...

I apologize for the lack of posting.  But...no news is good news in the medically fragile world!  Abby has been doing SO well and we are thankful for the many improvements to her health.  She had a touch of pneumonia in the beginning of February and stayed at home!  This is huge because pneumonia can be a beast for diseased lungs.  She did her breathing treatments like a champ and hung in there just fine.  The last few weeks, her school has been pretty germy.  We kept her out for a week and a half to protect her while the flu made its rounds.  Everything is looking much better now though, so she happily went back on Tuesday.  While she is the one of my kids who I could easily home school, she is also the one of my two who simply loves being around people! Today is Rare Disease Day, and I wanted to share what I have been posting on Facebook with you all here. Cerebrocostomandibular Syndrome, Abby’s primary diagnosis, is extremely rare. T...