Life as a Leach

Tomorrow, we will head to New York to CHONY.  We have a tour of the hospital scheduled in the afternoon and need to hand over the MASSIVE amounts of medical history CHONY needs from CHOP!  On Friday, Abby has a CT scan and an MRI.   Until today, we thought Abby would be doing the MRI under anesthesia.  During my pre-op phone call with the nurse, they didn’t like that Abby had recently been on an antibiotic for lung issues.  She wasn’t sick—it’s just the way her lungs our.  Our pulmonologist said she was fine for the MRI, but CHONY didn’t want to risk it.  To avoid the nightmare it would be to attempt to reschedule, Abby will be doing this MRI awake.   She did it awake once before out of necessity (long story, but she couldn’t be intubated).  It was NOT pleasant, but she did it.  Please pray that all goes well.  We have music and I’m going to read aloud to her. We are also hoping Child Life will have some tricks.  If she can’t d...

Thank you so much for all of you who have helped us to find affordable housing in New York City!  I tell you what, this was TOUGH!  Most rentals were going to cost us over $10,000 for the time we were going to be there, and that's just not doable when we already have a mortgage to pay!   After a lot of number crunching and weighing the pros and cons, we realized that the amount of time Matt is going to actually be up there does not warrant paying for an apartment for 3 months.  While it would be nice to have a stable "home," it just isn't financially responsible.   So we started looking at Air BnBs that we could rent for just the times he would be there.  That was also a challenge because the vast majority would only refund 50% of your total cost just 48 hours after booking!  Since he doesn't really know when he will be there for sure, booking this far in advance is hard. We do know two dates that he will be there, so we were trying to...

If you are interested in learning more about Abby's spinal surgeon, I am including a few articles.  He truly is brilliant and widely known as one of the best spinal surgeons in the world.  He only takes the most complicated pediatric cases, and I'm left with mixed emotions that he accepted Abby's case!  All of this is just a tad bit terrifying!  Regardless, we know we are in the best of hands. Top Reasons to Choose Dr. Lenke Article About a Teen Who had a Vertebral Spinal Resection CNN Article About a Teen With a Similar Degree of Kyphosis as Abby Interview with Dr. Lenke

Thank you to all who have reached out to us.  We really appreciate your sweet comments, and especially your prayers.  After Abby was accepted as Dr. Lenke's patient, we prayed that there would be a clear decision about what to do next.  That prayer was definitely answered, even if it wasn't what we had hoped for!  The last few days have been filled with processing, researching (shocker!), questions, and discussions.  Abby is definitely processing and is much more aware this time around. She is nearly 3 years older than she was in her last surgery, and she has some big feelings.  We are helping her work through them and giving her the space to share her thoughts.  She has also started writing in a journal, which I think will help her to process.  It seems like more and more things pop up that she is going to miss because of being in the hospital, and each time brings fresh tears. We have learned quite a bit about the hospital and the surroundin...

My blog app on my phone isn't working right now, which means I can't blog if I don't have access to a desktop computer.  I shared this on Facebook and wanted to make sure any blog readers that aren't Facebook Friends with me know what was up! We went to New York Presbyterian on Friday to meet with Dr. Lenke, who is a world famous spinal surgeon.  Many professionals say he is the best in the world.  W e felt like we did the first time we met Dr. Campbell-like we were in the presence of greatness. Dr. Lenke is very similar to Dr. Campbell in his assuredness and knowledge. Dr. Lenke said nothing good will come out of the wait an d see approach because we know what will continue to happen. Her lungs will continue to decline until we lose our window. He emphatically said that the rib to rib VEPTR is not the right choice for her at this point because her kyphosis is the biggest issue. He said her health is not stable enough to put veptrs in and she would almost definitel...

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...