Life as a Leach

We drove up to NYC today, dropped off mountains of Abby’s medical records at the Spine Hospital, and then headed to CHONY.  We scheduled a tour of the hospital with child life to learn about the hospital and help Abby to feel more comfortable.  She was worried about CHONY being different than CHOP, but is feeling much better now! The hospital has playrooms and we have access to all of them—not just the one on our floor!  There’s foosball and air hockey too, so she was excited about that.  She will have her own room, which also has a mini fridge in it.  That is very exciting for me!!  The rooms are pretty much what we are used to, so everything looked more familiar than she thought it would be.  The cafe on the first floor is pretty tiny, but I think Door Dash will work fine.  There’s a Valentine’s Party tomorrow on the main floor that we should be able to go to for a little while.  They have lots of special events, and just this week an actin...

My days off are filled with phone calls, emails, looking for housing (but not anymore!!), and locating medical records these days!  Yesterday, I was able to talk to a Child Life Specialist at CHONY about the possibility of getting a tour of the hospital when we are there for Abby's MRI.  Abby is still very anxious about switching from CHOP.  Honestly, she seems much more worried about that than she is about the surgeries or halo!  Child Life is amazing in general, so I knew that I could get some help if I reached out.  This specialist was so sweet and happily scheduled a tour for us.  She even asked for some info about Abby so that she could personalize it to her needs and interests.  She also let me know that they are very familiar with working with kids with halos and will make sure she has plenty of fun while she is there.  Another nice thing is that this Child Life specialist who will give us the tour will also be the one who will be with ...

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...

A strongly worded email and many prayers from friends and family did the trick!  Dr. Cahill called me this afternoon to apologize for all of the miscommunication and trouble.  He offered us the 19th for surgery, which I eagerly took!  11 days...we can do 11 days. He talked with me at length about what the surgery would entail.  He is replacing the screws with hooks, and then fusing more vertebrae.  Sadly, that means more final height lost...but it needs to be done.  Basically, he is redoing the Shilla and we can expect that the recovery will be the same.  We are fully expecting that she will go to rehab again.  (Have I mentioned that we are still appealing the transport bill from her last trip to rehab?) It's going to be another tough surgery, but we have a plan.  She will be in another brace that is actually a pinless halo.  I'm sure she will love it even more than the last one.  :) We do appreciate your love and prayer...