Life as a Leach

As you can imagine, COVID 19 has caused us quite a bit of stress!  We are doing everything we possibly can to keep Abby safe, including working from home and not going anywhere.  We used Instacart to grocery shop and wiped everything with disinfectant wipes on the porch before bringing anything inside.  We also wore gloves!  There are many unknowns right now regarding Abby's surgeries.  Her orthopedic team canceled all of the pre-op appointments we were supposed to have next week and in April because all outpatient appointments are being postponed for the time being.  This means we will not be meeting with ortho, infectious disease, plastic surgery, pulmonary, and ENT right now.  All elective surgeries in New York have been canceled for the time being, but it is unclear as to when that order will end.  Right now, the orthopedic team still has Abby on the schedule for her surgery and subsequent inpatient stay in May.  It would take a mirac...

Thank you for all of the purple pictures and well wishes!  Abby made it through her MRI and we are on our way home now.  The mri took 2 hours.  The first hour was great.  She took a break, went to the bathroom, and then the second half was rough.  It probably would have been better if she had just plowed through and not taken a break, honestly.  Her back was really hurting and she cried the last half an hour. 😢. But she finished!! Here are some pictures from last night and today:  A visit to Carlo’s Bakery  The Stage Door Tour at Radio City Music Hall meeting a Rockette visiting the AG store having fun at a Valentine’s Day party at the hospital I totally forgot to take a picture, but we also finally got to meet another VEPTR mom friend who lives in NYC!  She is the sweetest and brought Abby a big basket of treats, which made her day! We are grateful for your prayers and grateful to be going home!

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...

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...

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 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