Processing

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 surrounding area.  It seems that the hospital has many of the same programs for kids as CHOP, so that was a relief for Abby.  The resources for families aren't quite as great (there are only 2 washers and dryers for the whole hospital, and there's no cafeteria in the children's hospital), but we will make do. 

Our biggest concern right now is securing reasonable housing, because everything in New York is just SO expensive.  Hotels, parking, and tolls are going to kill us!  I have some friends putting some feelers out and we are so grateful.  We booked our hotel for the first week because it is during graduation time and many were already booked solid.  After that...not so sure!  The Ronald McDonald House is a good 20 minutes away and the priority goes to families of kids with cancer.  It did not sound like we had much of a chance of getting in there, and the distance would still be an issue.  (They also don't have any free parking, so we would have to pay probably $30 a day--or more--to park!) I will typically be staying with Abby at the hospital, but having a place close-by that I could walk to to take a break when Matt is in town would be so helpful.  If you know of anyone that has a studio to rent for a reasonable price, please let us know!  We really don't need much!

Abby is staying home from school for a few days while the germ situation is assessed.  She also has been showing symptoms of another lung infection, which is an ongoing battle in lung failure.  Her pulmonologist put her on antibiotics in hopes of catching it early.  Abby is participating school via her robot Celia.  My parents were able to come down today to stay with her so that I could go to work.  They are the best!!

I have hesitated to share this picture because it's pretty overwhelming, but I also think it's a very real image of what we are dealing with here. 

This is a CT profile image of Abby's spine.  The curve is just out of control.  Dr. Lenke measured it at 108 degrees, but he thinks that is a conservative measurement because some hardware is in the way.  He estimated the curve was more like 120 degrees.  The black space inside of the curve is her tiny little lung getting crushed by her spine.  Her spine cord is also compromised by this curve.  Dr. Lenke compared her head to a bowling ball, and it's just weighing everything down.  That is pretty obvious in this image, even if you aren't familiar with CT scans.  Her scoliosis has also gotten worse from all of the stress from the kyphosis, so it is at a 60 degree curve now. 

Here are a few things you can specifically pray for:

1.  Abby can stay healthy and out of the hospital.
2.  The germs at school are at a minimum so that Abby can go back to school.
3.  We can find affordable housing for our stay in NYC.
4.  Abby's curve remains stable until surgery.
5.  We can all get restful sleep.  3 a.m. has been a great time to be up worrying.

Thanks for your prayers!  We love you!