Journal entry by Molly Perry

Life has been pretty busy lately and staying to feel like we're all settling into our new normal. The pavlik harness that Agnes was in for her hips officially didn't work which means she'll need surgery to repair them and will be in a cast for 12 weeks! Her 2nd stage bladder repair surgery and pelvic osteotomy will be in the end of March and will be an 8 week cast. Her feet. . yeah they also need surgery with pins and you guessed it... CASTS!!! My question was, can't you do all of this at the same time? Uh NO! 
But before all that, her brain. 
The last month or so the area on the lower back where her cyst was when she was born has been getting larger and larger. MRI showed that it's spinal fluid pooling in a pocket that keeps growing. This weekend we all went down to Boston, stayed at a great hotel, went to the aquarium oh and had another MRI of her brain and spine. These are called "feed and wrap" because ther want me to feed her and get her to sleep through it all. It was mostly successful..... until it wasn't and she no longer wanted to sleep. Though to her defense a 45 min MRI took 3 hours! They had 3 images left to get and it was either leave without getting them and have to try again OR.... mama goes IN the MRI machine laying down WITH Agnes! So great! But we got all the needed images. 
We met with Dr Warf her Neuro surgeon today and went over the results. Good news is that she doesn't have hydrocephalie and her ventricles aren't enlarged. BUT there is the pouch on her lower back which means that the spinal fluid is not circulating as it needs to. Dr Warf will do surgery on her brain to correct the flow of fluid. Surgery is scheduled for January 15th. 
Mid Feb ortho will begin casting her feet with plans to repair them with pins before she's 1.
It's a lot. But I know Agnes has incredible surgeons and an even more incredible God.

I was made for this apparently!  round 2 of special needs patenting. I ran into an incredible friend at the hospital a few weeks ago. Her sweet girl has SMA but is lucky enough the be receiving the only treatment to it which is absolutely incredible! We talked about way back when we meet and they were in the process of considering putting their girl in the drug trial. The decision was yes and I'm so glad it was! We talked about the number of people who tried to deter her from this trial. We also talked about the number of people who asked me if we wanted to terminate my pregnancy with Agnes and how our journey through special needs parenting with a fatal disease has changed our perspective. How my response has become "it's just spina bifida"  she has a larger complex called OEIS. Agnes is doing incredibly well. We are blessed beyond measure. 
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