A few days before being discharged she was seen by the ortho surgeon who diagnosed her with hip dysplasia and dislocated hips. He put her in a pavlik harness to support them and help put then back into place. Since bring home she has been in the harness 24 hours a day. We go to Boston every Thursday to have her hips checked. Last week they determined that the harness didn't work meaning she'll need an additional surgery to fix both hips. We go back again this Thursday to see ortho and get the final determination and hopefully a plan.
I'm hopeful that they will be able to fix them soon so she can heal and recover for her next big surgery to close and put her bladder in her abdomen. I'm getting faster at diapering her and changing her ostomy bag is getting easier. Some days its all just too much and no matter the number of surgeries she has it just will never go away. She will always have this. She's legally considered disabled. I consider her special abled. She will do great things. One of her surgeons told me just before her discharge that she is doing far more than any of them ever thought she would. They didn't think she'd be able to eat very well or even have much if any movement in her legs. She told me that Agnes' prenatal scans were "scary bad" "grim". I'm not sure how I had no idea of that, if I just never heard them telling me this, if I had my rose colored glasses on because they weren't telling me that what she has was fatal because we'd gone through a fatal diagnosis and that's just wow. That shakes you to your core. Don't get me wrong this isn't rainbows and unicorns. But it's all about perspective. It's smiling and laughing in the face of difficulty, it's pushing through, it's "Advocating like a mother" (yes i have a shirt that says that lol). I won't lie wrapping my head around this additional surgery isn't easy. Accepting that this isn't going to ever go away has left me speechless, breathless and a bit broken. That our darling Agnes is always going to need special medical care and that this is our new normal is a lot to take in at times. I find my emotions all over the place, perfectly fine to crying through the grocery store. But still it's so much better than what we've faced before. I'm so thankful for our faith and whatever God has in store for me in all in. We will tell of Him.
it's just great to be home as a family, trying to slow down and enjoy it all, trying to fill days with normalcy and things that make me feel connected to life, helping art Griffs school, field trips, chickens for Isla and laundry so much laundry!
I'm so proud of Agnes! She's growing slowly but surely and weighs 6.5lbs now! She received her Tiny Super Hero's cape the other day it's so tiny! If you've never heard of their organization you should check them out!
Back to Boston super early on Thursday.