Get used to the Stairs

The hospital staff was sad to see Millie leave today, but we have never been happier to say goodbye to a group of kindhearted, sweet people. Traffic was never lighter and the drive was never easier than it was coming back from the hospital. Millie keeps progressing like the six million dollar man and just continues getting better, stronger, and faster. Her doctors reminded her upon her release today that she'll feel like doing things in the coming days/weeks/months, but she has to discipline herself to be a sloth. She can't really go anywhere, or do much of anything other than stay in bed and occasionally get up for carefully supervised grooming activities. It sounds kind of like being in prison. Millie asked me how I thought I would be able to handle bed rest and I said I thought I would be well suited to it. I've always been naturally inclined to sloth-like activities. That's one of the beauties of our marriage, where one is weak the other is strong. I'll...

Millie's brother and sister-in-law presented her with the most wonderful shock the other morning. They surprised her by flying her dad down to be with her for the weekend. When he came into her room she just started crying. As difficult as this process has been, it has been tempered by the presence of caring and attentive friends and family. We're grateful that while we're so busy at the hospital our son and dear daughters are in such good hands. I can only hope that our pet turtle is faring as well in our absence. Everything is progressing exceptionally well. Our fetal surgery team has gone to Austin for a conference, but Millie is on track for discharge on Sunday. Her pain is sill omnipresent, but every day it gets a little better. She'll be sent to her brother's house tomorrow where she'll be on strict bed rest. She returns for a followup appointment on Friday. Her folks will head home Sunday night, then Davey and I will fly out Monday morning. ...

Went to the hospital this morning to check in for surgery. Bottom line, we were sent home after hours of battling with the insurance company. Our insurance has denied our claims and all of our efforts thus far. We are not alone though. All day we've been surrounded by amazing doctors and staff. They spent the majority of their day right next to us battling it out with insurance. We are exhausting all our resources, and I'm hopeful that things will still work out. We also have an attorney who wrote a letter and called the insurance on our behalf. The hospital will not do the surgery without medical coverage. Bottom line, the expenses could be more than we could imagine or ever hope to pay off if there are complications. And remember, only 20% do NOT have complications. I just don't believe that we've come this far only to walk away. We are spent and deflated. How much longer can this go on until we fly back to Utah and fight this battle from home? Our absol...

We got a call at 4:59 p.m. on Friday saying that our insurance has denied the surgery.  The reason: it's experimental.  Dumb.  It's not experimental.  The MOMS trial has been over for a year and has proven to result in significant increase for mobility and decrease of shunts.   If I was on Medicaid, then it would be completely covered.  So, I check into the hospital on Monday not knowing if this is going to be covered.  The hospital is doing all they can to prove that it is medically necessary, or so they say.  Why is it always a battle? So what is this worth?  Can we put a price tag on it?  Can Matt and I say, "We aren't doing this because we don't want to be in debt the rest of our lives?" I slept restlessly last night as I went over and over these questions and many more.  How does Matt sleep so soundly?  Again, he's the steady one that repeats, "Move forward with faith."

I should have slept in my childhood bedroom last night.  My kids should be waking up at their Hattie and Papa's this morning ready for Easter celebrations.  I should be enjoying a burrito from Taco Villa today.  But no.  It's our Spring Break, and for months Matt and I have anticipated a trip to Canyon.  We planned to wake the kids up in the middle of the night and tell them we were headed to Texas.  We often joke with the kids, "let's go to Texas today."  And we were actually going to do it! Instead, it's my last day home before leaving for Houston with only half my family.  I guess Houston is Texas, but it's not my home. Today I'm reminded again that my plans are not always His plans.  My ways are not always His ways.  And I have faith that His are better.