We be stylin'

Day +80 

Since we last posted, we have found out more information about going home, but first, our best news is that Rylie is currently producing a normal range of the missing enzyme! This is the whole reason why Rylie needed the transplant. Praise God for His mercy for Rylie!

Our doctor is finally scheduling all our final tests and procedures so we can go home. Rylie will be having some tests done in the OR on August 7. We'll need to wait at least 48 hours after the tests, and then we get to bolt out of here (August 10). Our cautious doctor also said he did not want Rylie to travel by car since there aren't many major cities between Minneapolis and Denver in case Rylie got sick or had any problems. We thought we may have Rylie put in a bubble and take a commercial flight, but we have been graced with an incredible offer to travel home in style by private turbo prop plane!!! Hot dog! A huge thank-you for those that lined it up and the very kind owner of the plane. 

Rylie is still doing fabulously. She's been working very hard on her physical therapy, and she is learning to walk up steps.  Her joy in learning new things is hilarious, and we just can't get enough of her laughs and smiles. She is still having a very hard time eating more foods. She's eating around 175 calories a day, and I just don't know how we can get her to eat more so we can stop the TPN. The dietician told us he thought she'd be off the TPN in about a months time. I hope he is right. 

Hope everyone is having a good weekend!