Hearing Test

As part of the 6 month review mark for this Chemotherapy protocol Rylie had her 6- month hearing evaluation Friday. 

She experienced a bit of a surgery complication Thursday night so we were a little sleep deprived and worried about how cooperative Rylie would be during the testing but she did pretty well, I know it's not really a surprise to anyone any more. 

She’s Awesome! Sat really still and did exactly as the audiologist asked. She just looked so grown up sitting in that big ol' chair. 

Unfortunately there was a little area of concern. The chemo combination Rylie is on has been known to cause some hearing lose and there appears to be some change in what she is hearing in her left ear. They wanted to run a few more tests so we headed downstairs for a donut to wait for the next round of testing. 

The last round of tests showed the same changes, which means we have to dig a little deeper. We are going to repeat the tests Monday after chemo and hope this was just an off day but if the results come back the same as Friday we will have to look into a plan B. 

Pray for a good day Monday... rylie could really use one less complication! 

Tear Duct Surgery

For the 5^th time in less than a year we’ve handed our baby off to complete strangers and trusted them with the one thing that means the most to us. We would love to say it gets easier, that it doesn’t rip our hearts out each time but it seems to be the exact opposite… it seems to hurt more and more each time. 

However, we are so incredibly lucky to live where we live. We are 15 minutes away from one of the best hospitals in the country. They have an amazing staff and they all do there best to take extra good care of our baby girl! The IV team is amazingly patient and does everything they can to make her feel safe and comfortable. And her anesthesiologist this time was amazing! We were a little scared about how Rylie’s body would react to a surgery under chemo but he assured us he would take extra special care of her and watch her ever so closely! 

PLay time before surgery! Love this little beauty! 

                                                                            Lookin' Good in her hospital PJ's! 

Rylie did amazing through surgery...Took her a little bit longer to wake up this time but with her currently chemotherapy doses they kind of expected that. 

Everything went really well with no major complications. In fact surgery went great!!! Dr. Hoffman was able to take a really good look at her eyes and the left eye (her really bad eye) seems to be progressing a great deal. The VEP test during surgery also confirmed her eye is responding a bit more in the positive direction. Everything Dr. Hoffman was able to see gave him some really encouraging signs that she may come out of this entire ordeal a little bit better off than we originally expected. We obviously still have a few months to go and we're just going to have to be patient, but for today we are all encourage at how well she's looking at the 6 month mark. It's been awhile since we received good news... So we're going to take it and soak in every single second! 

Hitching a ride to the car in the wagon! 

Snuggles at home! 

Flashback.

While sitting in the waiting room waiting for Rylie to get done with her most recent surgery we couldn't help but chat about everything we've been through in the last year or so. 

Exactly one year ago we were sitting in this very waiting room, surrounded by other nervous parents, waiting for our baby to come out of surgery. Rylie was in getting tubes as most of the other kids were. It was the scariest moment of our lives. Up to that moment she had never been away from us for very long, and she most certainly had never been handed off to a stranger. It was a quick and easy surgery but we were scared out of our minds. It doesn't matter how easy the doctors say something is- when it's your baby they walk away with you are ways filled with complete terror. We only had to wait about 15 minutes for LadyBug to be out of surgery but it was it was long enough for us to know we never wanted to donut again...

Flash forward 13 months and were sitting back in this very same waiting room. Again waiting for a different set of strangers to call us and tell us our baby is awake and okay. The surgery is different but the fear and anxiety is the same. We've come a long way in 13 months. We know this hospital like the back of our hands. We’ve seen construction projects start and finish. We have a bit more of this road to travel but this little girl inspires us to keep going. And keep going we will! 

September 2013 (top) - October 2014 (bottom)

A lot has changed in 13 months… but this cute little smile has always stayed! 

It Never Gets Any Easier...

We wish we could say it gets easier… we wish we could say it doesn’t get harder and harder each and every time but for us it does. Tomorrow we will hand our little girl off to complete strangers for the 5^th time in less than a year. They will take her away, help her drift off into a peaceful sleep, and attempt to correct more of the troubles that NF has brought into her little life. We will trust them to take care of everything important and precious in our lives. We will trust them to get her back into our arms quickly and safely! 

She has been through a number of things in the last 7 months and each and every time she amazes us with her strength and courage. She is our rock and we are so blessed to have the opportunity to be her parents!

Hug your sweet babies a little longer today- treasure every moment you get to spend with them. Good, bad, happy, or sad… they are only little for just a small amount of time and each and every moment is full of everything good in this world. These sweet souls teach us to be better and be better we will.