MRI

Rylie had her first MRI on February 20, 2014. Talk about a long day! Rylie’s MRI was scheduled for 11am which meant NO food or drink after 5am, which for those of you that know Rylie know that was going to be a challenge. She may be tiny but this little girl LOVES to eat! She usually wakes up by about 7am and after a few snuggles she is ready for some juice, a snack, and cartoons. Because she had to fast before the MRI we literally did whatever we could to keep her occupied until 10am when we needed to leave for Primary Children’s. Cue the impromptu dress-up party she had in her bedroom…

We got all checked in to Primary Children’s Hospital just before 11am. We filled out some standard hospital paperwork, waited a few minutes, and then we were on our way back to the MRI. Because of Rylie’s age she needed to be sedated for the duration of the MRI. As they prepped her for her IV things got a little feisty. Rylie has never had an IV so you can imagine how that went… good thing we had daddy with us because mommy is NO GOOD when it comes to needles… add in my screaming baby and I am just a complete mess! We were up next for the MRI but emergencies happen when you are at a hospital so they didn’t end up taking Rylie back for her scan until about 1pm. A long wait indeed but our first experience with the IV was exhausting and she napped right up until it was time for her to head back from her MRI.

The MRI lasted about 1 hour and then the fun began. Daddy and I took a short break to get a little something to eat and drink and when we got back to recovery we were met with a VERY cranky baby. You would have thought we were dealing with a 250 pound grown man… that little girl can really put up a fight when she wants to! She was determined to rip out her IV with her teeth and whoever tried to stop her was subject to those sharp little baby teeth. We had ourselves about a one hour struggle trying to get her to calm down and sleep off the rest of the sedatives but it was becoming more and more apparent that was only making her more angry. The nurses up at Primary Children’s are amazing and once they were confident Rylie was calmed down enough to travel home they let us pack up and take her home around 4pm to rest in the comforts of her own home. We spent the rest of the evening cuddled up in bed watching TV and praying for good news.

By the next afternoon we received a call from the doctor’s confirming our worst fears… The MRI confirmed that Rylie had an Optic Nerve Glioma and we needed to get her into see an oncologist sooner rather than later. Rylie’s ophthalmologist faxed over a referral to Primary Children’s oncology department and told us to expect a call from them within the next few hours.  

As we sit here waiting for Rylie’s appointment with oncology (currently schedule for Mon. Mar.3) every emotion has come and gone. We have shed tears of worry, stressed about finances, and have been angry that this is happening to our little girl. And while it sucks it is reassuring to know that amazing doctors surround us with incredible experience in dealing with NF and all of its complications. All of Rylie’s doctors have experience dealing with NF and while they have been very direct in what we need to do they are also incredibly kind and compassionate… they are always willing to sit with us and answer all our questions. Its that dedication that we know will get us thru this next year, Many questions remain but one thing is for sure… with this amazing team of doctor’s Rylie is sure to some out stronger than ever!