Thursday, January 10, 2013


***Wednesday 1/9/13 UPDATE***

I've had to stop myself the last few days and really talk myself out of being down. I've cried, I've vented, I've wondered why but, then I realize that I need to count our blessings and celebrate the little miracle that Miss Riley is.

CHOC is not an easy place to walk around. The PICU floor is even more difficult to spend any length of time on. Perspective. We have our baby girl. We're fighting along with her to help her recover from this horrible disease and she has a chance. Others don't.

Riley is doing much better dealing with the RSV. She has coughing fits that send our anxiety in to overdrive but, those have subsided for the most part and her breathing treatments have helped a ton! She still has tons of boogies so frequent suctioning seems to help.

And the best news, Riley is waking up more and more everyday and is more present to not only us but, the staff as well at CHOC. Baby steps, but beautiful baby steps. As parents we were questioning if we were really seeing what we were seeing and then we've been reassured by nurses, therapists, relatives that they see what we see!

We're learning through OT/PT/ST how to help Riley deal with the injuries her brain has suffered and how best to help her come out of her sickness. We've been told to only stimulate one sense at a time, keeping her side of the room quiet and calm and working her muscles and body out little by little to help her regain her strength.

PT/OT/ST are all basically mimicking each right now. We spent time twice today holding Riley and working her muscles with varying stretches and positioning in bed to help them get stronger.

We see improvement each day. It really is amazing to watch her take these little steps.

Tomorrow, she'll end her 14 days of antibiotics that she has been on. We won't know until tomorrow if the ID doctors will want her to continue on another round or not. She continues to take baby aspirin daily to help get her obscenely high platelet counts back within normal range. For now, the aspirin is working. Her sodium levels are still going up and down (on the low end of normal) so she has supplements and basically a water pill helping to balance that out. She is still on one dose of phenobarbital daily to prevent seizures (she's been seizure free for quite a few days though) and a daily shot of lovanox to help keep her blood from clotting.

Overall though Riley's main organs are all working great as they have the whole time. Now, it's time to work with helping her brain recover.

Grandma and Grandad leave tomorrow morning to head back to MT. Grandma has been a huge help watching Mason and staying at our house overnight to help with both the boys.

Today Riley was visited by all of her grandparents and Gwen and Gary (my SIL's parents). They brought the cutest hair bows for Miss Riley and we will definitely be using them as we change out her accessories daily to help make sure each doctor, therapist and nurse knows Riley is a little miss!

Uncle Scott visited after work and stayed around after I left to keep Dave company. We've found that limiting our time alone at the hospital at night is helpful for our spirits. We've both really been down when left to think alone for too long. We're both lucky to have a support system that we can lean on. Dave's brother/Riley's Uncle has been wonderful for Dave. Thank you Scott!

We were finally able to put Riley in a nightgown from home. A nurse suggested we just cut it up the back (like a regular hospital gown) and then our nurse today helped fit her left sleeve over her PICC line. I took this picture right before I left the hospital tonight and she looked adorable!

I have been tracking who wants a shirt/size/quantity etc. and will probably place an order on Friday. We really never intended on any of you buying these shirts and truly wanted it to be our gift to you.

With that being said we will let you know the final cost and it is up to you if you'd like to cover it. If you can't I really don't want you to feel like you need to. Whoever wants a shirt gets one!

Thanks again for checking in, praying for Riley, telling Riley's story and for being there for our entire family. Patience is not my strong suit but, I am trying my hardest to let Riley know that she can take her time and that she is courageous and brave and such a fighter.

Dave, Megan, Logan, Mason and Courageous Riley!
Fight On!


  1. I'm so happy to hear that she is continuing to make progress! I'm also really relieved that you seem to have such a good state of mind about all of this. This is no doubt the hardest thing a parent could ever go through, and I'm not sure I would be able to remain composed. I've been really worried about you, and feel better knowing that you are doing alright. Riley's mama is pretty courageous herself!

  2. Megan, I hear ya about the perspective piece. My daughter Kate had skull surgery at 9 months and was in the PICU at CHOP for a week. It was awful, and scary, but that piece of "but my kid's here and getting better, and everyone can't say that" is HUGE. But also keep in mind that, while in comparison to some, she's doing great, this is still your reality, and you're allowed to be scared and nervous and, yes, feel a little sorry for yourself and your family for what you're going through. Hang in there, mama. I think of you and Riley daily.

  3. Megan- I am so glad to hear that Riley is making progress- that is wonderful news! The Gauvrys would love a set of tshirts- Paul would need an XXL, me a L, and Ginger and Ruby a small kids. We will absolutely cover the cost- just let me know! Thank you for keeping us updated- I read your blog every day! Take care, we're praying for you :)