Thursday, February 14, 2013

Valentine's Day Greetings!

***For some reason my pictures won't copy to the areas I want them to today! So they are staying at the top for now!***

Happy Valentine's Day! We hope you have all had a day filled with love and those you love close to you.

I woke up with Miss Riley this morning after an okay night. They've adjusted her feeds from continuous to every 4 hours during the night which seems to help a bit with her tummy issues. They still vent her halfway through her feedings in hopes that it helps her digest her formula better.

Yesterday was a big day for Riley! We finally were able to get her in to the therapy room for PT/OT. Usually, therapies had been done in bed and we requested taking her to the therapy (play) room as we believed a change of scenery would be good for her. I carried her over to the room and as we were getting all set up Riley filled her diaper in my arms and it was a mad scramble to make it back to the room to change her without letting her diaper contents get on anything! I think getting up out of bed helped get things moving so to speak so Riley was definitely ready for therapy after a diaper change!

She started off on this board swing thing with the PT. At first she was sleepy and resisting relaxing but, once they got swinging she really enjoyed it. After the board swing she was able to go in to a baby swing all by herself. She was propped up with a pillow but, we were able to get her to hold on and she LOVED it! She was wide awake as she was swinging and then we dimmed the lights and she took a little nap. She always loved her swing at home so I know she enjoyed this.

After we were done with PT we moved in to OT. She stayed in the swing a little longer and then was able to sit on the mat with the OT and play with some toys. Again, she was hesistant at first but, then relaxed enough to sit closer to the toys. She was opening her eyes and we could tell she wanted to play. Right now Riley may have the desire to do something but, her brain doesn't connect to tell her what needs to be done to do something. For instance, she wants to grab for the toy but, she doesn't quite know how to do it. Therapy that involves repetition and us showing her how to do something over and over is what will help rewire her brain to eventually do it on her own. I feel bad that she can't get it all right now but, she'll get there with continued therapy and hard work!

We're hoping that she continues to tolerate the therapy rooms as they are filled with toys and many different therapy devices that I know she'll enjoy playing with.

Riley had ST yesterday morning as well. Grandpa Hopper was with Riley as Dave had a meeting and I was home with the boys in the morning but, she tolerated the VitaStim and is working more and more on her swallowing. This morning during ST she again had VitaStim and another try at the Passy valve, this time while awake. We were both in the room during this trial and let me tell you Riley's personality is all there because she was being stubborn and even figured out how to pop the passy valve off. When she did keep it on we were able to hear her little voice and as Dave said it was the best sound we've heard in a long time!

We're learning Riley's cues but, it still is anyone's guess what is really bothering her when she gets worked up. Does her tummy hurt? Are her new teeth bothering her? Is she frustrated that she can't do more right now? So, we try anything and everything to get her comfy and talk to her over and over telling her she can do it, she's brave, she's courageous and we are here for her every step of this journey.

The power of familiarity is becoming more and more evident as Riley calms down so much more when those she "knows" are around her and when the nurses/staff she likes are around her. I typically take a morning nap with her if I am here. It's a sure way to get her relaxed and calm. Yesterday, Hannah and her mom came to visit and while Riley seemed to be having trouble calming down and spiked a slight temperature she relaxed immediately while rocking in Hannah's arms. It's just further proof that she knows who the people she was closest to are and we are happy we can surround her with the love and familiarity she needs.

We hope you all had a great Valentine's Day. Today Dave will stay the night with Riley and I'll be home with the boys making the requested red heart pancakes that Logan wants for dinner. This morning we treated the nurses at Healthbridge with some heart shaped bagels and dropped off lunch from CPK for the PICU staff at CHOC. We also made some Valentine goody bags for the nurses/staff at CHOC as well. Of course in the chaos of dropping the food off I forgot to leave the notes we had for all the nurses that had taken care of Riley. So, we'll need to make another trip to drop those off soon.

Hug the ones you love not only today but, each and every single day. While some people celebrate Valentine's Day and others just consider it a Hallmark holiday, I still think it's a good time to remember to tell the people you love how you feel all the time not just once a year. Life is so so precious and can change in an instant. XOXOXOXO

Dave, Megan, Logan, Mason and Courageous Riley

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