Today ended on such a high note and I had to share it here so I am adding this to a post I already had ready to publish. About an hour ago Riley started moving all of her limbs, her trunk and her head! She was making sounds as she was doing this. We've had a pink bunny she got from cousin Molly by her feet and she was pushing it away with her foot. She had just received her lovanox shot and was agitated and cried (only time I'll ever be happy to hear my baby girl cried). Dave is at the hospital and actually called in one of the doctors to make sure what he was seeing was alright. It is and we are ecstatic! Baby steps that are so wonderful to see! Keep the prayers and good thoughts coming! They are working! And now on to my regularly scheduled post....
Starting tomorrow 1/14/2013 the only people that will be allowed to visit the hospital will be parents. This is due to the RSV/Flu outbreak and for the protection of all children receiving care at CHOC.
Not exactly the type of letter you want to receive on a Saturday morning 2 days before they implement this rule and 2 days before a new week that you had planned out so mom/dad, grandmas/grandpas, aunts/uncles and friends were in place to help with this new norm!
It is what it is. Not much we can do. We are making a case for at least having one grandparent with us when one of us is gone. Dave needs to get back to our business. We're the only two employees right now and running conference calls from the 6th floor at CHOC just isn't cutting it. I was so mad at first but, then realized that this is for the good of all the children here at CHOC. RSV/Influenza is everywhere you turn here. Seems like each room in the PICU has an isolation sign on it. Like everything else the last two weeks we will roll with it and deal with it and move forward.
We've also received two of the sweetest prayer blankets/shawls. One from my mom's sorority sister Emily who lives in TX and another from my sweet sorority sister Carrie. These blankets adorn Miss Riley's bed and we know she can feel the love. I tend to cover Riley in these blankets during times I feel she needs strength. I'll try anything to relay to my little miss that she has an army of supporters behind her and she can do this!
We're still in the PICU. Still waiting for Riley to kick the RSV. She still needs lots of suctioning and seems to get very boogery. Last night was night two of melatonin for Riley. Seemed like it worked. She was very alert and awake today. When I held her today it felt like I was reversing time and holding Riley as she was 4 weeks ago.
Dr. Dre (our favorite resident) moves on to neurology tomorrow. When she did her last rounds on Riley this morning and when we gave her a Team Riley cookie yesterday I almost completely lost it in tears. She's written up a small novel on Riley's case and the care she gave her over the last couple weeks. Dr. Dre is probably around my age. Beautiful,sweet, smart and professional. If you can't tell I adore her. She sort of took our Riley under her wings and really to be very blunt gave her the chance that some had thrown out at the beginning. As she walked out and gave Riley that last glance she told me how much she is pulling for Riley and has enjoyed seeing her progress. Since Riley will still be under neuro's care, Dr. Dre will be back to round with that team and I believe Riley will benefit from having her input on rounds daily.
It's a quiet Sunday. Logan & Mason were sad when Dave left this morning. Those two have amazed me with how resilient they have been through this. Mason is still young enough to know something is up but, not really "know" what it is. Logan is taking this harder as each day passes especially since he is now unable to come to the hospital :( I wish I could just take all the pain and heart ache away from all my children right now and carry the burden for them but, I know that's not realistic. A good dream I suppose. They all just adore one another and having to be away from each other sucks! In a few years when they are all fighting over toys, arguing in the car or just being siblings I hope we can remind them how lucky they are to have each other.
I took a few pictures of L & M yesterday morning. You can just see the love they have for each other!
We start a new week tomorrow and I am hopeful for what it will bring. Riley is showing us through little steps each day how amazing she is.
Thanks again for all of your love, support, thoughts & prayers!
Dave, Megan, Logan, Mason and Courageous Riley!