Miss Riley Roo.... Riley is, as of this morning, RSV FREE! However, she still has bronchiolitis (basically, she still has ALL of the RSV symptoms, without the title :()
She's been mucousy and wheezy all day but, did tolerate some OT this morning. We worked on sitting her up and stretching her muscles. She has great tone throughout her extremities which is wonderful news! As I type, our fantastic nurse is sucking her boogies and Riley is talking to her. She found a "sweet" spot for Riley today on her tummy (prone) which allowed Riley to relax more and get some rest. She also tested out different variations of oxygen levels to see what she really needed. Riley was breathing just fine on room air but, obviously with her RSV she still needs some sort of support! She found that the lower the level of the flow the happier Riley seemed to be. We've had this same nurse several times and she is one that we love. Her attention to Riley is amazing and she also happened to be the one that got Riley to open her eyes back on New Year's Day. We are looking forward to having her back.
Riley is more alert each day. Today her eyes were both mid-line meaning centered and tracking more. She is definitely more alert as she is showing her frustration during certain procedures and starting to vocalize her annoyance more and more. She really is amazing and showing everyone her strength each day. She's also showing her stubbornness especially when someone wants to put anything in to her mouth. Riley really is a fighter!
I had a call from the neurology team's office today to make a follow up appointment. It's so odd to me that we are already scheduling appointments for 2-3 months down the road. The appointment will be with one of the doctors who we really liked.
As we sit here at CHOC day in and day out there really is SO much we have to be thankful for. Our wonderful little family , our extended immediate family, family & friends near and far who have helped get us through the last few weeks. Ugh saying weeks is just odd.
We've been blessed with so many cards, notes, thoughtful gifts, treats for our nurses and support from many different people. We really do try to count our blessings and focus on the positive as much as possible. It goes without saying that doing this is something that is truly a challenge however, I don't really think we have any other option. If we didn't remain as positive as possible, if we didn't try to pull strength from our army of supporters we'd be lost. We continuously get comments from the nurses about how wonderful our support system is and it makes me sad to think that there are others who do this type of journey alone. So thanks! I know I say it all the time but, we really do appreciate ALL of you!
A few years ago I "met" a group of women who all shared something in common with me. We were all pregnant and due around the same time and as a result shared an obvious common interest. Through the last few years I have had the pleasure to get to know these women more. Last September, a smaller group of us rented a house in Malibu for the weekend and had a girls weekend. Memories to last a lifetime and a weekend I am looking forward to attending again this year!
They all hold a special place in my heart for many different reasons. Many have gone through their own true trials and tribulations and are stronger then they know. I've seen the love that a group such as this can provide for another when in need and never really imagined we'd be the ones on the receiving end. EVER!
The larger group of MEMO's have touched me in so many ways. They have taught me more about being a mom and being strong than I ever thought was possible. Collectively, they've emailed, sent texts, messaged, checked in and also sent a generous gift that left us speechless. Yesterday, I opened a box with the sweetest ABC blanket embroidered with "Riley, the courageous". It was the perfect gift for our courageous baby as it came from a group of super courageous mommies. Thank you to all of you. xoxoxo
I've tried my hardest to acknowledge everyone for every part they have played in this with us and I hope if I haven't personally had the time to thank you you understand that I will get there. I've read every email even if I haven't had the chance to respond. Every text, even if my response is delayed by a day or so. 3 weeks of this has left our minds a bit scattered and I still don't know what day it is most of the time.
The t-shirts are ready and my dad picked them up from Ellen's Silk Screening in South Pasadena this morning. Our good friend Victor has worked there for as long as I've known him and came up with the design and idea along with Dave. Ellen's was super generous in the cost they charged for these shirts and they did an amazing job! If you ever need shirts or anything else silk screened we would highly recommend them! Thank you Victor and Ellen's!
We can't wait to start receiving pictures of everyone wearing them. If you're local (around Arcadia) my parents will be leaving the shirts out starting this Saturday on their porch in a basket for pick up. I got super sized Ziploc baggies that will have your name and size on them. Feel free to come by to get them anytime after Saturday!
If I am mailing them to you I plan to get them out in the mail by Saturday, Monday at the latest. If I'm sending them to you in Canada (there are a few) I can't promise you'll get them before next Christmas but, hopefully it won't take too long! If you've emailed me I have your sizes etc. and if you still want one just let me know and we can send one out ASAP.
We weren't able to get any surrogates approved and they've even said on the PICU floor the only way to get one approved is if you're a single parent. Sucks but, too many people in the last 2 days have been coming on to the floor sick. Baffles my mind why someone would do that but, it is what it is.
Riley is making progress but, still needs the masses to pray for her and send her as many good thoughts as possible. I'll have a detailed (difficult to write) post on the immediate future and where we go from here tonight.
Riley Fight's On as do we. We believe in her and are just thankful we have the chance to be her parents and help her as much as we can on this journey to recovery she is taking. All we asked for 3 weeks ago was for our baby girl to stay with us. Each bump in the road, new complication and milestone we'll take.
Dave, Megan, Logan, Mason and Courageous Riley!