Before my Riley update I wanted to share a couple stories with you all.
Back a few weeks ago on January 1, I talked about a picture in the donut shop by our house of a beautiful girl that said Everyday is a Miracle. I told Dave about it and always kept this picture and saying in the back of my mind. We tried to figure out what she may have had and assumed possibly she had been diagnosed with cancer. Anyway, that saying and her picture have stuck with me. In fact I believe right after I took note of the picture Dave called to tell me Riley opened her eyes for the first time. It was a weird "sign" to me that things were going to be ok. I felt like I knew Riley would pull through this and that once she got to the safe side of her illness we were ready to take on whatever we needed to in order to help Riley on her road to recovery.
Yesterday, as I was getting my soda before heading down to meet Dave and Riley at Healthbridge I was again drawn to the picture and this time took note of her full name. Thanks to a quick google search I stumbled upon the website that had been set up for her. At the time she was 16 and had a terrible car accident. Her parents were told she wouldn't survive and if she did she'd be a vegetable. You know all the things we were told about Riley. She suffered a TBI thanks to her accident. Yep, a TBI just like Riley although the ways they aquired their injuries are very different. I've spent the last couple of hours reading through her website and reading a beautifully written article that the La Times did on her in 2007. Her website talks about her families devotion to her recovery, her group of friends who have stood by her side and the faith and hope that they always kept in her. The webiste has many inspirational quotes, pictues and videos of her throughout the years and left me with an overwhelming sense of calm (after a few tears were shed) about the road we are traveling with Riley. It's going to be rough and it's going to be hard but, we will stay strong for Riley and continue to rally as many people as we can to support her and remind her what she is fighting for.
I've felt signs and little things here and there that have provided me hope and faith when I was feeling really weak and this picture has been one of them. Now I am in amazement that Riley and this girl share the TBI diagnosis. It's weird. Why did I pay so much attention to the picture finally and why did I look her up yesterday? I do not know but, I do know that now 8 years after her accident she is doing well. She has made amazing strides in her recovery and blown the doctors away. Her mom told me that she is still their same daughter in her personality and spirit. While she has many physical challenges and limitations that she faces every single day she still pushes on and enjoys life. I've also read that she spent time here at Healthbridge before going home. She lived in our community, attended the high school in our district and grew up where we live. She is my new inspiration and her motto: Be positive, stay strong, celebrate LIFE! will be one I continue to remember and tell myself over and over again as we go through the rehab process with Riley.
Another person who has been an inspiration to me is a girl I went to high school with. Long before any of this happened to Riley I would read her blog in utter amazement. Her strength, devotion to God and her faith were just amazing. My bff and I always commented to each other about how does she do it? Although, our situations are very different, Kristi has been the encouraging voice I've needed in the last few weeks and an example of the mother I want to be to Riley as we take her through this process. Kristi takes everything with such an open heart and mind and has fought very hard to get her daughter to have a special procedure done in Boston. You can read their story at: www.rossfamilylove.blogspot.com
Please keep them in your prayers. Like us they have two other children as well and have to figure out what is best for them and still carry the worry for their daughter Grace as she gets closer to this surgery. They head to Boston from TX next month for Grace's surgery. We're rooting for you Grace!
Now to Miss Riley Roo!
Riley had a special visit from Hannah yesterday (she's our part time nanny for those who don't remember). Unfortunately, Riley had her ST right before Hannah's arrival and OT during Hannah's visit so she was pretty zonked after. Hopefully, the next time Hannah is here she'll be more awake! This sweet picture is of Riley holding Hannah's hand. The love they have for each other is amazing and Riley is one lucky girl!
We had our first roundtable meeting with the team that is over seeing Riley's care and rehab. It felt like we were back at CHOC during rounds as we sat with 10 people who were going over Riley's case. It has been decided to reduce her dosage of Baclofen as it has made her super sleepy since she started on it a little over a week ago. Funny thing is once we got back to the room after the meeting, Riley had an hour of the most alert she's been since she started the medicine. So, hopefully with her body getting used to it and a slight dosage decrease she'll be even more alert and awake in the next few days! They've also taken her off the melatonin at night and will only do the albuterol treatments as needed. Her formula has been lowered calorie wise and she's getting water after each feed too. Riley has put on some lbs so it was time to back off on the calories for now. I'm looking forward to seeing Mason and Riley next to each other to do a size comparison because Riley was always 2 pounds less and I have a feeling she may be even bigger then her brother now!
Yesterday, during ST they did more VitaStim which helps to work on her swallowing. She's been getting pixie sticks that are dipped on a long q-tip to help stimulate her swallow. I'm sure Logan would be insanely jealous if he knew we were letting her have pixie sticks! She still saves up saliva in her chipmunck cheeks and drools quite a bit but, we've noticed quite an improvement in her swallowing.
OT had her moving all around and sitting up. Riley needs to move! After 4 1/2 weeks of basically doing nothing but sitting in a bed all the stretching and new postions and challenging therapies like sitting up, working on her head strength etc. are really good for her. Riley gets nightly baths in the shower room in this neat shower bed that rolls right in. She really seems to enjoy them and the lotion massage after. I consider this therapy as well! What gal doesn't like a nice bath? I tell Riley it's her Spa visit.
We're settled in and we are impressed with the care and plans they have for Riley here. There has already been talk of decannulation (removal of the trach) and how to get Riley to the point where that could be done. It's not happening tomorrow but, the doctors here really believe in getting kids off of the trachs ASAP if they can. I'm hoping and praying Riley will be a canidate for this and really the only reason she has it is for her secretions so if we can get those under control I think it is a real possibilty. We like this philosophy, who am I kidding we LOVE this philosophy. We're realistic though and know it may not happen for a long time and possibly not at all, although I really don't think that this will be something Riley has for a lifetime. So, we're learning all about the care Riley is going to need. Changing the canula, ties etc. Before she had the surgery I remember talking to the trach nurse about being able to take the kids with me to do errands, park, pre school drop off. She never told me that I was going to need someone who knew how to care for the trach with me if I was driving. It's a safety issue in case something were to happen and I wasn't able to pull over fast enough to care for Riley. So..... I'm happy we know now so we can plan this in to our future as well! I joked with Dave that if we lived in NYC we'd just hire a driver. Instead we'll make due and hopefully once we figure out when we're headed home we'll have some home health care for Miss Riley as well.
The g-tube will be in for a minimum of 3 months. Again, Riley is not even close to discussing it's removal but, the medical director here explained to us that it has to at least stay in for 3 months before it could be removed even if she was ready in 2 1/2 months to have it out. Something to do with scaring etc. Again, I'd love for it to be out sooner rather than later but, we're realistic and know it will stay in as long as it is needed. It's just nice to hear a team of doctors talk in terms of removal and how they will work to get her to that point! The positivity and plans to get Riley going on the path she needs to be on really have lifted our spirits after a few rough days at CHOC towards the end of Riley's stay.
We're hoping to be able to get Riley in the stroller in the next couple of days. We just need to learn how to use the portable breathing thingy (I don't know it's proper name) in case something were to happen while we were mobile. Of course we're not heading to the mall or down the street but, we'll start by walking Riley around the facility and then move on from there.
For now I'm spending a couple of hours at our office working on taxes, filing medical bills and trying to organize. Dave's off on a few job walks. It feels nice to be doing some "normal" things although being away from Riley is killing us both right now. Grandpa Hopper met me down at Healthbridge this morning and is spending the day with Riley so we can get these important things done. Dave will meet him to relieve him this afternoon. We're so fortunate to have family and friends who are willing to do all of these things for us. We don't ever leave Riley alone and even though we've been told we don't have to spend the night, we always will. Fortunately, extended family can stay with her as well so we may take them up on this offer soon so we can both be home together with our boys.
I sent out another round of shirts yesterday! Hopefully, if I got your info in time you'll have your shirt in the next few days! I will always have more so if you ever want one just email me.
Thanks again for everything! And thanks to the Puertas family for the sweetest addition to their son's birthday party this past weekend! xoxoxo
You are all amazing and the cheerleaders, prayer warriors and good thought senders Riley needs!
Dave, Megan, Logan, Mason and Courageous Riley