Today I woke up and snuggled with Logan who slept in daddy's spot next to me last night. It was a crisp, cool morning here in CA and I felt refreshed. Mason had been up playing with Grandma and I spent some much needed time with him as well. Logan had been asking to go back to the hospital and visit Riley so we both got ready to hit the road.
First, we stopped at the donut shop down the street. We live in a community that has a small shopping center with a grocery store, cleaners, donut shop, pharmacy etc. Everyone knows you when you walk in to any of these places and Logan particulary loves the lady Sue that owns the donut shop. While we waited for Sue to get Logan's donuts and my Diet Coke I looked at the picture on the wall that I have glanced at time and time again but, never took the time to read. It's of a teenage girl who beat some sickness, I'm not sure which one, and at the top reads "Miracles Happen Everyday". For some reasons it just shook me and I took 2 or 3 glances at it while Logan tried to decide between apple juice and chocolate milk. We're still in the middle of paying it forward and Logan had asked me if we could pay for some other peoples donuts today. We told Sue about it after briefing her on Riley and we're excited to hear her stories the next time we grab donuts!
We were finally on the road and Logan was talking my ear off. He was telling me about what all his friends had asked for for Christmas and how he can't wait to see them tomorrow at school. It was nice to share some one on one time with my little buddy. Then we got a text from Dave asking if we were at the hospital yet. Instead of texting, as we were driving, I called him. Dave's exact words were I have a New Year's surprise for you. I held my breath and he said Riley opened her eyes. Such a relief! Not only that but, she is tracking more in one eye but, she's still tracking and opening her eyes!
We got to the hospital and Dave greeted us at the 6th floor elevators with a big hug. We then went to see our pretty princess or sissy to Logan.
Logan was very happy to see Riley and we huddled around her bed touching her and talking to her. It was at some point during this that her right thumb began twitching rhythmically. My mom had arrived right after us so I asked her to take Logan to the playroom while Dave grabbed the Resident. They decided to give Riley Ativan as she was having a seizure. It was the same side as the other day but not as involved as it was only her thumb not her whole hand, arm and mouth. She relaxed and seemed to rest after.
We had Logan come back later after things had settled down and Riley opened her eyes for him! Such a great moment and I wish I had it on film. He loves her HR monitor on her toe and the glow it outputs. He also looked at the monitor and commented how the O2 level was 100 the other day. That kid remembers everything!
We had two care packages this morning from Erica and the Drudge/Eilers/Thomas family. The pictures that Tanner, Cayden and Myka drew are just precious and adorn the growing wall of cards and pictures decorating Riley's room. THANK YOU again guys. The nurses are starting to really like the daily cookies we've been able to stock in their breakroom.
A little before noon we had a visit from Joanna and Mark who also brought us a wonderful care package to stock up our room. Thankfully, they were here and available to leave to pick up my brother Brad from the airport as my dads car overheated somewhere between Arcadia and LAX.
Seeing my baby brother walk through the door was both comforting and hard at the same time. We are both parents and we both NEVER would have expected to have to be standing at one of our children's bedsides together EVER! Brad has such a calming presence and him coming out from CT for a few days was really needed. Molly, Brad's daughter asked him to give Riley huggies. They also brought Riley the softest pink bunny I have ever felt.
We spoke with a few doctors today. The neurology team talked to us about the unknowns and what ifs. We know that Riley may have some learning disabilities and may also have cerebral palsy and also may be on seizure meds for the rest of her life. Again, these are all speculative but, we're trying to be honest with ourselves and appreciate the honesty of our doctors so that we can prepare to care for Riley. We just want our baby girl home with us. I was very nervous they were going to tell us something worse. It's still a waiting game. Possible brain damage, possibly not. Pretty much we just wait.
We also had a visit from Tia T and Uncle Mike. As we left CHOC to grab lunch Dr. Nugent was walking out as well. She's on the hematology team. She was reassuring and comforting and really made me feel at ease about everything. She talked about telling her Residents to be honest with parents and she was happy the neurology team was being honest with us. She had also let us know earlier that Riley's white blood cell count was up and they took her off the heparin and on to the shot for blood thinning (name escapes me now).
When we got back I was in the room with my brother and dad when the new Attending came around with a brand new Fellow. The Attending was wonderful. He spoke to us about the plasticity of the young brain and how that was something that regardless of what happens over the next few weeks Riley has on her side. He also said he's seen this situation go both ways. He was surprised she's opening her eyes as she's on a pretty heavy seizure medication.
So like the other days, today was filled with ups and downs. We see today as more of an up day though. Riley is continuing to open her eyes at us every few hours, respond with purpose to stimuli and all her organs continue to remain strong.
I shared a badge on facebook made by my MEMOS. They all know who they are and they have been such a wonderful support to me the last few days. Feel free to use this badge or share it. Whenever, I look at it I am reminded of each of them and also the fight that Riley has in her! Thanks again guys! xoxoxoxoxo
And to my Maliboozers you all rock!
I hope I haven't forgotten anyone! I am trying so hard to write things down, thank the right people and keep everything straight. So, if I haven't personally mentioned you by name please accept my apologies!
I hope you all had a great New Year's! We had the best day with our baby and watching her react to us and open those eyes! I anticipate tomorrow to be busy as we are coming off a holiday weekend and things have been semi quiet around here. For now please continue to pray. Riley has a very long road ahead of her.