We've had a great weekend. We were able to take the boys to my goddaughter's first birthday party yesterday while Grandpa Hopper spent literally the entire day with Miss Riley. We can't thank him enough!
Oh how I wish Riley could have been there to celebrate her first girlfriends birthday! It was a fantastic party and both the boys were zonked after! I've been looking forward to this party for weeks and I am SO happy we were able to attend as a semi together family. It was a ladybug theme and the decorations, food and favors were all so perfectly coordinated. I forgot to take more pictures with my real camera and only snapped a few with my phone but, it was a perfect afternoon celebrating the sweetest little girl and her amazing family!
I knew that after Mia's birthday I'd have to start thinking about Mason & Riley's birthday and the fact that in reality Riley won't be home and we won't be having the type of party I'd already planned out in my head 6 months ago. So, today I've been sad yet, trying to figure out a good way to celebrate my babies and celebrate life! One of the nurses asked me about Riley's upcoming birthday today and it took all I had not to cry. But, it is what it is and eventually, one day, we'll have the party I had always envisioned.
Yesterday, we were also able to see two individuals who I always, always think about especially in those moments that really overtake your thinking and try to make it so you are unable to see in to the future or see that there is a future at the end of this road that doesn't involve our family always being apart and trying to coordinate schedules that continually change . I think being in their presence and having conversations with them made me leave feeling a new sense of calm about Riley and this situation we deal with day in and day out. There really are people all around us that continue to lift us up.
Today Logan was able to go with Grammie & Pa Doug to their house in Del Mar. On the way they stopped in to see Riley and Logan got to play at the beach after. Only in CA are we heading to the beach in the middle of February and then putting our flip flops away for another surge of "winter" two days later!
Jen Jen spent the night with us last night and we headed down to meet Dave and Riley after Mason took an extra long nap this morning. We ended up waking him up after 2 1/2+ hours. Jen Jen was able to hold Riley and see her new room. Mason was crazy as can be climbing on anything and everything he could get his little hands on!
Tomorrow we deal with Riley's GI issues. It's a mystery to just everyone what is going on with Riley. Is it too much formula too fast? A tummy bug? GI issues with digestion? Acid reflux? Lack of good bugs in her tummy? (they've added probiotics to her meds) Teething? A combination?
All we know is as soon as Riley starts her feeds she starts to get agitated and it's been happening for 10 days or so. They stopped her feeds Friday and she had pedialyte for 36 hours or so and seemed to calm down a bit but, still was bothered. She needs her calories so they started her back on formula today but, the volume and time that she receives her feeds have been adjusted to allow her more time to digest. Riley has always been a light eater and would rarely finish her bottles whereas Mason was always eyeing her bottles at the end of a feeding. I hope it's just a matter of figuring out how to get her the calories she needs over a longer period of time and not something more serious. My gut tells me it has something to do with her gtube but, I am not a doctor nor a nutritionist so I could be wrong.
At first we thought we'd be transporting Riley ourselves back to the CHOC clinic and the fear this thought brought over us was overwhelming. Thankfully, transport will be arranged and we won't be taking her by private vehicle but rather accompanying her on her ride over. I hope and pray she's in and out and they figure out the issue without us having to do anymore procedures. I also thought last night that maybe since it's been almost 4 weeks they will put in her button and take out the longer tube but, that may be wishful thinking. We'll update tomorrow when we know more but, we really hope we find some answers for Riley. I think this will be a piece of the recovery puzzle that will help her be more active in rehab and alert during the day if they can figure out what ultimately is going on!
We moved rooms on Friday which meant Riley had to be re-evaluated by all the different therapies, we had to fill out in take paperwork again and we had to get used to new surroundings on the other side of the facility. Riley was taken off of the sub-acute care classification and put in to the acute care side. Yay! Another step towards home! Basically, we moved across the small facility to have the same nurses, doctors and staff but, the insurance is now billed differently:) The room is cute but, hot and bright. My entire family is warm bodied and Riley is super sensitive to light right now so we will probably, hopefully, move two doors down tomorrow to a cooler, darker room. It's been warm here but, not So Cal summer warm and I can only imagine on a 90+ degree day how hot it could be in here.
So we're in a holding pattern until we figure out what is going on with Riley's tummy. I have no idea how fast we'll get in to CHOC tomorrow. Hopefully, sometime tomorrow afternoon. We start another new week though still feeling optimistic and feeling very happy with the little progress that Riley is making.
Dave, Megan, Logan, Mason & Courageous Riley!