I started this post two days ago so I want to leave it as it was but, add to it. We had such a fabulous weekend with Miss Riley and all of the friends and family that visited. Riley is so lucky to have so many people that care about her and so are we. We had a busy weekend with Ron/Chris, Erica/Donovan, Debbie/Jerry, Uncle Scott/Drew, Uncle James, Grammie/Pa Doug and Grandpa Hopper spending time with Riley. The highlight of my weekend was all of my babies in bed with me when Mason and Logan visited together today. There is nothing in this world better then snuggles from your babies! Anyway, we took Logan and Mason out on a mom/dad date today to Chuck E Cheese and even though I wanted to sanitize the entire place we had a wonderful time!
Now, I'll leave you with what I wrote a few days ago....
I've often wondered about the bond between Mason and Riley. In fact, long before Riley got sick I would look at the two of them and think about what they thought of one another.
They are fraternal, obvioulsy, yet they still seemed to have a secret bond that only twins shared.
Mason is young. Will he remember any of this one day? I really don't know. He seems to be thriving. He gets one on one attention daily that he only got sporadically before. Does he miss Riley? Does he know she isn't sleeping in the crib next to him each night? Really I don't know the answer to these questions.
Yesterday, my parents were able to bring Mason down to visit Riley. Before they arrived I changed Riley out of her PJ's and in to an outfit complete with leggings and a bow. I informed everyone that Riley's twin was coming to visit and was nervous with excitement to see how they were with each other. During the last 5 + weeks they had only been together one other time when Riely was in very critical condition.
Mason and my parents arrived and we met them out front. We took Mason to Riley's room and he seemed overwhelmed with everything that was going on in Riley's room at first. The equipment, stuffed animals, toys etc. When we first put him on the bed with her he seemed more interested in her humidifier. Then, it happened. As dramatic as it sounds it really happened this way. Mason reached over and grabbed Riley's hand. I exchanged glances with my mom and of course we both started crying.
Unlike Logan who can express how he misses Riley, Mason can't. I never knew the bond they had until that moment. We were able to put them both in their stroller and walk around the inside of the facility. The entire time Mason was trying to play footsie with Riley, just like they always did when they rode in the stroller together. Riley wasn't as fond of the game as she had been before but, I know she knew Mason was there with her.
Hopefully, we'll make Mason/Riley visits a weekly thing.
Riley had a great day today after a really crappy night. We had started noticing a trend in when Riley would become fussy or aggitated recently. Her aggitation seemed different in that she wasn't posturing as she did when she first woke up and she had started to arch her back and wiggle her entire body when her fits would start.
Last night, I was actually sitting with her in the rocking chair when they started her feeds at 6pm. Not 10 minutes after her feeds started she was super fussy and uncomfortable. It all started to click and I called Dave because I knew hed had the same thing happen the night before around the same time. We pieced our experiences together and started thinking she was gassy. I got a nurse in the room ASAP and she listened to Riley's tummy and agreed with me. They were able to "vent" Riley's gtube to get the air out of her tummy and she has seemed to be feeling better since.
We did have a rough night though while she worked through her issues but, despite the lack of sleep I was able to lay in her big girl bed and rest with her until Dave got to the hospital around noon today. Seeing her sleeping so peacefully in my arms made the long night worth it.
While Riley was sleeping with me today she was scheduled to have ST. Since she was so comfy the ST decided to try the passy valve again on Riley's trach. Low and behold she was able to keep it on for 40 minutes without a change in BP or O2 levels. This was a huge step for Miss Riley and one that she needed to take in order to see if she would be able to eventually come off of the trach. Hearing her voice, even though we've heard it over the trach, was an added bonus to the passy test. Riley continues to amaze us.
I'm home with my boys tonight and loving every minute. Mason is eating table foods, cruising the couch and looking like he is about to take his first steps. I may or may not be hoping he takes those steps while I'm home. Wednesday when I got home and picked Logan up from school we went to get frozen yogurt and made an Old Navy run to redeem some coupons I had. Logan loved riding in the stroller with Mason although, he looked quite ridiculous as he isn't exactly a small 4 year old!
Tonight, Riley has been more alert and awake and Dave is enjoying some one on one time with her. We have many visitors planned for this weekend and can't wait to show Riley's new home off.
She continues to amaze all of us and take the little steps she needs to. Riley truly is courageous.
We hope you have a great weekend!
Dave, Megan, Logan, Mason & Courageous Riley!