Happy Wednesday! It's hard to believe we are already half-way through the week. My morning started early at 5 am with a wake up call from Riley. So, I got her morning "milky" and we laid back in bed until about 6:15 am - Riley watching Sprout TV, and I resting my eyes a little longer. Nevertheless, I had a pretty good
day. Riley is in Harrisburg with my parents are the farm show until tomorrow. They said it was a great day and Riley enjoyed seeing all the animals. When they were in an arena watching my dad show livestock (or something like that, not really sure what he does...politicians...), Riley would yell out to my dad, "Hey Pop!" "Be careful Pop!" and my most favorite, she would turn to the crowd behind her and yell, "WE ARE!!!" Yes, I know all you Penn State fans love that one. :)
I enjoyed my evening...I actually went to the gym, Target, grocery store and packed for this coming weekend and next week. I forgot how much you can get done in a night without kids around! It was nice at first, but now it's lonely, I miss my family! I can not WAIT for us all to be together...healthy, happy and at peace. Nolan has had a decent couple of days, however he has been struggling with some agitation again and low blood pressure. They do not think the agitation is because of weaning sedation, but that he is generally not feeling good. His H&H levels are more towards the lower side, and he has been receiving medication to help balance that so we do not have to have a blood transfusion. I think the more blood transfusions he receives, the more he could begin to build up immunity towards various blood types, thereby only allowing him to accept a heart from his blood type. Throughout this evening Matt said his agitation got to a point where it was replicating a few weeks back...very high heart rates and constant crying. Just not a place that is safe for him. So he is now getting a blood transfusion and they are balancing a couple other medications. I am hoping to get some better news tomorrow morning. Like I have said SO many times before, it's a balancing act. One little thing can disrupt so much. I am praying for a good night...for both Nolan and Matt. I think Matt is staying in his room tonight with him.
Before he got real crabby, he did have a pretty decent day. Music therapy came by, which he loves. I am not sure if PT and OT did, but Matt did say he seemed generally happy. We are just so ready. As many know, it is beyond hard to see your child struggle. We can only be the best advocate for him in hopes that the team makes the right decisions and pray for some peace. I am starting to see when it's good, it's great...when it's bad, it can get bad quick. I just hope we are not going in that direction. I am so looking forward to bringing Riley this weekend, but if Nolan is needing a lot of assistance, it just will be hard on all of us if she is there. With that said - prayers for a GOOD NIGHT!
I do have some good news! One of my best friends from high school, Mel, and one of Matt's best friends from college, Vince, had their second baby yesterday at 11:16 pm. Ahna Joyce Myers was born 8 lbs 11 oz, 21.25 inches long. Congrats Mel and Vince!! We love you all so much! And yes...Matt and I introduced them a long time ago at a Penn State football game. :) (PS: doesn't Mel look amazing?!)
Well, we are officially sliding into the weekend! I am off to bed!
ONE MORE DAY CLOSER!
#nhos
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