Could It Be?!?!

Sorry I did not post last night. Riley and I got cozy on the couch and fell asleep. I woke up around midnight and was super confused where I was at!

Matt is with Nolan back in Pittsburgh. His mom is there with them helping out. Yesterday Nolan had a speech therapy consult. Matt said he didn't do as great eating as the other day, but that is OK because this was an evaluation for insurance purposes to vouch that he needs speech therapy. Our plan is to have either OT or speech therapy every day since oral feeds seem to be our biggest hurdle right now. I think we'll have PT 2 - 3 days a week. This is while we are at CHP and at home (I HOPE!)

Today was a busy day. Nolan had labs at 8 am, followed by his cardiology clinic visit. Since Nolan just had an echocardiogram on Tuesday before his biopsy, they didn't do another one because they said his heart looks great. And his liver and kidney functions look normal. So, we went down to lasix twice a day instead of three times. And last, but not least, we were told that we can head home (Muncy) next Friday! Ahhhh! I can't believe it! Can this really be? HOME. All of us, together. My mind is spinning. So much stuff I wanted to do before he got home, but OH WELL. We'll have all the time in the world to get our home life back together...but HOME, all four of us. It seems too good to be true!

With that said, we are praying we have a good weekend and week. They have been going up on his bolus feeds for a shorter amount of time. He has not thrown up or really gagged in over 3 days! We have a GI consult before we go home on March 28. I am off to Pittsburgh tomorrow after work. I am really looking forward to this being over and all of us being home together. I think Riley really needs it. She is going to have some changes coming up in the near future also. Riley will be heading to pre-school starting March 31. On that day we also should have home nursing set up for Nolan 5 days a week, 10 hours a day. We will have this for about 6 months. He still needs some medical attention because of all the medicines he is on, the NG tube and feeds and for someone that has some medical background to know if he needs medical attention.

It's a lot. We we are ready, but in my true OCD fashion, I wish I could have the house 100% perfect. But, Matt's mom spent a lot of time cleaning his room and our bathroom from top to bottom. The rest of our house is just clutter from it being our dumping ground as we come back and forth from our weeks in Pittsburgh. SOON ENOUGH we will have our HOME back. :) I just can't wait.

OK - Riley and I are heading to Hoopla's with my mom and dad to play some games and watching some basketball. A week from tomorrow we should be traveling back east with our boy!!

#nhos