Word is Spreading

Things are getting real in Pittsburgh. The word is spreading that we will be leaving soon and it's starting to hit both Matt and I, and all of our nurses, therapist and staff that have been involved in Nolan's care. We started this journey almost 5 months ago (and yes, we have a lot more to go) but the first book is almost over and we are about to start a new one. Nolan's second chance at life. Once he is discharged from the hospital it will truly be the first day of a new life for all of us...and when I say ALL of us, I mean ALLLL of us (friends, family, etc.) It will be awhile, but I can't wait to introduce Nolan to the world again! He has been in the hospital longer than he was out! But, with Nolan being on anti-rejection medicines, he is more prone to getting sick because his immune system is compromised. The experts recommend that Nolan steer clear of large crowds and public places 6 months post transplant, and especially during flu season. So, we may be super germ-o-phobes for the first year or so, but I am sure once we acclimate to life we won't be as scared. We shall see.

The weekend is approaching! I have a SUPER busy one, but a very EXCITING one! I am really looking forward to seeing all of our friends, family and supporters on Sunday at Nolan's benefit, Chili & Chocolate. We have so many wonderful people participating, volunteering and donating. Come out and enjoy this spectacular Sunday Funday!

Nolan had ANOTHER amazing day! Matt says that every day is better. He said he is such a happy boy! It makes me so excited and scared just because we have not had this sort of feeling in so long. Knowing that our baby boy is actually "healthy" is amazing. Like Riley tells me all the time, "Noley isn't sick anymore!" She is right!

We have had an amazing experience with the physical therapy at CHP. There was a core group of ladies that have been working with Nolan since the beginning, and they are overcome with joy to see how quickly he is progressing. Matt claims today was the best PT session ever. Nolan responds well to all the PT ladies because 1. He's a ladies man, and 2. They always play with him! He does get a little cranky when they try to make him put weight on his legs - but what's therapy without a little pain? I really think Nolan will bounce back quickly from a physical standpoint. Nolan also was a big shot during occupational and speech therapy today! He let them put a bottle in his mouth for about 10 minutes, which is pretty huge. It is the first step in introducing it and hopefully giving him some practicing on how to suck. He also ate about 10 ml of pears!

Nolan seems to be tolerating his feeds a little better. Not many throw ups today, and Matt said he only had to do one small load of laundry. Progress! Tomorrow is Nolan's second biopsy. He will go in the morning, and we should have preliminary results by Saturday. Sunday we will know more and I think this will give us a good idea of when we will actually come HOME to Muncy. Yay! Also, I am sure by Monday morning we will know when we will be discharged to the Ronald McDonald House. Matt said the administering of meds is going well. They are looking to adjust his med schedule to hopefully acclimate better to our schedule at home. Slowly he will get rid of his meds and eventually be on the two anti-rejection meds, which he will be on for life.

As our time is coming to an end as an inpatient, we are starting to become a little sad to say good-bye to our wonderful nurses, APPs, therapist, doctors and surgeons that have literally SAVED our son's life. How do we ever repay these amazing individuals? I hope you all know how grateful we are to you and Children's Hospital of Pittsburgh. We made the right decision coming here, not because he is doing well, but because of the professionalism and expertise that is at CHP. I know we will continue to build a bond with many of the people at CHP through social media and visits to CHP for future appointments, but not seeing some of these individuals day-to-day will be hard. So, THANK YOU everyone!

My last bit of the night is a shout out to Ayers family! They welcome Amelia Iris Ayers yesterday at 5:57 am, weighing 6 pounds, 14 ounces and 19 inches long. They Ayers family lost their second child, Eleanor Lily, to cardiomyopathy April 25, 2012 when she was just 8 months old. Ironically, as rare as children's cardiomyopathy is, we live in the same community. So once we found out about each others stories, it was nice for me to talk to Jennifer (Amelia and Elenor's mom). It was the first time I had talked to someone with a similar story and similar feelings. Jennifer has been a big supporter of Nolan, and I am truly grateful for that. Amelia is a GORGEOUS baby girl. I got to hold her, which melted my heart. CONGRATS, AYERS! Check out more about their foundation, Ellie's Heart Foundation, by going to http://elliesheartfoundation.org/.

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