Frozen Again

Well, we are on the second time watching Frozen and we just got it two days ago. This time Riley can't seem to get close enough to the TV. With that said, we let Riley back in the house. Hahaha. I am pretty congested too, but I think mine is allergies...at least I hope. I am keeping my distance from the little guy.

Nolan had an amazing day. We have slowly been increasing his bolus feeds and decreasing his feeds at night. So far it has been going great. This was the first day that he has not thrown up AT ALL in a long time (hope i didn't speak too soon!) He is in such great spirits and has really turned a corner. I pray that everything stays this way.

Tomorrow Matt and Nolan will head back to Harrisburg for his appointment with the Hershey's Pediatric Heart Group. I am sure all will be well since he just had an appointment a week ago. Our next appointment will be April 24 back in Pittsburgh. At that time we will have a normal clinic visit with the transplant team. We will continue to see a cardiologist every two weeks until probably after our next biopsy, which is on May 16.

We have almost been home for two weeks. It hasn't been easy, but it is also not the most difficult thing. It is super stressful worrying about germs 24/7 and it's not easy to be home bound...but it beats being in the hospital. I have thought a lot about our past 6 months and it now truly feels like someone else's life. There's definitely a healing process involved in all of this. I think my next step is to write the donor family a letter. I thought today what better time than this weekend, Nolan's first birthday weekend. It is because of this family and their courageous decision they have allowed Nolan to celebrate this day. I want to thank them for that.

I can't believe that tomorrow is already Thursday. I pray that Nolan has a good appointment and that their travel is painless.

Well, Riley is asking for Frozen "one more time." Maybe we are off Caillou. PLEASE!

#nhos