Happy Belated Memorial Day!

Just a quick update on how our Nolan is doing.

On Sunday morning Matt and I joined our little ones at the Cabin. Nolan had a good night with my parents...he was a little congested, but as the weekend went by he sounded much better. So, the antibiotic is doing its job!

Sunday we had a fun day. All the families on our road at the Cabin got together for an Annual Memorial Day Parade...all the kids on the lane walk in the parade; so we road on the back of our golf cart (my mom, dad, Riley and I); it was so cute and there were so many families and kids involved! After the parade there were games for the kids and the adults, then a picnic with a band, food, drinks...AND the weather was just amazing. So, it was a nice day. We actually took Nolan over to the picnic and watched from afar. He really has not been around so much action, so he was totally interested in the music and people watching.

Monday was just as gorgeous so my dad, Matt and cousins worked on a huge play-set they are building for the kids and I actually got to get out and kayak with some of my good friends. It was my first time kayaking EVER! I haven't had a moment of peace like that in so long. I loved it...and think Matt and I are going to try and do it more often this summer.

Nolan just loves the cabin. He love the outdoors, watching Ben and Riley run around and being in another environment other than our house. I am a bit crazy, stocking the area with ample supplies of hand sanitizer and Clorox wipes. I am pretty sure the cabin has never been cleaner! I am so thankful we have this place or else Matt and I may have gone totally crazy being in our house all summer.

The latest with Nolan. He seems to continue improvement from the virus. I am pretty sure Riley had/has whatever Nolan does, and both of them seem to be on the mend. Physically Nolan is doing amazing. He can definitely army crawl from one side of the room to the next. I think we may see him crawl pretty soon. More and more we have been working on standing and walking with assistance. He is getting used to the walking motion. Tonight our OT came over to work with me on Nolan's oral feeds. We have a long way to go, however he didn't do too bad tonight. He did not gag at all and was actually bringing some food to his mouth. So, I have a new plan and feel more comfortable working with him.

We should hear more tomorrow from our transplant team on our next steps with Nolan. We are still in the process of adjusting medicines and need to get a neurology appointment at Hershey soon to discuss his anti-seizure medicine and whether or not it is necessary. So, more on all of that soon. His next biopsy is July 18, so I am HOPING that is our next trip to Pittsburgh. We will also meet with GI to discuss his feedings.

I hope everyone had a great start to a short week!

#nhos