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

Never A Dull Moment

Well, not the start to a holiday weekend that we expected.

Yesterday Matt and I started our weekend off by having happy hour with some friends. Just a short time after we got home it was clear that Nolan was not feeling well. There's one thing for sure - when Nolan is not feeling well you can tell. He was lethargic, cranky, feverish and just wanted to be held. He also threw up several times. Matt called the on-call cardiologist at Children's and since it wasn't necessarily "life threatening," they said if we felt there was something actually going on it would be best if Nolan were to come there. So, off Matt and Nolan went around 6:30 last night. They got to Pittsburgh around 10:30 and Nolan was admitted. They ran some tests and right off believed that Nolan has an ear infection. He has had a low grade fever on and off all week - a lot that we attributed to teething. So right away they started him on some antibiotics.

So, Matt and Nolan had a long night. Matt gave me the play by play throughout the night. Nolan's liver enzymes are still trending on the high side, which has caused concern for the transplant doctors and our GI doctor. Over this past week we discussed this with the team. Our plan of action is to get an appointment with neurology ASAP to discuss decreasing Nolan from the Keppra, medicine that prevents seizures. Once that was weaned and if his liver enzymes were still high, we then would switch his anti-rejection medicine, which currently is prograf. And if THAT didn't work we would then have to get a liver biopsy to get a further understanding as to what was going on.

Fast forward to this morning; Nolan looks much better. He is his happy self, despite a little sleep deprived. Nolan does have an ear infection and a little viral infection. Like our transplant coordinator and doctors say, Nolan will get sick. And the first time will be scary. Thankfully it is not anything to serious and we caught it very early. When Nolan isn't feeling good, you know. I know it seems crazy to run straight to Pittsburgh, but they know him best. It is amazing how far you will travel to receive good healthcare. Since they specialize in children with transplants, it is just where we feel most comfortable and confident.

SO, as we speak, Nolan and Matt are on their way home! Today Matt and I were to attend a wedding of some dear friends of ours, Pat Moriarity and Keri Matty...well, I THINK we may make it to the reception. YAY! We have been looking forward to this day. My parents are looking forward to watching Nolan and Riley tonight...then the rest of the weekend we are going spend at the cabin. So, I can't wait to see Matt and my little man. I have missed them both so much!

WELL - that is the latest in the McLaughlin world! NEVER A DULL MOMENT! Life is ALWAYS keeping us on our toes. We are looking forward to see some great friends tonight and spend the rest of our weekend with family. I will send an update tomorrow at the cabin!

#nhos