What's The Latest

It got later than I anticipated, but here is the latest from our recent trip to Pittsburgh!

We got in Thursday night and stayed the weekend with our great friends, Rob and Alisa Zisman. Nolan had to be at same day surgery at 6 am, so it was an early wake up call for us Friday morning. Once he gets into the procedure, it is pretty quick. We actually spent most of the time speaking to one of our transplant doctors about Nolan's medications, genetic testing and what the next 6 months will look like. This was also Dr. Lal's (transplant doctor) last weekend at CHP, as he is heading west to Utah. It bums us out because we really clicked with him and we all have grown close; and I know he enjoyed watching Nolan progress so well. There are many doctors we really enjoy at CHP, but we will miss Dr. Lal.

Once Nolan got out from the biopsy we were called back to the recovery area. He was super groggy, but otherwise was doing well. We ended up leaving the hospital close to 1 pm and spent the rest of the day relaxing at Rob and Alisa's. They have a son, Enzo, around Nolan's age...so it was fun to see them playing with one another. On Saturday morning we got a call from Dr. Lal letting us know that Nolan's biopsy came back with zero rejection - which is the best we have ever had! We were so thrilled and relieved! The rest of the weekend we really just relaxed, went out to eat, went for a walk/picnic in Frick Park...it was exactly what we were looking to do. So, again - THANKS Rob and Alisa!

Monday morning we had an appointment with our gastroenterology at 8 am to discuss feedings and his liver enzymes. His liver count came back normal, which is great! But now the question is why his counts were elevated in the first place. Most important, Nolan needs to be on a prophylactic antibiotic to protect him from certain ailments, most notably a type of pneumonia that could be fatal. So, he will start back on Bactrim this week - and if his liver enzyme elevate, we'll now know it's the Bactrim. We also started him on Pedia-sure instead of formula. He is now down to 3 bolus feeds a day through his NG tube, as well as relying on oral feeds for his caloric intake. So, we are making progress!

ALL IN ALL - it was a great weekend. It was everything we wanted to hear...and MORE! It has been a busy week...actually, July has been pretty crazy! This weekend we are heading to a wedding in the Finger Lakes. I am actually looking forward to a get-away with Matt and taking some time to ourselves. BUT, I also miss our kids, so I am looking forward to our life slowing down a bit.

Thank you all for the continued support and prayers. We are beyond blessed on how well everything has gone thus far and hope things continue to move in the right direction!

Off to bed. GOOD NIGHT!

#nhos

A Busy July

So far our month of July has been crazy, busy! But all in a good way. This past weekend we had our annual family party at our cabin. Nolan made a small appearance on Saturday, but was otherwise with his Meena and Grandfather McLaughlin throughout the weekend (along with Riley). We are still not having him around large crowds of people, and it is good that he gets used to spending some time with his grandparents! Over the weekend his crawling skills when from stumbley to a full out crawl. He is a quick one and even quicker to pull himself up on anything he can. It is so amazing to see, but we are now having flashbacks on how it is dealing with toddlers. The baby proofing has begun again in the McLaughlin household.

This coming Friday is biopsy day. At first I wasn't really nervous about it, but now I am thinking more about it and I am. He is doing so well, I just hate the thought of having to go through the sedation and being intubated. BUT, it is a same-day surgery and he has done well in the past...I am just anxious to get it over with. While we are in Pittsburgh we also have an appointment with GI which we will discuss his feedings. He has been eating more food, so I would imagine we will (hopefully) remove the ailmentum formula and use something more like pedia-sure so we know he is getting vitamins. The eating has been going amazing. He is chewing and swallowing, drinking water a little...and not gagging (actually ENJOYING it). So, I think we are on our way. Which is a good thing because the more mobile he is the harder it is becoming to keeping him in one place during a feeding!

Well, I am off to bed. We leave for Pittsburgh after work tomorrow. I will update through the weekend!

#nhos

Summer Sundays

It is weird to me being able to sit outside on the deck at my family cabin at the picnic table on a computer. If you would have ever told me that as a kid I would have never believed you! But, here I am. It's 4:00. Happy Hour. I am sipping on a cold adult beverage watching Nolan rock in the swing while he naps...and yes, he is totally TOO big for the swing, but he loves it. It groans as it rocks back and forth...but it's still swinging! Riley and Matt are down in the creek playing...I can hear them chatting and laughing; it is a sweet father/daughter moment. SO - I guess I am trying to say LIFE IS GOOD!

We are getting into our new life, one we are comfortable with. Hospital days are a distant memory, but still haunt us. We talk about the good and the bad. We miss many of those that cared for us so dearly at CHP, but we know we get to have our occasional visits around biopsy times.We are almost 6 months post transplant! I can see now that I had a lot of coping that needed to be done from that time until now. So many adjustments...a lot of firsts...fears. But, I am to a point where I know he is healthy and we now need to focus on OUR life as a family. There's no doubts that we are going to have our scary moments with Nolan - and we are realistic, but it is time we go back to living...with our antibacterial hand sanitizer in hand and Clorox wipes, of course. :)

SO - to date Nolan is now starting to sip water without gagging...and eating food. Mashed potatoes, rice crisps, veggie sticks, bananas...to name a few. Physically he is SO ready to walk. He is crawling (not quickly or to the best form, but he is definitely on the move) and this past weekend he started to cruise a little. Matt and I definitely get a little emotional seeing this because there were MANY, MANY days where we could not even imagine him sitting unsupported let alone WALKING! It is such a blessing. There's no other way I can explain it.

Next weekend is our family's annual party out here at our family cabin. Nolan and Riley will spend the weekend with Meena and Grandfather McLaughlin because it is such a large crowed and a time for us to let loose with our friends and family. We are SO, SO excited to see everyone. Matt and I seriously have had this on our brain as day as a milestone...we would say, by Everfest we KNOW we'll be home. And here we are!

I do hope you all had an amazing and safe holiday weekend with your family and friends. I am still so amazed by all the support we continue to receive. We could not have made it this far without all of you!

Much love to you all.

#nhos