Tuesday, July 15, 2014

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!


Sunday, July 6, 2014

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.