Johnstone Family Blog: No News is Good News

By Sarah

Here we are, the middle of July, and life is good in the Johnstone household. With two active kids, and no sleepless nights in the hospital since last fall, we've found it difficult to keep up with our blog. Porter is doing really well. He finally had his infusaport removed on June 8th (Transplantaversary!). In our last post I mentioned Porter's new food allergies and getting him to eat on his own as our biggest challenges. We haven't made much progress with eating yet but the good news is he is healthy and growing.

Trying to catch bumble bees.

We recently had an allergy appointment at BCH where Porter's skin test for milk allergy was negative. We are hopeful that he has overcome his milk allergy but won't know for sure until we can get him back to the BCH allergist for a milk challenge. (It's not what you think!!) They will give Porter some milk, NOT a whole gallon, and wait to see if he has a reaction. If he does they will treat it; if not we'll get the green light to stop for ice cream on our way home. 😊

Unfortunately, we also learned at that appointment that Porter is, and I quote, "definitely allergic to cats." We've struggled with Porter's eczema since the very beginning. The doctor said that cat dander is probably a major factor in Porter's eczema symptoms and that a positive skin test often precedes more serious symptoms. Porter has a higher risk of developing asthma if we keep our kitty. 😞 So, we are searching for a loving home for our 12 year old cat. In the mean time our vacuum cleaner is earning its keep.

In just a couple of weeks we will meet with Porter's metabolic doctor from UVMMC. It's so strange to think that we haven't seen her in 9 months! Prior to transplant we communicated with Dr. Burke several times each week. Her number was at the top of the list in my phone favorites. I finally took her out after Porter accidentally Face Timed her by himself in October (oops!) Now we will see her annually to check in and monitor Porter's citrulline needs.

Porter will have to go back to BCH soon (hopefully before school starts up again) to have a liver biopsy. The transplant team likes to get biopsies at 1, 3, 5, and 10 years post transplant to see how the liver is holding up on a cellular level. They told us that even when kids have really good liver function tests they have occasionally found scarring in the grafts. Scarring can lead to cirrhosis so they want to stay ahead of it. We'll go down to Boston for a Monday morning clinic appointment and ultrasound and then have the biopsy done on Tuesday. The procedure is pretty straight forward but Porter will be under general anesthesia.

We are thankful to Lindsay, Steve (and Liam!) for continuing to host us on our visits to Boston. We're so lucky to have family there who are willing to put up with the tornado of us coming and going.

Hanging out with cousin Liam.

Katie learned to ride a bike this summer. From balance bike to pedal bike (she don't need no stinkin' training wheels!) in record time. He didn't say so, but I think Chris was a little disappointed that she didn't need him to run along beside her. So independent. She'll start swim lessons next week but is already pretty good at swimming underwater.