Successful Check up at Children’s Hospital

Yesterday we had a very successful check-up at Children’s Hospital. One I got past the sullen and recalcitrant receptionist, the remainder of the staff and the appointment in general was the smoothest trip to a pulmonologist so far.

Valentino is now 19 months old and weighs 23lbs. He is in the 50th percentile for growth.

This is really exciting for me. Also it was very exciting to have the nutritionist give us props for the dietary plan I’ve got going with Valentino.

As per the growth chart, Valentino’s growth has kind-of “flatlined” and the doc would like it to continue to move up on the charts. Moving into the winter months and risking cold/flu/lung infection, I want to make sure Valentino stays healthy and keeps his weight up just in case we hit a bump along the way and he gets sick and drops a little weight.

The nutritionist recommended adding powdered milk to his whole milk to beef up the calories. I will go back to adding a few drops of coconut oil and cod liver oil to his milk as well. The nutritionist asked if I had ever tried pediasure and when I told her that I prefer not to because it’s chemical laden and makes Val stink…I was expecting to be met with an attitude. But, the nutritionist just laughed and said it’s fine not to use it and to instead add powdered milk to his whole milk to make it higher in calories.

Amen! We found a practice where the nutritionist respects my knowledge and ideas and will trouble shoot with me on helping him gain weight without loading him up with chemicals and junk food.

The remainder of the appointment and the rest of the staff we met with was equally as open to a discourse about Val’s treatment plan and I received a ton of useful information about the current state of CF.

As we transitioned to various areas of the hospital, we were guided by a staff member so we didn’t get lost along the way. The 4 hours flew by and were completely seamless.

I feel, for the first time since Valentino’s diagnosis, that I have a Western medical team of experts guiding me along and supporting Val and I through his CF journey.