Monday, June 14th, 2021

Day 45 - SSDD (Same Symptoms, Different Day)

It feels like we're back where we began.

Declan has been having a lot of difficulty with his feeding regimen lately. According to the nutritionist, we originally aimed to feed Declan 30 fluid ounces of milk (formula or fortified breast milk) beefed up to about 24 Kcals/oz. This was to help his weight catch back up.

After attempting this feeding schedule for a while, we noticed he started to projectile vomit after feeds while he was awake, but held down everything else if he ate it himself by mouth, or we tube fed him while he was sleeping overnight. At a follow up appointment, the nutritionist suggested we cut back to 28 ounces in a day to see if that helps (it didn't). 

So we kept with it. Trying to nourish our cancer fighting kiddo. Now we are nearly two weeks into Declan's 2nd round of chemotherapy and it seems as though his ability to be nourished is becoming more and more difficult.

Still, our little superhero keeps fighting the good fight. 

It is difficult not to feel as though we are right back at the beginning of all of this. We struggled to get Declan properly fed every day and were lucky to get 24 ounces of milk into him at all. At his latest clinic visit, he actually dropped a bit in weight. We're interested to see how his weight looks at this week's appointment.

I know I had mentioned previously that Declan's best time to feed was while he was unconscious, but now that is a struggle. It is so difficult to watch such a sweet boy suffer through this disease and feel utterly helpless. 

That's not to say he hasn't had good days. Our recent camping excursion proved to be very fun for the whole family. We had plans to do things together as a family over the summer, and we didn't want to cancel those plans (for Declan's sake, nor Lukas or Lincoln).

So we set out to make some happy memories as a family.

Jen and the boys take a dip in the pool (notice how none of the children look at the camera)

Declan enjoying his pool time

Grandma getting a chance to feed Declan a bottle

Still, with all the fun and activities that we are able to squeeze into an outing, there is still this looming threat hanging overhead. The tumultuous dark cloud that hangs over our heads, circling with fears, uncertainty, and doubts. We try to stay optimistic about his diagnosis, staging, and everything looking good on paper, something doesn't feel right about his inability to eat, or keep food down. 

We just hope that we can get more answers moving forward about why our little guy is having this difficulty thriving.