Today we met with Addysons gi and nutritionist. It always a stressful appointment.
Today’s focus was on Addysons calorie count. They need her between 1500-1800 a day. She is not hitting that goal.
So today we agreed to meet in the middle. We will restart an appetite stimulant while starting formula feeds in conjunction with her overnight pedialyte to get closer to the daily goal. The hope is to get closer to the 1500. We will follow up in a month to see how it’s going.
Honestly the past month has been a lot of stress. Between her hearing appointments and then landing in the Er twice and trying to manage her weight and health it’s just been exhausting and mentally draining. I’ve felt the stress Of being a medical momma a lot in the past 30 days. I know some of our other medical parents can 100% relate. Just trying to figure out the right treatment plan and the right path forward is tough. Knowing that it will either work or set her back steps.
Understanding the psychological piece to all of this is tough. We constantly jump between a work call and then a medical call. Trying to keep your emotions in check can be so tough.
The fight for services, for treatment, for a better way forward is draining. The fight we fight daily is exhausting and there’s no off days. No we’re on vacation so no pumping, or we are on vacation so no feeds. Nope that doesn’t work because one day of that and she’s set back ten steps and takes days to recover.