Here’s a little peek into their life over the last 2 years:
They noticed an issue shortly after he turned one year old (October 2015). He became very adverse to different textures. His willingness to try new foods stopped completely around 18 months (April 2016) and his appetite for things that he used to enjoy decreased around this time as well. By summer of 2016, Max was eating virtually nothing and losing weight. Around this time they were fully involved with Geisinger and Early Intervention. They started him on specialty formula, which they had to pay out of pocket, costing approximately $300/month.
In September 2016, Max weighed one pound less than he did in October 2015. He had stopped eating entirely. Specialists were pretty baffled. At this time, Max would still drink pretty well. He had a feeding tube placed in October 2016. The plan was just to do overnight feeds, as Max could supplement with his specialty nutrition throughout the day. The family rarely sleeps, as his machine malfunctions all throughout the night – he has to be readjusted several times and sometimes wakes up and needs to be comforted as well.
By February 2017, Max’s willingness to drink via mouth slowly decreased. Max started waking up weak, unable to walk, vomiting constantly. That same month, Tiffany discovered Max having a seizure. He was started on seizure medication shortly thereafter, to noticeable success and improvement. He also received a referral to Children’s Hospital of Philadelphia (CHOP).
June 2017: Max arrives at 2 years 8 months weighing barely over 20lbs. A new feeding program is tailored specifically for him. The program is designed for Max to almost be exclusively fed through a tube which consist of overnight and three 1-hour feeds per day via syringe. The family is told that if Max gains enough weight, he will be accepted into the day treatment feeding program at CHOP.
July 2017 – September 2017: Max’s weight increases. He is now currently 28lbs! It’s determined that he is now a good candidate for the feeding program as he still is not taking anything orally. Max still vomits as a result of the direct feeds to his stomach. They have made 6 trips back and forth to Philly in the last 2.5 months.
Maximilian is scheduled for November 7th – December 1st at the feeding program at Children’s Hospital of Philadelphia (CHOP). Tiffany will spend those weeks at CHOP with Max while he goes through the program, learning alongside of Max. Here is a video on the program they will be attending: http://www.chop.edu/services/intensive-day-hospital-feeding-program .
Erica & Emma
- Geoff & Erin Detweiler
- Kim Moerschbacher
- Jessica Knight
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