Days 1-4

We have completed our first 4 days at the intensive feeding clinic. We are currently in the Assessment phase, which means they run countless different trials to see how Sebastian reacts to various different conditions. Currently, I am running the trials....so I am the one presenting different foods and liquids while observing Sebastian's behavior when his inappropriate behavior results in 1) adult attention, 2) breaks from presentations of liquids or solids, 3) access to a tangible item (preferred toy) or 4) no differential consequence (control). I know....I know....it sounds like a foreign language ;-)

It is beyond monotonous, frustrating, confusing, and overwhelming. I get smacked or kicked in the face about 20 times per session, with 5 sessions per day, the battle wounds at the end of the day are rough :-( You've got to love it....the therapists are always commenting on Sebastian's style/clothing and how cute he is....and I am thinking the whole time, yea, he is adorable when he is not smacking you in the face as hard as he can because you put food in his personal space....how dare you try to get him to eat? Who do you think you are? Lol

Just picture statistics gone crazy....multiple data collectors in a sound proof booth watching your every move from a double sided mirror. They are listening, adjusting, judging and correcting my every move with Sebastian. During certain trials I am supposed to talk about the food, not talk about the food at all, talk about the toy in front of him, reprimand him, don't reprimand him, praise him, don't praise him, etc. Needless to say....exhausting both mentally and physically is an understatement. It is truly the most emotionally draining thing I have ever done. I have left some of the sessions barely able to hold back the tears and then losing it once in a private space.

Sometimes I feel so weak for crying and think so many parents have it so much worse or harder than I do. The pediatric feeding disorders unit is located right next to the severe aggression unit, so you see children struggling with all sorts of conditions, and not being able to function whatsoever, while having two staff members on either side of them at all times to prevent self injury or injury to another. So....I am reminded daily of just how blessed we truly are. God is good and we are grateful!

The facility itself has some unique play areas for Sebastian. They have an indoor playground/sensory room, an outdoor enclosed playground and a splash park (for summer months). Sebastian really enjoys having a place to run around during his breaks in between his feeding sessions (without these areas we would both go crazy ;-)) Pictures below :-)

There is a maximum of 4 children in the pediatric feeding program at one time. The other 3 boys whom are in the unit with us are all on feeding tubes and are trying to be weaned off of them. It is VERY rare that we hear of a child going through something similar to our story (i.e. not on a feeding tube, but needs intensive help in order to avoid a tube).

On Friday, Sebastian had had a really long day and was laying on me during one of our breaks watching Lion King in our nap room and had requested a sucker. I didn't know if he was allowed to or not, but felt that he definitely deserved it after the day he had. So he is laying there with his sucker, when there is a knock on our door. Panic mode sets in....I grab the sucker and shove it in my jean pocket (of all places?) and proceed to wipe down his mouth and tongue, HAHA, with baby wipes (of course he had to pick a BLUE sucker)....only for me to open the door and them hand me a piece of paper and not even glance at Sebastian. That was a close one.....Good times!

We hope to finish up the assessment phase this week and move towards goals and actual treatment....which is EXCITING! And what keeps us going! Thanks for all the prayers and support! It means more than you know!

P.S. Aspen has been a trooper through all the changes and being away from mommy....she truly is the sweetest girl....the Good Lord knew exactly what he was doing when he blessed us with our precious Aspen. Pictures below of our smiling girl and the kiddos enjoying the large tub during bath time ;-)