hi guys… gotta keep this short and sweet, as we are heading to therapy shortly. jackson had a very rough day yesterday. paul and i had meetings over on base concerning jackson’s EFMP paperwork, so it was wonderful knowing that he was being cared for at home by grammy. by 3 pm yesterday, jackson had only consumed 7 ounces. he was starving yet unwilling to eat (as usual). paul and i were both very concerned and worried that if it continued like this (through this coming weekend) we would have to readmit jackson to the hospital. mom and i fed jackson through the late night hours. jackson would sleep and since his body was so hungry, he allowed himself to eat while sleeping. we ended up getting 22 ounces in him by doing this. poor paul went to bed early so that he could leave the house at 2:30 this morning for a 3 am flight.
yesterday afternoon, i spoke with teri (jackson’s feeding therapist) on the phone, panicked and not knowing where to go from here. she is fitting in a session with us this morning, and we will also see her tomorrow. our thoughts right now are that jackson needs more sessions per week than our original plan of only 2 per week. jackson’s GI specialist told us that his recommendation is for jackson to receive “intensive therapy if not inpatient therapy.” his aversion to eating is so bad that he either needs to be hospitalized to receive 24/7 therapy with specialists or an intensive program of meeting with specialists 4 to 5 times per week. as of now, we will do the intensive program with teri and meet almost every day during the week. our other option to consider is inserting a G-tube (feeding tube) and feeding jackson this way. while jackson gets the proper amount of nutrition that he needs to grow, teri would do oral stimulation exercises with jackson so that he grasps the concept of having a full belly with positive oral stimulation (which he loves because all he has to do is play). this would happen for a few days, and then we would combine the G-tube feedings with bottle feedings. for example… we would make our normal 6 ounce bottle for jackson, if he took 3 ounces orally, we would take the remaining 3 ounces and feed that to him via the G-tube. teri has seen a lot of success with this in her 26 years of experience with food refusal babies. paul and i discussed this G-tube option back when jackson was hospitalized before but the GI specialist who was on-call that weekend would not do it. at the time, he saw the G-tube as a last ditch effort and would not approve it. (grrrr….)
so we will see teri this morning and tomorrow morning, see how our weekend with jackson goes and decide from there if we will just continue a more intensive therapy program with jackson, or give the G-tube a shot.
i know how a G-tube sounds… i am imagining all of you reading this and thinking “oh dear, are you really at that stage?” YES!!! we have been at that stage for quite some time now. paul and i wanted the tube back when we were at the hospital. i know that you guys see pictures of jackson on here and think “oh he’s a happy baby, he doesn’t look sick.” this is a deceiving disorder, my friends (as most eating/feeding disorders are). jackson looks the way he does because we feed him around the clock. the harsh reality is that jackson’s weight has plateaued. he has ceased to gain weight though his body is continuing to grow. his nutritional value is depleting because he is consuming the same number of ounces now that he did when he was 2 months old. at some point in time, this plateau is going to start to descend which would eventually make jackson a “failure to thrive” baby. this is our reality.
please continue the prayers… they are the only thing that keeps us going.