things with us are not good. lots of people have been emailing, wondering how jackson is, how his 4 month check up went, how feedings are going, etc… and to be perfectly honest, things are not good. there has been no change when it comes to the roller coaster of jackson’s feedings. there has been no change with his weight gain. there has been no change with our level of sanity. and sometimes, the most encouraging thing we can receive is recognition that things are just plain ol’ not good. you know when you are at a rough point in your life, and you sit down with a friend to confide in them, and they just look at you with sad eyes and say “gosh, that sucks and i’m really sorry”???? that’s what we need right now.
paul and i are now at the point where we are discussing clinical options for jackson. his GI specialist (who is a GOD-send) has said to us, “there is nothing more i can do on my level, but there is a clinic in d.c. that specializes in this…” on a day to day basis, jackson looks “fine.” he is a little over 15 lbs, is ridiculously tall at over 27 inches in length, and unless you are feeding him, he is a relatively happy baby. typically, babies with food aversion end up looking pretty emaciated and are designated as “failure to thrive” babies. this appearance that jackson has deceives everyone. all of the people who have treated jackson have told us that this is because of our diligence with feeding him, because it is around the clock. doctors, specialists, and therapists have all seen jackson and said “gosh, he looks fine,” and then they watch us feed him, or, if they are brave enough, they try to feed him themselves, and then they see what paul and i endure every feeding every day. it is enough to drive a sane man crazy. for each feeding (and jackson has 5 a day) jackson screams like he is being tortured. his screams are for two reasons- number 1: he thinks that eating will hurt him because when i breastfed him, he was allergic and it did hurt him… number 2- he is starving. literally, our child is starving. at 4 months of age (which jackson is now 4 and a half) he should be consuming anywhere from 30 to 40 ounces of formula in a given 24 hours…. last night, i put my child to bed having only 18 ounces. jackson is so hungry that he tries to eat everything in sight. if i am holding him upright on my shoulder, as if to burp him, he burrows and tries to eat my tshirt. if he has a toy in his hand, he not only puts it to his mouth to taste (as all babies do) but he then clamps his jaw shut on it as if trying to consume it because he is so hungry.
sure, some feedings are successful…. about every 1 out of 6 feedings will go well, meaning jackson won’t scream, he’ll take more than 3 ounces without spitting a mouth-full of formula in my face, and his body won’t writhe and tense up like he is awaiting a needle coming towards him. but the bottom line is this, my friends….. jackson is 4 months old. paul and i live our life right now as if he is 4 weeks old. our entire existence centers around jackson’s feedings. we can’t facilitate ourselves in any other fashion other than to feed our child. we can hardly communicate with friends and family via email because we simply have no time. to be perfectly honest, i call paul home from work, on average, every 4 days. i can’t remember the last time he worked a full work week without me calling him home for help, in tears, at my wits end. honestly… this is our life right now. he went to the squadron today, asking for time at home because i am losing my mind. they gave him tomorrow and wednesday.
back to this clinic in d.c…… kennedy krieger is a clinic that works with special needs children on a million different levels, from those who are severely disabled to those like jackson who seem “fine” but have an “issue” in one form or another. this clinic has a feeding program that runs from 6-8 weeks long and works at unbreaking the habits of babies who have taught themselves not to eat. for example, babies who have been intubated in ICU sometimes have to go through a program like this because they fear things being placed in their mouths. in jackson’s case, he has taught himself that eating hurts because originally, when i breastfed him, it did hurt. he was allergic to my breastmilk and the result was severe stomach cramping, green, mucous-like stool streaked with blood, and difficulty having a bowel movement. to be perfectly honest, if my pooping experience was like that, i would teach myself not to eat too. basically, at this clinic, in this program, specialists will be working with jackson to reteach him that eating is a safe and enjoyable experience.
so here’s what paul and i are now facing… we have signed papers to put our house on the market in the morning, literally, tomorrow morning. we have orders to report to japan in less than 4 months. we are selling our cars, and organizing our life to make this move out of the country, HOWEVER, we have what the military calls an “exceptional family member.” this means that paul and i get to spend the next two days that he has off, filing paperwork with the navy and collecting letters of recommendation from jackson’s numerous doctors in support of us being stationed at a location where jackson can receive the treatment that he needs…. mainly, baltimore, maryland. we have “a package” that we will send off by the end of the week, and in this package will be letters from jackson’s pediatrician, GI specialist, speech therapist, test results, hospitalization records, etc. this package goes to our military insurance (tricare) and through our insurance’s case coordinator who then submits it to a committee in washington. this committee whose sole purpose is to place service members to their duty stations will review our package, then review paul’s orders (to japan) and decide which “category” jackson’s case falls into (either 1,2,3,4,5+). should this committee decide that jackson’s case is severe enough to limit us to the united states, they will change paul’s orders as they see fit. should they decide that there is adequate care in kadena for a child like jackson, our orders will stay.
as of now, i am praying (as i have been for 4 months, since our baby boy arrived) that jackson simply receives the care that he needs….. regardless of where that may be. i ask that you all pray for the same.
i will certainly keep everyone posted as much as i possibly can. please keep the emails coming, even if they are filled with questions of “what’s going on?!” i promise, i will update you either with a personal email or a blog update. paul and i are being tried right now… we are challenged in a way that we never imagined we would be. but we are strong. we have an amazing network of support here in jacksonville. doctors, specialists, therapists, friends, and family lend us the encouragement we need. but…….. “to be perfectly honest”………….. we are tired. so, i must get back to my family now. paul is painting the ceiling of our kitchen since we just had it sheet-rocked, he flew at 1 o’clock this morning, and probably needs some relief. jackson is asleep. he has taken 24 ounces for the day. today is a good day and we will see what tomorrow has in store for us.