dr. vs. intuition
i feel capable of making decisions concerning jackson’s health. it’s only taken 10 months of him physically being in my life in order for me to say that, but hell, i said it. so there!
this has been an issue for me since the very beginning. doctors, specialists, behaviorists, bla bla bla… ists. i’ve heard the input from all of you. i have leaned on all of you, continue to lean on all of you. and now i am feeling capable.
my latest battle has been with jackson’s pediatrician’s office here in annapolis. and i don’t use the word “battle” to insinuate that it’s been this knock-down-drag-out fight that’s been going on. it’s just been a lot of back and forth… and back.
they want to run more tests on jackson. apparently not a lot of doctors buy in to the whole cyclic vomiting scenario our son has going on. that’s fine. not many doctors believe that jackson was allergic to my breastmilk either. during one of our hospitalizations in atlanta, a pediatrician told me that it was “impossible” for a child to be allergic to his/her mother’s breastmilk. “that child would not be carried to term if it were allergic,” she scoffed.
it’s never been my intent to sway people, readers, doctors, with our story. i put this out there to inform, in the hopes that someone else who is going through this (god help them) finds comfort in knowing they are not alone.
so back to the tests… they want to run a metabolic screen on jackson (which was done by our geneticist in jacksonville) to see if there is an abnormality that may show why he doesn’t gain weight (don’t we all wish we had that problem?) and they want to do another upper gi with barium swallow.
jackson has had two upper gi with barium swallow studies done… in addition to two abdomenal ultrasounds, an endoscopy, and (almost) a gastric emptying scan (we opted out of this test once we learned that jackson would be strapped to a table for 2 hours while a radiologist watched the contents of his stomach travel and then empty.)
the tests that this pediatrician wants to have done aren’t all that invasive in my opinion. one is a blood test and the other has jackson drinking radioactive fluid. whatever. been there, done that. my issue is this… every single friggin test has come back normal. and that’s great. totally a blessing. gives us no answers as to why our son didn’t eat for the first 6 months of his life, but we’re beyond that now. so given that each test has given us “normal” results, why on earth would i continue to put my son through more of them?!?
in defense of the doctors here, i know they are just trying to do what they think is best for their patient. they want to run their own tests. he’s new; they are unfamiliar with his case; they know they are the reason we are in annapolis and we’re now on their turf.
but jackson is my turf. i know the ins and outs of my son better than anyone else (thank you for reminding me of that, mom.) and right now, i am not seeing the need to put my son through any more testing.
jackson is doing well. his last cycle lasted for 6 full days, which is the longest one has lasted yet, but we survived. granted, i still have my skepticism keeping me company. i still silently recite my feeding mantra every time i feed jackson a bottle… dear god help him eat, dear jesus help him eat, holy spirit help him eat. good thing i’m a stellar catholic (ha!)
we have our good days and our bad. my intuition has gotten me this far, and i think i’ve done ok, all things considered. the order for the metabolic test and upper gi are sitting on my desk. i just need to make a phone call to schedule the appointments. but, i’m going to put the order away in the desk drawer. i’m going with my gut on this one. no more tests for now.
today
dear friends,
today was the day that i have waited for since october 24, 2008. that friday, i made more phone calls that i believe are humanly possible. what started as a search to find a specialist for our son, turned in to a crusade. the phone calls, combined with online searches and googling every name people emailed me, led us to kennedy krieger. all those months of angst and frustration with jackson refusing to eat would be worth it if we could just get him to kennedy krieger and in to their feeding program. a friend of a friend pulled strings, other people made calls, our specialists we were working with at the time put through their references… hell, we even got out of going to japan for the next three years, so that we could be at this medical facility with these specialists who had this sort of experience.
and it was worth it.
i can remember when i was first pregnant with jackson, people would ask me, “do you want a boy or a girl?” and my response was, “i just want a healthy baby.” and it was true. i meant that entirely. in our worst times and on our worst days, i used to think to myself, “something is wrong. something is very wrong with our child.” words cannot fully express how horrible it is to feel that way about your child and not know what to do to make it better.
but we have a healthy baby boy, and that was even more validated today coming from the top pediatric specialists in the united states. we fought our battle over his first 6 months of life. i am still bruised and bloodied, but damnit i fought… and now we’re in a much better place. jackson is outgrowing a lot of the tendencies that were created as a result to his breastmilk allergy and he still battles his reflux, but he is a healthy 9 month old boy. his medications will continue to keep him and us in the stable place we are now, and he will be reassessed after his first birthday.
we are grateful for today and grateful for all of your well wishes and thoughts.
define “normal” please
we were home all weekend long with a very sick magoo. turns out his little vomit tactic on friday was just a preview of the awesome stomach virus that he now has. our arms are broken after holding him literally for the last 4 days… his fever has gone as high as 103, which scares me, but as my mom reminds me, “it’s good. it means he’s fighting.” i just wish he would friggin beat it already and that this fever would break because it has made jackson and me absolutely miserable.
we saw my in-laws friday, mid-puking session, and they stayed with us friday night. paul and i ended up taking jackson to a doc in the box nighttime pediatric place friday night because we were scared with the fever and not knowing what the hell to do. that place thought jackson had an ear infection… and gave us antibiotics. ha!!! we saw jackson’s pediatrician this morning, who basically laughed at that, said his ears “were perfect” and to stop the antibiotics because we weren’t treating anything.
the thing that sucks about jackson’s stomach bug is that we have our feeding evaluation at kennedy krieger this week, thursday actually. paul and i made this appointment back in october, and now it is upon us and jackson is sick. SHIT!!!! our pediatrician this morning encouraged us to reschedule jackson’s appointment if he isn’t showing real improvement by tomorrow, meaning the fever MUST break. i can see her point. she wants to make sure that jackson is feeling as good as possible for the eval otherwise the specialists won’t see a “normal” jackson or a “normal” jackson feeding. i swear, if i have to reschedule this feeding eval though, i am really going to need padded walls in our apartment.
soooooooooooooo all of this got me thinking about “normal” and what exactly that means for everyone, especially those of us who are parents. we got into a conversation over dinner this weekend with my in-laws about this— wondering where exactly “the norm” comes from, cuz it has to come from somewhere, right? so who decides what milestones should be met by a certain age… what foods should be introduced when… what a “normal” life/existence with a baby should be like??? who decides this??? because, honestly, i want to meet that person and kick them in the teeth.
NOTHING about my life as a parent is “normal,” absolutely nothing. there is no routine, no guarentees, no schedule. my life as a parent to a 9 month old can best be paralleled to someone who is a parent to a 9 day old. last night jackson cried, nay screamed, from 7:10 (when he took his last bottle before bed) until 10 pm. screamed. he had been fed, had a dry diaper, the fever was at its lowest that it’s been in days, he had all of his medicine, he was exhausted beyond belief having been so sick… yet he took it upon himself to scream for nearly 3 hours last night. paul never saw the super bowl. i never got a break to read. the people who live below us probably came close to calling child protective services. we took shifts rocking and coddling jackson until i drew the boundary at 8:45 and said “no more.” at that time, i had been awake since about 3 in the morning with jackson, could hardly see straight, and my nerves were shot. seriously, this is what i told paul last night at 8:45 while i was shaking with anger and exhaustion… “it is dangerous for me to go back in there.” and i meant it. i mean C’MON!!!! give us a break!!!! he’s friggin 9 months old. yes, i know he’s sick. yes, i know he’s had it rough from the get-go…. but damnit, so have i.
what is “normal” about this situation i just described? what is “normal” at all? a 9 month old who prefers to scoot and pull himself up to walk instead of crawling? i dunno… maybe… is “normal” a child who was allergic to his mother’s breast milk? totally doesn’t sound “normal,” but what do i know. is it “normal” that there are still days when i don’t shower because i have been occupied with jackson from sun-up til sun-down? is it “normal” that my 9 month old has more doctors than i have had in my 27 years of life?
and if this “normal” really isn’t such a big deal, if we’re all just supposed to take things as they come, and have this philosophy of “what happens, happens…” then why, oh why does everyone make “normal” such a big damn deal?
cyclic vomiting magoo
our sweetest magoo is “in a cycle” right now… i am researching cyclic vomiting syndrome, which has been mentioned to us before by jackson’s feeding therapist whose daughter suffers from this as well. the zofran that treats jackson’s belly helps with the cycles that he is now going through, but his bad days are just a bear for all of us, especially him.
according to jackson’s feeding therapist back in j’ville, at the onset of any sort of cold, virus, or something new (in jackson’s case, his teeth), the stomach is triggered since it is his weakness and vomiting occurs. anything that could potentially upset jackson’s system just sucks… he’s so sensitive, and his poor little stomach is so sensitive that anything making him uncomfortable or not feel well (again, his teeth) results in vomiting.
and it’s not just normal person vomit… this is crazy, mass puke-ige, and not to be witnessed by the sympathetic puker, as you will also start to retch and vomit yourself.
on jackson’s bad days, he’ll have his medicine in the morning, take about 4 ounces of a bottle and then start the show. a cycle for him can last anywhere from 1 single vomit session to multiple days. the key is to make jackson as comfortable as possible, which is where the zofran comes in really handy because it is such a strong anti-nausea/anti-vomiting drug and the dosage can be adjusted according to jackson’s needs.
so that’s where we are today… his teeth are bothering him so much that his whole little system is upset, and jackson “tells” us this by puking his guts all over us.
as for me and last night’s pampered chef party… a decent amount of wine was consumed by your’s truly, and $72.50 was spent on an assortment of kitchen accessories (i am told that this is a good deal). the chicks who attended were all about 10 years older than i am, with about 3 school age children a piece, and consumed much more wine than i did. (is that what happens when you have more than 1 child?) i was an outsider, but i usually am at navy wife stuff. after walking back upstairs to my apartment, i wrote my friend (another non navy navy wife) to dish to her… i told my friend that i felt like a pinata (stay with me on the analogy. i know i had a lot of wine, but it makes sense, i swear!) i was the colorful, “different” person at this party with my tattoos and youth. and when people (ladies especially) are met with something new and possibly strange, the daggers come out and the defenses go up. so like the pinata, i started getting wacked left and right “BAM BAM BAM”… with judgment. “so your son has what disorder now?” and “how many tattoos do you have?” and “you had orders for japan and what happened?” and eventually someone jabs the pinata to the point of it breaking, and so i broke, with anecdotes of my puking non-eating son, and feeding tube stories. and then they realized that i wasn’t scary, but sweet.
my in-laws arrive today for a birthday extravaganza weekend/superbowl party. paul’s cousin and her little one are sharing a birthday weekend that includes the following: a ladies luncheon tomorrow, and a super bowl/cooper bowl on sunday complete with a petting zoo and a mexican restaurant’s catering. 
let’s hope jackson’s cycle ends sooner rather than later…
i trick my child
so we’ve been adjusting the last few days… adjusting to apartment living, being in a new place, wearing multiple layers of clothing. our life right now is a huge adjustment, and that’s fine, except when it starts to affect jackson’s eating. then it’s not fine. then i turn into a crazy monster of a mom because i realize that i had a child who was successfully consuming food, and now, because the universe has put us in a place of adjustment, my son is not eating.
and yeah, there are always going to be “outside factors” that contribute to jackson not wanting to eat some days. there will be times when he has a cold, he’s teething (which he is currently working on, those suckers!)… bla bla bla… i don’t feel like i have the luxury of making excuses for jackson to not eat. reason being, that’s what paul and i did for soooooo long and what eventually landed us in the hospital twice with jackson getting a feeding tube. we excused his not eating based on what was going on around us.
well NOT THIS TIME my friends!!! i have found my method of getting around circumstance and getting my son to eat… and that is to trick him into it. those of you who are reading this and thinking “well yeah, why didn’t you try tricking him earlier?” HUSH!!! i got it now. case and point— paul fed him a bottle this afternoon, and jackson drained 7 ounces of the bottle. killer!!! i asked him what he did and he had turned the nipple to a different setting so that jackson can guzzle faster. we have learned that if jackson doesn’t get basically his entire meal upon the initial latch onto his bottle, it’s a wasted meal and he rejects the bottle. so score one for paul. he succeeded. at the next feeding, i did the same, and jackson took 6 ounces, which was another success. then i sat him down at his highchair for his jar feeding. we’ve been giving him jar meals and specifically purchasing the meals that have the most calories to get some meat on his bones. (yes i realize they probably have preservatives and all that junk that we don’t want our kids to eat. whatever, he eats it.) there’s a jar of cinnamon raisin granola that has been the bane of jackson’s existence for a little while now. i love this jar because it has 110 calories that my skinny magoo needs. jackson hates this jar because it tastes like vomit. and so as i sit jackson down to battle the cinnamon raisin granola with him, it dawns on me that i need to continue with paul’s thinking and trick our son once again. so i break out a jar of blueberry applesauce (jackson’s fave) and the battle ensues. i open with a few bites of the blueberry applesauce, to whet the palate, then i go in for the kill. i then take a spoonful of the cinnamon raisin granola and DUNK the spoonful INTO the blueberry applesauce, thus providing a tasty treat for our magoo… and SUCCESS!!! jackson has a killer meal full of calories, and i have a malicious smile on my face because deep down i know that i have tricked my child into eating. chalk that up to a victory for today.
Have a Sip
