well i owe you blog readers an apology because i have been purposely putting off this post… i know you have all been wondering what’s up with jackson this week? what’s up with the geneticist? what’s up with surgery for a g tube? here’s what’s up… i have put off this entry because we (dare i say it) seem to be succeeding with a medication. our geneticist is having us try jackson on a medication that works to calm his stomach. (i know, sounds too good to be true, right? and too simple to be “it” right? hence the reason for me not posting all week long). this medication, zofran, is typically used for cancer-babies and kids who are vomiting constantly as a result of chemo. it’s an anti-nausea and anti-vomiting medication. what we have learned through this geneticist is that the stomach is, more or less, a second brain (and yes, i am buying the book that this link goes to). the same serotonin levels that we have in our brain also exist in our stomach. think of it this way… when you are nervous about an upcoming presentation at work, you say that you have “butterflies in your stomach,” right? well, it’s your stomach that sends signals to your brain that tells you “oh crap, i have to speak in front of people, i don’t feel well,” and then your stomach gets icky feeling and you spend the 20 minutes prior to the presentation on the toilet. (ok, atleast it works that way for me). jackson’s serotonin levels, which are imbalanced due to a family history of high anxiety on both my side of the family and paul’s, get really messed up with all of the stomach acid that he produces as a result of his GERD. if you remember way back when, jackson had been diagnosed with bad reflux, which we have since learned to treat with prevacid to combat all of the acid he produces. his stomach, feeling lousy, then tells his brain, “hey i don’t feel well. i don’t want to eat.” and thus we have “the reason” why jackson doesn’t eat. keep in mind, all of the other doctors we have been to and specialists we have sought out have done us a world of good. in the beginning this was an allergy to my breastmilk, and we learned how to handle that with the hypoallergenic formula… and then the GERD set in, and we tried numerous medications to deal with the acid in jackson’s stomach…. and then the behaviors set in with the food refusal, and so the feeding therapist helped us to present jackson with food in ways that he is open to receiving them…. but after all of this, plus an endless amount of tests run on him (all coming back “normal”) and 2 hospitalizations for his weight loss, we might…. MIGHT… be on to something here. now with the zofran, it’s not one of those things that you can just “pop a pill and it’s all good.” the trick that paul and i have been learning this weekend is what dosage to give him and when…. the timing is critical because if you wait until the first dose has completely worn off to give him the second dose, you’re screwed because his stomach is already upset and then i have my “normal” screaming, kicking, irritated, refusing to eat jackson back. so now, not only can we say that paul and i have become at-home nurses in taking care of jackson (especially while he was being fed through an ng tube), but now we can add “chemist” to our resumes in dealing with this medication. ok, ok, ok…. side effects…. the ugly topic that every parent wants to know about when it comes to medicating their child. when we asked the geneticist about side effects, he smiled and said, “moms tell me that all of a sudden their baby is sleeping and therefore they feel like they’ve drugged their child.” and yes, i will concur on that one. here’s what’s up with that though… in calming jackson’s stomach with the zofran, and bringing those sensory issues his belly has down to a “normal” level, the rest of his body can then relax…. and thus the baby can sleep. so, jackson takes decent naps (so far… keep in mind that i am still a skeptic given my life for the last 6 months) and is sleeping through the night. does this mean that our struggle is over??? certainly not. haha! shame on you who thought the battle was over. we are still going to run some tests on jackson when he has a bad day and is feeling crappy… we’ll draw some blood and run a metabolic screen on him and also test his sugar levels. both my brother and i have ridiculously high metabolisms and need to eat about every couple of hours or we feel like butt…. and if jackson is the same way, that could be playing in to why he can’t put on weight. as for now, we are more or less, “playing” with this medication though in order to make sure that we are making jackson as comfortable as possible so that he can enjoy life (and eating) a little more. we’ll see what happens….. as for surgery for the g tube….. we’ve postponed it for now, in order to give us some time with the zofran and see if we can avoid surgery all together. as for getting in the feeding program at johns hopkins goes…. we can’t get in until february because they are so back logged. we are keeping that appointment and taking things one step at a time. jackson still does not eat the way he should… this medicine hasn’t “cured” him of the 6 months of not eating that he has experienced, so we are still pursuing hopkins incessantly to get jackson in with the best feeding therapists in the country. and as for paul’s orders….. on friday we received verbal orders to report to annapolis in january. this was HUGE for us because we need to be close to baltimore for hopkins treatment. this was also HUGE because paul had been wrestling with the other job opportunities that existed for him in the d.c. area, mainly at the pentagon. he has been so involved in jackson’s therapy and the thought of taking a job at the pentagon where he would have insane hours just didn’t sit right with him…. so he waited, and low and behold, an opening at the naval academy came on friday. so dear blog readers, i will wrap this up…. that is what’s up with us. we hope to see progress with jackson’s medication and we’ll keep you posted.