jackson is a pea pod for his first halloween!!! the costume shopping trip took place last night at target and our options were a pea pod or a lady bug… at first i thought the costume may be a bit big for jackson since it’s a 0-9 month range, but he maxed it out. my little pea pod is helping me pass out candy tonight to our trick or treaters. jackson is long and lean these days, no longer fitting in any of his 6 month clothes. notice tonight he is tube-less… his ng tube was irritating him this morning, and once again inducing vomiting. i removed it and he has had some really good oral feeds today as a result. we take our good days and store them in a vault because they are few and far between. HAPPY HALLOWEEN!!!

WE GOT JACKSON IN TO JOHNS HOPKINS TO MEET WITH THEIR FEEDING TEAM!!!! ohmygosh, i am laughing (out of sheer delirium) and crying at the same time. we have been tirelessly pursuing the feeding program at kennedy krieger. i started running into walls though because this program does not admit anyone inpatient until they are atleast one year of age. the difficult part has been that johns hopkins children’s center and kennedy krieger partner together for their feeding program, and so, talking to multiple people at both locations has worked against me… until now!!! as it turns out, a friend of our’s in paul’s squadron just married someone who did her post-doctoral work at kennedy krieger. i got in touch with her last week, and she put me in touch with her friend who happens to be on one of the feeding teams with this gi specialist at hopkins, dr. darbari, who i had been researching. on friday i had my cell phone glued to my ear, calling both johns hopkins and kennedy krieger, while simultaneously googling specialists on my laptop until i found contact information for people. as google would have it, i emailed dr. darbari and received an email back from him within an hour. i couldn’t believe it!!!! it was like getting an email from a celebrity, you guys, seriously. i sat staring at my computer screen for a solid minute and a half before i could even collect myself to read his email. basically he told me that his people would be in touch with me…. i giggled reading this, thinking, “ohhh… his people will call my people…” anyway, i then contacted our friend’s friend at hopkins. she listened to my story for 45 minutes on the phone, then told me she would present jackson’s case to her feeding team on monday…. she just called and told me that they would take him on. paul and i are beside ourselves with joy and relief, knowing that jackson will be seen by the best in the country. these feeding teams consist of multiple people who work at either kennedy krieger or johns hopkins… the specialists on these teams include a gi specialist, a nutritionist, an occupational therapist, and a behavior therpist. the “friend of a friend” who basically got jackson in is the behavior therapist on dr. darbari’s team. soooo…. now we wait to hear when this eval with the feeding team at kennedy krieger will take place. in the meantime, i have TONS of medical records to fax to them to prep them on his case, and we have a meeting with our gi specialist here tomorrow to discuss possible surgery for a g tube. stay tuned!!!

this weekend was our last one as a “family.” steve and amy headed to d.c. today, where they will be stationed next. the family is starting to break off bit by bit, so we spent as much time together this weekend as we possibly could. saturday was spent at andrew and molly’s house (i love saying that now that they’re married!) watching football, grilling out, and twirling with miss lil (geoff). the greatest part about saturday was when the guys ran outside to greet steve and amy… phil was carrying new baby zack, paul had jackson in his arms… and geoff didn’t want to feel left out, so he carried lily’s baby doll. then sunday some of us got together and watched the blue angels fly over the target parking lot (classy, eh?). while paul was mesmerized by the blue angels, jackson kept his eyes on me, making sure i didn’t go too far with his apple sauce. i asked paul how many times he’s seen the blue angels fly and he had no idea, but then he said to me, “i’m pretty sure i was about jackson’s age when i saw them the first time.” needless to say, i don’t think the blue angels had the same affect on jackson that they had on paul as a baby. sunday evening we wrapped things up, like usual, with a big ol’ family dinner at geoff and becca’s house, passing around eachother’s kids so we could all eat, and then ending the evening with a family photo. throughout the weekend, we all found ourselves saying “gosh the family keeps getting bigger and bigger.” lily will be 3 in december, which is just unbelievable to me because i feel like i just hosted her 1st birthday party at our house yesterday…. lily now has baby brother, zack, who is already 2 weeks (and just beautiful in every way)…. jackson just turned 6 months…. it’s amazing to me how “the family” is growing. we enjoyed our time together so much this weekend. steve and amy will be in d.c. (as we will hopefully be shortly)…. so some of us will be close to eachother, and others, like phil, sarah, lily, and baby zack are heading all the way to france. this of course led to a lot of “euro reunion 2010″ discussions this weekend. regardless of geographic location, “the family” will always be together.

with every “up,” i guess there is a “down” which is unfortunate for us because we want the ups to last just a tad bit longer… the latest ups have been great and encouraging. jackson has been taking oral feeds well through the propel bottle in addition to the jar food that he takes from the spoon. this has been a big success. but, since the ng tube came out last weekend though, the volume of each feed has significantly decreased. paul and i took jackson to see a pediatric nutritionist this morning, and our hunch was right… jackson has lost weight again. 3 weeks ago he weighed 17 lb 6 oz and today he was 17 lb 1 oz. if you read this and think to yourself “oh, it’s just 5 oz,” i beg you NOT to share that thought with paul or myself… to us, this is big. with the ng tube out, jackson is losing weight again, which will most likely mean an intense conversation with our gi specialist (who we see next week) about surgically placing a g tube in jackson’s belly. over the last month that he has had the ng tube in, at the end of each day jackson averaged between 35-38 ounces…. with the tube out, he averages 22-25 ounces a day. yes, we have made great progress with the feeding therapist, and will continue to do so…. but i am discouraged today and scared to have a conversation with our gi specialist about putting a g tube in our 6 month old son. our plan, per the nutritionist we saw today, is to concentrate jackson’s formula a little more and add another feeding in his schedule in the hopes of giving jackson more calories and putting some weight on before our appointment with gi on tuesday. paul and i pray this works and that we can ward off putting jackson through surgery for a g tube.

our precious jackson… 6 months ago today you entered our lives kickin’ and screamin’ and peein’ on your daddy. ~ we will NEVER be the same…. THANK GOD!!! we love you to the depth of the deepest sea and the tippity top of the highest tree. happy 6 months to you, our sweet magoo!!! love, mommy and daddy

jackson turns 6 months on wednesday. i can hardly believe our son is half of a year old. the time has flown by, and from what i am told by other parents, it will continue to do so.
paul and i can’t tell if this 6 month milestone is what is causing the turn-around that we see taking place with jackson’s eating… but we can’t help but wonder about his little digestive system maturing with age, and think to ourselves that maybe, just maybe we’re seeing a little light at the end of our tunnel.
this weekend brought the same turmoil that last weekend did. we had once again changed out jackson’s ng tube and doing so induced vomiting. at the time, we were 10 days away from reevaluating our tube situation with the gi doctor, but jackson apparently didn’t want to wait 10 more days. upon consulting with jackson’s feeding therapist and gi doc, paul and i pulled the ng tube out and have been successfully feeding jackson orally since saturday. while the volume of what jackson is taking in is not quite as good as we would like, we feel so encouraged by jackson’s amazing progress.
interestingly enough, the gi doc told me over the weekend that he has occasionally seen babies who, after a given amount of time with an ng tube, decide their body no longer needs it. when this happens, the body tries to expel the tube which manifests itself in the form of vomiting. so according to this theory, jackson was telling us that he no longer needs the tube… we just had to translate his baby language.
jackson is averaging about 5 ounces of formula through the propel water bottle. in addition to that, he is shoveling in as many baby jars of fruit as possible. he LOVES his solids!!! by the end of yesterday, jackson had totaled 25 ounces and paul and i went to bed very happy.
also, with the tube being out, jackson is sleeping through the night again. this is HUGE for us because for the last month or so that the tube has been in, jackson woke up every single time he lost his pacifier. we think that with the tube causing him to produce more saliva in his mouth, he needed the pacifier to help him swallow that many more times throughout each night. with the tube out, jackson no longer has that need and can sleep through the night again.
paul and i have experienced our own milestone in the last 2 days because they have been what we would call “good days” for jackson… and we had two in a row! we actually took jackson on a walk up to our favorite sandwich shop and enjoyed an afternoon outside with our son while he took a nap in his stroller…. something that jackson NEVER does because he’s always been uncomfortable in one way or another and unsatisfied. not only did jackson allow paul and i to enjoy some time together while he rested, but we also went to meet baby zach! our dear “family” friends, phil and sarah, had their second child, zachary philip, last weekend when we were in pennsylvania for the wedding. talk about a milestone!!! phil and sarah are parents again and doing such a wonderful job raising miss lil and now baby zach. being able to take jackson over for a visit without having him throw a fit out of hunger was huge for us.
finally i marked (literally) jackson’s 6 month milestone on my other wrist this weekend. i had been talking to paul about tattooing jackson’s name and birthdate on my wrist for a while now, and this weekend seemed as good a time as any to actually do it.
i think i can speak for both paul and i when i say that the last 6 months have been the MOST stressful that we have endured yet. to think that we may be turning a corner here, as jackson turns 6 months old, is a thought that i never could’ve imagined entering my brain. stay tuned…. things seem to change on a dime for us, but hopefully our changes will continue in a positive direction.

hi everyone! jackson wanted to post a shout out to all his peeps out there. paul was telling me this afternoon that friends of ours in the squadron (jimmy and audrey) have been keeping updated on our blog. you guys never cease to amaze me! honestly, i have no clue who all sees the sometimes serious, sometimes silly little tidbits that i post on here…. i really don’t. the link gets passed around here and there and sometimes i get feedback, but you never really know who sees these things. i guess i’m just glad to know that it’s sweet and wonderful people, like jimmy and audrey, who do read this and find enjoyment in catching up on our sweet magoo. so hiiiii!!!! (from jackson)