Two of my most memorable milestones from my pregnancy with Bruce: when the baby book said he could hear from inside the womb and when his testicles dropped...I was a proud momma. Of course, I had to celebrate the first with a couple of my favorite sounds in the world: Waylon Jennings and a Dodge diesel engine. To do so, I took the old Dodge work truck with my Waylon Jennings burnt cd permanently stuck in the cd player on a back road cruise to the home office one afternoon last fall. Later that night, I played ocean waves against my belly from my sound machine. The second milestone wasn't so much a celebrated event other than I told the whole world my boy had balls now...
I love all kinds of sounds but my new favorite since little man has been born is the 'Ah, dammit!' noise he makes when he can't get all the sneezes out. Because he's been sick the last several weeks, he is a little behind on developments...he's not quite able to hold his head on his own and rolling is pretty limited to side-to-back although he kicks like a ninja! He has found his ears and does move his hands to mouth but more importantly to momma's heart than all that, he's smiling like a champ and starting the cooing sounds! My eyes still tear up when he looks at me and gives me that toothless grin! This last week has been amazing to see the changes in him since it seems like the brain pressure is down from the abscess and the antibiotics are taking effect. Tomorrow marks 12 weeks of age and for all the boy has been through, I don't think he'll have much trouble hitting more milestones in the future!
Yesterday was a Bob Marley and diet coke kind of day...doctors were in and out, he had a hearing screen he refused to sleep for, an outpatient pulmonology appointment on the other side of the hospital we had to hike to and his NG (feeding) tube was removed. ((I did manage to score a pan of the Pioneer Woman's chocolate chip cookie cinnamon rolls from Aunt Kerrie and some great family visiting including some sisterly bonding I don't get enough of these days!)) I cracked a case of diet coke pretty early in the day and yesterday afternoon, after the medical masses left the room, I turned on some Bob Marley and little man snoozed on my lap. Momma loved that bonding time. Music is HUGE in my life and I love all kinds...I'm hoping Bruce will too! Today's kind of a wild card day and I'm playing Foster the People...see, I'm a cool and trendy mom! HAHA Yes! I did just say that.......
Infectious Disease holds the reins on the going home wagon. Bruce was yet again hot topic of another conference yesterday to discuss the best antibiotic treatments for him since he's such an odd case. From the meeting of the minds, it was decided to up vancomycin iv dose and an oral will begin today. All of his functions are looking great so far so they feel they are on the right path. We're currently awaiting MRI results from this morning to check the regression of the abscess, if any. Bruce may not be a prodigy pianist or a chess club champ (yet) but he has had five MRIs and has never been sedated. I wonder if that comes on a bumper sticker?
Pompe wise, the enzyme replacement therapy went great this week and the Genetics team is truly impressed with how he is responding. They can only recall a few cases of infantile Pompe in the last decade at CMH and Bruce has far exceeded any of their expectations. We're gonna keep on, keeping on with making progress!
John has been whipping out hay bales like no one's business back at the ranch thanks to help from neighbors and my awesome cousin, Dalton. I'm hoping if we build Dalton a house and find him a non-Amish lady friend, he'll make the move to the north and work full time. Or not, but it's a nice thought! John is heading back tonight and we're planning for a nice and relaxing weekend...I'm sure it'll last all of three minutes!
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