February 5, 2010
Connor’s pediatrician called last week and uttered pure music to my ears…
he exclaimed, about 5 times through our conversation.
“Duh duh durrr…” - February 11, 2010
A few weeks ago, I had given him a call to inquire about getting a full work-up done on Connor. It had been awhile since his last round of lab work (early fall 2009), and I was very curious to see how he was really doing. Not that I suspected anything, but I wanted to be able to put all fears to rest. Any serious illnesses always have follow-ups, and I wanted to know that we were definitely in the clear on some of his previous issues (OOP, cholestasis, anemia, etc). Knowing that we’d be making a follow-up visit to Connor’s nephrologist at Lutheran General in February, and that he would be ordering some of his own labs (urinalysis, etc.), I figured that particular visit would be our best opportunity. Connor’s had plenty of “sticks” at our local hospital, where he was a NICU patient, but the poor kid has my veins, so he’s a harder stick than most… we usually end up flustering the phlebotomists. Not wanting him to be a pin cushion because I was just curious, the lab at the children’s hospital was definitely the way to go.
This visit to the nephrologist also called for another renal ultrasound (his last one was 4 months ago)… and this time I was on my own. After having most of 2009 “off”, Brian’s back to being a road warrior, and his schedule called for him to be away for this particular appointment. Lucky me. (I had been blessed up to this point to have Brian able to attend these major doctor appointments with me.)
Connor’s at that handful stage right now, where he’s old enough to know what he does and doesn’t want happening to him, strong enough to wriggle out of whatever position he’s forced into, and feisty enough to let everyone know about it. He’s currently around 22 pounds or so (and 28” tall), making him an armful, too… especially with not crawling or walking.
The ultrasound was… interesting. I’m surprised she was able to get any still shots at all of his kidneys.
Still shots or not, the results were great! The “densities” previously seen have dissipated and are nearly gone; leading the doctor to believe they were just protein droplets (and not calcium deposits – kidney stones). His kidneys are still swollen, but that’s to be expected with his urinary reflux.
March 3, 2010
The nephrologist appointment was typical… except for the entertaining Connor, understanding nephrology-ese, AND taking notes part. For now, he’s continuing Connor on the prophylactic antibiotic (which he’s been on practically since birth to prevent UTIs), holding off on a diuretic a little bit longer, and wanting us back in July for another VCUG, renal ultrasound, urinalysis, and follow-up appointment. Perhaps by then he will have nearly outgrown his urinary reflux!
Back to those “Beautiful labs!”…
Getting “stuck” this time around was ridiculous. At the beginning, Connor was actually giggling through the first few tubes. (I know… yay!) Then they lost the vein and started to root around, and he lost it, too. The phlebotomists ended up pricking his fingertips, which meant I was covered in blood by the time we rolled out of there. Not a big deal, but it’s impossible to apply pressure to tiny, squirmy fingers! And then there was the issue of removing his urine collection bag myself and trying to empty it into a tiny cup, while applying pressure to his fingers, and while keeping him from rolling off the table. Fun times.
So, here we are at 14-15 months of age… and Connor’s blood work has finally come back to “within normal ranges”.
I’m definitely still in shock… but, oh so grateful!! At this point last year, we were just learning about all of these issues (1,2,3). What a relief to not have to try to understand or worry about blood counts, liver enzymes, platelets, etc.
He really has come such a long way!! (And we couldn’t feel more blessed.)
February 5, 2010
As far as the band goes, we just had our 3rd fitting, and by my count, there should only be 3-4 more fittings… or about 7 weeks left. I can’t wait! Any change to his head is definitely slower this time around. The subtleties the techs are feeling are not very apparent or obvious to me or Brian, so it’s very discouraging. However, we are determined to “hang in there” for the 3-month duration.
Hopefully this week will bring us a new PT schedule… there’s been some undesirable drama with the clinic we take him to, and the physical therapist we loved “is no longer there.” So, we’ll be assigned to our 4th physical therapist since we started going last August. Really hoping this is the last one, or else I’m going to have to take him somewhere new.
Connor also has his 15-month well-check coming up, where we expect he’ll be graduated from formula to whole milk (not that he has much interest in the bottle anymore). And, we’ll be seeing his surgeon to talk about a hernia.
Busy. busy. busy!
February 5, 2010