Cardiology Update & Karaoke

Last Friday we had a post cath cardiology visit at Hope. The worst part for Jasiu was getting weighed and measured, strange I know.. He did fine with SATS, temperature and blood pressure, but the second we placed him on the scale, he lost his marbles. So our little man is at 9.19 kilos (20 pounds 3 ounces) 72.2cm. Because the cath results were much better than the doctor expected we did not do an echo so the visit was really fast. We had a quick review of his new skills, like cruising around furniture, crawling, crawling up the stairs, fine motor skills improving (like picking up little Gerber puffs with thumb and forefinger) etc. The only thing the speech therapists and I still think we are struggling with is eating, it's not that he doesn't eat, it's just really difficult to feed him because he needs distractions and has no real interest in eating unless he is being "tricked" into it or in case of midnight feedings, dream feeding the bottle. At this point it's pretty much completely behavioral and habitual. He just doesn't like it, weather it's a result of previous trauma to the throat via NG or ventilator or something else, he just isn't interested. We are lucky enough that cartoons and toys can distract him enough to get him to open his mouth for solids and the bottle. He still can pretty much make himself throw up on demand whenever he feels like it or doesn't want to eat, however it is much less lately down to about every other day or so.


Finally we see the cardiologist and again Jasiu goes hysterical again. I think the last cath visit to the hospital and the monthly synagis shots have done a toll on this kid and anyone trying to come near him with a stethoscope he puts his guard up. But his lungs and heart sound good at the time and we did not learn anything new. He asked me if I had any concerns and I didn't besides the whole eating thing and the doctor simply said "He doesn't look malnutritioned to me". That's it. It's kind of frustrating because he doesn't realize how much work it really is go get him to eat and look like he does but obviously they can't do anything about it. There is no magic pill they can give him to make him WANT to eat.. so we just need to keep doing what we are doing and hope for a brighter future as our little warrior grows to be a BIG warrior.


On to fun stuff.. we have learned this week that Jasiu loves Emily's karaoke radio. He loves music and loves to scream, I mean sing to the microphone, clap and bounce to the music. IT. IS. HILARIOUS. at least to me. See our link for yourself. Note, it is a polish folk song he's singing, this is the norm in our house :)

Birthday countdown continues... 4 weeks till the BIG B-DAY !