A year ago my son had a spotted complexion. Sort of showing the Irish side a bit. But these were not freckles. Burst capillaries around his eyes and over the bridge of his nose. Brought on by aspirating fluids and trying unsuccessfully to catch your breath after wards. All the while turning purple and scaring the living $h!t out of mama. Sounds lovely eh?
Fast forward a year and what has changed?
Well, shortly before the above shot was taken my friend and I staged an aspiration episode and video taped it. The doctors were NOT listening. I was feeding my son with the telephone by my side just in case I needed 911.
After the video I was no longer "over reacting". The specialist appointments began.
Here we are a year later in a bit of a holding pattern. Severe reflux is controlled through medication. Medication we can't really stop, even if we think the reflux is abating, because dude's reflux causes BIG vomiting and vomiting and aspiration don't go together so well. So we medicate.
The swallowing, thought initially to be a developmental lag is not un-lagging. The expressive language is lagging now as well. And it is hyper-nasal (as is the vomit-but that is TMI). So we wait. With thickened milk. For another specialist. A special specialist. Things may be physiological. Surgically fixable. We need the special specialist to tell us for sure.
3 comments:
I sincerely hope you have some answers soon! He certainly is thriving, though! What a gorgeous little guy.
gosh, sure hope they can fix whatever it is....he looks so healthy and happy though, noone would know from his photos that he is having any trouble at all! Wishing always the best for you and Ben!
We are so glad that he is thriving. And praying that the special specialist appointments come soon!
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