Yesterday ended with Chloe's first trip to the ER. She's fine. More of a Mommy-freak out than anything. She loves standing in the bath, holding on to the side and then sitting with force so that the water splashes all around her. It always brings around a lot of giggles...from us all, except Jeremy, who usually worries she'll get hurt. (Fear confirmed) Honestly, I never expected anything negative to EVER come of it. The kids keep little plastic stacking cups in the tub, which by the way were made specifically for this purpose. As Chloe went to sit last night, one of the cups (upside down) slipped under her bum and actually cut her. And, of course, I freaked out. Apparently, that area bleeds a lot, so the water immediately turned pink and I freaked out. I couldn't tell what was bleeding exactly, or how bad it was, so Colin and I rushed her to the ER. We weren't even there an hour...thank goodness...the doctor basically just told me I freaked out. She's been fine today and I was glad that our biggest fear, the first potty, went smoothly, and the wound appears much better today.
Over the last 24 hours, Colin has developed a cold. Which, I am quickly beginning to believe may be turning into yet another sinus infection. So, we spent the evening fighting over medicine. Which, he eventually gagged down with minimal tears.
Which leads me to the final update. We received an update today in the mail of the summary from the Cleft-Craniofacial Team we met with on September 8th: Most of it is medical jargon, which I will look up this week, but I'm too tired right now, so I am just going to retype it. It states:
His left orbit is elevated somewhat greater than the right. His left cheek is somewhat hypoplastic. His left ear bas been reconstructed with otogenous cartilage. His mandible shows a 5 degrees upward cant with minimal change to the maxilla. His palate shows some hemiparesis on the left side. His cranial nerve exam was difficult because of inability to cooperate. (Of course, he was playing shy. We all know better. :)) Intraoral examination reveals the presence of mild left hemipalatal paresis with his palate elevating up and to the right. Perceptual velopharyngeal assessment today reveals symptoms of bilateral inconsistnet visible nasal emission and mild hypernasality. He obtained a weighted speech score of 2 today indicative of a borderline competent velopharyngeal mechanism.
The plan: we will begin monitoring the growth and development of Colin's jaws over time. He may be a candidate for a soft tissue balancing procedure in the future, as well as jaw surgery to level and align his dental planes.
The only speech articulation error noted during speech production today is interdentalization of sibilants (Christi's note: slurring of s's. Correct me if I'm wrong, but I'm pretty sure that a lot of younger kids have this and outgrow it.)
We head to genetics on Monday for a review of the breakdown of his diagnosis. Just to be sure that all of the bases are covered. Things seem to keep popping up, which I know we have been told to expect with his conditions, but the Craniofacial Team thinks that the new geneticist at Children's can help make us more aware of any outstanding issues which we haven't looked into yet.
The problem with GoldenHar, and Hemifacial Microsomia for that matter, is that they are both conditions in which an issue that wasn't present early on can develop over time just because our bodies change as we grow and Colin's bones, cartilage, growth patterns, etc. are different than the average person. So, as we've come to learn, most of this is just a waiting game.
Happy day tomorrow. Jeremy will be coming home for a few days. Colin is anxious to say the least.
No comments:
Post a Comment