We had Spencer's first high risk appointment the other day. He is now on 20 calorie formula! It's so nice to be able to follow the directions on the can for formula. We also met with speech, ot and a social worker as well as his doc.
We were supposed to have gotten his first cast done last week, but I blanked out and went to the wrong location. So Spence gets out of it until next week. He is getting that done, his button put in and a blood test...poor kid.
After the high risk appointment the other day, we had an ENT followup. One of the aids went over his medical history and mentioned Pierre Robin Sequence and some other syndrome. It is most likely stuff that was ruled out, but maybe genetics will have a diagnosis or something for us in August. I'm going to look into it more at our next high risk appt in six weeks.
Spencer is doing really well. We have OT with speech and PT coming out to the house, probably starting the week after next. We have an IEP meeting of sorts next week to establish goals and such for him, and we should start after that. They come to the house for the meeting and everything.
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I started this blog when my son was diagnosed with a clubbed foot while I was pregnant. His clubbed foot is one of dozens of diagnoses now! Shortly after birth, he was diagnosed with Pierre Robin Sequence. Spencer was diagnosed with Say Barber Biesecker (Ohdo) Syndrome in April of 2012. We recently found out he likely also has Genitopatellar Syndrome. In spite of all his medical issues, he's a happy and fairly healthy kid who is always keeping us on our toes.
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