We are back home after a busy couple of days! Monday night I drove up to DC with the girls because I had to be at Childrens with them early for neuromuscular appointments. Peyton had a follow up in the clinic, Morgan had a new patient appt, they both saw the doc from NIH for the muscle ultrasounds (Peytons was repeat, Morgans was new) and Peyton had some of an EMG test done awake (she wouldnt tolerate it..which I didnt think she would, so we stopped). After we were done on Monday we drove home from DC and went to Morgantown after Tj got off work, did Thanksgiving in WV yesterday with his family and then drove back today, because he works tonight. Its been a lot of car time for all involved! So, the appointment. The clinic part was fine, just neuro tests and lots of talking, not too much of the EMG got done because Peyton didnt want to do it and was really upset. When Peyton had this muscle ultrasound done in June it was indicative of something being very wrong with her muscles, things like congenital myasthenia gravis and/or a metabolic disorder were mentioned. They repeated the ultrasound and ALL of Peytons muscles were normal. She still is getting referred to metabolics for some other issues but if she has a metabolic disorder it likely isnt one that affects the muscles. Morgans muscle ultrasound was veryyyy similar to what Peytons looked like in June. Not as bad and not as many muscles looked off but similar looking. So the consensus is that for some reason, in our kids, having the tethered cords literally affects the muscles in their whole body. Its definitely interesting, but seems to be reversible from Peytons history. So, it was a really good appointment, with good news (which doesnt seem to happen as much as I would like!) Happy Thanksgiving everyone!
Posted on: Thu, 27 Nov 2014 23:56:40 +0000
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