Tomorrow is our big day of medical appointments for Nesiah. She has numerous diagnoses due to her brain injury.She has an extensive team of specialist that follow her case. She currently is doing well and on maintenance with the majority of the Dr's.
She has a local GI and Neurologist that she sees every 6 months. GI is in charge of her Gtube and her weight.Her appointments are very routine, we go in we see the Dr. He askes if I have any concerns, I say no. He does a physical exam and we leave!
Neurology is in charge of her seizure meds and seizure activity. In the past 2 years there has been less and less seizure activity showing her EEG. Her Neurologist is very detailed. I love him. He has helped me get various medical referrals that she needs. He is very much on top of things.
However, we have an hour's drive to see Nesiah's Orthopedic Dr and her Ophthalmologist. We only see them once a year and we try to do both on one day. It is generally a very long day. Ophthmalogy does this testing that requires her to have painful eye drops then wait 45 minutes before doing the eye exam. She has cortical vision impairment so generally there is not much involved in this appointment. It is one of those appointments you keep just to make sure that nothing new is happening.
The big deal appointment this year is the Orthopedist. I love this team and their efficiency. We generally go in, do an xray then go over the results with the Dr. (love him), get his recommendation then leave.
Because Nesiah does not walk, her hips and the surrounding muscles do not work the way God designed them to work. For the past 2 years her hip has slowly been pulled out of it's socket. She will need a major and very painful surgery to correct this. I pray hard every year that we could go one more year without surgery. I can not imagine dealing with a 60 lb non mobile, non verbal child in a body cast for 6 weeks.
So far she has not shown any indication of pain in her hip. We would not know about the hip dislocation if we did not do the xrays. I keep in communication with the school nurse and therapists who don't believe she is in pain. So I am hoping that means we can wait another year for surgery!
We actually enjoy going to this children's hospital. In the past I have taken all the kids along, no one complained. The staff referred to them as Nesiah's entourage!
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