The myelodysplasia clinic in Fargo called yesterday, and the clinic for February has been cancelled. Joy. The next clinic will be held in mid-April. This changes our plans, since we were going to stay in a hotel in Fargo next Thursday (the kids don't have school Thurs-Fri for conferences) and make a fun couple days out of it. Now we'll have to take the kids out of school if they come along for this appointment in April (which is at 8:30 in the morning in a city 75 miles away). Oh well, what can you do??
Not able to wait any longer, we called the school's Early Childhood Special Education department, and Anju went in today for an orientation. She will hopefully have a PT/OT appt at our house in 2 weeks to evaluate her and start their services. We had wanted to wait until she saw the drs in Fargo, since they outline what should be done, but can't wait until April to start these services.
It is difficult to know what she needs, since most material on spina bifida divides it into 3 groups: myelomeningocele (what you usually think of--kid born with a hole in their back that has immediate surgery as a newborn--in a wheelchair or with braces--with a shunt and those kinds of issues), meningocele (only the covering to the spinal cord is sticking out the back at birth, not the spinal cord, so less problems), or occulta (not usually supposed to be too many problems-- many don't even know they have it). Anju's issue, lipomyelomeningocele, is not usually covered. Some resources I have read place it with the myelomeningocele group (India did), others place it in the occulta group (not an open spine). I would guess her tethered cord syndrome will be the issue--who knows!
So, I have no idea what her actual therapy needs are. I hope they'll be able to figure it out.
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2 comments:
So is she starting developmental preschool? I wasn't sure since in IN the child has to be 3. Or are you just making arrangements for the therapy? Take advantage of any free services you can find!
Early Childhood Special Education is available for free from birth in MN if you have a medically diagnosed condition. They'll come to the house once a week to once a month (depending on need)--some things are at the school too--they have a team with a PT, OT, speech pathologist and someone who works on the "educational" part- not sure what she is called. I'll take free any day!!!!
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