We have so many things coming up over the next month
We have Ethens IEP meeting on the 9th. The school did a functional behavioral assessment and are finally offering a BIP. I don’t have a lot of faith in it but I know we have to give it a try. Reading his reports were not Easy. The county psychologist did a good job. He captured multiple issues throughout the last 45 days. Ethen knows he’s different. He knows kids at school are being mean and making fun of him. He even said he really dislikes school because of the other kids and how rude they are towards him. How do we leave our child in this setting? We are interested in hearing the suggestions during the meeting Thursday.
We have Addysons chop appointments coming up In Jan and February. Rare disease clinic, Gi, rheumatology, cardiology, autonomic dysfunction clinic and mito clinic. We are working hard to get them all her medical records that they need. This is a huge task in itself.
We heard from the Neurogenetics nurse that all her labs are in and the dr will call us to discuss next steps upon her return from vacation. Hopefully we hear something next week. At least on the infusion protocol. That will be a huge help. I’m not 100% sure how we will juggle it but we will figure that out with time.