The past few weeks have just been draining. We took Addyson to see a Neurogenetics which was informative. She actually helped us by getting the IV infusion protocol in place for her pots. We are hopeful this will help her have more energy and feel better. The doctor also has us starting her on some meds then we have to repeat labs in two weeks.

We have some big appointments coming up at chop so we have had lots of paperwork we are trying to gather for that. It’s a lot of work to gather all her medical records and get them sent.

We had Ethens IEP meeting yesterday. They gave him a BIP but they pulled his IEP. I’m not sure this is the right plan so we are reaching out to a few folks to see what our options are.

Overall I’m just drained. I know being a Paris exhausting it just seems like this week none of the appointments have gone as planned.

We have two appointments next week so fingers crossed those go well.

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