Lizze’s parents have provided a much needed reprieve today. They have taken Elliott and Gavin for the and tonight. 🙂
Elliott has been driving everyone crazy with his anxiety. Gavin has been doing as well can realistically be expected. We needed this break because we have an unbelievable amount of appointments beginning this we and lasting through the end of the month. We will basically be moving into Akron Children’s Hospital for the rest of the month, beginning with 5 appointments next week.
Between Elliott, Emmett and Gavin, we have several appointments with the neurologist for seizure concerns. We’re also hoping maybe we can get some more insight into Gavin’s other neurological issues. We will also be seeing the Rheumatologist because of Emmett’s rheumatological issues and Elliott’s joints and tendons. Gavin also has his next antibody infusion on Monday as well.
Later in the month, Lizze has an EMG scheduled. They are in the process of diagnosing neuropathy in her left leg. She will also be back to the neurologist because her tremors are spreading and the existing ones are getting worse, even on the increased medication.
The rest of this month is going to be crazy and we need as much rest as possible to prepare.
Good luck! I hope you find the answers you need.
I am so sorry that your family is going through this.
In regards to Lizzie's tremors, my doctor told me that the one I am developing is related to my meds. Tell her the Firbo group is thinking of her. 🙂