We have had our first 2 weeks home after discharge. Things on the medical end are going ok. Cyla’s numbers look good as far as liver functionality goes.

Our schedule has been kinda relaxed in the scheme of how crazy it will be this week and on. We had just been doing therapy at home with mom as the the OT/PT such as practicing fine motor skills, baking, and even light bright.

Cy;a’s walking has gotten better but still not 100%. She still has to work on the stamina to help prevent injury. That will come with time and more therapy. She has tremors of her hands which they are monitoring to make sure they don’t worsen. That tends to cause some issues with some fine motor skills.

Cyla’s mood overall has been good except some frustration that we knew was going to come with adjusting to a new type of normal. I would say this may be the hardest part so far is just reinforcing the rules and guidelines they have set for her without making her feel smothered and overwhelmed.

This week is our first week of all her outpatient appointments so we will see how tired we are by Friday. Yesterday alone we had lab draws at 8am in Medina then downtown Cleveland by 12pm for her clinic appointments which lasted until 3:15pm. It was a long exhausting day.

We as her parents are starting to see the statements and bills coming in from the hospital stays and all her meds. Most recent, we received just one statement for $29,847 dollars and that was just for a test they did one day. The financial portion of this is extremely overwhelming to think about. Which makes us ever more thankful for all of you that continue to donate and fundraise for COTA in Cyla’s honor. Thank you so very much <3