Today, we went down for Keira's initial clinic visit which laid out her OMA treatment plan for the next year. Poornima and Abhi also came down to give Keira some additional moral support and we were also able to squeeze in a nice lunch with the crew between doctor appointments. This was the first time we've been able to have lunch out with Keira and while we were a bit nervous, Keira was in a great mood and did great.
After, because Keira will be in a clinical trial, Keira had to sit through 2+ hours of a Neuro-Psychologist evaluation to baseline her motor and developmental skills.
Starting tomorrow, Keira will receive her first treatment of IVIG and Cyclophosphamide. The first treatment this week will entail 2 days of IVIG treatment for 3+ hours each, along with 1 day of Cyclophosphamide treatment for ~2 hours. This will basically take up the remainder of the week for Tuesday-Thursday and we're starting out Tuesday morning with the IVIG treatment at 7:00am. The treatments will also involve a blood draw (poke) along with placing an IV (poke) :(
Tomorrow, we're also starting out with a Occupational Therapist evaluation in the afternoon as the doctors want to try and engage Keira's fine motor skills so that she can maintain the muscular strength and muscle memory while the drugs aim to bring down the neurological symptoms. Next week we'll be working with a Physical Therapist who will help do the same therapy for Keira's gross motor skills.
After this week, we'll be going back for IVIG and Cyclophosphamide treatment every ~28 days, and all of our subsequent treatments should be able to get done in a single day, which will be great.
The IVIG and Cyclophosphamide may have some side effects (nausea, headaches, fever, irritability, etc.) for the days following treatment, and we'll likely find out which of these side effects will surface in Keira along with it's intensity this week. Obviously we're hoping for minimal side-effects, but regardless, our first treatment this week will be helpful in gauging how we manage each subsequent treatment based on how Keira reacts.
It will be a long week for sure, but we're glad that we're aggressively starting the treatment process for Keira's OMA.
Here's a pic of little K on our way home after a long day of doctor visits :)
