Hello family, friends, and fellow fighters 🙂
Today we had an AMAZING pediatrician appointment for both Nova and Denver! After talking with a few wonderful people in our Dravet community, I realized there were SO many resources and doctors we needed on our team that we were unaware of. With the help of our pediatrician, we were able to get referrals for most of those today. We asked for a referral for a social worker, which will be able to help us with care coordination, connect us with other resources, help advocate for the girls and plan for emergencies as well as long term. We also got referrals for physical therapy, speech therapy and occupational therapy for them. They will do an initial assessment and determine if/what the girls need help with as well as help with preventative care. Along with that, the speech therapist should be able to help Nova with feeding therapy since she has significantly decreased the food she’s willing to eat recently. We will also be seeing a pulmonologist to get a prescription for a medical grade pulse ox and oxygen for home use, so we can hopefully avoid more hospital visits when we are able to avoid status seizures. Another doctor now on our team is a cardiologist- Dravet has higher risks of heart problems due to seizures and medication so now we will be able to check in on that and make sure everything stays okay with the kids. The last thing I am working on is a pediatric palliative care doctor. Palliative care may sound scary- but it isn’t end of life care like hospice. Palliative care provides support for families and children with life threatening or life limiting diseases. They can help us make sure the girls have the best quality of life possible as well as help advocate for them from a medical standpoint. Their pediatrician will refer us to a doctor as soon as I am able to find one in our area. Overall, I feel so much relief knowing that we have so many things in place and people on our team to ensure the girls get the best life and treatment possible. I am so excited to see what this will bring in the future.
Keep Fighting,
Addi Epilepsymama
