Hey friends, family and fellow fighters- in case you missed it on our other social medias, we launched Warrior Wear! This apparel line is perfect for you to wear on Warrior Wednesdays to help us raise awareness for Dravet. All proceeds go to supporting the girls through their fight with Dravet. For other ways to show them support you can donate directly to their GoFundMe under the donate tab on the homepage of our site. We’ve also created an Amazon wishlist- https://www.amazon.com/registries/gl/guest-view/6PCH96V2QIG3?ref_=cm_sw_r_apin_ggr-subnav-share_12TYZ1DD1V40XETS93R8&language=en-US This list has products the girls use daily, med equipment, and some toys/games/ books they are interested in 🙂
Going into February, we have bloodwork to see how Nova is recovering from the Depakote problems. We also have her VNS consult this week (we had to reschedule). Then later this month we have Denver’s cardiology follow up.
Both girls are still struggling with much more myoclonus than I am happy with. I plan on calling this week to get them an in person appointment set up with neurology. When I try to schedule through the app, it says they have NOTHING until June- and that’s not acceptable to me.
I have been asking for oxygen and a medical grade pulse ox for both girls since August of last year. We have been jumping through hoops to complete everything insurance is asking of us to make this happen. One of those hoops was the pulmonologist where Nova was diagnosed with asthma. We were told both kids would also need a sleep study and overnight pulse ox study to maybe possibly get oxygen- despite them desating during every seizure.
Well, I am so thankful Nova’s asthma diagnosis came when it did. She had an asthma attack just a few days later. And that asthma attack got them both the oxygen and pulse ox they needed just a few days later.
I feel so much relief knowing that we have these now when we need them, but at the same time, part of me is SO ANGRY with how simple this was with a new diagnosis. We have been fighting for this for so long, but it feels like at times with Dravet being so uncommon and unknown, there is a lack of care in the medical field for it. Asthma got us what we needed, approved and in our home, in less than 3 days. Dravet got us nowhere in 5 months. This is a major step in the right direction for the girls’ health, but it is also a huge reminder of how hard being a Dravet mama is.
I’m not going to lie, seeing all the medical equipment in my home is gut wrenching. It is very hard having another visual reminder of what your babies go through and how hard their lives are. It is so comforting having these tools for emergencies, but there is a bittersweet feeling to it.
We love you all, keep fighting
Addi Epilepsymama
