Almost immediately after my last post, I hit a wall. All of the stress and pressure of the past few months caught up to me and I had a significant panic attack/nervous breakdown/something which was exacerbated when I went to my doctor and mysteriously they claimed he wasn’t covered by my insurance anymore – whereupon I became hysterical in the waiting room until they back pedaled and he saw me. He prescribed some anti-anxiety meds that have GREATLY helped me regain my balance. I am still struggling, but I don’t feel quite a much like I am going to drown. The chest pain and difficulty breathing are mostly gone, and I’m not *always* on the verge of tears. As always, so grateful to my amazing friends that are there to support me; you know who you are.
Lu has continued her merry-go-round of specialists, averaging about 2 different appointments a week with no real answers still. We have done more bloodwork and additional testing which revealed some vestibular challenges. She is on 3 different medications to try to ameliorate her symptoms with limited progress – for the most part everything is the same as it started in January. Her new neurosurgeon is back to recommending a lumbar puncture so he has been consulting with the neuroopthalmologist and the neurologist and that is likely to be scheduled in the next few weeks. He believes she may have an autoimmune disorder akin to MS and that the cervical syrinx may be camouflaging a myelination issue. We are also requesting an appointment at the Mayo Clinic because, really, at this point, it has been SIX MONTHS and we need some forward momentum.
Cole, unfortunately, has NOT yet found a balance on his meds. He is struggling and it hurts my heart to see it. It is incredibly frustrating not only for him, but for everyone around him and I just want to see him be able to be happy. We are working on it – in the meantime, I am incredibly appreciative of the amount of love and patience every single teacher at his school has shown him. Many of the people we encounter don’t understand him and he is not putting his best self out there at the moment.