Tuesday we drove the 5 hours up to Dallas. Wednesday we had an appointment with the Dysautonomia specialist. We upped the metoprolol. We talked about a new plan. Insurance will not cover many migraine medications until age 18. So we have to wait a few more months. When that day comes she will order a preventative injection, as well as a migraine abortive medication. Tuesday we saw wound care. Gtube looks good. Site looks great. The stoma is a little tight but that’s all. After that we drove 45 minutes to a different hospital campus. This time we had an EMG. The EMG was abnormal. There are two parts though. A nerve conduction test, and the actual EMG part. The nerve conduction was fine. But the muscles had issues. They were very irritable. The results of the EMG and with the combination of the spine MRI further indicates complex HSP. Friday we had an appointment at 10 in the morning. This was for 500 units of Botox. They inject it into the spastic muscles to improve comfort. While it doesn’t drastically improve the symptoms, it does help a bit. We talked about next steps. Increasing the baclofen, waiting for genetics, and getting into the Scottish rite HSP clinic. While there might not be tons left they can do, it helps to have a person who has actually seen such a rare disease. In a week we drive to Chicago for intensive physical therapy. Then in June we come back and go straight into all the appointments. Neurology, rheumatology, pulmonology, OT eval, etc. And we hope that we eventually find all the answers, as well as a treatment to improve comfort.