We have had quite a few appointments in the last few weeks. We went to the rheumatologist and Allison received 2 steroid injections. One in her knee to help the osteochondritis, and one in her right wrist. We tried to wean off of one medication, but it didn’t go very well. We also received Allie’s new wheelchair. It was the wrong one. It was sent back. A story for another day. June 30th, we saw the semi local, pediatric neurologist. We had to switch to a new one as he has hospital privileges, and has seen her disease before. He mostly checked Allie's range of motion, asked questions, and we discussed further plans. He would like another EMG run even though she just had one in may. Unfortunately when the lady did the EMG, she only did one arm and one leg. The signs showed active denervation, fasciculations, and other findings that indicate upper motor neuron disease. Now we have to run another one to see if those findings are bilateral. The 11th we went to the neurosurgeon. This was an evaluation for a procedure called SDR. This surgery helps children with spastic cerebral palsy gain skills, and be free of tone. Unfortunately, it would not be successful on Allison. She has lots of lower limb spasticity, but also she has too much dystonia and clonus. We will probably go forward with a baclofen pump. He is discussing it with her entire team. He is also speaking to her neurosurgeon in Dallas about removing the DBS implant. If the baclofen pump is unsuccessful, we will do the last resort. Combined rhizotomy. This surgery has some literature that says it is helpful on dystonia. But not enough evidence for it to be our first option. That surgery would also paralyze Allie. As he mentioned, none of these surgeries will be a miracle for her. Her disease is progressive. No matter what she always need orthopedic interventions. In fact she has one in August. But they will help reduce pain and discomfort. Some kids have these surgeries, and can start walking, have improved motor function. That is not what will happen with Allie. She has Complex HSP. There is a ton of underlying weakness. Everything we do is for comfort. It’s palliative.