We are still in Baltimore seeing specialists and having many, many tests. Just met with the 2nd neurosurgeon to tell us that Josh has C1 & C2 instability (first and second discs in his C spine), also called AAI. This could possibly be causing many of Josh’s symptoms of confusion, memory loss, incontinence, weakness, headache and more. All from reduced blood flow to the brain along with possible constriction of CSF (cerebrospinal fluid). The ivig (immunoglobulin) infusions we were so desperate for have been approved and scheduled for the week of November 18th. These would help if Josh’s issues stem from something autoimmune…if not, they won’t help. Now trying to decide which direction makes the most sense. Such a tough decisions! The ivig is of course less invasive, but not without risk and takes months of infusions to see results. Josh still has a lot of blood tests yet to be taken, we’ll work on those this week. Also setting up a visit with a neuro urologist to try and figure out what’s going on there. Thankfully there’s a Whole Foods on the next block so I can walk over and get us some food for the week, Josh still can’t eat much in the way of solid food, but he looks forward to the blackened salmon and dairy free ice cream daily. Thanks for all of the well wishes and encouragement, we are both weary from this ordeal, but I’m not going to give up until Josh is on the mend, this is no life for him. A year ago he was hiking and traveling and now he is bed bound and in a wheelchair for any distance. We just have to figure this out. Hugs to all of you.

We are still in Baltimore going to and setting up appointments with specialists. Josh got hooked up this morning with an ambulatory EEG to attempt to capture these episodes of confusion and brain "electiricty" he feels daily. Hopefully there will be some clue on the EEG with this. He will remain hooked up (as well as video monitoring) until Saturday.  We are waiting to hear back from a couple of different docs about appointments next week and just playing things by ear week to week, trying to juggle appointments, blood work and get on cancelation lists since many of the docs are booking out until January.   

Hello Friends, It’s been a while since we’ve updated, things have been busy. We are still trying to figure out what is going on with Josh. There have been some small victories and we are hanging on to them as we creep along in this process. The three weeks Josh spent at U Penn were disappointing to say the least. We left there without a real plan of any kind in place other than they suggested we return to Arizona where Josh could be seen by his autonomic neurologist (there are zero autonomic neurologists in the state of PA). While at Penn Josh continued to have confusion episodes where he didn’t know where he was or why he was there. No further testing was done to investigate. I brought Josh back to my home since during his time at Penn, we’d gotten the results back on the mold issue at the house Josh and Dan had been renting. Mold infestation in the basement, sky high levels of mold in the air on the first and second floors. No one has lived there since mid-August, I’m still trying to get the rent reimbursed from mid-August thru September 30th. Once at my house, Josh’s confusion came back almost immediately (I suspect there is mold in my basement as well). The addition of my dog and Josh’s allergies didn’t help matters any. Within days we were on our way to the ER of the Reading Hospital. Several days later another ER visit on September 14th led to Josh being admitted there for close to a week. Again, they suggested a larger facility, admitting that they really didn’t have the resources to treat Josh. After Josh’s release from Reading on September 20th the following week he was waking up in the middle of the night disoriented, not knowing where he was and asking who I was. On October 2nd after an especially long period of confusion, we put Josh in the car, put the child locks on and drove to Baltimore to take Josh to the Hopkins ER. Prior to this, Josh’s primary care doc in Lancaster had called the Hopkins Physician Access Line hoping she might be able to get him admitted there for a work up, but they simply told her that we should drive the two hours to the ER and hope for the best. I was not optimistic, but we’d run out of options. The ER was packed with people, but thankfully Josh was taken back rather quickly, considering we’d been told that others had been waiting for seven hours already. It was probably five hours until we’d seen a doc, but once back in the actual ER room, things moved well. I had the binder Josh had prepared months before with his testing and doc reports from Mayo, Penn and others. There was a team of doctors pouring over it, throwing ideas back and forth for testing and possible work ups, it was amazing. After several more agonizing hours, they admitted Josh. Josh spent three days at Hopkins as an inpatient. He was seen by Internal Medicine, Neurology, Genetics, Psychology and Neurosurgery. Neurology was really running the show, even though Josh had been admitted to an Internal Medicine unit. The Neurologist said Josh’s neuro exam was very abnormal, he saw that Penn had noted several concerning things about his exam there and he couldn’t understand why they hadn’t done further testing. The docs at Hopkins ordered loads of blood work, ordered a full body PET scan, scheduled follow ups with other specialists in the coming weeks. Genetics wants to do a full genome work up for Josh to see what is going on, they also offered to help us with the NIH Undiagnosed Disease application (which is daunting and needs to be completed by a doctor). Neurosurgery suggested follow up with a local doc in Maryland who specializes in CCI (Cranial Cervical Instability) for a second opinion (we’ve already had a consult with a doc in NY who suspects Josh may have this). Josh and I moved into a hotel about 30 minutes north of Baltimore to plan our next steps. While at that hotel, Josh was symptom free except for the daily episodes Josh describes as electricity in his brain, a scrambled feeling, not being able to think straight. This can happen multiple times per day. The only times the confusion would come back, is when the cleaning staff was at work. I put towels under our door to try to keep the fumes out, but it didn’t work well, I ended up just taking Josh out of the hotel and we’d sit in the car until the fumes had dissipated. After several days of Josh feeling as though there might be a bigger episode coming on, I decided to book an Airbnb apartment. I found one just a couple of blocks from the hospital. The place looked immaculate. It was only a one bedroom, but there was a pull-out sofa in the living room, it was perfect. I booked it for two weeks. We arrived at the apartment on Wednesday Oct 16th. Within hours of arriving, Josh was totally disoriented. He kept telling me he needed to leave for work, had to get his car, he had a meeting to go to…of course none of this was true. For two hours I kept him at bay, didn’t allow him to get near the door of the apartment…but when he started complaining of extreme nausea and head pain, I called 911. We arrived at the Hopkins ER at 6:30pm. I’ll spare you most of the details…but we didn’t see a doctor until 6:30am the following morning - twelve hours later. It was the most horrific experience yet in ten months of hell. During the night, Josh didn’t even recognize me and tried to run out of the ER. By the time we saw a doctor, Josh was back to himself. The good news is, they ran more blood work and there were some abnormalities. We actually hope for abnormal tests now. They also made arrangements to assign Josh a primary care doc at Hopkins who will oversee all of this, something Josh and I had been doing up to this point. Next week we have three more appointments and hopefully will have a better idea of next steps. We left the ER and headed back to the apartment where almost immediately Josh began to feel confused again, I put him in my car, loaded up all our things and left. We can’t go back there. Even though it’s a lovely, spotless apartment, it’s in an old building that smells of cigarette smoke and I suspect there may be mold in that basement that is getting in through the air ducts. We are now in a hotel about a mile from Hopkins. We’re just too afraid to be too far away at this point, but Josh has not had any confusion since getting here. We will stay put for the next week. There are small victories though! Josh’s gastroparesis seems to be a little better, he’s been able to tolerate small amounts of solid (but soft) foods. After losing over 40 pounds, Josh’s weight has stabilized and he’s now holding his own at about 150 pounds. We are still awaiting many blood tests and I’m sure after the genetic testing there will be an even longer wait. We are still trying to get in to see another couple of specialists and that doesn’t happen quickly either. We will just need to be patient, but that’s difficult since it seems Josh is declining cognitively. He can’t remember things from day to day. He wakes up and can’t feel his arm or leg for an hour or more. We are hoping that we can close in on this before Josh has any permanent damage. This has been and seems it will continue to be a long haul. We thank everyone who has donated to Josh's cause so far, I don't know what we would have done without all of you. Thank you for making this a bit easier.