Cleveland!

We made it! 

We got into Cleveland on Tuesday afternoon after an exhausting yet uneventful day of travel...i.e. no poop explosions or trouble getting 32oz of medical formula past the TSA...although I managed to cause a bit of excitement by forgetting to empty the Nalgene bottle--half full of water--that was in my carry-on bag in KC.  Annoying for everyone, and I felt like an absolute idiot. 

Since we've been trying to get this written and posted for the past 3 days without much success, I'm going to do my best now to just get the details down and get this posted.

We got in on Tuesday and stayed in a lovely hotel just 2 blocks away from the hospital.

Wednesday morning we stashed most of our luggage in the hotel bell closet and walked over for our appointment with Dr. L, O's main epilepHtologist here. We had a really great visit with Dr. L during which we went back over O's entire health history beginning with my pregnancy. We immediately connected with Dr. L and felt instantly confident that he was the right doc for Otis. He is a very personable and compassionate man, and took great care to make sure that he had addressed all of our concerns and answered all of our questions. But what really sold us was when he referred to O as a "drool factory." It was at that moment that we knew Dr. L was the doc for us. 

After that visit, we had a bit of time to walk around and grab some lunch at a great farmer's market that is held on a lawn of the Cleveland Clinic campus once per week. Then we met with Dr. P, a neurogeneticist on O's CC care team who talked about new types of genetic testing which will become available early in the new year. He talked to us about the pros and cons of extensive genetic testing. Most of the cons had to do with the potential psychological effects on the two of us, since such extensive genetic testing could possibly uncover some genetic predispositions in all 3 of us for some undesirable health conditions that could potentially rear their heads in the future. It was an easy decision for us, though--we're willing to take that risk if there is a chance that one of these tests will uncover someing that will lead us to answers that will help Otis. We also discussed our own health and family health histories with Dr. P and talked at length about my pregnancy and O's birth and first weeks. We'll be in touch with Dr. P shortly after the new year so he can get the tests ordered. In addition to simple blood samples O can have drawn at Children's Mercy, he may also order some metabolic tests which will require a small muscle biopsy.

After the Dr. P appointment, we were admitted to the CC Children's Hospital where O was hooked up with his EEG leads which will stay on for most of our stay. This morning he was taken downstairs for anesthesia and a PET scan. He did very well with both. We don't have any PET results yet, but hope to hear something soon. We haven't been given a time yet, but O will have an MRI on Monday. It will also require sedation. Besides that, the only other tests he'll have are continued blood tests. Otis continues to be a champ despite the ongoing poking and prodding.

We won't know until the scan results are in and compared with the EEG findings whether or not O will be a candidate for surgery. If he is, it sounds like they will want to do it very soon. In the meantime, Dr.K, the head of the pediatric epilepsy service and O's doc while he is inpatient, and Dr. L have decided to change O's seizure med from clonazepam, which he is currently on, to clobazam. If we learn that surgery is not an option, they will probably look into adding an additional drug.

O's room here is really small. We take turns sleeping in a hospital bed with him, since it's difficult to get him in the crib safely with all of the cords, wires, bells, whistles, hoops, and yo-yos he has trailing off of him right now. The other sleeps in a super comfy chair that folds out into a bed.

Our room doesn't have a shower, so we go a couple of floors down to the really nice Ronald McDonald family room where there are 2 showers, a laundry room, sofas and TV's for relaxing, and usually some snacks or meals provided by volunteers. 

Our return flight is scheduled for Monday afternoon, but with the MRI time still up in the air, we may end up changing that to some time on Tuesday. If that's the case, we'll probably see about staying at the Ronald McDonald House Monday night after we're discharged.

More soon! So much love to all our family and friends. Thank you so much for continuing to keep us in your prayers for healing and good information from all of the tests being done on Otis while we're here.