I am writing from Portland OR tonight. We drove here yesterday in the nasty rain. Driving in the rain, on the freeway in a little Kia....is not the most fun. Especially in the dusk hours and in the dark, no moon night. But we finally made it here, wet and tired. The kids jumped around like crazy, happy to be out of the car after 6 1/2 hours. And they surprisingly went to sleep very easily. Angel was out in minutes of laying down, Ayden and I shared bed time stories for about 20 minutes before he was asleep, they both slept hard. I, however, hardly slept at all. I was awake to see the clock at every hour and tossed and turned. When my alarm finally went off I was relieved that the night was finally over.
Waking the kids is never fun, but I finally got to get in Ayden's face and say "Ayden, its morning time, wake up!" This is what he does to me every morning. We had some quick toaster waffles and were out the door. Thankfully Cheryl lead the way to the hospital, Nathan and I are not great navigators of the city. The rain was still pouring down, making the freeways a nightmare in my little car. In an hour of morning traffic we got to the Doernbecher Children's Hospital at OHSU.
It is such a nice facility, with friendly people at every desk. We were looking for the purple chipmunk desk on the 7th floor, and luckily went in the right door to make it there quickly. We didn't have to wait long to see the doctor, which was nice.
The first appointment was genetics. The last time we saw genetics was 4 1/2 years ago. When we went to the genetics research facility in Spokane WA. At that time they said here is a picture of her chromosomes, and here is the ring....there are no other cases recorded with this chromosome combination and we have no information for you. And, with a frown, I tell you that we got pretty much the same information. There are several cases out there with ring chromosomes, and cases with 8th chromosome abnormalities, but not really any that are Ring 8 Chromosome. So Angel is just Angel, and like no other.
We did learn that the cases when her arms and chest turn blue are normal and not a risk to her health in any way. That is a relief, its kind of scary when her arms are such a dark blue/purple.
So after the genetics appointment we were off to the neurologist. Dr. Hoch was very nice. Its hard when the doctor is asking us for our questions, when we don't know what to ask except "what is going on with my child and how do we stop it". He said that based on my episode log and description of them; paired with the EEG that she had done a few months ago, these are definitely seizures.
To us these seizures are very serious and feel like the world is ending every time. He said that they are actually mild, and we should worry when they last more than 4-5 minutes, or she is having several of them in a week, consistently. Medications are tricky and can be harsh to her organs or development. She is so small and already so delayed that we feel unsure about taking those risks, if these are indeed, mild.
He referred us to a pediatric neurologist in Spokane, which is much closer for us to travel. He said that we should have a new EEG done as well as an MRI. These aren't things that can be done the same day, so we won't be able to do it in this trip. Hopefully these tests will help see these seizures a little more clearly, helping them to diagnose and medicate more accurately.
We finished up the night with some Olive Garden, and now we are getting the kids in their pjs. Hopefully the rain will let up some in the morning when we head back home.