Saturday, September 3, 2011

4 Months?!?!

I can't believe it's been 4 months since I've blogged! I think about my blog frequently, just haven't taken the time to post. Our family has had a TON of changes in the last four months.

We finally have a diagnosis! SCADD- Short-chain acyl-CoA dehydrogenase deficiency. Basically that means that Ethan's body has trouble processing short chain fatty acids. I've had some trouble getting this all figured out, but I know for sure that butter, vinegar, and many preservatives and food additives contain short chain fatty acids. For now, we are feeding him mostly organic, minimally processed, foods. He's still eating mostly pureed food. He had a short time recently where he was really into table food, but unfortunately that has faded, and we're back to purees. They're really healthy, and he eats a range of things, so I'm not too worried abut it. As long as he's eating enough, I really don't care how he gets it.

Ethan had another round of seizures, and another hospital stay. On August 5th around 11am, Ethan had a seizure. He had a low grade fever. He's usually really out of it and REALLY clingy after a seizure. After such a traumatic event, I just can't bring myself to strap him into his car seat, and drive the 15 or so minutes to the ER. So, once again, we ended up taking an ambulance. About 1:30 that afternoon, while still in the ER, he had another seizure. They loaded him up with Tylenol, Motrin, and Valium, he drank plenty of apple juice, so they weren't too concerned about him getting dehydrated, and sent us home about 6pm that evening. After we got home, we couldn't get him to eat anything, therefore couldn't get his dose of Motrin in him. About 12:15am, he had his Tylenol, and was due for another dose of Valium at 12:40am. Unfortunately, a few minutes after he had the Tylenol, he had a third seizure. This time his temp had gotten up to 103.6. Back to the ER we went. They couldn't get any Motrin in him either, and the Tylenol wasn't lowering his fever. They basically doubled his Tylenol intake, and that finally brought down his fever around 6am, which is about when we were admitted into the hospital. Over the next few days, Ethan spent the majority of the time asleep, and barely ate or drank anything. Saturday he had two very small seizure episodes. Sunday night his fever broke, and by Tuesday morning we were finally discharged. Even though Ethan's always had a fever when he has a seizure, they're concerned about the number of seizures he's had. Including the two mini episodes he's had a total of ten seizures in 11 months. Now, they want to start him on Keppra. He hasn't started quite yet for various reasons, and now it's possible we'll wait until we're settled in Maryland before we start. We're waiting to hear back from our Pediatrician who is consulting with the Neurologist.

Hearing Loss-
Kids that have severe language delays, commonly have a hearing screening around 18 months old. Ethan had a hearing test about a month ago. First they test the pressure, it was normal. Then they test for otoacoustic emissions, his were absent (abnormal). The Audiologist said that it's possible that he was just too wiggly to get an accurate reading. Then, they did a behavioral test. We sat in a small room, and there were speakers in multiple parts of the room. There were also toys that moved and made noise, near the speakers. The Audiologist said that Ethan didn't respond to anything below 50 decibels. She said it was possible that he just didn't care, but that between the absent otoacoustic emissions, and the abnormal behavior test, she wanted to move forward with an ABR (Auditory Brainstem Response). It's a test that measures the brainstems response to sounds. This past Wednesday, we visited the Audiologist, and she repeated the previous tests. This time he had negative pressure in his ears (a precursor to an ear infection), still had absent otoacoustic emissions, and tested the same for the behavioral part of the test. We were all set for the big test, that happened yesterday. Because the test requires you to be still and quiet for 2 hours, they usually sedate babies. We arrived at the hospital at 6:30am, got checked in, prepped, and were ready to go. We got to stay with Ethan until he was asleep from the anesthesia. Two hours later, the Audiologist came back. She explained to us, that Ethan had mild hearing loss (approximately 35%), and that she wanted him to get fitted for hearing aids right away. As much as I knew this was a possibility, I was still a bit shocked. Basically, if Eric and I are having a conversation, if we're holding Ethan he can probably hear just fine, but if he's about ten or more feet away, he probably can't hear it. His type of hearing loss is considered neural hearing loss. This means there's been some damage to his auditory nerve. At this point, we have no clue what could have caused this. This will definitely through a kink into our moving plans (explained below). Right now, Ethan is currently insured through the state of Oregon. It's been such a huge blessing, because we currently have no costs for his medical care. Because of that, and the fact that we're already established with doctors here, I really want to get the hearing aids taken care of here. We'll just have to be patient, and see how it all plays out.

Summer Vacation!-
In the end of May, Eric was one of four people that got laid off. Without going into details, we'll just say we considered it a huge blessing and a huge relief. Obviously this also made things a bit complicated. Eric had numerous phone interviews, an in-house interview in both Austin Texas and Baltimore Maryland. Although it put us in quite a financial bind, we've had an amazing summer with Daddy at home. We've enjoyed endless trips to the park and pool, a trip to Lake Tahoe, Coarsegold, the Bay Area, and Middletown. Ethan got to visit 3 sets of grandparents, and meet his new cousin Ben. All in all, it's been a great summer.

After much searching, Eric found a job at a company called Zenimax, in near Baltimore Maryland. He starts on September 12th! We're in the process of trying to figure out how to get out there. All three of us will be flying out next Thursday the 8th. Eric will be there permanently, but Ethan and I will come back about a week and a half later. Hopefully in that time, we will find a place to rent, and start getting things settled. When Ethan and I get back, my Mom will come up to Oregon, and help us finish getting the house packed up. Then Ethan and I will join Eric permanently in Baltimore. Sometime in all that, we'll hopefully get Ethan's hearing aids figured out, plus there's a few other medical issues to get worked out before we head out there for good. It's going to be a HUGE transition. We've made some incredible friends here in Oregon, and even though it's far, it's been nice to be in driving distance of our family and friends in California. But, Ethan has grandparents, great grandparents, aunts, uncles and cousins on the East coast, so it will definitely be nice to be near that side of the family. Plus, I've heard nothing but amazing things about John's Hopkin's Hospital, so hopefully if anything our medical care will only get better. I think I'm the most excited go be near so many baseball teams!! I grew up a huge baseball fan, and can't wait to check out the stadiums in the North Eastern part of the country.

Phew! That's the short version of what our last few months have looked like. I've really missed blogging, and hope to get into a more regular rhythm.

1 comment:

  1. Wow, seeing your moving plan written out really makes it seem real. We're going to miss you so much! I'm praying God helps you find an amazing church near your new home where you can find a new group of friends swiftly. :)