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We are in trouble, now! - September 16, 2012



Ethan started looking sick yesterday while we were in Mt. Vernon attending my Great Grandmother's funeral. Great Grandma was an amazing woman of faith who loved the Lord and her family. She had been ready to "go home" for many years. She was 99 years old, and although she had been in the nursing home for several years and had a lot of trouble remembering who people were in the last few years, she never forgot the old hymns that she played on the piano and organ at Marlow General Baptist church for the majority of her adult life. Most often she was accompanied by my other Great Grandma who went to be with the Lord when I was pregnant with Ethan. I consider myself very blessed to have such amazing examples of strong, determined, women of faith growing up. I have visions of these two ladies now in heaven with the Lord and so many of their loved ones who went before them.

We made sure to take Ethan's cortef (steroids) with us and we've been stress dosing Ethan since yesterday morning. He is still full of yellow boogies and is a bit warm, but seems to still have energy to play and climb (as seen above). I am very thankful that we saw the endocrinologist on Friday. We'll have to wait a few days to do the retest since the results would be off since Ethan is currently on the cortef, but that is okay. We'll get it done once he starts feeling better.

On a different note, Ethan seemed to eat better today than he has in weeks. He has still be drinking his bottle but hasn't wanted to eat any solids/purees. Today for lunch he had a bit of homemade chili - I made it with ground chicken instead of beef hoping that Ethan would at least give it a try, and he seemed to like it. He then had some peach applesauce that had a few tiny pieces of peach in it. Then for dinner he had some mandarin oranges, and instead of pureeing them like I usually do I cut them into tiny little pieces and he seemed to do just fine! I'm so proud of my little man.

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Here we go again!

Yesterday, our family got to take another trip to the ER. Just a little after 7am, after I had fed Ethan breakfast and gave him his morning medications, he and I came into the living room to play before we had to get ready to leave for school. Ethan had 5 seizures, each lasting 10 to 15 seconds, back to back. Jeff had not yet left for work so I had him get the Diazepam, Ethan's rescue medication, and we gave it to him. The Diazepam is supposed to stop the cluster seizures, but it didn't. The seizures continued and didn't show any signs of stopping so the three of us packed up and headed off to the ER. By the time we arrived at the ER the drowsiness that is a side effect of the Diazepam was very evident, and although Ethan wasn't sleeping, he was definitely out of it. He had another small seizure shortly after we got to the hospital while we were being checked in. Once again his vitals were monitored and blood taken. The doctor spoke on the phone with our neurologist...