A Rough Couple of Days

We have had a rough couple of days at the TenHaken house. Over the last week or so, we have noticed that Ruby has a weird facial spasm going on. We started watching it, not sure if we should be concerned or not. On Wednesday, these spasms started to worsen and she had 8-9 episodes of these spasms that each last for 3-5 minutes. I called the pediatric development nurse at DeVos Children's Hospital that we have been in communication with. She got us scheduled with an EEG the next morning so we could see what was going on in Ruby's brain. Thursday we were at DeVos for the EEG, which took a couple of hours. This morning we went back to Grand Rapids to consult with the neurologist after he had read the EEG results. Unfortunately, the EEG showed him that Ruby has a form on epilepsy called "infantile spasms". The affects of this condition vary greatly. If it goes untreated, or if patients don't respond to treatment, it can be very devastating by leaving the person mentally and physically handicapped. To try and prevent it from getting bad, the doctor is starting Ruby on high doses of medication this weekend. If this medicine works, we should see less seizures over the weekend. If after a week or so we don't see any change, then we will change meds and try something else. If we can stop the seizures soon, then Ruby's prognosis is much better.

The doctor wants to do multiple EEGs to monitor Ruby's progress. Next week we have another EEG and an MRI scheduled. We were at DeVos today for several hours trying to get an MRI, but unfortunately, the nurses couldn't get an IV started to sedate Ruby. They tried every vein, some of them several times, before they gave up. It was torture watching her scream for almost an hour while they tried; I had to leave the room, but Mark was great and stayed with her. So, since by then it was so late in the day, we had to reschedule the MRI for next week and then they will use oral sedation instead of IV.

So, it was a very long, emotional day for us. Ruby is very tired and I think she will sleep good tonight. We gave her the first dose of meds tonight and we will do more tomorrow. We are praying hard that this first round of meds works. We will know a little bit more after the weekend when we assess her progress with the doctor.

We would really appreciate your prayers again. The last 6 weeks have been a crazy emotional journey, but this has by far been the toughest couple of days. We are trying to think about the positive instead of letting our minds wander, but that is tough. We will keep you updated.