About 3:15 a.m, August 22nd, Keenan woke from his sleep and had a mild seizure. It lasted no longer than a minute and was indeed mild. It was scary, but Brad and I did not panic--too much. He recovered from it well and for that we are so thankful. However, it was a blow for both of us because this one occurred almost two years (to the date) as the seizures he experienced two days after Kaylee was born.
I spent the rest of that night after his seizure watching closely and trying to find ways to alter his schedule to allow him more time for physical and mental rest. (I think I found a couple for the short-term.) You see, I believe with all my heart this seizure occurred due to stress and exhaustion. He does physical therapy 3-4 times a week and has a rigorous school schedule being a BIG 1st grader (lots of walking, the demands of learning new things, and having a struggle with writing). No wonder, huh???
I spent the next three days or so watching him carefully. I also was very sad. While having a seizure is not the end of the world, it was unexpected and caught us off guard. After working through many emotions, I am thankful God allowed Keenan to have such a mild seizure and if it served as a "wake up reminder" that Keenan can't fit into the normal "box" that other kids do, then so be it.
Jump ahead a week to September 1st--the neurologist wanted to get an EEG to take a look at brain activity. So, the night before Brad and I had to keep him up until midnight and woke him up at 6:00. The EEG confirmed what we did not want to hear...abnormal, seizure-like activity.
Their recommendation was to start Keenan on a seizure medication. He could go another two years without an episode, or have one the next day. Since there is no way to know, or totally rid his world of triggers, that seemed to be the best course of action. For those of you who are not aware of his past history, Keenan had a few seizures, back-to-back, right after Kaylee was born. At that time he was put on medications to control them. Over the next 5 months we tried two medications and were unhappy with both of them. They altered our little boy in ways we did not like, so after some wise counsel and MUCH prayer, we decided to take him off the medication and see what happened. It was so nice to see our vibrant, bright-eyed little guy come back to us, and on top of that...no seizures (for almost two years anyway).
I think Brad and I are both hesitant to go the medication route, but we are trying a new medication that is known to be the "clean cognitive" drug because the side effects are typically mild. So, it was decided that try this medication and see what happens. If his body tolerates it well, that will be great!!!!! Peace of mind for his seizures and does not alter his personality or energy level in major ways would be the best news. I have prayed over that bottle of medication, that his body would not be allergic, due to a very serious side effect, and that his body would tolerate it just fine. I also pray each time he puts one in his mouth.
This medication is one that starts "low and slow" in the body. He won't be at full dosage for almost two months. Since he does not have frequent seizures, the doctor felt fine trying this medication and giving his body plenty of time to try to adjust to it. So far we have seen no changes. This is day five and he is only taking it at night right now. I am keeping a daily journal so I can keep a log for the doctor and myself. Time will tell, but I am hopeful. I have to be or I would lose my mind!!!!
Keenan's Surgery. A few posts ago I talked about the follow-up surgery Keenan would need for his heel cords and hamstrings. This is scheduled to be September 13th. Man, where did the time go???? We had a tough decision to make on this one--postpone it so he has time to adjust to school and his schedule, or push on and get this last procedure behind him. I deferred to Brad on this one because when the decision had to be made, I was mentally "spent". So, next Monday we will travel to St. Louis for his procedure on Tuesday. He should be released the following day, which would put us back home Wednesday. This surgery is very minor compared to the last one and will help the tightness he still experiences in his legs. Hopefully this will give him more freedom with his legs and allow for maximum benefit as time passes and he becomes more confident and secure.
Overall, he is doing well. His physical therapist continues to see him progress. While they are not huge in terms of what he is able to do, he is gaining more strength and endurance. A critical piece to all of this is confidence. As he tries small, new things regularly, my hope is that his confidence will increase as well.
Thank you for following this journey. It changes more often than I would like, but God is there at every turn. Even though each trial causes me to have new faith, a little different than what I needed for the previous one, God proves himself faithful. Sometimes it takes me a little longer to see His hand than other times, but as long as I am still looking for Him, I think I am in good shape and still on the right track. I will be in real trouble when I quit looking for all the ways He takes care of my family and me as we journey through this life.
Thanks for reading and please pray for his medication and the upcoming surgery. We would appreciate it more than you know.
Blessings,
Tammy
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