"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Saturday, April 16, 2011

April 16, 2011

While Benjamin continues to have seizures, he was discharged late yesterday afternoon. The official EEG results were devastating. Ryan was working so I was the only one in the room when his doctor came in at the end of the day to discuss them with me. I was told that between seizures, Benjamin's "background activity" is extremely disorganized with no recognizable pattern. What's most concerning is that the "disorganization" has evolved from his last EEG which was about 2 weeks ago. Right now they're diagnosing him as having general epilepsy, but his primary neuro doctor is worried that he may develop a condition called hypsarrhythmia. I asked her what this meant, and she said the seizures will most likely escalate. She said Benjamin will always need to be on a moderate to heavy dose of multiple seizure meds. She said the goal is for him not to be so medicated that he's "not Benjamin anymore." I had him sleeping so peacefully in my arms and I just looked at him and broke down. I told her that I know he's not going to be perfect, but I want him to have a good quality of life. Ryan arrived shortly after (in time for the next round of neuro doctors to come in) and got the same story. I started crying again and all I could say to them was "hasn't this poor little boy been through enough?" I really thought having gone through what we went through a year ago, I would get used to these bombshells being dropped on us, but I'm not. Maybe I've been living in denial for a bit. Who knows. But all of a sudden this is very real and unbelievably scary. Ryan and I are finding ourselves asking the same questions we asked a year ago... Why is this happening to us? Why can't Benjamin catch a break?

2 comments:

  1. Jackie, I don't even know what to say... everything I come up with just sounds so insignificant and not enough to convey what's in my heart. I think what it comes down to is that my heart just breaks for you. I'm so sorry that Benjamin's life has been such a struggle. Like Mark said, in a world full of bad stuff you set an example of courage and love for others. I'm hear for you if you ever just need a shoulder to lean or cry on. Love you sweetie. Stay strong.

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  2. Jackie,
    Benjamin has been in our daily prayers since we first learned of your difficulties in pregnancy. I'm so sad that he's struggling anew; not that the poor baby has ever been without struggles! We will continue to pray for Benjamin, and for you and Ryan. God won't give you more than you can handle, and by His grace, you will get through this. He loves you. May you be richly blessed.

    Cheryl Hess

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