“I have made you. I will carry you; I will sustain you and I will rescue you.” ~Isaiah 46:4
A month ago I didn’t quite imagine how many medical moments we’d be going through this month and in the week ahead with our baby boy. We’ve officially went through all the tests he needed to undergo before his surgery next week. Yesterday Chance underwent a 24 hour EEG study after some concerns arose from his sleep study that he might be having seizures. This news came as a shock to us all…and just a few days later during aqua therapy his therapist noticed a seizure like movement in his leg during his therapy session. The very next day we made an appointment to meet with his neurologist for the first time. We agreed that we needed to be proactive and monitor him more closely to see what was going on in his little head. For the past two weeks since we met with his neurologist we kept a positive outlook on things – with the hopes that these tests would just be one more busy thing in our schedule but would help give us answers…and prayed that they would rule out the concerns of seizures. Unfortunately, the worries are far from gone.
Chance did amazing yesterday, 26 total wires plastered to his head and then having his head wrapped to keep him from prying the wires off his head. The wires annoyed us both, but we managed. He played. I managed to be quite productive in between his whiny moments of frustration of having the wires connected to his head. During the tests we were followed by a video camera that will be used by his neurologist to help analyze the EEG test results.
Unfortunately the EEG did not rule out the concerns that his doctor has. We will not receive the official full report until mid week next week because the doctor still will need to analyze things more closely but we were called today and told that he had enough abnormal and consistent EEG activities that they want to begin him on anti-seizure medication. My heart has certainly been a bit heavy today…thinking about how much we prayed not to have another worry…but we do. It’s too soon to know just how much all this may be affecting him but the concern is that if he is not medicated that the EEG activity could cause a seizure. The EEG abnormal activity is happening in the temporal area, which is a totally different part of his brain than where he’s having the chiari issues. So they don’t think there’s a connection, but we’re reassured that his doctors are working closely together and will continue to help give him the best care to help see him through whatever challenges arise.
Right now we’re trying not to allow ourselves to worry too much…he’s begun medication today and we’re reassured that will help us prevent seizures. So we’re going to try to let go of all the worries…and just trust in the Big Man that he’ll take care of our baby boy through every trial he brings his way. We’re going to spend the next few days giving him lots of love and admiring all those amazing smiles that lift our spirits.
Baby boy…we love you. Never forget that you are amazing.
by Amanda Kern
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