Karter was almost two month seizure free and we are so thankful for that. He is doing well in his development, the physiotherapist is happy with how his head control is coming along. We are thankful that he is eating and sleeping well and he has regained the two pounds that he lost in the fall.
Over the last week however, Karter has been having seizures again daily. Sometimes they are full focal seizures where he will seize for about a minute and then there are aftershocks for about ten minutes and sometimes, it is just the shock like motions.
I called the Neurology department on Monday and they decided to put Karter on another medication. This was not a surprise to us as they wanted him to start that right away when the other medication was started back in January, but we wanted to hold off until it was absolutely necessary. So he started that on Monday evening.
Yesterday he had three episodes of the shock like behavior and one full focal seizure lasting 1 minute, then ten minutes of aftershock. He appeared to have weird movements, a bit jolty to me, not as typical as they had been over the last month. I got a bit anxious about it and called the Neuro clinic again. Because of our holiday, I want to make sure that he is going to be fine while we are away.
This morning the nurse got back to me and forwarded my request to the doctor, when she called back she said that the doctor wanted to do an EEG and have us meet with her and the surgeon to expedite a plan for Karter. I guess the fear, both mine and theirs, is that the spasms are returning. If that is the case we will need to revisit the surgery option.
As you can well imagine, we were thankful to be able to pass last weeks surgery date knowing that he was doing well and that we did not need to go down that road, now we are facing that as an option again. I feel exhausted with this whole journey, our main goal the whole time has been that Karter reaches a place of total health.
So we need wisdom to make the right decisions on Karter's behalf. We do not want to be foolish and sit and do nothing but we do want to leave room for God to work. Healing can come in many different ways and we are so aware of that. God is still God if Karter has to have surgery! Healing may just look a bit different than how we had wanted it to play out. Our faith is still helping us hold out for total healing, but if I am to be brutally honest, I am feeling weak these past days. I need the prayers of the saints for sure!
We are so thankful that God has allowed the doctors to find a reason for Karter's seizures and we are thankful that there is something that can be done through medical science, without that I am not sure where I would be.
Please pray that we would not let our human desires get in the way of God's work, that we would hear form God clearly the answers that we need. Also, for strength to get through this next week. We would love to hear encouraging news next week. I have already had someone say that they are praying for a normal EEG on Monday...amen sister! Whatever may happen we know that in all things God is in control, He has not left us for one second in this whole journey.
Thanks for journeying along with us, we love you all
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