I woke up 3 times in the night with Dawson's seizeres so strong the whole bed was shaking. He's had 2 more similar this morning and is already down for a nap from exhaustion. (8:30 am) That's prob a good thing though because his leg is so bad today, walking is really frustrating him and making him C.R.A.N.K.Y. My sweet little man :'(
I am laying here with him asleep on my shoulder. He looks so sweet when he sleeps.
Tuesday we had appointments up at Primary Children's. It was the best experience we've had with PCMC yet. Dr. Barkan was so kind and concerned, I felt like she really listened and wanted to do everything she could to help us.
Wow.
For example, she said she had canceled her clinics that day except for us. "I couldn't cancel my Farr family." I almost cried. She gave me her personal cell, land line and email. She told me she was frustrated with PCMC's system (amen!) and to get call her directly ANYTIME. She also said (my fave) we could see her anytime. "If I need to see someone, I'll see them. These people don't know anything. I can see you anytime."
I don't know how to adequately describe what that means to us. When we have a prob, we call and they get us in ASAP - which is usually around 3 months later. And by the time the apnt comes, we have a whole new set of probs.
Dr. Barkan also showed me pics of the MRI's and I read the reports from the EEG's. I signed some paperwork to have all the records (including cd's of the pics from the tests) to be sent to us. We should have them within a few weeks. It was really nice to actually SEE the results, not just hear a quick summary.
So, to understate it by a mile, Tuesday's appointment was a big deal.
The plan is to try Meds for 6 more months (we are going to be weaning him off Triliptol & Topomax and also adding a new one) and then we will start talking about the "S word" as Dr. Barkan calls it.
Surgery.
Dawson has now failed 3 Meds: Triliptol, Keppra, and Topomax.
This is from the book "the Cleveland Clinic Guide to Epilepsy":
"Nowadays, the average period a patient lives with uncontrolled seizure before surgery is attempted is approximately ten years. Many of us see this as an unnecessarily long time for a patient to suffer the consequences of seizures if surgery is a viable option for that person....the idea is to shorten the time between believing that surgery is a good idea and actually getting it done. If the first few drugs don't work, it's highly unlikely that the next several medications will be any more effective."
Before the last 8 months, brain surgery was not an option in my mind. Too scary to think about. But then Dawson has to live with this every day. His hand isn't normal anymore. His leg is going in and out of normal. How do we just wait for it to get better, knowing there is just as much chance it will get worse?
There is a really high success rate for surgery. There are also plenty of horror stories. It is overwhelming to realize that such an enormous decision lies with Kevin and I. Thank goodness for prayer, temples, and knowing God knows us and HE is in charge.
My counselor told me that sometimes we have to accept the unknown as "an unknown" and find peace through that. If I keep reminding myself this, I can lean on that AND knowing God knows. Then I am ok.
But we aren't quite there yet either. We are gonna still pray -and fast and pray some more- that we find a medication to stop this. Wouldn't that be amazing? Statistically it can look unlikely but we have had miracles before. Why not know?
1 Nephi 4:1-3
1 And it came to pass that I spake unto my brethren, saying: Let us go up again unto Jerusalem, and let us be faithful in keeping the commandments of the Lord; for behold he is mightier than all the earth, then why not mightier than Laban and his fifty, yea, or even than his tens of thousands?
2 Therefore let us go up; let us be strong like unto Moses; for he truly spake unto the waters of the Red Sea and they divided hither and thither, and our fathers came through, out of captivity, on dry ground, and the armies of Pharaoh did follow and were drowned in the waters of the Red Sea.
3 Now behold ye know that this is true; and ye also know that an angel hath spoken unto you; wherefore can ye doubt? Let us go up; the Lord is able to deliver us, even as our fathers, and to destroy Laban, even as the Egyptians.
