Wednesday, September 16, 2015

Wednesday, September 2, 2015

What a day this has been! Crazy Crazy Crazy. These past few months have been so crazy busy. I was hoping when school started that it would slow down but it has not. It seems like all I do is go to Therapy and doctors appointments. This morning Logan and I were in a car accident someone rear ended me and I have damage to my car. Thankfully Logan and I are fine. My back was a little sore but I think because I was shook up.

After that I headed to Logans Therapy, then off to pick up the girls from school. From there Elizabeth had a doctors appointment with her Nephrologist. Found out she still has a single kidney stone on her left side and developed two more on her right side. It has been a year since she has seen this doctor, he took her off her meds because her kidney stones on her right side were gone and only had one left on her left side. So now we start back at square one he put her back on her medication and we go back in 6 months for another renal ultrasound.

Hopefully over the next few weeks it will start to calm down. Logan had blood work done yesterday and I am waiting on the test results I am hoping his ammonia levels come back a little bit lower.

Tuesday, September 1, 2015

Logan's Ammonia levels are way to high because of the depakote. Even after raising the Carnitor medication. So because of the Ammonia levels being to high it makes him very tired and he could have more seizures. But his liver function is good so I am so thankful for that. So Doctor increased his Carnitor meds even higher. We go back to get more blood work done next week.
I asked about other alternatives like a VNS implant but because of his heart Logan can not have it. We also asked about medical marijuana and because of his heart he cannot have it. And there has been no studies showing what the long term effect is on children. Logan has such a complicated heart it makes everything so hard . So we just take one day at a time. Logan's body is very sensitive to the depakote that's why his ammonia levels are so high. Not sure what our next step is or where we go from here we just have to wait and take one day at a time. The depakote is working because he has not had a seizure since July 3rd. It's just so very frustrating. Because the medicine is working but then on the other hand his ammonia levels are getting too high. 😢