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Thanks for your prayers about a couple of big appointments that we had this week.

Ruby's CAT scan went fine, although they had to poke her 5 times before they could get the IV line in. They always have a hard time finding good veins on her. Last time we went for the MRI they couldn't even get an IV line in, so we had to go back home and do it a different time with oral sedation. Thankfully, 5 pokes and an hour of screaming later, they did get the IV so they could inject contrast in her veins. She was so exhausted from crying hard that we didn't have to sedate her for the pictures; I was glad about that. The kidney doctor called us the next day and told us that the CAT scan looked completely normal!! Whatever they saw on the ultrasound didn't even show up on the scan so we have no follow up planned right now. Yeah God!

Thursday we met with Ruby's neurologist. Unfortunately, he doesn't know what to do with Ruby anymore. They have tried every good medication for her condition, along with the ketogenic diet. Nothing has seemed to work, exept the ACTH injections, which did stop the seizures for a few months, but then they came back. We tossed around the idea of doing a second round of ACTH, but it was so rough on her and us that we are hesitant. Also, when she was seizure free, she did do a little better developmentally, but it wasn't night and day different to how she is developing now. We are not sure if it is worth going through that again to get two more months of seizure freedom.... hard call. We also talked to our doctor about getting another opinion; he said he is more than willing to refer us to the U of M if we want. We might do this down the road, but I really like our doctors and I know there are a couple of great pediatric neuros in the office we go to that talk about Ruby already so right there we get a second and third opinion. Also, we did see Dr. Chugani last spring.... I might email him to see what he thinks.

So, after an hour of discussing of all this, we decided that we want to wean her off some of the meds. At this point, what do we have to lose? She is already having daily seizures with the meds. We are hoping that if we have less meds in her system she will be more alert and be able to make a few more developmental gains. We chose to start by weaning Vigabatrin. She has been on this med for a year and although it is one of the frontline meds for IS, is hasn't stopped her spasms. We are wondering if the Vigabatrin is affecting her eyesight and her muscletone, so we are going to see what her body does without that med. If she handles it well, we may start to wean another med. If her seizures go crazy, then we can resort to steroids and get another doctor to take a look at her.

It is very hard to be at this point. I never want to feel like I am giving up on Ruby. I need to remind myself that even though we are weaning meds, we aren't giving up on her, we just need to know what Ruby is like without so many meds in her system. We are continuing to pursue cranial sacral therapy and intense physical and occupational therapy. I am also seriously looking into an alternative therapy call ABR (Advanced Biomechanical Rehabilitation). Unfortunately, to start this type of therapy we would have to travel to Montreal for a week and insurance wouldn't cover it. But, I have be communicating with several parents who have told me it really worked to increase muscle strength in their kids who also have CP with low tone and epilepsy. If it works, then the cost is worth it. I would pay thousands and thousands of dollars just to have Ruby be able to hold her head up. If any of you are interested in reading about ABR you can click here. If any of you have tried it, I would love to learn about your experiences with it.

Thanks again for your prayers. Emotionally, we are doing okay. We are sick of the med game and we are excited to put less stuff in her system. Your continued prayers for wisdom and peace for us as we make tough decision and energy to complete the daily grind of appointments and therapy would be appreciated.