3 in 2

We have been very busy lately, with lots of news and possibly different directions. We have been to 3 doctors in 2 weeks, whew! So let's start with the first...

The neurologist - we had a good visit. He was pleased with Erik's progression and development. He still needs work, but he sees improvement. He weighed in at 19.8 lbs! That's almost 2 lbs in 2 weeks. He went over the images of Erik's MRI, that was done back in January. As suspected, the amount of white matter in his brain is not as developed as it should be. But we can help development by nutrition and therapy. To refresh your memory... white matter is the tissue that helps with muscle function (i.e. large muscles, eye function, digestive function, etc). One thing the doc is going to have us do is a DNA test, yes that's right, he believes there is still a chance it's not a mitochondrial disorder! If it's a DNA issue, than it's more likely a "flook", for what Erik has going on. If it's mitochondrial than it's much more serious and we are dealing with more issues.

The naturopath - because of Erik's allergies and the nature of the things we are dealing with, we decided to see a naturopath. She was great. She read the detailed report from the genetecist. She has a different perspective of what others see. For example: the shape of his head. The geneticist believes the shape of his head is part of whatever disorder he has, but the naturopath believes it's because he was breech. His head was smashed against my ribs during labor, which flattened the top and made it more oblong. She did some cranial work and will continue to be working to move his cranial bones back to a more optimal position, rounding out his head. AMAZING! She believes he may be allergic to corn; which happens to be the #1 ingredient in the special formula recommended for kids allergic to milk. There is still some congestion with the new formula, but nothing like it was. We did a test that will look for reactions to 96 different foods. So for now, we have kept his food the same, until we get results in a couple of weeks. We are very excited to continue working with her and see how we can work together to figure out what we need to do.

The cardiologist - So to look into why Erik's hands and feet were COLD and RED, the pediatrician said we should see a cardiologist, because those symptoms can be indications of poor circulation and heart issues. WELL, since we changed formulas... he hands and feet were no longer cold or red. We could not figure out how this worked, but it did. When we told the naturopath she suggested it was because the cold hands and feet were actually an allergic reaction, from possibly the corn. Our new formula may not have nearly as much, hence him not reacting like he did before. So, when we saw the cardiologist he did an EKG and did a thorough check of his heart/pulse - in his chest, hands, and feet. He took a brief history and said, "I don't need to see Erik again. He is fine. He has a great heart". Yeah!!! Finally, good news from a doc who doesn't need us to come back :) - side note... the cardiologist had an english accent and looked like Pierce Brosnan (sp?) and he wore a bright colorful BOW TIE!

Well, I think we made it through our update. We've been busy, but things are settling down again and we like that.

Getting over the bump in the road...

We are feeling better since our last blog. This is where we are today... Erik IS GAINING WEIGHT!! Before we put him back on formula I measured around his calf. My thumb and middle finger could easily touch (I have tiny hands), now there is about 1/2 - 1 inch between them! Woohoo! We had the x-rays taken, but have not heard anything about what they saw, if anything. So, not sure if not hearing from the doc means good news, but we will see. Another giant improvement... Erik's hands and feet aren't cold or purple. It seems as though, since he started gaining weight, it's changed. We are going to keep the appointment with the cardiologist, just to make sure. We are working with the OT about his feeding. The OT seems confident about getting Erik on the right track.

It's a big difference from Erik's last checkup til now. It's been a lot of work to get all of this figured out and to keep everything straight, but it's also been encouraging to see who God brings from the woodwork. He always shows up. It's so good to see Erik improving and feeling better. Below is our latest venture out with NiNi and Grandpa, enjoy :) (I know we do)