Well, we still don't have any results from Cleveland yet. I'm hoping that's a good thing and means there's nothing obviously going on in his labs but I suppose I can't be too sure. Emeric had an eye doctor appt. on Friday because of some strange eye movements he's having. The eye doctor said it's not his eyes, which means it's his brain. We met with the neurologist and she is wondering if what we're seeing is possibly another type of seizure. She set up a 48 hr video EEG. I'm so looking forward to this!!(insert sarcasm here). She also wants an MRI and a muscle biopsy done. I really think if we have to have the muscle biopsy done we're going to go back to Cleveland for it. I just can't see risking having the frozen one done with only 60-70% accuracy whereas we could get the fresh muscle done with 90+% accuracy.

Emeric has also lost weight since we were seen by the neurologist last, which was a month ago. He's lost 18 oz. That's not great news and when we saw the GI at Mayo in August she told us if he hadn't gained any weight that she was going to do a scope & CT scan. She also said if he loses weight at any time to get a hold of her right away. So, I'll be calling her Monday. It makes me upset that he's losing weight. I know part of it, if not all of it, is that he's been pooping 4-6 times a day and puking little amounts all the time. Along with the low grade fever these symptoms make me think he has a virus, but this has lasted for months. What kid has a virus for over 2 months??

Please keep him in your prayers. I don't want to put him through all this testing and yet we can't not put him through it either. We've also scheduled surgery for his tear ducts to be fixed since they're still clogged. The eye doctor said if we wait much longer we'll end up needing a more extensive surgery to fix them so we're going ahead with it at the end of November.

Cleveland

Here are some pictures from Cleveland...

Cleveland is a really old city and the houses are beautiful. I dont' think I saw a single house that used vinyl siding, they were all brick or stone. The problem with Cleveland is the roads are terrible and the intersections suck and trying to get across takes at least 5 full minutes. The first few minutes are spent trying to see exactly which lane will take you across and the next few minutes are spent slamming on your brakes for pedestrians that apparently have the right away even while the light is green.

We stayed at the Ronald McDonald House while we were there which was really nice. They had a group come in every night to make meals and that was really nice!!

There's a picture of Anna and I standing in front of Lake Erie. We drove through a really bad neighborhood full of boarded up buildings, a guy stealing a hat from a local store, a stray bulldog, and lots of other ghetto-ish stuff to get to Lake Erie. And then we got there and all we saw was a group of about 6 black and white cats roaming around. It was nothing that spectacular. I guess that's what happens when you live in MN and are used to seeing lakes all the time!

As usual...

I haven't updated this forever!!

I just got back from Cleveland last week. I went there with my friend Anna. We took Emeric to see a specialist there since we've never gotten any real answers from Mayo. This guy we saw there is a pediatric neurologist but he specializes in metabolic & mitochondrial disease, which were two possibilities we felt might explain Emeric's issues. We're still waiting on test results from there before we have any real answers but he was able to narrow it down to either a genetic disorder or metabolic/mitochondrial disease. If he has a genetic disorder there's 20% chance we'll ever find out what it is or have a name for it. There's no treatment for them and there's such a wide array of disorders that you really have no idea what the progression will be, unless you're able to give it a specific name. If he has mitochondrial disease(which he does have some soft signs of) there is no cure. There is treatment and again it's hard to know how the disease will progress. I think I've posted this site before but if anyone is interested in finding out more about mitochondrial disease you can go to: http://www.umdf.org for more information.

Recently Emeric has started this new thing with his eyes where he's not tracking well and seems like he has a hard time focusing. His eyes also jerk back and forth quickly and it doesn't seem like seizures to me. He has an eye exam on Thursday and although he's had a normal eye exam in the past since this is new the neurologist wants him seen again. If it turns out he has another normal eye exam than we'll have to look at possibly doing another MRI or EEG to determine if it's a problem with his brain. It scares me to think this might be part of the progressive nature of these disorders. Hopefully we'll know more soon.

The girls are doing well. Neither of them were real thrilled that I was leaving for a week and Kylie wanted to know why she couldn't come with. I fear they're going to start resenting Emeric and the fact that he "always gets to come with" and the girls don't. I sure hope not. Today we had to go to the clinic to have Emeric's med level drawn and Kaydence kept asking why she couldn't have her blood tested. LOL They fully know what to expect each time we're at the clinic and they leave with loads of stickers each time.

Jake is still keeping busy with construction and it looks like he'll have some indoor work for at least the next few months so that's an answer to prayer!

Well, I'm off to do all the things that I have to wait until the kids are in bed to do! :)