Sunday, September 23, 2007


The leaves are changing and the girls are enjoying being outside for these last few warm days. We've been picking lots of leaves, acorns, and flowers. I like this time of year because it seems easier to get cozy. You can lounge around in sweatshirts, light candles & drink hot chocolate. I enjoy fall!

We got our results from Mayo and all of Emeric's testing came back fine. Which again, is frustrating because it doesn't mean there is nothing wrong, it just means they still don't know what it is. Yesterday I got his "clinical documents" from them and this was his list of diagnoses:

1.Global Developmental Delay
2. Seizure Disorder with seizure-related, mild developmental regression
3. Nevus sebaceous with alopecia(this is a birthmark on his head)
4. Microcytic anemia
5. B12 deficiency
6. Failure to Thrive
7. Hypotonia(low muscle tone)

That list feels really overwhelming to me. Mostly because those are all secondary symptoms. Meaning they aren't the real problem, they're caused by something else. We need to find the primary cause of all of these things and that's where we're stuck. We met with his neurologist last week and she thinks we need to move forward with a muscle & skin biopsy. This is the only definitive way to know what, if anything, we're dealing with. We'll wait until November until we go back to Mayo and then see what the routine lab work shows. If it still isn't giving us answers we'll get the biopsy done.

Overall he's been doing better seizure wise. We just upped his meds again which has helped, although the last couple days he's been acting "off". He's running a low grade fever which I think is probably why. Today he had a few questionable eye twitches that I'm assuming were seizures.

Right now the PT is coming 2x a month but she's going to increase it to once a week to try to get him to catch up a bit. He still can't pull up yet and he stiffens his legs so they'll be working with him on that. The OT is coming 2x a month and she's been working with him as well. In her words he has "sensory issues"(which I'd diagnosed him with months ago, lol) as well as poor fine motor skills. Although, in my opinion, he's doing really well!!

Jake is continuing construction & keeping busy. We were worried he may not have work this winter but now it looks like he will. I'm looking around trying to find something to make a bit extra & get some debts paid off. It's hard to really make anything if you have to find someone to watch 3 kids so I'm hoping to find something at night where Jake can watch the kids. The only problem I keep running into is Emeric is still nursing & I'm not sure how he'd take missing that night time feeding. I guess we'll find out. ;)

Well, since it's Sunday I'd love to say I'm off to rest but, in all reality I'm actually off to clean my bathroom & catch up on some laundry!


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