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Friday, March 27, 2009

I Know What People Must Think...

He can't have all of these going on....he can't be this sick, he looks normal, he runs normal, he eats when he's told to, he's smart and goofy, HE LOOKS NORMAL! Little did we know that inside this perfect little body is a poorly functioning pancreas, a stomach that may not be able to break down gluton, and an overactive brain. So when people say "stop looking for things to be wrong" how do I answer....I've been where they are...doubting. I've thought it of others....it can't really be as bad as they say/think....I'm eating my words/thoughts. Lane had yet another seizure on Wednesday afternoon....this was for him the scariest....the first seizure he had hallucinations of "lizards with pincers" he held his hands about a foot apart to show us how big and he said they were on the ground. The second seizure was on March 20th...he doesn't remember that one, he was scared but he fell asleep after the seizure and doesn't remember it at all, so we aren't sure what he saw. And then Wednesday I arrived as he was coming out of it, he didn't see me or hear me come in but he knew I was there when I held him...afterwards I was looking at him (he was crying nearly uncontrollably and I asked if he was scared and he said he was scared of the dark place, when I asked if when he woke up he could see Ethan, he said no, if he could see his bed, he said no, and Daddy, No....he was terrified! I called the neurologist on call, this means he will need to be medicated for his seizures from now on....this is a good step if he continues to have seizures. We can't continue to allow him to seize just waiting to see if he'll outgrow this. Oh I pray he outgrows this! Then Thursday we had an appt with a gastro Dr....they did a blood panel on him a few weeks back and it was determined that he has 11 markers for Celiac disease (normal is 3). The doctor was WONDERFUL! We loved him! He was upbeat and didn't think of celiac as a bad disease, he would require no medication if ever diagnosed with this! So yesterday they did a more definitive blood work up that will give us a positive or a negative...if it comes up negative we go back 6 mos later for another blood draw to see where we go from there, if it's positive they'll bring him back and biopsy the lining of his stomach/small intestine. This sounds very scary but really it's not as bad as it sounds. *sigh* I'm tired. But I'm not the one doing the work, Lane and God...they're in this together!

On an unrelated note, the pregnancy is the most boring and wonderful pregnancy EVER! I'm 18 weeks 3 days, blood pressure is great, I've gained 3 lbs and the baby is starting to move around a little bit! The books say that baby is about the size of a can of soda from the top of his/her head to his/her little rump! LOL! and next Tuesday will be about the size of a grapefruit or large mango! Getting so big so fast! LOL! I LOVE IT!

In case you're curious what celiac would mean for my family. Lane could no longer eat pasta, bread, cake, pizza....processed gluton....it's all off limits. The carbs he would be able to eat are potato carbs and rice carbs....the saddest part of all would be that he could no longer eat lo mein....his absolute FAVORITE meal EVER! oh the thought makes me cry....

1 comments:

Sarah said...

My heart breaks for Lane. I really hope you guys get good results back. The little guy is in my prayers. But like you mentioned in your post, you can't tell he has all of this stuff going on in his little body, he just takes. You know what they say, "God doesn't give you more than you can handle." Boy can Lane handle a lot!!