Sunday, March 28, 2010

Wish for things

Atty has an appointment at Children's this Tuesday.
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His doctor and I have discussed on the phone the possibility that Atty might have Mitochondrial disease. Something I brought up to his pediatrician almost two years ago.
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He will possibly be tested on Tuesday.
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It's a muscle biopsy.
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I want all this to end.
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But I also want more answers.
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Some help, not just medicine, some real answers, long term solutions.
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Some healing.
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I hate that he has to go through all this.
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He's only three.
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I want to take it away...I want to suffer for him.
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He's having drop attacks again.
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I'm not handling this very well.
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Actually I'm quietly falling apart.
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I hate hearing him crashing to the ground.
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head cracking on tile floor.
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Cries of surprise and pain.
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Hate watching him watch his brothers play.
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With a blank look on his face.
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When your child's neurologists tell you that your child is baffling...it's not good.
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When they say they wish they had some better ideas, but to be honest there winging it at this point...it's scary.
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We are running out of medicines to try.
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They have mentioned brain surgery once already.
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It bugs me that he can't eat what everyone else is eating. I know that sounds minimal next to brain surgery, but it's an every day frustration.
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Especially when he doesn't want to eat his special food. I just want to be able to give him the food I know he would love to eat. Regular ol' bread, yogurt made from cow's milk, etc...
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I feel frustrated when he doesn't eat the food I make him, from freaking scratch because I have to...(because he can't have wheat, gluten, any dairy or coconut)
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I really want him to be able to enjoy his food (he does like some of it), but it's hard to make something yummy from my options for him.
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he's losing weight and not eating very well at all. It's starting to scare me.
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I want him to be healthy.
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I hate that the word seizure is common place in our house now.
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I discovered more of the cafe-au-lait spots on his body. They only mean one thing NF1. Why that too? Why did he have to inherit both things from his birth mom. Why?
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I can't stand all the doctor's appointments and paperwork.
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Blood work. Making a sweet tempered little boy sit still over and over again while they poke a needle in his arm. I hate needles. I can't even watch.
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Medicine. Three different medicines. Two times a day.
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Fussing and crying during the night. Not sleeping well at all.
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I find myself breaking down praying and crying at random times during the day.
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I wish we could go back to the way it was just a few sort months ago...minus the food allergies too while I'm wishing for things.

6 comments:

A Musing Mom (Taylorclan6) said...

Keep praying and crying.

It will get better.

Lisa said...

Praying for you. God loves Atty so much, and is crying right along with you. He has a plan. He knows why this is happening. He knows you can handle it. Otherwise it wouldn't be happening to you. Or to Atty. I wish I could do more than just type and pray. I ran a daycare for many years, and I would if I could, come over and just take care of your kids so you could sleep. Drink water. Lots of water. It makes you feel better!! (((hugs))) ~Lisa

Brittany said...

Ohhh honey! I can't imagine what you're going through! I will continue to pray for you and this sweet little boy. I know that we keep saying it, but we'll keep doing it. I sure wish I could do something more to help!!!

mommytoalot said...

Thinking about you. I sure hope they find some answers for you. I often think about Atty and your family.
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is her allergic to wheat and gluten or is it supposed to help prevent seizures.?
xxoo

Riahli said...

He's allergic or to be more specific he has food sensitivities. Extremely. We figured that out before the seizures started. Although an excessive(relatively speaking in comparison to normal) amount of sugar (like he had right after the holidays before the seizures first started) does seem to trigger seizures for him and his doctor thinks in might have something to do with how he matabolizes things. That of course is not why he has seizures it just seems to be worse afterwards. Who knows, he really is a hard one to figure out. Back to the food thing when Atty eats dairy he starts having autistic like behavior...it's a very noticable and scary change in behavior. Wheat and gluten causes all kinds of other nasty problems.

There is a special diet (ketogenic diet) that is suggested for some people but not often for children, it doesn't always work and is really hard to follow. I would do it if his doctors suggested it, but they haven't yet. I have thought about it myself, though I do feel that a diet like that for a kid would need to be followed closely by a doctor and so I would need full support to do it. In fact I think I will bring it up again to his doctor tomorrow. I would hate to have even more restrictions food wise for him, but if it helped it would be so worth it.

Life by the Handful said...

I have not been getting on here too often but I often find myself wondering how you and your family is doing. Reading this breaks my heart and makes the pit of my stomach hurt just imagining. I hope your wishes and prayers are answered and that you find a little peace and rest.