Misconception

Areli is such a misconception. When we have a span of two-four weeks where we don't see a doctor, you tend to forget she is sick because she looks so 'normal'. That is if you don't notice her scratching her skin because her abnormal functioning liver makes her itchy. Or if you don't know that her struggle to roll over and crawl may be due to muscle weakness, not laziness. You may think she is spoiled or held too much, but her extreme attachment to me is because of countless pokes and procedures where I have handed her off to someone who 'hurt' her-she just knows if Mommy is holding her, she won't be hurt. Some people say 'she can't be THAT sick, she looks so healthy!'. Yes, my girl looks normal and appears to the untrained eye very healthy, but she's not. The disease that they think she has is progressive and even though she may appear normal it may not stay that way and I learned that this week. 

Areli has always been a difficult (for lack of a better word) baby. The past couple weeks she has been very happy, which we welcomed with open arms! It is truly amazing to hear her laugh everyday, because it is usually the opposite. While we were raveling in the joy of the new happy Areli, something was brewing inside her little unseen sick body. 

To make you understand more I want you to flex your neck muscles really hard until the point your head shakes very fast.

Areli started to shake like this. Her hands would clench, every muscle in her upper body tightens, she holds her breath, her head shakes for about 30 seconds to 2 minutes, then she exhales deeply or sometimes let's out a scream, then continues to play like nothing happened-happy and all. The first couple times I didn't think much of it, but then she started doing it upwards to 20-30 times a day. I called the doctor concerned she is having seizures (seizures are common with this disease). She has since stopped doing it so it is hard to officially call them seizures since the doctor hasn't been able to witness them (I tried to catch them on camera, but it doesn't do justice). We see the doctor next week and will discuss what to do from here. 

I realized that for the rest of my life I will be watching my girl for new symptoms, watching her for any sign things may be getting worse. Because that is the reality of a progressive disease-you will never be as healthy as you were yesterday. Okay, maybe that is a pessimistic way to think, but as soon as we relax into life, her disease seems to remind us it is still there.

Love,

Mama Linnea