Friday, May 17, 2013

The Ultimate Fighter

Friday, February 3, 2012

I could talk about the life lessons Eliah teaches me daily.  I could talk about how he has changed my life in ways I could never imagine.  I could talk about how Eliah awakens each morning with a big smile, despite the health issues he's having.  But it's been said before, by me, and by other parents of special needs children.  What it comes down to is this....  Eliah is one tough kid. 

The past couple days have been very difficult.  He had a total of ten seizures yesterday, and many in the previous days.  Sometimes he stops breathing and his lips turn blue.  The look in his eyes is terrifying, and I have no idea if he feels as scared as he looks. 

We met with the Neurologist to discuss a new medication to try, Lamictal.  It's not normally prescribed for children, and can have very serious and potentially fatal results.  We have to watch him very carefully for any reactions.  After his first dose last night, he is barely able to keep his head up this morning.  He seems comatose.  I hope that improves.  This seems to be a last resort type drug.

The doctor mentioned that we could try an Epilepsy Center to treat him, but it's highly unlikely that they would ever consider brain surgery to fix Eliah's seizures.  Not only because of his Hemophilia, but because there are so many damaged parts to his brain, they wouldn't know where to begin. 

In addition, Eliah's Sympathetic Nervous System is completely wonky (yes, that's a technical term).  The SNS controls the functions of the body like blood pressure, sweating, digestion, temperature and other involuntary actions.  Sometimes, when Eliah's SNS is overactive, it's like being on an adrenaline high all the time.  His blood pressure is out of control, upwards of 160 for Systolic pressure (the force that blood exerts on the artery walls as the heart contracts to pump out the blood).  His hands and feet sweat, his eyes dilate, and he is super sensitive and reactive to his surroundings. 

Then, without warning, he drops out of high gear and goes the other way.  His temperature can be 102 one minute, then within 15 minutes, can be down to 97.  His blood pressure does the same thing.  His body just can't maintain control, and we suspect this is one of the parts of his brain that is damaged.  There is no known way to fix it at this point, not even with stem cell therapy, so we treat the symptoms as we can.

We also met with the Nephrologist last week (blood pressure doctor).  He agrees that Eliah's blood pressure is out of control.  Most of the time it's way too high.  But there are also times that it's normal.  In addition, and I've mentioned this in the past, Eliah's blood pressure is not proportionate.  Meaning, the pressure of what pumps out of his heart (systolic) is much higher than what pumps in to his heart (diastolic).  It's like Eliah's heart cannot keep up with the amount of pressure.  The doctor cannot treat him for high blood pressure, because it will make his heart too weak. 

So, the next step at this point is to head to the Cardiologist.  We need to find out if his heart is getting enlarged from all the work it's performing.  If it's becoming too muscular, we have to treat for high blood pressure.  If it's okay, we just leave it alone and hope he does well.  He is scheduled to have an Echo cardiogram on Tuesday. 

In the meantime, Make-A-Wish called to schedule a photo shoot next weekend with Eliah.  Apparently, Applebee's sponsors them, and Eliah will be assigned his own restaurant within the area, where he will be featured on the menu (not to be eaten).  I better get to fixing his special needs haircut. 

Not to be outdone with Eliah's ongoing fight, Natalie has become a shining star.  She is breezing through the 2nd grade, testing in math and reading at a 5th grade level. She reads about two or three 300 page books a week in addition to her advanced reading books at school. Because of her test results, she has been invited to the Gifted and Talented school in the area.  Only 75 children in the county per grade are invited to go to this school, and we are scheduled to tour the school in just a few hours. 

I'm proud.  I'm proud that no matter what my children are given, they smile, they laugh.  I'm proud that they don't just cope, they fight and work for a better life. 





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