Bumps in the road

The last year has been a year of progress and growth.  Austin has worked with three of the most AMAZING women.  I firmly believe God put these women in his life because he knew the special impact they would have on my little boy.  First is Julie, Austin's Occupational Therapist.  Not only has she helped him learn to sit, stand, walk, run & jump....she has been a wonderful friend to our family.  Austin loves her like she is part of his family.  The doorbell rings and he asks if it's Julie.  Frequently she makes it into his night time listing of names (his version of praying).  Next is Laurie, Austin's teacher at preschool.  She worked tirelessly to help him become more independent and learn and grow academically.  I think he has a crush on her too because he like to smile and get bashful when we talk about her.  Lastly, we have Sandra.  Sandra is a retired school teacher who works TRUE magic with Austin.  She has been able to teach him to sit and listen.  He can do puzzles, read books with her and so many other skills.  His cognitive ability has grown by leaps and bounds.  At just 2 years old he can identify all the letters of the alphabet (upper case and lower case) and identify colors.  He's now learning to count.  Austin loves to "play" with her but he really loves sneaking into her lap for her to read to him. 

With all this great news, you'd think we're on top of the world.  Well, we were until last Saturday.  Just over a week ago, our world was flipped upside down yet again. As we were entering SAM's, Austin had the first seizure of his life.  While it seemed like an eternity, it was just only about a 60-70 seconds in length.  It was the most frightening thing I'd ever seen.  Imagine your toddler not be able to communicate with you, twitch, go stiff as a board, and turn white before he passed out.  We rushed to the ER, and while waiting in the lobby, he had yet another seizure.  We were sent by ambulance to another hospital and he was admitted.  I won't go into the pure HELL he endured during that stay with the failed testing, but suffice it to say, if I ever see that tech again, she needs to run!

Our wonderful doctor called the new neurologist we're going to start seeing and had a phone consult with him to move our appointment up from October.  We were seen within the week at Cook's Children's Hospital in Fort Worth.  (Can I just say what an outstanding hospital this place is!!  It's really nice and I can see why TriCare didn't cover it without us begging for over a year.)  After examining Austin, he determined that something else is going wrong other than Cerebral Palsy.  He ordered tons of blood work, another EEG, and MRI's of his head, spine and lower back.  Dr. Malik also told us that he thinks the seizures aren't actually epilepsy but a symptom of a bigger issue.  He also requested a genetic test (SNP Micro Array chromosome test) to help him determine what is exactly wrong with Austin.  By looking at his muscle enzymes, amino acids, and chromosomes in combination with the EEG and MRI's, he can have a complete picture of the problem.  At this point, he is looking for a degenerative disorder. (This is heartbreaking to think of, so I won't.) The SNP Micro Array test is essential for helping the doctor determine what is wrong with Austin and how they can help him.  Unfortunately, this test is not covered by TriCare.  I'm not even sure there is a way to appeal it because it's just not covered for ANY person covered by active duty military insurance.

I'd love to be able to explain to TriCare how it feels to be a mother of a child with special needs who can't tell you where it hurts or exactly what is wrong.  I'd like for them to see my heart break each time he has a seizure and I know I can do nothing to help him or stop them from happening.  I'd like for them to see the fear he experiences when he has a focal seizure.  He's fully conscious but scared and disoriented with out being able to be comforted.   I'd like for TriCare to know that we travel 2+ hours EACH WAY for doctor's visits and have for over a year because there is something wrong with my child that can't be ignored or treated at our regular pediatrician's office.  I wish we could, but that isn't the case.  I'd love TriCare to spend a day in my shoes and then explain to me why $5,000 for this test is too much, and how it isn't something medically necessary.  You can't put a price tag on helping your child but that is exactly what we've been asked to do.  We either pay out of pocket for the test or my 2 year old goes without.