Wednesday, August 16, 2006

Now McKenzie

Okay I need to write out about McKenzie but where do you start with her she just isn't a normal kid. Don't get me wrong she is a wonderful little girl and I love her who wouldn't she is the child who every teacher dreams of or as her 1st grade teacher told me she wishes she had 20 more of her as she is like having another adult in the class.
The problem is something is always going wrong with her. Kenzie was born November 19, 1998 10 days before her due date as after Joshua I am unable to have another baby naturally due to a classical incision from his emergency c-section when she was born she seemed to be a completely healthy baby gained weight normally and a healthy 7lbs and 10ounces at birth. It all began when she was 3 months old and exposed to Pnemonia by her also 3 month old cousin who basically lived with us at the time fortunatley she managed to keep out of the hospital but it led to her first of 18 ear infections at least that is the amount of times she was in for them till she was 18 months old. Poor kid got horrible yeast infections with every antibiotic she went on and was always needing antibiotics due to all being very bad infections she was in every three to 4 weeks getting checked for infections in between they would clear up but the fluid in her ears never went away. She built up some kind of resistance to most of the lighter antibiotics and even now they automatically put her on at least the zpak because prescriptions like amoxicilan does nothing for her yet the stronger the antibiotic the worse her yeast infection! When she was 18 months old it was obvious she would need to have tubes inserted in both ears to keep the fluid drained but the first set of tube she ended up with an infection in her left ear which caused damage to her ear drum and hearing loss at about 40%. Also she needed to have that tube replaced obviously. After this her ear infections stopped but her fevers began she would get random fevers out of nowhere up to 103 with no other symptoms lots of tests but never a reason for it she still gets those, they only last a day then go away. When she was 2 we notice the first really scarry issue which is when she started having rectal prolapse which started our fears of cystic fibrosis at the time she really had no other symptoms they ran a test on her that tested for about 30 of the mutations and did find one gene but you have to have two to have the disease and there are over 800 identified mutations but the insurance would not agree to pay for the bigger testing unless she did an sweat test and it was positive so we tried that again and again and again. Everytime we have gone in to do the test she sweats everywhere but where they have the collector disc thing so they never got enough to run the test she has been tested so many times it is getting frustrated we still try at least once a year as she now also has asthma very reactive and she takes albuterol daily and as needed also she takes zyrtec due to lots of allergies. She is also very heat intolerant and has had heat exhaustion about 3 times in teh last year not as far as heat stroke but we worry a lot in the summer that it will happen so she walks around carrying a bottle of water all the time to help keep her hidrated but her temp has spiked over 104 during these episodes several times. In the last year she has developed constipation issues, she goes daily and has no complaints but even when she has a bowel cleanout (which she really hates by the way) she is never completly cleaned out which has me frustrated because the only answer I get is some kids have that problem but no answer to why in the meantime she takes miralax daily though it doesn't keep her cleaned out and she goes like she always did and she has constant tummy pain that has her in tears when really bad. I can't help but think something has to be wrong with her but I don't ever seem to get anywhere with a really reason for all of this and I just want my little girl to feel good someday. She also was diagnosed with acid reflux this year and takes 2 doses of zyrtec a day so yes she has quite the med list for a kid who has never really been diagnosed with anything specific her daily meds consist of albuterol, miralax, zyrtec and zantac, with her ibuprofen for belly pain when needed and any antibiotics when she gets sick. She sees an ENT, gastrointerologist and her regular dr for now but occasionally another gets added to the list depending on what is going on at the time.
Through this she is a sweet little girl who generally does whatever is asked but wears her emotions on her sleeves, she loves to dress like a princess and wear skirts and dresses whenever she can, she will never intentionally hurt someone in any way and would probably give you anything if you asked.

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