Thursday, May 24, 2012

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There is no good way to title this post there are so many emotions I have right now relief, happiness, amazement, sadness, grief, guilt.  Now this probally sounds crazy but they all are about my baby Kinley.  She is almost 16 months old and i don't think she has really ever know what it is like to be healthy, atleast not completely anyway.  She was born very bruised and developed jaundice and had to be on the buli light and then started the reflux and then the ear infections.  Tonsilitis more often then most adults i know.  She had fluid in her ears for probally 5 months, and got tubes at 7 months, until then she had a hard time staying up when sitting up, when she would try and crawl she would fall over, she only said aa aa aa nothing else, she had am earinfecton for over a month, then after the tubes, the runny noses and sore throats and reflux really kicked up.  Now this might seem odd, but be NEVER knew she had an ear infection unless we happened to be going into the dr for something else.  She never showed regular symptoms, she never pulled her ears never refused to eat slept and played never ran a fever, all the basic things to look for she never did, she would also randomly break out in a rash and within minutes it was gone.  She got those tubes and within a a week she was crawling and sitting up and pretty soon we heard mama.  I was relieved that she could hear, but she was still very small, after her 4th sinus infection and the dr hearing her breath she thought we needed to go back to the ent, this is also after the 6th strep test in 4 to 6 months.  So back to the ENT we go and found out that yes her tonsils are on the side and not on the back like normal, all my kids and mine sat there.  After he got looking he realized she could not breath through her nose.  We got into surgery and took out the adenoids and thinned out the membraines in her nostrils so she could breath.  Well her adenoids were infected inside and out, they were really large and now she can breath better but still has issues.  Then we found out at our follow up her tube in her right ear migrated up, and wasn't where it was draining like it should, and did I mention that when she had her adenoids out she had apnea pauses with the breathing tube in?  We knew she had apnea pauses before but figured she wouldn't with the tube in.  So we knew at 11 months she would have to have her tonsils out,  but we had to wait for her to get bigger.  So we went for her follow up in april after 2 more strep test in april alone and knew after FLordia we would get the plan set out fro when they would come out, well the day we left for Florida her ear was draining but we didn't realize til we got there and her ear was really draining, but other then the draining you would not know she had an infection, she was happy and cuddley and ate as much as ever, she slept and we still hd fun, the first full day we were home we went to the dr and found out she had a sinus infection ear infection, and something else, amd lots of medicine to take, but a few days later when we came back for her check it wasn't much better and they decided that a culture was in order and guess what it is a MRSA in her ear!  After 17 days on antibiotics it started draining again, and after another strep test 2 in 2 weeks it is the MRSA still fighting, so now the dr thinks things need to happen NOW and not later, so we call our AMAZING ENT and find out she will have to stay over night, well our hosptial in town is for proft and EXPENSIVE!  I mean we have paid atleast $10,000 out of pocket after insurance and with a discount for paying in full, The insurance has asked that we stop using the hospital here if possble because they refuse to adjust their prices to make them more competitive.  So we got a referral to Primary Children's.  I Love our ENT and he has done amazing on all of us and I wanted to use him, but the price of our hospital is prohibitive.  I know Primary Children's is Amazing but it isn't our ENT.
   So now why I am amazed, Kinley is SO resilient.  She is happy and determined and does things I can't beleve she can do at almost 16 months.  We took her in since we knew she has a MRSA and her ear was draining again, and she had a temp 97.1 no fever so Happy and busy and smart, she doesn't talk much and I think her throat and ears are part of that plus her sisters talk for her.  I am amazed at how well she has grown and developed and the funny crazy girl she is.  I also feel bad that she has had to go through all these things.  No parent wants to see their child hurt sick or in pain and it seems that is all she has had.  I know things could be much worse and she could have more problems.  I am greatful that they are all things that can be treated and or cured  We love her and can not wait to see who she grows to be and how different she will be where we get her issues taken care of.
        So here are a few facts about why we are doing it now, 16 or so Strep tests all negitive, 6 plus ear infections 2 surgeries 7 months and 11 months 1 MRSA and more antibiotics then  I can count 

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