Friday, January 6, 2017

Just An Update

Well, I had been waiting since last May to post anything.  I wanted to get some more information and definitive answers, but every test ends up giving us more questions than answers.  I don't like to post too much about Olivia's health since she's 9 years old now. . .you know. . .to give her some privacy.  But, we could always use the prayers. 

Last May, Olivia had blood in her urine.  A lot.  Since then, she has had multiple doctor visits, blood draws, countless urine samples, visits to a nephrologist and urologist and endocrinologist, ultrasounds, x rays and a bladder scope, etc.  We still don't know why there continues to be blood.  Sometimes it is just microscopic, but many times it is visible blood.  Thankfully, she hasn't had any pain except for one early morning trip to the ER where the pain subsided.  Not a single urinary tract infection.  Sometimes there is just blood, sometimes there is also protein or ketones.  The urologist has basically ruled out any urinary tract or bladder problem and says that the problem most likely originates in the kidneys.  There is possibly damage to the filters of the kidneys and its unable to filter out the blood, protein, etc.  We discovered over Christmas that her left kidney is small and hasn't grown any since this past summer.  But, again, we don't know what that means.   

She has also seemed to fall off her growth curve this past year and, although she has always been small and never over the 3rd percentile, she is now below the 1st.  They did a bone age study which showed her adult height would be a few inches below 5 ft, whereas genetically she should reach 5 ft 3 inches.  So, she went to an endocrinologist at Children's Mercy who seemed certain that she has a growth hormone deficiency.  But, she passed her growth hormone stimulation test with flying colors (always the over achiever.)  The way her endocrinologist described it. . .her body is making enough growth hormone, but something is inhibiting it and preventing her body from using it.  I asked whether kidney issues could be related and she said that kidney disorders can definitely affect growth.  So, I do think the two issues are related.  But, no one can figure out why or how. 

The next step would be genetic testing (already tested negative for Turner's) but our insurance denied it.  So, now we are looking into another lab with a genetic counselor and waiting to see if we need to do an appeal.  We go back to the nephrologist in February, but it sounds like the next thing he wants to do is a kidney biopsy which I don't want to do.  And we wait and wait and wait.  Who would have thought a single symptom's cause would be so hard to find!  We are still looking for answers and praying the cause is simple and easy to treat.  The past 9 months or so have been so stressful for me.  On top of it, I went back to work last month. . .part of me wanted to, but part of me had to.  Medical bills have just been killing us lately and it's been hard to watch all that we've worked for go to pay medical bills.  And, we had mold in the girl's bedrooms which cost a pretty penny to repair.  So, I'd say 2016 wasn't the best of years.

I look ahead to 2017 with hopes of happy and healthy days ahead.  Please continue to surround Olivia with your prayers.  I know all of the tests haven't been easy on her.  Everything kind of culminated this past year and we need some smooth sailing ahead.

Monday, January 2, 2017