Sadie update

For those of you who are asking about our little Sadie, here is the latest update. We had our appointment with the endocrinologist a few weeks ago. He is the one who has re-ordered blood work from the Mayo Clinic to check Sadie's levels of Vasopressin in her blood again. The last time they checked this hormone, they sent the blood work to Quebec. The countries' leading expert on Diabetes Insipidus runs his clinic there and they run that test quite frequently. Vasopressin is the hormone responsible for telling your kidneys to conserve water. When they tested Sadie, that hormone was "undetectable" in her blood. Her body was/is not conserving water on it's own. When she drinks, it goes straight out. That was why she was constantly thirsty and terribly dry with cracked feet, dry hands, chapped lips and often experiencing potty trouble when doctors advised restricting her fluids down to "only" 2 litres from her regular 6 or more litres of water/day. She was trying desperately to keep up to her body's demands for hydration, and we were thwarting her. I kept trying to convince the doctors that there was something else going on, but to no avail. The doctors were baffled as they were certain that it was *not* Diabetes Insipidus. She was concentrating and conserving *some* water which is what we saw during the "Water Deprivation Test"... but her numbers never did get as high as they should have, even after administration of the synthetic version of the hormone when the test was over. After months of torture and frustration at feeling like the doctors would not listen to us, we got a call that those first tests came back showing that her blood showed no hormone! (finally, scientific proof that something was physically going on!...relief!) Also the MRI was suspect. As of today, we are continuing to adjust the dose of DDAVP (Desmopressin, which is the synthetic hormone version of Vasopressin) It is in the form of a nasal spray but because she is so young, we use a tiny tube which she inserts up her nose. It has the bit of hormone in the tube. I blow and Sadie sniffs, and "voila" relief. So far it has been a LIFE SAVER. When the hormone *does* wear out in the evening though, she becomes very thirsty and needing a potty until her evening dose, so we are increasing her morning dose by an eensy weensy bit (with the guidance of her nurse) and hopefully that will make the "thirsty" time a little shorter. This has required frequent blood work. :( As is everything else in life, this is another balancing act. Finding the right dose and the best level of relief for Sadie while still allowing her body to function as normally on its own as possible. Her follow-up MRI will be in November. The doctor advised me to read up on certain specific "possibilities" while at the same time telling me that he is *sure* that's not what it is... Not sure why they do that. Why fill my mind with nightmares if you don't need to?... i have enough possible nightmare scenarios on my own. Anyways, that's where we're at right now...waiting on God.