The Coordinated Effort begins....

So my Sarah has something called nephrocalcitosis....which means calcification of the kidneys. Today I sat in amazement as my phone rang and different doctors talked with me about what we will be doing to figure this out. It actually started with the kidney specialist giving me her cell phone number and asking me to call last night. Today I talked to the neurologist and understand what we will be doing to wean Sarah off her anticonvulsant, which may be the culprit in all of this!
The pediatrician has me getting records from one hospital to another in order for ONE doctor to review a history of her renal ultrasounds for a more accurate picture than 3 different docs reading that just year's test. Its fascinating to see it coming together. I have urine samples collected to drop off today prior to another doctor appointment for Sarah that is unrelated but still important.
I do covet prayers as we begin removing the meds from Sarah's body. This will take place over 6 weeks. We've decided to just "see what happens" as opposed to wean off one med while simultaneously introducing a new one. What may happen is increased seizure activity. But maybe not. And we are eager to know our daughter without the side effects of this medication. So pray, pray hard. Pray that Sarah's weaning from anticonvulsants will go well and we will see little to no seizure activity and the end result will be improved kidneys and a little girl free from the side effects of a medication that seems necessary. Pray that she will have freedom from anticonvulsants.

Thanks all!!

Update of sorts....

I apologize blog readers for not updating sooner to the previous post. Sarah's VCUG went as well as could be expected for a test like that and under the circumstances that surround our specific situation. The results were not pleasing. It appears to this doctor that the reflux is worse on both sides....but not significantly worse. After discussion with Sarah's pediatrician, thought, prayer and reflection, it is unlikely that we will subject Sarah to further VCUG tests simply to monitor the progress of what appears to be a relatively stable kidney reflux in Sarah. We do have to follow up with a Pediatric Nephrologist (kidney specialist) and Sarah's appointment with her is tomorrow. Sometimes it can feel like we deal with SO MANY different doctors for really no improvement or concrete answers. So in ways it can be frustrating. But we are going and I have collected years worth of reports from previous VCUGs and kidney ultrasounds. It will be interesting to hear her thoughts.

Of other note.....Sarah has had a TREMENDOUS start to 2010. Her first week back to school was amazing. She did extremely well and really enjoyed herself.
The boys are back to school as well but not as eager as Sarah. Andrew has been busy with basketball. Jacob plugging away with middle school projects. Timothy took it upon himself to cut his own hair last night because it had something sticky in it. (A shower wouldn't have worked???) I've attempted to do damage control but I fear a buzz cut may take place later this afternoon.

Sandor is busy with work and responsibilities and dreaming of a white camero in the spring......

Me, well, I am eager to get back to a regular routine and really enjoyed last week although I genuinely missed having the kids around. This week I have Bible Study with my sister so I am really looking forward to that. Also thinking about planning some fun lunch dates and activities for the few days off I have each month, as opposed to filling them with doctors appointments....which I have a tendency to do. I'm pondering a triathlon for this year to shake things up....something different that still incorporates my love of running.

And I guess that's about it. I've also added several "glimpses" on my other blog and do so apologize for my lack of consistency.

Take care out there!