Emotional roller coaster

The walk approaches. Please join us if you are available. Http://tinyurl.com/loganpkd

This week has been tough. I began doing more research on kidney transplants and found out children with Logan's disease are twice as likely to die from rejection than those who get transplants for other reasons. Turns out the disease is prone to bacteria. With that said I couldn't bring myself to look up the actual percentage yet. Even a low number seems too scary. We bought a blood pressure cuff and stethoscope to start monitoring Logan's blood pressure at home. I still don't know how to use it.

On a much more positive note, one of my coworkers organized a donation fund across my entire department and raised a large pool of money in honor of Logan. I love Kroger! My teammates genuinely seem to care. Logan's daycare/preschool, Goddard in mason, is doing a basket fundraiser the week before the walk. The director of the school switched her vacation days to ensure she would be back in time. Currently there are six teachers and their families joining us on the walk. Again I am dumbfounded by the overwhelming support. Finally, Westshore Pizza, wants to do a donation drive for Logan where a percentage of every pizza sold on a specific day would go to the foundation.

I have been bipolar thIs week. My family is so fortunate to have such wonderful people looking out for us, lending an ear and open arms.

Logan's third doctor's appt

We had Logan's third doctor's appt today.  His bloodpressure has dropped but only slightly.  It is still high.  The doctor recommended we purchase our own blood pressure cuff and start monitoring ourselves. We asked if the drop in blood pressure would slow the growth of the cysts and the doctor said the two are completely unrelated. The amount of blood in his urine increased slightly but again the doctor didn't seem concerned about it.We are extending the next doctor's appt two months out. In two months blood work will be done again to check function as well as blood pressure.  Two months after that we will have a full abdomenal ultrasound to check the size of his kidneys and see if the cysts have spread to other organs. If they have spread it will be an indicator that Logan has the dominant form of the disease which isn't as aggressive.  However, our doctor said he was 93% certain it was the recessive form at the first visist.

We have spoken to some of you about a private fund for Logan in the event a kidney transplant would be needed.  The doctor explained that Medicare will kick in and take care of whatever our insurance doesn't in the event of surgery.  Dave and I need to do more research on this but it was explained to us that PKD is a special disease that Medicare offsets funding.  Who knew?

Logan seems to be in great spirits.  He is growing well and a few friends have said "his belly looks smaller". He has only complained about his belly a few times in the last month.  He has no problems wrestling with Ethan and jumping on daddy relentlessly.  Typical two year old.

Dave attended the PKD Local Chapter meeting to discuss the walk held on September 23rd. The support from family and friends has been phenomenal.  We shocked the chapter group with the number of walkers we have estimated based on word of mouth in addition to those who have already signed up. We are so fortunate to have so many care about our family.  If you are interested in joining the team please do not hesitate. http://tinyurl.com/loganpkd

Special thanks to my sister, April, who created custom racing bibs for those who will walk with us.