IN the mean time we still have doctor appointments, treatments, therapies and school to attend as well.
Had Emily's kidney follow up appointment on Monday. The good news it that the medicine to keep her protein spilling from increasing seems to be doing it's job. So the question is then why is she spilling protein from her daddy's 11 year old transplanted kidney? The kidney is older and it could be beginning signs or it could be reflux of function or more unlikely, yet who knows with Emily and #SIOD, it could be the FSGS presenting again. So we continue to monitor with labs and urine cultures throughout the year.
As usual, Emily needs to DRINK MORE WATER! Those following us awhile know this is a challenge for Emily and she gets fluids at night via her G-Button to supplement, yet she still needs to drink more.
Tomorrow Emily has her every 21 day infusion for IVIG followed by her quarterly pamidronate infusion. It will be a long day for her.
We are super excited for our Farm Run though and we are so thankful to our many sponsors, volunteers and registered runners and walkers! You all are making a difference for SIOD research!
Here is the link as there is still time to sign up! https://buff.ly/2JwEWxW
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