Behind the Scenes

Monday when we went to the lab I took all six kids (I know, crazy). But after they were done with the blood draw this WONDERFUL technician showed the kids how she prepares the slides to do a blood count. She told them she would have loved to take them back to look through a microscope with her except there were too many infectious diseases in the back.

Check out the video of the slide prep!

Oops

When I was recording Ada's protein and meds today I realized that we missed yesterday's prednisone. We got the other meds taken, but she usually takes the pred with lunch and we apparently missed it. Since we are on every other day she took it today when we got home from the MD visit.

Something that has helped us keep track of whether or not she has taken her meds is one of those weekly pill packets that your grandparents use to set out their meds each day. It's nice because if I can't tell if I didn't get her meds or if I just failed to record them, we can look in 5h3 weekly med dispenser to see if she has taken that days meds.

Neph Visit

Had our visit today. Ada actually got them a pee sample today, Yeah! And since Aunt C had an appointment with her Docs that same day she met up with us to go to our appointment.

They ran the basic vitals, weight, BP, and listened to her body. Since it was just before lunch they heard plenty from her stomach :-)

The Nurse Practitioner told us that Ada's white blood cell count was down, but not enough to be concerned with at this point, and that they would give us a call if it did drop too much. Otherwise it looked like she was doing well and we could come back in a month.

The Neph dropped in to take a quick look at Ada and then we were on our way.

Negative - Yeah!

It was Negative this morning. Good, Good, Good.

Bad Urine Dip?

Todays dip was a 1+. I'm hoping it was just a bad sample since it took me till later in the day to get a read off of it. Or maybe something else has caused a temporary bump. We won't panic, just watching a little closer and hoping for a more 'yellow' stick tomorrow. We'll let you know.

Finished 30's

Yeah! We have completed the course of 30mg pred (every other day) without a rise in protein. Today is a day off, and then we start up at 25 mg pred. We haven't been there in a while, so this is good news. Hopefully, with the help of the cytoxan, we can keep on stepping down.

We sure hope all our other NS friends our there are doing well and responding to meds and avoiding relapses. We keep you in our prayers and think of you.

6 months

We have now been "friends" with NS for 6 months. It has been an interesting journey, not entirely a bad one.

We have learned a lot, about NS, kidneys, and ourselves as individuals.

Ada has been unable to get steroid free, so she is currently doing a Cytoxan course (8 week). Once her proteins dropped she has not even had a trace of protein. We are half way through the course this week. She has not had any side-effect problems from the cytoxan that we are aware of.

We are excited at the prospect of gettting her off the prednisone. She has gained a little weight from the prednisone, and her face has the puffy tell tell signs, but otherwise she is healthy and happy. She will have a check in with the Nephrologist next week to confirm that all is going well.

It was interesting to learn that our new family practitioner did an extensive study of the side effects of cytoxan as part of his medical school. He asks about her any time someone from the family comes in.

Unexpected Silver Linings

The saying is that "Every Dark Cloud has a Silver Lining". Would you believe it, we keep finding additional silver linings that make the cloud appear less dark?

A few we have already discovered include; a wonderful community of supportive people, increased faith, increased knowledge, and more.

Another we just discovered is increased health?!? We have to do a health evaluation every year at Dad's work, which determines how much we pay for medical insurance. We are rated on several health indicators based on BMI and blood labs. Points are allocated for each item with 100 points being given for results in the "top" of each catagory.

We usually come in right around 90 pts. Dad was really stressing the tests this year because they have tightened down each financial bracket and he was worried we would end up paying more. Lo and behold when we got his results back we were shocked to see that he had received the maximum 100 points.

The only thing we can atribute this to is a change in diet, the result of Ada's "low sodium" requirements. To go Low Sodium you really have to cut out most processed foods, which also reduces fats, preservatives, and other dietary "no no's". I didn't think it had made that much difference, but appearantly it does.

P.S. I got a 100 pts too, but only because of a Dr waver. Having my blood labs done 3 days post-partum my lab results were way out of wack, and of course my BMI was way off too :-)

So Far So Good

It's only been a couple days into the step down, but so far all protein tests have been completely negative. It's nice to not even have "trace" showing up yet.

Ada is tolerating the medications well and has not been complaining about stomach ache. I'm glad we have her on previcid (or whatever equivelent it is the insurance allows). I wouldn't have thought to ask the Dr about something for her stomach if one of the NS mothers hadn't asked me what Ada was using for stomach upset. So to you NS Moms out there - Thank you for being connected with me!!

She is also tollerating the blood tests. She has discovered that some "pokers" are better than others at finding the right spot to insert the needle. Of course the colorful arm wraps and stickers afterwards help soften the 'poke'.