tag:blogger.com,1999:blog-15089781738503142622012-02-03T11:55:30.000-07:00I created this blog when my 6 year old daughter was diagnosed with Nephrotic Syndrome (NS). As an uncommon and difficult to understand condition I wanted a journal, along with a way to let family know how she was doing, and a way to connect with others experiencing the same thing. This blog chronicals the events, emotions, and more she and we as a family went through. The initial episode begins in March 2008. On the side are pictures as well as links to sites I found helpful.MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.comBlogger1151100tag:blogger.com,1999:blog-1508978173850314262.post-16968726243348167972012-01-27T09:48:00.006-07:002012-01-27T10:05:16.444-07:00

(always a smile!)Although no news is good news, I thought I would share a little about how Ada is doing.She went off prednisone on Thanksgiving Day 2011 and has been doing well.She tolerates the prednisone pretty well, but this last time that insatiable appatite took over and she gained some excess weight. I'm pretty sure she will work it off in normal play, but I am trying to help her retrain

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-66255089349017554272011-12-09T15:56:00.002-07:002011-12-09T15:59:21.316-07:00

Thanksgiving Day we completed the weaning process off of prednisone. 2 weeks now and we are protein free. I think the Dr made a good call to treat her as if we were starting from the beginning. Do I expect her to relapse? Honestly, yes, I think it will happen again, but I'm hoping we'll see a good year before it does happen.Again, the expectation is that while she will relapse they will

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-67745997403703637812011-07-19T22:35:00.002-06:002011-07-19T22:48:57.922-06:00

The adventure continues. . .We were sailing through things pretty good. She weened off the prenesone and was protein free again. We were now testing weekly and I was glad because we were headed to a weeklong woodbadge and family camp and I didn't want to mess with pee sticks and dietary concerns.So what happened :-)A couple week before we headed to camp she swelled up like the pillsbury dough

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-91654304624822239752011-03-10T15:08:00.001-07:002011-03-10T15:13:29.001-07:00

well - it's been a while. Ada went a year and a half without any problems, then last summer she had a relapse. She did a run of prednisone and was OK for another 4 months. At the first of the year she did another course of prednisone, but shortly after she went off she has relapsed again. She is going back on prednisone, a higher dose this time, with a quicker taper. We'll cross our fingers

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-39764459895065768752010-07-20T12:45:00.002-06:002010-07-20T12:51:55.702-06:00

After over a year and a half we now have an official relapse. At the end of June her proteins spiked, but they came back down on their own, which is great. But early July they went back up again and have stabilized at a 3 now for a couple of weeks.Due to a new baby coming and an unexpected family funeral, I had postponed notifying the clinic, hoping she would resolve on her own. She was not

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com4tag:blogger.com,1999:blog-1508978173850314262.post-69304052319784416322010-06-17T12:21:00.000-06:002010-06-17T12:27:05.756-06:00

Looks like Ada is back on the ride. A month ago she was looking 'funny' so I had her do a test (she has been clear for so long that we were testing about every other week or so, especially since I was running out of test strips). She tested at a 4.It was going into the weekend so we just ordered new strips, limited the salts, and watched her. After a couple of days the numbers started going

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-71900080787801909242010-04-23T16:08:00.002-06:002010-04-23T16:10:49.261-06:00

The other day Morg wondered if Ada was puffing up, her eyes looked a little funny. So we did a dip stick test (I'm almost out of those guys again). Trace. She looks good today and her sticks still say trace. trace is good. Happy active child. A little short, but that could be genetics as much as the prednisone.

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-86661573426018310492010-03-10T22:21:00.002-07:002010-03-10T22:27:53.564-07:00

So Ada is back in auto-pilot.After a couple days of 1 or 2 she shot up to a 3+ for a couple of days. But I also noticed her urine was very dark, brownish. I didn't know if that was her being dehydrated (has she been drinking much lately - I haven't a clue) or were more serious things going on?So after consulting with our family Dr we decided to push fluids (nothing drastic, just making sure she

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-59434534421563790542010-02-23T10:28:00.003-07:002010-02-23T10:37:30.686-07:00

So, of course, Ada did a pee check last night after I responded to a comment the other day from someone asking how many times Ada had relapsed since her cytoxan and the stick was dark, a 3+. I decided not to panic, she has been running trace with an occasional 1 and the clinic said she was fine as long as she didn't stay at a 1 or 2 too long or spike to a 3/4.So we checked again this morning

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-31355513208358349902010-01-13T11:58:00.003-07:002010-01-13T12:00:38.115-07:00

Talk to the clinic (well, left phone messages back and forth). The good new is that as far as they are concerned trace is as good as negative, so as long as her 1s are occasional and she doesn't spike above a 2 then we can just keep an eye on her. No swelling or any other problems. I'm glad we don't have to worry about prednesone or anything else like that. So on with a normal life, knock on

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-21177915438787205392010-01-08T20:31:00.001-07:002010-01-08T20:33:06.989-07:00

So Ada continues to test trace, 1, trace, more than 1 but not 2, trace, nothing high, but not negative either. I meant to call the clinic, but we just kept going and I never got a few minutes with the phone. Do I worry, or just keep an eye out? Hopefully I can get ahold of the clinic next week.

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-78880426512363559752009-11-23T19:09:00.001-07:002009-11-23T19:09:56.798-07:00

Pee tests are getting old. She is stuck at trace, with an occational day or two bump up to a 1+, but never a negative. So what does that mean? I don't know. I guess I ought to call the nephrotic center and see if that is acceptable, or if we should be trying to get her down to neg. Otherwise, she is a happy healthy girl, looking forward to her first dance review and a normal Thanksgiving

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-78864536464133575032009-11-07T08:30:00.002-07:002009-11-07T08:30:57.349-07:00

2 consecutive days of trace. We're on the right path. Fingers crossed, moving forward. Yay!

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-19658263300081362592009-11-06T09:55:00.004-07:002009-11-06T10:06:20.461-07:00

So we are testing daily. Some days the stick is a little lighter, almost yellow (trace) and we cheer and hope. But the next day the stick is that ominous green (1+) and we sigh, "Oh, well. At least it isn't blue (4+)."Anyway, Life is good. She isn't swelling, hasn't been sick, and continues to bounce around with enthusiasm for life.

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-90583252491091519682009-10-31T20:54:00.002-06:002009-10-31T20:58:34.455-06:00

Well, after 2 weeks of leaking proteins we contacted our nurse at the Nephrotic Center. Gave her the run-down. Leaking kidneys at 1+ for at least 2 weeks, no illnesses, no swelling, otherwise healthy. At this point there isn't really anything to worry about, just wait and watch. I can do that.Heard another little friend had also relapsed recently after having the summer med free (who had also

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-51602183763767986232009-10-27T20:26:00.003-06:002009-10-27T20:28:07.953-06:00

Still not sure if it is trace or 1+ (30); So that's good news because it is looking lighter than a couple days ago. Maybe she can beat this on her own this time. Hugs all around.Dayna

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-61536057757649148922009-10-26T21:18:00.002-06:002009-10-26T21:24:53.689-06:00

Reading those albustix (pee sticks) can be a little tricky. It's usually pretty clear if you are off either end (neg or 2000+), but in the middle it is open to interpretation.When reading the sticks I will think, "Well, it looks darker than trace, but it definitely isn't 300, so even though it isn't a perfect match it must be 30" I find myself trying to decide between two levels and just make a

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-55039097410104223852009-10-21T09:45:00.004-06:002009-10-21T09:55:59.827-06:00

Right after I posted the last update, celebrating a year without meds or protein, A random urine test indicated a slight rise in proteins. Over the last year checks varied between neg and trace, normal for most people. So instead of daily checks we were able to just do occasional tests, usually every other week or so.This last week the test came back slightly elevated. Not enough to push a

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-59084979323243153802009-10-15T19:14:00.003-06:002009-10-15T19:16:39.557-06:00

Ada has gone 1 year without any medication or protein spillage. This is great news for her and for us. The flu has hit our house, but so far she hasn't been affected by it. We'll keep checking proteins, but hopefully even if she gets sick it won't knock her kidneys off kilter and she can continue her progress.Our best wishes to those who are still battling each day.

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-53709311771642755692009-06-10T12:23:00.003-06:002009-06-10T12:27:55.634-06:00

Just thought I would post an update.To date Ada has not relapsed since she finished her cytoxan course in October. She has lost all retained fluid and does not spill proteins (we still test about every other week and during illness).Her level of activity is as high as it ever was, but not as spastic as she was on prednisone.Just for proof of how little her life is affected, this was her last

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-65670121661797389672009-04-30T21:37:00.002-06:002009-04-30T21:47:43.134-06:00

We saw the Nephrologist and his team last week. Ada bounced in and was in a room before I finished filling out the paperwork again. Her Nurse Practitioner came in and interviewed her, Ada gave her a picture she had drawn, and chatted.The nephrologist came in and was happy to hear that she has been off all meds for 6 mo. without a relapse. He said hopefully this is over but, not to be

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-34742007148536396312009-04-04T18:07:00.003-06:002009-04-04T18:13:33.059-06:00

It's hard to believe, but in a couple of weeks we will reach our 6 month mark. 6 months since she went off cytoxan, 6 months since she has taken any prednisone, and 6 months without her kidneys spilling proteins. All this in spite of colds and allergies (the usual suspected triggers.) We have much to be greatful for.

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com4tag:blogger.com,1999:blog-1508978173850314262.post-56690382060960675412009-01-26T16:20:00.001-07:002009-01-26T16:26:30.668-07:00

Navigated a cold without relapse. Yeah!

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com4tag:blogger.com,1999:blog-1508978173850314262.post-11359944618419914552009-01-07T15:55:00.003-07:002009-01-07T16:08:49.138-07:00

Thanks for dropping in and checking on us. Ada is doing her pee tests once a week, more or less. We sometimes forget in the morning and then don't get around to it until the next day or two. We maintain a lower sodium menu, but not anything like when she was leaking proteins. She is now almost 3 months protein free without the aid of any medication, and the longer she is in remission the less

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com3tag:blogger.com,1999:blog-1508978173850314262.post-28540179190871590152008-12-15T13:36:00.002-07:002008-12-15T13:45:12.639-07:00

Today marks 2 months being prednisone and protien free. The cytoxan is doing its job.That first picture is from her last relapse in Aug. The other is her current school pic from Nov. She is certainly doing well. Thank you for all the extra prayers in her behalf. Hopefully she won't relapse, but we'll keep you posted either way.

MommaBearhttp://www.blogger.com/profile/14728375454018023766noreply@blogger.com5tag:blogger.com,1999:blog-1508978173850314262.post-42584422338140379292008-11-17T14:22:00.003-07:002008-11-17T14:23:52.321-07:00

Today makes a full month that Ada has been protein free without the aid of prednisone or other medications. Sending our heart felt prayers to those who are in the middle of a relapse.

mommabearnoreply@blogger.com3tag:blogger.com,1999:blog-1508978173850314262.post-55306245981875060222008-11-07T19:38:00.002-07:002008-11-07T19:43:37.097-07:00

In spite of the 'flu' yesterday Ada's kidneys are holding in there and protein is at trace. That's a good sign. Thanks for prayers. In all honesty, we expect there will be an occational relaps, but statistically she should respond better to the prednisone now that she has had a cytoxan course. But it would be great if she never had to deal with this again.For now our instructions are to test

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-24031083976542363632008-11-06T08:07:00.005-07:002008-11-06T09:22:32.358-07:00

Ada has been doing great, no protein spills. Today at breakfast she vomited, likely a stomach bug that is going around and has kept her from play dates with friends (hopefully of the 24 hr variety). So now we'll see just how effective the cytoxan is. Wish her luck.

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-51165804554567355612008-11-01T10:49:00.001-06:002008-11-01T10:52:14.529-06:00

The great thing about NS, is although it can be a frustrating disease, as long as it is being treated it doesn't keep kids from being kids.

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-81721290687048326232008-10-31T13:19:00.002-06:002008-10-31T13:21:35.745-06:00

I'm always on the lookout for information about Nephrotic Syndrome (NS) and especially sites that share the down to earth experiences. Here is a great site if you want so see what another child's experience has been.http://kid-neydisease.blogspot.com/

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-35288889581229716062008-10-28T10:13:00.002-06:002008-10-28T10:14:01.908-06:00

As of Monday we have been 1 week without any meds and Ada continues to be protein free.

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-82462412089961124102008-10-21T18:33:00.002-06:002008-10-21T18:38:30.966-06:00

Ada took her last Cytoxan and prednisone 3 days ago on Saturday. (She is still taking prilosec for a couple more weeks to make sure her stomach recovers from the prednisone.)As of today she is testing negative for proteins. Hurray!! Here's hoping that Cytoxan did the trick. The Neph said to bring her back in 6 mo for a followup. Hopefully we won't see him before that. We are suppose to check

mommabearnoreply@blogger.com3tag:blogger.com,1999:blog-1508978173850314262.post-88769301847763356992008-10-16T17:58:00.011-06:002008-10-16T18:25:19.832-06:00

This is the end of the Cytoxan treatment. Ada has doen very well on it and we have her down to a maintenance dose of prednisone (5mg every other day), Saterday she will take her last dose of both medications, and if all goes well she will stay protien free. She will go back for a check up in 6 mo. because she has been on the Cytoxan.Just for fun we thought we would take you along on a visit. I

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-81091395138086408592008-10-10T09:38:00.002-06:002008-10-10T09:50:14.179-06:00

- warning: frank discussion of bodily functions -I called Ada's NP and we talked about just what sypmtoms she was experiencing, how long etc. She asked if Ada had been having regular bowel movements. (OK, I need to start paying attention to that because medical people are always asking about that :-))Anyway, I didn't think she had been real regular, but wasn't sure. Her NP suggested that she

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-48083359493395847742008-10-09T09:46:00.002-06:002008-10-09T09:52:43.387-06:00

For the last two days Ada has not been feeling well. She still has her cold with stuffy nose etc, but in the morning and evening she complains of her stomach hurting and feeling like she needs to throw up, but never does. She can get distracted from how she is feeling during the day and will go play with friends for a while, then comes in and lays around the house curled up in a ball, changing

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-73995695270726057752008-10-05T17:52:00.001-06:002008-10-05T17:52:21.765-06:00

How do I know she has a cold instead of just allergies? She blew in my face and now baby and I know exactly what she is going through :-) It doesn't seem to be knocking her down too much. She doesn't sleep, and complains of her stomach hurting, but mostly she just hangs on me and goes through boxes of tissue. Proteins are staying at trace/negative. So hopefully she will knock this cold before she

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-36950634519609858672008-10-01T21:19:00.003-06:002008-10-01T21:23:47.874-06:00

Actually down to 10mg prednisone. This is the lowest she has ever been on, thanks to the Cytoxan. She currently has a cold, which I think has caused her to have some trace protein readings (which is as good as negative in following NS), but it doesn't seem to be slowing her down too much so hopefully a little extra fluids and homemade soups will have her feeling back to normal soon.She has been

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-45512375101279510462008-09-24T15:14:00.003-06:002008-09-24T15:32:52.768-06:00

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!

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-74357151867305902302008-09-19T16:57:00.005-06:002008-09-19T17:13:01.534-06:00

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

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-78445640425996895902008-09-19T16:57:00.002-06:002008-09-19T17:02:59.451-06:00

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

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-84723899582543363552008-09-18T08:26:00.002-06:002008-09-18T08:26:42.263-06:00

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

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-12640790450131789422008-09-17T18:46:00.002-06:002008-09-17T18:50:39.260-06:00

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.

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-532749321186335272008-09-13T13:43:00.002-06:002008-09-13T13:46:18.337-06:00

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

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-14930738367259793252008-09-10T08:28:00.004-06:002008-09-10T08:44:41.922-06:00

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

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-10350963780883621602008-09-10T07:21:00.003-06:002008-09-10T07:34:32.622-06:00

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

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-34674930167442148212008-09-03T13:47:00.002-06:002008-09-03T13:50:58.564-06:00

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

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-78862889657925022952008-08-31T16:17:00.002-06:002008-08-31T16:21:50.597-06:00

We have now had a full week of neg/trace proteins with the help of Cytoxan. Today we did our first prednisone reduction in the step down process. Yeah! We will pray all continues to go as it is suppose to.Today Ada told me that one of her friends in her church class is having some heart and lung problems (I got all the details a 7 yo can remember). Her friend wears a little monitor on her hip

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-7240077883672636462008-08-27T08:00:00.002-06:002008-08-27T08:04:34.630-06:00

We have another negative. So we are tracking right. Down another 2 lbs today, face returning to 'normal' (definitely have the prednisone 'moonface') and ankles are re-appearing. She is also getting her energy back and isn't feeling so sluggish.The previcid (or whatever equivelent the insurance is approving) seems to be working and she doesn't complain about stomach aches anymore - except that

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-61821406966416175392008-08-26T09:19:00.003-06:002008-08-26T09:21:57.276-06:00

Once again, no proteins in the urine. And 5 less pounds on the scale as well. (so yes, we were looking at fluid gain, not fat gain from pred.) I will be keeping her weight recorded regularly now so I can definitively say whether she is experiencing weight gain or fluid gain.Little brother woke up with a fever this morning. Hope it's just molars coming in (non-contagious) as opposed to one of

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-24558423767428255172008-08-25T08:40:00.002-06:002008-08-25T08:43:28.136-06:00

It's been a long time since we have seen that. We are thrilled. (I think Dad could do a happy dance he is so relieved to have those proteins back down - Dad really loves his kids and has been very worried).I don't know if you saw the comment from our little friend Gray. He's 5 and has been praying for Ada. I don't know that there is much stronger medicine than the prayers of a child. Thank

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-17015071585513093012008-08-24T07:58:00.002-06:002008-08-24T08:00:56.836-06:00

"this morning Ada was definately trace. I was suprised . Have a great time at church. - N"I was so happy and relieved to get this e-mail from Sis this morning. The meds are working!! Now that we are pointed in the right direction we hope to be able to complete this trip. Thank you so much for the extra prayers in her behalf.

mommabearnoreply@blogger.com4tag:blogger.com,1999:blog-1508978173850314262.post-51697198302958618912008-08-23T12:44:00.002-06:002008-08-23T12:51:56.109-06:00

Ada is having fun with her cousins. Sis e-mailed today and said that Ada wanted to call her dip test a 2, but Sis said it was not a 2, probably a 3 as it didn't look like a 4 to her. So maybe we are starting on our way down. We have had some "It's not a 2, but doesn't quite look like a 4" days, but then the next day it is a definite 4. So hears hoping that we can start having more of those,

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-45269397638482685812008-08-22T13:16:00.003-06:002008-08-22T13:27:39.623-06:00

Ada has been on the Cytoxan for now for 4 days, but we have not seen a decrease in the amount of protein she is spilling as yet. We have seen a significant increase in her swelling. She is now carrying between 10 and 15 lbs of extra fluid.We have a lot of unanswered questions right now. How long should it take for the Cytoxan to kick in? How do we best balance the fluids? My understanding is

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-46189980860618883412008-08-18T14:52:00.003-06:002008-08-18T15:23:31.794-06:00

This is Ada with her 'badge of courage'. Today she went in for her first blood draw. Remembering the IV, which they couldn't get on the first try and had to do again, she was terrified.Brave is doing what you have to, even though you are scared and don't want to. We had talked about what needed to be done, and as we waited the tears welled up in her eyes and she began to wimper. She had brought a

mommabearnoreply@blogger.com4tag:blogger.com,1999:blog-1508978173850314262.post-78640048079146963092008-08-16T16:55:00.002-06:002008-08-16T17:02:29.575-06:00

So we get them home from the consult, discuss options and choices, and head to the pharmacy to fill prescriptions.One of the prescriptions she received was for Previcid, to protect her stomach from the damage it is taking from the prednisone. (she has been having a lot of stomach upset and complaining frequently of stomach pain)The insurance denied the prescription and recommended another drug

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-21376173637753746872008-08-16T16:28:00.003-06:002008-08-16T18:32:14.596-06:00

Ada is no longer responding to steroid treatment, so additional measures are now needed. Each has it's benefits, and a slew of side effects, to be considered. (At this point there has not been any discussion about the need for a kidney biopsy)Thankful for all blessings - Ada's Aunt C:-), who also suffers from an auto-immune disease & happens to be a nurse, was up at the hospital for some

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-36884756449109806542008-08-15T12:43:00.002-06:002008-08-15T12:53:19.791-06:00

Ada & Dad headed down to the hospital to meet with the Nephrologist. I really wanted to be there, but physically I was not up to the trip.So last night was spent briefing Dad on all the details of the log book I keep, where to find information he may need, Making a list of questions, and reviewing together any details from the last week - which Dad is more on top of than I am at the moment. At

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-57531242624838654502008-08-12T21:20:00.004-06:002008-08-12T21:29:00.151-06:00

This is my new little brother. He was due this Saturday, so Mom was worried about how we would make my appointment at the University Hospital on Friday. Heavenly Father has taken care of Everything. Baby brother arrived just after midnight on Monday Morning, everything went perfect.Since baby brother is now here we can make arrangements for my Dr appointments and not worry about Mom having him in

mommabearnoreply@blogger.com3tag:blogger.com,1999:blog-1508978173850314262.post-57254529028151354092008-08-09T18:22:00.001-06:002008-08-09T18:23:22.439-06:00

An NS friend asked me how long it takes for Ada to respond to increased prednisone. (Most patients respond within 1 to 2 weeks, but it can take as long as a month.)After the initial presentation it took 7 days before a drop was noted, and another day before she held at trace to negative.After the first relapse she responded to the increased prednisone within 5 days, and was trace to neg within 7

mommabearnoreply@blogger.com3tag:blogger.com,1999:blog-1508978173850314262.post-81420387867623206512008-08-08T19:20:00.002-06:002008-08-08T19:28:14.932-06:00

Prednisone increased to full dose again. I missed the call back from the clinic, but they left a message asking me to call Monday to schedule an appointment to discuss options with the Dr. That's not an exciting prospective, but since her kidneys are refusing to be cooperative, that's what we need to do.They wanted to work us in next Friday, but that's the day before my due date, so I'm not

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-53566947170761482682008-08-08T14:39:00.002-06:002008-08-08T14:46:05.641-06:00

Ada began spilling proteins on Monday. By wednesday she was spilling at a 4+ and has not reverted on her own. I called the clinic today and spoke with the nurse practitioner. I gave her the timeline and dosages and urine tests. She will consult with Ada's Nephrologist and get back with me. Between the Initial presentation and first relapse was 2 1/2 months. Between the 1st and 2nd relapse

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-165977563571552562008-08-06T08:08:00.002-06:002008-08-06T08:11:28.980-06:00

Ada's protein test was 4 this morning. As we finished the test and she read the results I said, "No salt today." She said, "It's a good thing pineapple doesn't have salt, so I can eat that."I love her optimism. It makes things so much easier.We will watch and wait, make sure this is her trend and give the center a call on Friday.

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-42117251795859979752008-08-05T13:11:00.002-06:002008-08-05T13:13:35.958-06:00

Ada is spilling more protein today. She is only at a 2, but we need to change direction and get back to trace and negative. There isn't much we can do to make that happen, it's all up to the kidneys. But we are watching low sodium so that if she does a complete relapse hopefully the swelling can be kept from getting too bad. We'll keep you posted.

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-31297614560948671952008-08-02T11:30:00.004-06:002008-08-02T11:44:52.646-06:00

We're half way through her first step down again, and seems to be doing well. Her proteins fluxuate between neg (0) and 1+, but as long as the 1's are occational and the negatives are the 'norm' then everything is good.So roughly another week of 30 mg prednisone every other day. Then if all goes well we can step down to the next level.In the mean time we continue with life. Ada enjoyed two weeks

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-56835590772115385702008-07-24T19:14:00.003-06:002008-07-24T19:16:11.761-06:00

Ada has tested trace to negative consistently for a week now, so we can begin the taper process again. Tomorrow we will begin 30 mg prednisone Every-Other-Day for 2 weeks. We are glad to be tapering again. Hopefully we can make it a little further in the process this time.

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-44522579471253983682008-07-18T11:14:00.002-06:002008-07-18T11:16:24.982-06:00

Even though it has been a week since Ada responded to the increased medication she continues to have protein leaks up to a one, so we will maintain full dose until she can maintain one week of trace to negative protein leaks. I expect that should be within another week, or at least I hope so. In the mean time she is looking and feeling good and enjoying summer playing with friends.

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-17105539548127354132008-07-15T16:38:00.002-06:002008-07-15T16:41:33.651-06:00

Ada's proteins read negative today. So once she can maintain that (or trace) for a week then we will begin the taper process again to try and wean her off the prednisone. In the mean time, by restricting sodium, she has been able to lose a lot of the fluid she had built up. And her stomach is feeling much better. Yeah!

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-78495006368560135842008-07-11T09:57:00.003-06:002008-07-11T10:03:26.693-06:00

Ada was excited to report this morning that instead of a 4 her urine protein measured at 1. Hurrah, she is responding to the prednisone again. That is always my big fear is that the medicine will quit being effective for her. So we will hope things hold for the weekend. Then I will call the clinic on Monday for instructions.I was asked if her stomach discomfort was due to the prednisone or

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-50875609067898702402008-07-09T14:33:00.003-06:002008-07-09T14:42:02.788-06:00

Although Ada is still spilling lots of protein, at least the swelling is not increasing. She alternates between play and rest, depending on how she is feeling, usually related to how her stomach feels. At night she likes to sleep ont he couch upstairs near us because she gets naseated. When she gets up in the morning she seems to feel a little better.So at this point we are holding steady, not

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-15832029278996729402008-07-07T21:02:00.002-06:002008-07-07T21:14:53.462-06:00

I talked to the Nurse Practitioner who is overseeing Ada's case at the University Hospital. Of course they are not happy to hear that she is swollen. After trying to assess her over the phone (which is difficult to do) I was told that I could bring her down for an appointment to be seen, or I could continue to monitor the symptoms and keep in contact with the clinic. Since all they could really

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-32651603117884745742008-07-05T14:06:00.006-06:002008-07-05T14:25:06.657-06:00

As you can see, Ada has completely relapsed.The protein leakage started Sunday and increased rapidly. By Wednesday she was charting her proteins at 4+, as high as our test sticks monitor. She has also noticed that her urine is foamy - one symptom of leaking proteins.There was no noticeable swelling until Thursday evening. I was looking at her stomach and ankles and thought she might be swelling

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-67293538535813220102008-07-03T11:01:00.002-06:002008-07-03T11:05:00.112-06:00

Today her protein level was at a 4+. She also has been complaining about a mild stomach ache. At this point all we can really do is keep watching. I'm not sure if her stomach ache is linked to the kidney problem, or if it is from the amount of fresh fruit she has been enjoying.Otherwise she looks and acts normal. She has not experienced swelling, which I contribute to her low consumption of

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-49860990715473496362008-07-01T16:22:00.002-06:002008-07-01T16:28:58.234-06:00

The other day Ada started spilling proteins again. Today and yesterday she was at a 3+ (the scale is negative, trace, 1,2,3,&4). She was just coming to the end of her month long treatment of 30 mg prednisone everyotherday and then we were to drop down. So I called the clinic and talked to her case manager.The first question they always ask is if she has been sick and is she swelling.She did

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-78470480283649813952008-06-19T08:39:00.002-06:002008-06-19T08:52:10.823-06:00

Ada's visit went well. As long as she is responding to the prednisone without suffering from side effects they will continue with the current course of medication, even if she is dependent on it. If she stops tolerating the prednisone or quits growing then they will look at switching course of medicine, most likely to Cyclosporine (or Cytoxin?) for a short course to see if that will work. But at

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-46223236211029813282008-06-08T21:27:00.002-06:002008-06-08T21:31:09.705-06:00

Ada's proteins held at trace to negative for a week, so we have begun the taper again. She is now taking 30 mg prednisone every other day. We identify days as "Prednisone days" and "Non-Prednisone days". I don't do this because they are "good days" and "bad days" but because I can check the log and tell Ada what kind of day it is, then she can remind me at lunch time if she has to take

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-5227275013019418892008-06-01T19:33:00.002-06:002008-06-01T19:36:50.804-06:00

Ada's proteins are holding at trace or negative. That is good. She is doing well and very happy, with plenty of energy to burn. She has been complaining of stomach aches in the evening and I have wondered if this could be a sensitivity to the prednisone. I will have to ask the Dr when we see him again. She did not swell at all that I noticed this time, thank goodness for our little protein

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-46383638362858409582008-05-28T11:42:00.002-06:002008-05-28T11:45:19.831-06:00

Ada's proteins were recording at a 4 since she spiked. Today they dropped to a 1 (I did the test, so I know it is accurate). So if that holds then we know she is responding to the medication again. If we can get her down to trace/neg for a week then we can begin the taper schedule again. She won't need to stay and the high prednisone dose like she did the first time.Thanks for prayers and

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-88223697880557439002008-05-23T20:09:00.002-06:002008-05-23T20:13:58.560-06:00

Well, Ada has relapsed. But at least with the urine tests we are able to know much sooner and begin treatment before she is all swollen up.So, we go back to a full prednisone dose until she can be trace/negative for a week, then begin the taper schedule again. If at first you don't succeed - try, try again.Interesting to note: On Wed, when we were suppose to call if her protein output wasn't

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-56671085597111160712008-05-20T10:22:00.002-06:002008-05-20T10:25:53.742-06:00

Ada continues to spill proteins without reason (cold, flu, illness). Monday the Nephrologist said to just hold her medication level. They would really like to give her body a chance to respond on it's own without increasing her steroid dosage. So I am to give them a call on Wed and see if they want to give a little more time or if we need to increase her dosage. We continue the low sodium diet

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-26312539838849944642008-05-17T11:01:00.002-06:002008-05-17T11:16:35.766-06:00

Drat! We didn't go the right direction this morning. Ada's proteins were up to a 3+. She hasn't been this high since the first week we started medication clear back in March.Today was suppose to be another step down in her prednisone dosage, but I wasn't comfortable with that since she is headed in the wrong direction. So I called the pediatric nephrologist on call (of course it is the

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-24677690180813904002008-05-16T11:41:00.002-06:002008-05-16T11:46:58.203-06:00

OK, her protein tests for the last two mornings have been holding at a 1+. Hopefully over the weekend it will go back down to trace or neg. My concern is that tomorrow, Saturday, is another step down day for her prednisone. So, no cause for panic yet, just - Holding at 1, praying for a drop, watching for an increase. . . . and waiting, and watching, and hoping, and waiting (how does that song

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-90672444449632104772008-05-15T07:14:00.002-06:002008-05-15T07:23:41.514-06:00

Ada was very worried yesterday when she did her protein test and it was up to a 2+ (it has been holding at neg with an occational trace). Since she didn't get her test done until afternoon I told her not to worry about it and we would just make sure we did the test first thing in the morning and would be extra careful about sodium just in case.(protein leakage tends to increase in normal bodies

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-13279357648605206522008-05-10T10:59:00.002-06:002008-05-10T11:03:00.953-06:00

Stepped Ada down on her prednisone again yesterday, from 25 every other day to 15 every other day. She is getting excited to be done. (crossing fingers and hoping all continues well).Saw the primary care doctor the other day just to do routine exam. Her blood pressure is good, no swelling, or proteins or blood in the urine. Told us we don't need to some back other than normal well child

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-79253123909940617862008-05-06T10:16:00.002-06:002008-05-06T10:39:05.193-06:00

If you read any of the comments to posts in this blog, you will see a few from "Molly's Mum."Through blogs I have met Molly & her Mum. Molly is a beautiful 3 1/2 yr old girl who has been fighting Nephrotic Syndrome for a year now. Her journey has been similar to Ada's, but she leads out a year ahead. Although she responded well to the treatment, she has relapsed a couple of times and is now

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-51268108340922797132008-05-02T07:19:00.002-06:002008-05-02T07:24:16.788-06:00

Yesterday we were able to reduce Ada's prednisone from 30mg every other day to 25 mg every other day. She will only take 4 doses of this and then we will reduce again to the next level, assuming we have no setbacks.A few days ago her protein levels slipped up to a 1+ for the day, but then immediately fell back down to negative and have held there for the las 3 days, so I am learning not to get

mommabearnoreply@blogger.com3tag:blogger.com,1999:blog-1508978173850314262.post-41465612494836122452008-04-26T18:58:00.002-06:002008-04-26T19:01:27.832-06:00

All's good. Still toggles between trace and negative from day to day. I think that is suppose to be pretty normal. Maybe we should have another child track for a week or two and see just what is "normal". Good opportunity to teach the kids about having a "control" in a science experiment. Not that you can "control" anything about Ada :-)

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-74492246993118528242008-04-19T15:23:00.003-06:002008-04-19T15:28:51.857-06:00

Ada has been on 30 mg of prednisone every other day now for 2 weeks without any negative effect. She continues to show only neg or trace proteins. She is active and otherwise healthy, and doing well with schoolwork.I am amazed at the amount of personal responsibility a now 7 year old (happy birthday Ada) can take for their own care. When Grandma and Grandpa took her out shopping for her

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-29725827876564107872008-04-08T14:08:00.002-06:002008-04-08T14:17:33.675-06:00

I thought I would comment on the side effects we have seen in Ada since she has been on Prednisone. The first thing we noticed was the constant hunger. She never feels full and is always hungry. To help I try to keep lots of fruit and veggie snacks around. But she will sneak bread given the chance.The second side effect is an upset stomach. I don't think she was eating as much with the

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-64886126716551539182008-04-06T10:37:00.010-06:002008-04-06T10:58:50.805-06:00

I thought it would be good to show some photos of how Ada is progressing. First, here is a picture showing Ada before, at diagnosis, and 1 month of treatment.click on any of the pictures to see them better.before NS, at diagnosis, 1 month of treatment. On the last picture she looks pretty normal. If you look close along her jaw line you can see some of the visual effects of the prednisone, looks

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-18439700541862008442008-04-05T12:05:00.002-06:002008-04-05T12:12:13.188-06:00

From the beginning I understood that the reason for the low sodium diet was to reduce edima and pressure on her body. So at the visit with the specialist I asked about the need to continue the low sodium diet now that her edema is gone and the protein leakage is controled. This is what I learned.While Ada is on prednisone it will cause her to retain salts and water, which will cause an elevated

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-58218467234544077192008-04-04T19:41:00.002-06:002008-04-04T19:45:42.862-06:00

Ada has started getting muscle spasms in her fingers and toes. Similar to a charley horse, the muscles or tendons or something cramp up, causing the fingers or toes to become stiff and pull in one direction. When they are bad they can be painful up to her elbow or knee.The family Dr suggested it could be a potassium difficiency due to the low sodium diet and suggested just keeping plenty of

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-10343579640077610962008-04-04T19:31:00.002-06:002008-04-04T19:41:25.554-06:00

We just got back from our first follow up with the Nephrologist (kidney specialist) at the University Hospital.Great News. They are thrilled with how quickly she has responded to the medication and continues to have days with negative and trace proteins. We start the weaning process to get her off the medication, which should take until the first of June if all goes well.The Nephrologist said

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-79545693355926723022008-03-31T12:18:00.003-06:002008-03-31T12:19:32.336-06:00

Ada's proteins held at 1 over the weekend, but today, monday, they are back down at a trace. So we just keep monitoring, watching the sodium, and praying that she will continue to improve.

mommabearnoreply@blogger.com2tag:blogger.com,1999:blog-1508978173850314262.post-41988489089345830492008-03-29T11:22:00.002-06:002008-03-29T11:27:16.707-06:00

Ada has been testing negative for proteins for the last week, really encouraging us. But a couple of days ago she crept back up to trace, not a concern; and now is at a 1 (on a Neg, Trace, 1,2,3,4 scale). She does have a cold, so maybe that is just par for the course. At this point we don't need to do anything different unless her proteins stay up for a week, or raise up to a 3 or 4 for a

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-8426106247429738822008-03-29T11:18:00.003-06:002008-03-29T11:22:35.995-06:00

Boy this phrase has new meaning. Every time I turn around it is time to make bread again. I really enjoy making bread; but depending on the homemade bread creates a greater demand than I have had before.I guess I could buy bread for the rest of the family and just make Ada's; but everyone else prefers the homemade bread too - even without the salt.I have read stories of the pioneers, and rising

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-51568972359555303742008-03-22T14:15:00.003-06:002008-03-22T14:24:23.783-06:00

The other day we had a school field trip to the zoo. Because it is a good couple of hours in driving I wanted some snacks for the kids, which Ada would be able to enjoy. Fruits are all good, but they also needed a bread or some kind of carb. All the standards were out, pretzels, crackers, etc. So I sent Dad to the store to find some low sodium snacks.Dad came back from the store with some low

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-49850872638080404472008-03-22T11:20:00.002-06:002008-03-22T11:24:34.622-06:00

Yeah! Today Ada tested negative for protiens. After the first week, when her proteins initially dropped, she tested negative for one day. For the last week she has only been showing a trace of proteins, although yesterday it was a close call between trace and negative. Today it was Negative!! Here's hoping it holds.The other day when we came out of the Drs. with news that her blood pressure

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-55946899635362656102008-03-21T17:50:00.003-06:002009-01-29T08:41:35.342-07:00

Another Dr Appt. Her blood pressure was down closer to what they want to see. It was 110 over something. If I understand right, they want the upper number to be 100 or less, for a child her age, hight, weight, and gender.They also want a pee test to check for blood in the urine; but the last two times she hasn't been able to produce. So they sent home a container for next week so we can

mommabearnoreply@blogger.com1tag:blogger.com,1999:blog-1508978173850314262.post-5678942540367375572008-03-18T13:17:00.002-06:002009-01-29T08:41:35.343-07:00

Ada's Protiens are holting steady at just a trace, which is good. Her edema (swelling) is completely gone, which is also good. And she isn't looking dehydrated today. Unfortuneately, her blood pressure remains high. It's not so high that it needs to be medicated yet, and the best way to treat her high blood pressure at this time is to continue to maintain a low sodium diet. So we are keeping

mommabearnoreply@blogger.com0tag:blogger.com,1999:blog-1508978173850314262.post-4704303493329867272008-03-15T17:40:00.003-06:002009-01-29T08:41:35.343-07:00

Today Ada came to me and said she didn't like how her eyes looked now. They looked pretty sunken and dark. I am hoping it is just part of the adjustment as the syndrome reverses itself and her body tries to find equelibrium again.In looking for more answers I can to this site by another mother of a child with Nephrotic Syndrome. As I read her story I count each blessing since things were so much

mommabearnoreply@blogger.com0