Wesley’s test strips showed up trace for protein today.  If you don’t know, trace or negative for three days straight defines remission!  Woo hoo!  We are going back up the hill!  (sort of)

Our lives may change yet again next week.  We still don’t know the answer about rituximab.  I emailed the nephrologist this evening, so I am hoping to hear something by tomorrow.

The boy’s eyes look tons better.  Swelling is gone!  Steroids are really kicking in.  They are helping him go into remission fast, but the mood swings are horrendous.  The good news is how fast he always responds to the steroids.  The fast response indicates that this is most likely the milder form of nephrotic syndrome.  Probably minimal change disease.  Minimal change disease is on the lower end of the spectrum of nephrotic syndrome.  It has the best chances of complete remission by the time he is an older child.  Maybe around 11 or 12 years old.

If he weren’t so quick to respond to steroids, we may suspect that he has a more severe form of NS, such as Focal Segmental Glomerulosclerosis (FSGS).  It is a much more severe form of the disease all the way at the other end of the spectrum.  It is way harder to get into remission with FSGS, and usually, because of the extent of damage to the kidneys, will require a transplant down the road.

We haven’t done a biopsy yet for several reasons.  The quick response to the steroids is one of the many.

School was alright today.  The boy’s emotions are like a crazy menopausal woman.  One minute he’s fine, the next minute he is bawling his little eyes out because his feelings got hurt, then the next minute he is ticked off and throwing scissors or something.  Some teacher better be glad I spared her this year!  Steroids are SO bad.

I am determined to stick to our schedule for school, although I can see that it is going to be difficult.  We were interrupted a bunch this morning.  The phone was ringing off the hook.  People were trying to sell me alarm systems.  Brad came home early from work because of the weather.  The guy that delivers the bottled water showed up.  I kept having to do things for my work.  Just little things here and there really threw us off.

Even though this was only Wesley’s second day of school, he already knew what to do first!  I was happy for that.  We are learning how to use the calendar and we sung a little song about the days of the week.  Then, we read his bible story.  Next was Wesley’s favorite: “News Time”  I let him tell me about something important to him, maybe a toy, or something he found outside or any little thing.  It’s like he is giving me a little report.  The rest of the day is spent of regular school things like math, writing, science, reading, etc.

In my mere two days of being a teacher, (don’t know that I am qualified to be called that, but whatever) I have found that 4 hours is the boy’s limit.  That is when the crankiness sets in.  Yesterday, I pushed through it.  Today, I gave him about an hour and a half break and it really helped.  Guess that is what recess is for!  Then we finished.

Tomorrow is work for me.  I hate going to work and leaving my little guy behind but I must say, my one day a week of work is kind of like my getaway.  I always dread going in, but once I am there, its so nice to be a normal person.  It’s easy for my mind to stop worrying so much when I am busy working.

I have heard many of my friends say that they enjoy reading this blog.  One of my dear friend’s coworker even sent Wesley a hand picked bag of adorable little rocks for his collection.  Thanks for the encouragement, my friends!  I hope that I can continue to make it interesting.  Sometimes, I feel like I go on and on and ramble a lot.  Maybe it will get better, maybe it will get worse!  Who knows.  But it is what it is.  This is the life of the Arnett family.  Sometimes boring, other times way more exciting than I have ever planned it to be!

Have a great Friday, everybody!


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