Monday, June 29, 2015

Discharged!


Rachel had her last pediatric rheumatology appointment this afternoon.  She has done so well with her JDM that Dr. R discharged her from her service!  Hooray!  While we really enjoyed having Dr. R as Rachel's physician and we will miss her, we are glad that we (hopefully!) will never see her again.

What does this mean for Rachel now?  Since we don't know how much sun could trigger another episode, we will still be careful using sunscreen and having her wear a hat.  But we are hopeful that Rachel will never be troubled with this disease again.

Praise God from Whom all blessings flow!

Wednesday, September 10, 2014

No More Methotrexate!!


Rachel had a doctor's appointment up in Houston this afternoon.  We thought she had weathered our beach vacation without any problems, but it was nice hearing that the doctor thought so, too.  It's funny that we slathered Rachel with sunscreen, and she wore a hat and a rash guard, but she is still our darkest child!

Two years ago when Rachel was diagnosed with her JDM, we were told that she would be on methotrexate for two years, and we have been counting down the time.  This winter, we were able to stop injecting it subcutaneously and start giving it orally which was wonderful.  Giving a shot to your child has to be the second worst part of being a parent, second only to holding your child down for blood work.  Anyway, it's been two years now, and we get to discontinue it!  Hooray!  Now Rachel is just on one medication, Plaquenil which we plan to continue for another six months.

Dr. R wants to draw blood in about six weeks to make sure she's still doing well off the methotrexate.  And we'll see her again in six months when we'll hopefully discontinue the Plaquenil.  I think the plan then is to see Dr. R again in six months or a year and then stop.

Stop?  Yes, stop!  With Rachel doing so well, it looks like our visits to the pediatric rheumatologist are coming to an end!  Hooray!  Praise the Lord!!

Wednesday, May 14, 2014

Miraculous Healing...Well, Not Exactly


Rachel had an ophthalmologist appointment this morning, and we got some amazing news!  Do you remember her steroid-induced cataracts?  The ones that Dr. G said might get a little smaller but would not go away, and for which she would probably need surgery at some point?

Well, they're still there, but the word Dr. G used to describe them was "minuscule."  MINISCULE!!  He said they are no problem anymore and not to worry about them at all.  Whoohoo!  Dr. G did say that he has seen cataracts decrease like this in children occasionally, but he was still a little surprised.

We hadn't noticed any problems with Rachel's vision, but we also realized that that didn't necessarily mean anything.  We are so happy!

Praise God from Whom all blessings flow!

Tuesday, April 15, 2014

Better and Better!


Rachel had another encouraging appointment today.  According to Dr. R, she looks great (we already knew that!) and is doing great.  Everything is just about as good as it can be.  Basically, if you didn't already know that Rachel has JDM, there is no way to look at her and see it.  Hooray!

Dr. R cleared her to do just about anything, even a trip to the beach.  Of course, there are caveats:  lots of sunscreen and other common sense things to protect her from the sun.

The other good news is that we can start tapering Rachel's methotrexate dose.  As you may recall from her last appointment, we've been able to give it orally instead of subcutaneously, and now we can give a little bit less.  Assuming that Rachel continues to do as well as she has been, we can continue the taper until August when we can stop giving it.  Double hooray!

Once again, we give God all of the glory for how well Rachel is doing.  Without His hand on her, well, we don't want to think about it.


Tuesday, December 10, 2013

As Always -- Good News with the Bad


Rachel had her regularly scheduled check up today with her pediatric rheumatologist.  How is she doing?  Great!  Dr. R thinks today was the best she's seen her.  She commented that Rachel was so "pasty white" at her previous appointments that she almost looked anemic.  But not today.  And I replied that we've stopped putting sunscreen on her everyday as we discussed at Rachel's last appointment.  So Rachel has a little color to her skin now, healthy color.

We also discussed a couple of concerning issues:  Rachel's fingernails and her cataracts.  The problem  with Rachel having cataracts is that part of her brain may not develop like it should.  Part of her brain may not be visually stimulated because she can't see.  I'm making it sound more worrisome that it actually is.  Dr. R was fine with doing nothing right now and having the ophthalmologist follow up in six months.  She agreed with his conservative approach:  keeping an eye on it and not doing surgery yet.

Rachel has also been losing fingernails.  The odd thing is, well, it's all odd really.  There are three fingers on one hand and two on the other that are affected.  And there is a nail underneath the one that falls off.  Apparently, something happened several months ago that caused her nails to stop growing, and they started growing again under the old ones.  It's strange.  But it doesn't hurt, and she's not bothered too much, so we've decided not to be too concerned either.  And now it looks like this is happening with some of her toenails.  I guess, if it's not one thing, it's another.

The good news is that we get to stop giving Rachel her methotrexate subcutaneously!  We get to give it to her by mouth.  Hooray!!  No more shots!!  We even did a happy dance right there in the doctor's office!

Good news and bad news.  Isn't that how it goes?  But it's comforting to know that God is in control, and He hold Rachel securely in His hands.  Nothing, absolutely nothing, can happen to her without His express approval.

Wednesday, November 20, 2013

Vision Test

This picture is a little old, but it captures Rachel's personality.

Last week when I wrote about Rachel's ophthalmologist appointment, I forgot to write about the eye test.  And since this blog has two goals:  to record Rachel's journey with JDM and to inform her faithful prayer partners, I want to write this little story down before I forget.



They wanted to make sure that Rachel hadn't lost any of her color vision, so they brought in a book full of the type of pictures that you see above.  The only problem is that Rachel doesn't know her numbers yet.  And they hadn't had a child this young before needing this type of pictures.  What to do?

The nurse came up with a good idea; she had Rachel trace the numbers.  Even though Rachel didn't know what the numbers were, she could follow them.  The nurse also had her say which colors they were.  Whew!  At least, Rachel does know her colors!

I guess I have something new to do with Rachel during school:  learn her numbers.  The nurse said she would look for an age-appropriate book before her next appointment, but wouldn't it be easier and better if Rachel just knew her numbers?

Something funny and cute happened on Sunday; it was also rather sad.  Rachel climbed up into my lap while I was sitting in the rocking chair.  As she snuggled with me, she whispered, "Let's hide from Daddy so he won't give me a shot."  We talked about various hiding places, like her closet, before deciding that he couldn't see us if we just shut our eyes.  As John was sitting across from us on the couch, I got his attention while Rachel had her eyes shut so he could get everything ready.  Rachel apparently forgot that I am also part of the shot-giving team.  *Sigh*  But it was really cute how she wanted to go hide so John wouldn't give her a shot.

Wednesday, November 13, 2013

Good News and Bad News at the Ophthalmologist


Rachel had a busy morning today.  First, John took her to get her blood drawn for her upcoming appointment to make sure that her JDM isn't rearing its ugly head.  Then I took her to the ophthalmologist to make sure that the Plaquenil we started back in May isn't hurting her eyes.

The good news is that Plaquenil hasn't affected her eyes, and the doctor doesn't think that it will based on the dosage.  But he wants to keep an eye on it and see her every six months.

The bad news is that Rachel has cataracts.  Yes, cataracts.  I had forgotten that prednisone can cause cataracts, not that it matters.  She needed the steroids to fight her JDM, and here is another reason we are thankful that she no longer needs them.

Dr. G thinks that her cataracts might go down a little bit, but they will not go away completely on their own.  And they are borderline needing surgery.  He said, "If she were my child, I would not do surgery right now."  And I said, "That's exactly what I was thinking."  And I was thinking that I would fight pretty hard not to have surgery on my three year old's eyes.

Even with her cataracts, Rachel sees at 20/40.  With 20/40, you can still see well enough to drive, although at 20/50, the DMV won't give you a license.

So, we had good news and bad news today.  But I am thankful for a conservative doctor, not one that I had to fight to keep Rachel from undergoing surgery at this point.  Oh, and Dr. G also quoted Ecclesiastes to me.  While it had nothing to do with Rachel, it was still refreshing!