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!

Wednesday, August 21, 2013

Even Better News!


Rachel had another doctor's appointment today after three months off.  That break was soooo nice, and it was even better that we only had to get her blood drawn once during that time.  It was wonderful!  But after the wonderful, exciting news from her last appointment, we weren't sure that things could get even better...but they did!

I almost hate to tell you this because I'm afraid that it will jinx it.  Maybe I'd better knock on some wood.  But no.  I don't believe in superstitions; the God that I serve, the One Who has been healing Rachel and keeping her well, He is infinitely bigger than superstitions.

Dr. R told us this morning that, because of Rachel's excellent response to medication and her lack of any type of relapse, she thinks Rachel will not be bothered with this disease again.  Her exact words were, "One and done."  Isn't that wonderful?  She contemplated taking Rachel off her methotrexate injection, but we decided that it wasn't worth the risk.

The good news keeps going!  Dr. R also said that we didn't need to be so careful with the sun.  Needing specifics, I asked about shorts and t-shirts.  It's time to dig them back out for Rachel!!!!!  After a year of nothing but long sleeves and long pants, Rachel gets to wear shorts again!!  Whoohoo!

We will still need to put sunscreen on her arms and legs when we go outside, and Rachel will still need to wear a hat.  But it will be so nice for her to ditch the long sleeves in the 90 plus degree heat that we still have.  Poor thing comes inside with her hair matted down to her head with sweat after being outside for ten minutes.

Once again, we don't have to go back for three months.  Dr. R said that if Rachel's labs continue to look good (which they were perfect again today), we can stop the methotrexate injections and give it orally instead.  Whoohoo!

I thought we got good news at Rachel's last appointment, but it doesn't even compare with the news from this one!  And our wonderful Lord Who is the Great Physician deserves all of the glory!

Wednesday, May 29, 2013

Wonderful, Exciting News!

Rachel's new bathing suit.

This morning, I took Rachel (and her brother and sisters) to her new doctor for a follow-up appointment.  As we expected, Rachel is doing very well, as she has been since she started her treatment for JDM.  What is so exciting and wonderful, though, is that we have reached the end of the prednisolone taper.  She is done, done, done with her steroids!  Hooray!  We have already noticed that the swelling (from water retention) in her face and stomach has decreased.  But, starting today, she doesn't have to take it anymore!  (She does still have several other medications that she takes daily and weekly, but they don't have the horrible side effect profile of predisone.)

But that's not all.  No, it's not!  And I'm so excited that I'm almost giddy!  Starting in Florida and now here, we've been seeing Rachel's doctor almost monthly and having Rachel's blood drawn before each appointment.  Since she sees a specialist, a pediatric rheumatologist, we have to drive over an hour each way for her appointments.  But our doctor wants to have blood drawn in two months, and she doesn't want to see us for three!  How wonderful!  We almost can't stand it, it's such good news.

I also found out that my parents had taken Rachel off their church's prayer list.  Isn't that good timing?  Rachel is doing so well that she doesn't need special prayers anymore, although we are grateful for any prayers on Rachel's behalf.  And John and I certainly pray for her everyday.  

I just wanted to share the good news with you.  I would like to shout it from the rooftops...but I think I will control myself.

Wednesday, April 17, 2013

Rachel's New Doctor


Today we took Rachel for an appointment with her new pediatric rheumatologist.  Even though, she is doing so well, we knew that it was important to keep her seen and followed, so we were glad that we were able to get her in so quickly.

We liked Rachel's new doctor, although she seems a little young to be a pediatric rheumatologist.  Maybe, as John said, we're just getting older.  Anyway, she seems very familiar with JDM, and we feel comfortable with her caring for Rachel.

Unfortunately, after the appointment, Rachel had to had blood drawn.  That is the absolute worst part --to me-- of being a mother, but John was there, so he took her while I waited with our other three children.  (By the way, why don't these children's hospitals have cute Band-aids for children?)

We followed all of this up with a trip to Chick-fil-A, or Chickle-A as Rachel calls it.  Then everyone was well-fed and happy for the dive home.

Tomorrow we get to decrease Rachel's dose of prednisolone.  She started out at 10 ml (or 30 mg) back in August, and now she's down to 1 ml (or 3 mg).  Hooray!  We're almost done with this medication!

Thursday, January 3, 2013

I Hate this Part of Being a Mother


I know that, as stay-at-home-mothers, we're supposed to love every single part of our days with our children.  While I do enjoy most of my days spent with my children, there are times that I tolerate, and there are even a few that I dislike.   (Shhhh.  Don't tell anyone.)

But there is one thing about being a mother that I absolutely hate.  Don't tell me that it's for her own good; I know that.  It doesn't make it any easier or more pleasurable.

What is it?  I hate, hate, hate taking Rachel to have her blood drawn.  As soon as she realizes that's where we're going (when she hears the babysitter is coming, and she's the only one going with me), then she starts screaming.  "I don't want to go!  I don't want to!"

Thankfully, it doesn't usually last long.  And she is her happy, sunny self again until the phlebotomist puts the tourniquet on her arm.  Then the screams start again, and they only intensity when the needle goes into her arm.

It's so hard to hear her scream because she's in pain and scared.  It's hard to hear her scream, "Mommy!  Mommy!" because she wants me to make it end.

But what can I do?

I took Rachel yesterday for blood work because we have an appointment next week.  Meanwhile, she is doing great.  To look at her, you would have no clue that there is anything wrong with her, and we praise the Lord for that.