Tuesday, September 18, 2012

Pictures of Rachel

This is what happens when you let a two year old pick out her own clothes!  But if anyone has a problem with how Rachel dresses, that's exactly it -- his problem!

John and I have had people ask us how we knew something was wrong with Rachel, what exactly did we see that led us to take her to the doctor.  I thought you might be wondering as well, so I'm posting these pictures.  I took these the week before Rachel's first appointment.  I planned to email them to my father to see what he thought, but I never got around to it.  Don't worry, none of these pictures are gross and don't require any kind of warning.  But the one of her inflamed nail beds might make your nail beds hurt sympathetically.  

You can see the rash on Rachel's cheeks.  We thought it was sunburn from the beach...but it was still there after two weeks.

Another picture of the facial rash.

The inflamed nail beds.  Oh, how they hurt her!

Monday, September 17, 2012

Update on Rachel

It was nice to have nothing new to write here last week.  As the saying goes, "No news is good news." At least here on this blog.  But in case you were wondering, I'll give you a quick update.

Everything is going great!

You want more?  If you were to run into us out and about, you wouldn't think Rachel was sick.  She looks and acts like any two year old.  She tries so hard to keep up with Sarah Beth and Daniel because she thinks she is just as big as they are.  She's still stirring the pot here.  She takes her medicine without complaints (mostly).  She doesn't care for having sunscreen put on, but that's life.  Other than limiting our time outside, this disease hasn't changed the things we do.

We are so thankful to God for how well Rachel is doing, and we want Him to receive all of the glory for this.

Do you have any questions?  I would be glad to answer them.

Thursday, September 6, 2012

Yesterday's Doctor's Appointment

Yesterday, John and I took Rachel back to the doctor for a follow up appointment, to see how she's doing on her prednisone.  To make a long story short, well, actually it's not a long story anyway you look at it.  She's doing GREAT!  We think the doctor said that her labs from last week look normal.  Hooray!  We're not sure what that means; we haven't done this long enough to know the questions to ask, but I'm hoping that it means that there's no inflammation.  Maybe that's too good to be true.  Maybe the inflammation has just decreased a lot.  I don't know.  But we get to start decreasing her dose of prednisone, and that's what matters.  HOORAY!

If Rachel continues to do this well, I may not have much more to write on this blog.  What a horrible problem to have!  (Did you catch that sarcasm?)

The plan is to continue the prednisone at a decreased dose along with the methotrexate.  We also need to add a folic acid supplement because of the methotrexate.  But all in all, Rachel is doing great, and we give all of the glory to God.

Again, we praise God that we caught this disease so early.  We saw a different doctor yesterday, and he asked how Rachel was doing.  We told him that she's doing great, but she really wasn't too bad to start with.  He asked about climbing stairs and seemed surprised that she had never had trouble with that.  Again and again, we see how God blessed us by getting a diagnosis and starting treatment so quickly.

Wednesday, September 5, 2012

Humbled and Amazed

I cannot believe how many people are praying for our little girl.  I am continually humbled and amazed when I hear of someone else who prays for Rachel.  Of course, I expect my family to pray for her, and I figured that our close friends would, too.  But I have blogging friends whom I have never met and may never meet this side of heaven, and they are praying for Rachel.  Rachel has been added to so many church's prayer lists:  one of John's co-workers from his previous job added our little girl to his church's prayer list.  I don't know that I ever met this man, so he probably has never seen Rachel.  I have friends that I reconnected with via facebook, whom I haven't seen in years, who are praying for Rachel.  One of them, I don't think I've seen since elementary school; another one from college, I know I haven't seen since our children took swimming lessons together five years ago.

All of these assorted people are praying for Rachel.  John and I are amazed that so many people care about her and us enough to do this.  We are humbled that God has chosen to let us see this.  We pray that God will use Rachel's JDM to glorify His name, and we can see some of that through these prayers.

From the bottoms of our hearts, we thank you for all the prayers you send up on Rachel's behalf.  And we pray that God blesses you through your prayers.

Tuesday, September 4, 2012

A Day in Our Life

My mother made this dress for Rachel since she needs long sleeves  even for church.

As I reflected last week on our new life with Rachel's JDM, I realized that you may not know how our lives are different than they used to be.  Honestly, our lives probably aren't too much different than your family's.  We get up in the morning, get dressed, have breakfast, do school, do chores, eat lunch, take naps, have supper, and go to bed.  Doesn't everyone do those things?  But there are a few differences with this diagnosis of Rachel's.

Rachel is a typical two year old.  (At least, I think she's typical.)  She doesn't want to get dressed because she just doesn't want to.  She doesn't want to have her hair brushed because the tangles hurt.  Since she's two, she lets me know about these un-wants loudly.  On top of those two things, I also have to put sunscreen on her face, particularly if we're going outside that day which means more fussing and complaining.  "Don't put ice cream on my nose!"  (I don't know why she doesn't want the sunscreen particularly on her nose; that's just Rachel.)  Since most days we do go outside even if it's just to church, we've got to deal with sunscreen.  

And I have to remember her medicine every morning.  The prednisone isn't too bad, although it's kind of a lot:  10ml or 2 teaspoonsful.  The generic Zantac can be a chore, though, because it tastes nasty.  Rachel is getting better about taking that one.

We also have to time our playing outside around Rachel's photosensitivity.  Of course, it's still pretty hot down here, so we want to be outside first thing in the morning anyway.  But it is hard when we're with other children who want to go play outside and we have to say "no" because it's the wrong time for Rachel.

And poor Rachel has to wear long sleeved shirts and long pants all the time.  Poor thing wakes up sweating from her nap, but she doesn't complain.

Thankfully, we don't have any dietary concerns yet, but that could change.  Some children need special, gluten-free diets.  We're praying that doesn't happen to Rachel.

The worst thing, I think, is the methotrexate injections that I have to give her weekly.  She hates them, I hate them, John hates them.  We all hate them.  John holds her down while I give her the shot; thankfully, Rachel doesn't struggle too much although she does scream bloody murder.  (And I don't blame her!)  To make it a little better, we do give her a Hershey's kiss, and no, Daniel and Sarah Beth don't get one.  And I make sure to put a cute, fun Band-aid on, even though sometimes it's hard to find the injection site because I use insulin syringes which are teeny-tiny.

But for the most part, our lives are going on like they used to -- before Rachel's JDM diagnosis.