Vacation, A Mysterious Rash, and One Absurd Day.

Well, we were on vacation for two weeks visiting my parents in Michigan. A lot has happened since then and many changes are in the works. Here's a brief summary to get everyone caught up:

1. End of May: This story is a doozy. Brace yourself.

Three urgent messages were left on our voice mail at home from Mia's rheumatologist the day after her appointment with him on 5/26. The last message told us to call the pediatrician's office immediately for more information. Nice...a very urgent and uninformative message! Apparently, something was low in her blood work and he wanted us to take her back in immediately to her pediatrician to have the blood work done all over again and to bring a stool sample with us. Nothing more was said...to us or to the pediatrician's office. After receiving a message like that, we were a bit concerned.

So, I took Mia in immediately the next morning to the pediatrician's office. I left messages all morning for Dr. Lopez. And heard nothing. Finally, I had him paged around 3:00 p.m. to find out what was going on (why couldn't he have just relayed the information to the pediatrician's office?!?!?!) Grrrr! The first thing he asked me was if I had stopped Mia's naproxen yet. WHA??? Well, if someone had left a message for us to do so then we would have. Sorry...just a little frustrated at this point. Now my mind was racing. He proceeds to tell me there is a possibility of Mia having G.I. bleeding from the naproxen (lovely...he just increased her dosage, too) and that the blood work and stool sample would give them a better idea of what is going on.

Great.

Later on that day, the pediatrician's office calls me back and tells me that she doesn't have G.I. bleeding...she is just anemic (or, as Mia says, "ameeemic"). Phew! All that craziness for nothing. So, they are going to give her an iron supplement to help with that. And they told us to continue with the naproxen.

Which brings our story to the present chain of events which occurred this past Thursday.

I was supposed to receive a phone call from Mia's pediatrician's office the week after her initial blood work to discuss an iron supplement for the anemia. Three weeks went by and I didn't hear anything from them. Granted, we went on vacation for two weeks, during which Mommy's mind went on vacation too...especially to those things which were JRA-related. I needed a break!! So, the Thursday after we returned I called her doc's office to inquire. And this is where the story gets VERY absurd...

• The ped. office tells me to start her on an over-the-counter iron supplement.
• They then call me back later to say that the Ped. talked to the Rheum. and he wants to know why we didn't stop the naproxen weeks ago? WHA?!?!?!?!?! We were instructed to continue it after the results came back that she was only anemic and there wasn't any G.I. bleeding and that they would call us to discuss the iron supplement the following week.
• So, now we are being told by the Ped. who is receiving emails from the Rheum. that we are to stop the naproxen immediately and get her on an iron supplement.
• A half-an-hour goes by and I get another call. This time the Rheum. emails the Ped. and says to tell us (OK....WHY CAN'T YOU JUST CALL THE PARENTS DIRECTLY?!?!?!?!) that Mia needs to go in immediately for more blood work and to bring in another stool sample. No further information is given as to WHY we need to bring our child in again for a third round of blood work. Yeah, I was about to blow at this point.
• So, I tell the ped. office that before I bring her in again, I need to speak to the Rheum. to get more information as to WHY she needs to come back in.
  
• I get on the horn with the Rheum. who I have to have paged because "he is 'off site' today." He calls me back. It's not a pretty conversation...so I'll leave it at that. Bottom line, he tells me that Mia's second round of blood work also showed that she still has "lowered hematocrit levels," which means there is still a chance she has G.I. bleeding. Great...we've had her on naproxen for the PAST THREE WEEKS since we were instructed to continue it!!
  
  He then proceeds to tell me they need to do a round of THREE tests in order to rule it out, in which case, we need to bring in THREE stool samples. That's funny, the ped. office told me on the phone that it was just ONE stool sample. And I love how we are hearing about this for the very first time....three weeks after the second round of blood work. At the end of our conversation, I asked him what we are to do about the naproxen and he tells me to keep her on it. OMG! After all of that...after being scolded on the phone because we didn't take her off of it three weeks ago...he tells me to keep her on it.
• So, I took Mia in for the blood work this morning and dropped off round one-of-three of the stool samples. Despite the fact she was not to happy to learn that she was going back in again for more blood work (she is WELL aware now of what that means!), she managed to make light of the situation. I overheard her telling her father that she was going back to see Dr. Maddox and "the beetle!" I told her, "No, Mia. It isn't a beetle. It is a needle!" She tells me, "No Momma...it's a beetle." Too funny!
  
• We have an appt. with the Rheum. on Wednesday (6/25) where we will all sit down together and have a nice heart-to-heart. :)
  

Lesson learned: You are your child's advocate. You are their voice. It doesn't matter if their doctor(s) get annoyed by your phone calls. It doesn't matter if they get impatient when you have them paged when they are "off site" (golfing? hmmm...perhaps.) so you can get to the bottom of things. What matters is that you get the correct and accurate information the FIRST time around.

And to think, we wouldn't have found ANY of this out if I hadn't called to inquire about an iron supplement. Come on people...do your jobs!!

Moving on...

2. Mysterious Rash: Two and a half weeks ago, after wearing her brace to bed one night, Mia woke up with a rash on the inside of her left knee...the joint that is affected. It is right on the spot where she has some boney overgrowth of cartilage due to the JRA. At first I was hoping it was just a heat rash of some sort, but we've put neosporin on it and hydrocortizone and neither one of them have helped. Her rheumatologist and pediatrician have been asking us since her initial diagnosis if Mia has had a rash or fever because those are some of the symptoms of systemic JRA.

I know there are several of you who read my blog who have children with JRA. Have any of your children ever had a rash?!?! Any help or insight would be greatly appreciated. Mia has never had a fever with the rash....just inflamed joints and now this "mystery rash."

Her rheumatologist told me that he believes it is definitely related to the arthritis, but he will know more when he takes a look at it on Wednesday.

3. New OT: I am very sad to announce that Mia's OT, Kelly, will not be able to continue her services. Kelly is due soon with her first child (hooray!!) and has decided to not return to work after the baby is born. Mia will be very sad to find out that Kelly won't be coming to visit her anymore, but we are very happy for Kelly. She was a wonderful OT and Mia loved visiting with her.

On Monday, Mia will be meeting with Stella, her new OT, for the first time. First off, I just want to say that I LOVE her name!! I am hoping she is as fun as her name is! Ha! :) During this meeting, we will be discussing Mia's transfer from Early Intervention into the public school system's services starting in December 2008. Mia will be three-years-old at that point and E.I. does not provide services past the age of three.

4. PT: Mia will still be meeting with Mary on Mondays. Mia LOVES Mary. :) You know your child has a great PT when they go away on vacation and all they can talk about is going to see their physical therapist! :)

5. Overall: We had a great vacation! We got to have dinner one night with our friends, the Antonellis, at their house whose daughter, Faith, had JRA. It was so much fun! They have three adorable, little girls - Grace, Faith and Hope. From the very first moment that Mia met Faith you would have thought they were sisters. These two little girls are so much alike. It was amazing. I just sat and watched them play together and I could have cried - two beautiful little girls with such amazing and bubbly personalities fighting a horrible chronic illness. And it really made me think - I truly believe that God gave both of them their delightful and upbeat personalities for a reason. He knew before they were born what they would face early on and He knew that by giving both of them "merry hearts" it would be like medicine to their bodies (Proverbs 17:22). God's Word is working in Mia's body and in Faith's body! :)

They have such a beautiful and blessed family and it was great to sit and talk with them while the kids played. And JJ loved being around all the girls!! :) I will post pictures soon of our visit with them. We look forward to many more visits and play dates with them when we are in town.

6. Up Next: Mia has her "scan-o-gram" scheduled for next Wednesday morning at 9:00 a.m. She will be meeting with the rheumatoligist afterwards. He spoke with Mia's pediactrician today and said that he believes that the rash is related to the JRA, but won't know until he takes a look at it. Please continue to pray for Mia and agree with us for a good report next Wednesday.