"They Look Like Fireflies!"

Today I feel like summer is officially coming to an end, since this was the last weekday of summer, with school beginning on Monday. (We went up to school to visit her classroom today and see all the families from our corner of town --- it was like a neighborhood party! We also took Anna for a hair trim.)

The summer has been extraordinarily busy! (Guess that's par for the course with three active kids.) I haven't added to this blog lately, because we went from June to August with no doctor's appointments for Anna. (That's a good thing!) Last week, she had two appointments: one with the rheumatologist on Tuesday, then with the ophthalmologist on Thursday. I was just a little nervous about the Thursday appointment, because we had missed a few doses of medication, plus we had lowered the dose of Cyclosporine several weeks ago (Anna was developing gingival hyperplasia---overgrowth of the gums, which is a possible side effect of the Cyclosporine). I just wasn't sure whether those variables would cause Anna's eyes to flare.

Nevertheless, she had a decent appointment, with the ophthalmologist seeing only about two cells in her left eye (right eye was clear). This may be a TEENY flare since last time, because I think eight weeks ago, the verdict was "barely a trace." We can go another eight weeks between now and the next appointment. (What a RELIEF!).

I like having Anna's eye appointments on Thursdays, because that's the day a pediatric resident from Hershey Med follows Dr. M. around (parents learn so much more information when specialists are teaching residents! At least that's what I've found to be true.). Anyway, Dr. M. let the resident look at the interior of Anna's left eye with the slit lamp instrument to see the evidence of uveitis. As the resident looked, she said, "Oh! I see! They look like fireflies!" Anna and I thought this exclamation gave us a great mental picture of what is going on in her eyes. We can handle a trace of "fireflies" in her eyes without too much worry. We just don't want those "fireflies" taking over.

I just got a new camera and am still getting used to it and the settings. I will try to post a few photos here and there as I get some good ones.

Another good appointment with the ophthalmologist!

The good news continues with Anna's eyes. They are all but clear of inflammation (just a cell or two floating around, but "well under control." I try so hard not to live life in the "what if" modes, but there are moments when my mind is working away, wondering IF in two months when we return for another appointment, IF Anna's eyes remain clear . . . will we be able to lower the doses of some medications? My preference would be the Cyclosporine. Guess we'll have to wait and see, and just be content and at peace for these next two months that her eyes aren't flaring, and having to think about what we would do IF the eyes got worse instead of better. (Sometimes I think of that, too, because she's near the limit of her current doses of Methotrexate and Cyclosporine.)

I know that so many people are praying for Anna and her eyes, and we are humbled and appreciative of all the prayers that are lifted up on Anna's behalf. Thank you. Our lives are near to normal (except for lots of medication and weekly shots and occasional blood tests). I know that not every Juvenile Arthritis patient has such an easy road. I hope that Anna's journey (these "up parts" anyway) bring hope and encouragement to all.

A New Chapter in Anna's Life . . .

Well, maybe a "sub-chapter"! And it's not related to JA or anything. Yesterday, Anna began taking lessons to learn how to play the bassoon! She "fell in love" with the bassoon when she was in second grade, and the music teacher was playing snippets of various instruments for the students to hear. Anna came home that day from school and announced with passion, "I want to play the BASSOON!" We were uncertain that it would happen this year . . . we weren't sure if she would have to begin with an oboe and then graduate to the bassoon, but the music department in our school district decided that Anna's fingers were long enough to navigate the keys, and she could start with the bassoon this year. And now she has an opportunity to have five more private lessons (the school district will pay for them) with a friend of her brother and sister, a young man who seems to be able to play any instrument that is put in his hands! Anna has always admired him (she's seen him at all the concerts we've attended in previous years when Abby and Joel were in middle school), and she is so excited! I'm realistic enough to realize that there will be highs and lows of excitement and enthusiasm levels when learning a new instrument (we've been through this before with other children!) I'll post a picture (of Anna and her bassoon--which is almost as tall as she is!) later on. When Anna was practicing yesterday, Abby had the camera---she was ushering at the high school graduation, and wanted the camera to take photos of her dear friends.

Good Appointments!

This is a funny picture of Anna! (Her brother Joel took this one.). Two thumbs up for two good appointments (actually, when the picture was taken, she wasn't even thinking about doctors' appointments, but I thought this fit!).

Anna's joints are doing well. We go back in August. Her eyes continue to very gradually improve, as well. Right eye is clear; left eye has just a very occasional cell, hardly even worth a "trace" rating . . . the doctor said between 0 and a trace! Great news! The next appointment is in seven weeks instead of six (YAY!!! For awhile, we were going every 3-4 weeks.). And the ophthalmologist is thinking that if her eyes stay this quiet for two more appointments, maybe---just maybe---we can think about lowering some doses of the medications.

Good news, indeed. Even though uveitis can fluctuate, we will be happy for the next seven weeks, and eagerly anticipate the day when we can begin lowering Anna's medications. Although I try not to think about it much, when I do allow myself, I cringe at the amount of medication that is going into her little body (I don't think she's had a break from medication since she was 23 months old). As always, we do so appreciate the prayers of everyone as we continue on this good part of the journey.

A New Photograph . . . More Updates this coming week . . .

I know it's been quite a while since I updated this blog. And I know I have some comments to respond to, also. (Sorry for the delay!) Life has been super-busy lately. We've spent a lot of time this month at some track meets and church meetings (after spending last month renovating a room in our small house). Here's a recent picture of Anna with my husband, Scott. They're waiting for Anna's brother's race to begin. Anna has two appointments next week (pediatric rheumatologist and pediatric ophthalmologist), so I will give an update within the next ten days. Promise!

Relief
A sigh of relief and a prayer of thanks to God! (not necessarily in that order!). I was a little nervous about Anna's eye appointment today, since she had missed a few of her Cyclosporine pills last week (since she had been sick). But the eyes have not changed all that much in the six weeks since the last appointment. And the doctor said that if the next two appointments are okay (he said he's happy with how she's currently doing, even though there is a trace of cells in the left eye), we might even go to eight weeks between appointments. That may not seem like much to cheer about to the average person, but for Anna and her eye doctor, this is good news indeed! I need to be thankful for the small things (like this), although in my heart, I would love to get to a point where we could begin to decrease some of Anna's medications. But with a trace of cells still present, that's probably not in the near future at all.

Chillin' out at the farm in Maryland. Can you tell that Anna loves the color green? Anything green--any shade of green!

Here's where we sit back and see what happens . . . Anna's had several viruses lately . . . respiratory, then something that included a headache, queasy stomach, and a low-grade fever. Two days later she had some intestinal troubles. Missed two days of school. So I checked with the powers that be about giving her the Cyclosporine (it's a strong immune-suppressent medication). The advice was to stop the Cyclosporine for a few days, until she regains her health. In many ways, that's a relief, and I just want Anna to feel better (on Wednesday she dissolved into tears and said she was so tired and sick of being tired and sick). On the other hand, she has an eye appointment next Thursday, and I'm just a little wary about what the "vacation from Cyclosporine" will do to the eye inflammation. Nothing to do but wait and see (and place everything in God's hands). . . at least she's more perky today, and much more herself than she has been for awhile.

Nothing significantly new here, lately! Anna caught one of those cold/bronchial viruses, so she's been coughing a lot lately. I had something similar about two weeks ago--nothing alarming . . . just one of those things where you need Vick's Vapor cream at night and a humidifier going (although I think something is wrong with the humidifier I recently bought---I may have to call the manufacturer). At least that means that we should wait another week or two for the upcoming blood test. Anyway . . . Anna didn't have to wait around anywhere (and find some way to kill time) for the regional Capital Area Science Fair, because we had such a busy weekend (last weekend), that my parents let Anna spend two nights with them in Maryand (that sure helped with logistics of last weekend). She had a blast with Mom and Dad and her best buddy cousin, who also spent the weekend with Grandma and Granddad. Mom and Dad's house is the only place she's ever spent the night (besides JRA Camp or on vacation with us). That seems rather odd in some ways, but that's just the way it's been. At least Anna's to the point where she doesn't need all that much help with organizing her medications. She has it all down-pat, and she's in a routine whereby she knows it's a regular part of her day (after breakfast for the 100 mg of Cyclosporine, and bedtime for everything else).

"Let's think of something to do while we're waiting" . . . Anna spent last Saturday at the high school science fair, where her brother, Joel, had a project which compares three types of roller coaster launches (he tied for second place---gets to go to the regional science fair on February 16th). Anna chose to go over to the college (which was hosting the science fair) with Abby and Joel. We learned last year that there is a whole lot of time between set-up and judging and awards, so Scott and I decided to stay home and get some things done (we're working on renovating a room in our house . . . a LONG, slow process in a 70+ year-old home) until about an hour before the awards ceremony (it's REALLY great to have a teenager who is a responsible driver!---and I think they enjoyed being out by themselves). Anna took paper and crayons to keep her busy during the "down time."

Anna had an eye appointment yesterday. No cells at all in the right eye (although the pressure in that eye is around 21-22, which is interesting. Normal is anything under 18 or so). Still a trace in the left eye, but better than last time, although my comment of "Good!" with a smile got a cautionary response of "Well, we can't get really excited, because this has a pattern of fluctuating." I know that. I'm a realist, and we've been on this road for quite awhile. But I am choosing to be happy for today!

Another ice storm this morning (mostly rain now). We'd rather have snow. Oh, well! Slow start to the morning, 'cause the kids had a two-hour delay.

Even though life is pretty much normalized, I've noticed in the past week that when Anna gets up from sitting (watching a movie or something), she spends about five minutes going lunges and deep knee bends. I asked her why she was stretching (I knew she wasn't "going out for a run" like her brother . . . she's not old enough to go for a run without one of us being with her!). She said that she gets a little stiff after sitting. But she was adamant about it being "no big deal, Mom! This is normal for me!" She's just a little stiff; not in pain. No big deal (although it's something I'll personally file away in my mental notes.)

Injectable Methotrexate hasn't always been readily available, but I'm very glad to have found another supplier, and one that's closer to home! When injectable Methotrexate was first prescribed for Anna, the only pharmacy in the area which could obtain it for me was the very last independent pharmacist (on our side of the river) listed in the phone book . . . I had tried calling all the others, with no success---none of them had any wholesale supplier who could get it for them. I've been driving into the worst part of Camp Hill (traffic-wise) once a month for several years now, and the pharmacy's hours are limited. Well, I tried calling the new Wegman's store, and they can order it in for me---no problem! I am SO very happy about that!

Life has seemed fairly normal lately, and this is "normal" at our house! We've worked to achieve family camaraderie, and because Anna looks up to her siblings, they can usually get her to eagerly help them when it comes to interesting tasks like the one pictured. Joel built this roller coaster for his Independent Project at school, and then he had to get it to the school. He decided that it was too big to fit into the van, so he thought he and Anna could just walk it up to the high school! They did (and I followed along with the camera and the little bucket to collect pieces as they fell off), although they had to stop several times to stabilize the contraption! Joel and Abby brought it home today (they used the van to bring it home! I took pictures of that, too, but I'll post them some other day on one of my other blogs!)

I know this has nothing to do with JA---but maybe it shows just how normal JA kids can be when the disease is relatively under control!

(I did pick up Anna's blood test results, and they're relatively normal. She has an appointment with the pediatric rheumatologist tomorrow, although I'm anticipating an uneventful appointment).

Happy New Year! Anna managed to stay up past midnight to go downtown (in our small town) to participate in the festivities with parents and siblings and cousins and aunt and uncle, and Gran, too! We love that we live close enough to walk downtown for New Year's Eve, and we like sharing the time with family, too. Once we arrived home (Anna actually chose to ride home in the car with Scott and Scott's mom, instead of walking back with the rest of us---it was really cold, and it's about 1/2 mile walk home), she was about to "hit the wall," so she gave hugs and went to bed!

Anna had a blood test on Monday morning (checking her cyclosporine levels as well as her CBC and other things), and she will have appointments with both the rheumatologist and ophthalmologist this month.

We've been getting ready for Christmas, and I haven't taken the time to post. Anna saw the ophthalmologist eleven days ago, and her eyes are the same as last time . . . right eye clear, and the left eye still has trace cells. I've settled into acceptance of this status quo (don't know whether that's good or bad, but I don't really have time to worry, and worrying about it wouldn't change anything anyway).

Anna got her braces off on Friday!!! We haven't taken any pictures yet, but I'm sure we will over the Christmas festivities, and I'll post one here later this week.

Today is our family's "First Day of Christmas". We have so many events to attend, and so many family members to visit and see. But our immediate family's Christmas was this morning, and now I can relax a bit, because we'll just be going to other people's homes, and that's always fun and nice. The loaves of homemade cinnamon bread are made and ready to take a trip to Hagerstown (the house smelled SO good last night!) Two batches of cookies are done, and one needs to be baked before tonight. We just need to pack and take a bunch of used shoes to Super Shoe this morning (they're giving vouchers for used shoes, to be used towards the purchase of new shoes, and Joel really needs a new pair of running shoes!)

Merry Christmas, everyone. May all of you know the love of God expressed in the form of Jesus Christ---God the Son coming down to earth so that we can know God and have a relationship with Him!

Joel (Anna's older brother) ran in the local Jingle Bell Run on Saturday, to benefit the Arthritis Foundation. We've had a very busy week!

Anna was supposed to go for an eye appointment today, but there is a storm with sleet and freezing rain, and the appointment has been postponed until tomorrow. The doctor's office called me to say they were closing early, before I had a chance to call them and tell them that I didn't want to cross those bridges over the river in such weather as we're having today.

After I post here, I'm going to post some icy pictures on my other blog!

Happy Thanksgiving!
We spent the day at Gran's house, where the kids decorated cookies, as they do every year!

Another Appointment Today . . .
. . . and the verdict is . . . still moving in the right direction. The right eye is essentially clear; the left eye has trace cells. Her pressures are back in the normal range (since we stopped giving her the Pred Forte eye drops). A good appointment. Other meds are still the same . . . still 150 mg daily of Cyclosporine and 20 mg Methotrexate weekly.

What RAIN we're having (but we've needed it!). A lot of things are going on in Hershey this weekend. (I said maybe we should have just booked a room and spent the night in Hershey!) We're supposed to go tomorrow for a district cross country meet, but it may be postponed. Traffic was horrible this evening, though! (And the outlets were crowded!). This is the second Friday this month in which I've had one of the girls to an appointment and had to travel home through Harrisburg traffic, which has been absolutely awful. I told Scott that I really don't ever want to attend any Friday evening event in Harrisburg or Hershey (unless one of our kids is involved, or if we absolutely have to!). Getting there would stress me out! . . . . but maybe it would be better if I were the passenger instead of the driver.

Fluctuating in a GOOD way!
Anna had another appointment, and her uveitis has significantly improved! What good news! It seems like the more we travel this journey, the more information/understanding we learn. Dr. M explained that in order to gauge the amount of inflammation in Anna's eyes, he counts the white cells (which don't belong there!) within a beam of light. Three weeks ago, he counted 10 cells in Anna's left eye (in that measurement of light) and five cells in her right eye. This past Wednesday, he counted two in each eye. He was very happy! That is indeed good news, because the Intraocular pressure in Anna's left eye was up in the 20's, since she's been on the Pred Forte eye drops for that eye. So we're stopping the eye drops for now. (Pressures are very worrisome in the 30's, and she's not there, but 20's is "concern-worthy.") :o)

Anna celebrated her tenth birthday last Saturday! How the time flies!

Fluctuating Uveitis
Many who deal with arthritis and uveitis describe the journey as a roller coaster ride, and how true that is. We spent the last six weeks being happy about Anna's eyes being totally clear of inflammation, and every now and then, I allowed myself to think that we could soon start lowering some medications. Not so. We had another eye appointment today, and the inflammation is back --- a trace in the right eye and 1+ cells in the left eye (for those unfamiliar with the rating system of eye inflammation, it can be anywhere from a "trace" up to a "four"). That's not really bad by any means, but the ophthalmologist doesn't want it to get out of control.

Part of the issue may be that Anna has grown lately. The ophthalmologist called the pediatric rheumatologist on call, and they decided to increase Anna's cyclosporine by 25 mg. Anna has gained weight since March (and grown taller)---although she's still pretty skinny! Her last labs showed that the cyclosporine "trough" (that's what the ophthalmologist called it) was the lowest part of "normal" range.

Even after taking Anna to specialists for over eight years, I sometimes still have to take a minute for my brain to interpret different terminology. But now I know what a question about "a standing order for trough" means---it really means "do I have a standing order for lab work". (Figured that out on my own, but it took me a minute.) Sometimes it may seem (to these doctors) like I'm spacing out for a minute while my brain is processing a question which I'm not sure I really understand!

It's been a long week already, and it's only Wednesday!!!! Car issues (the emissions light stays on, and we can't get an appointment until next week, but the dealership service guy assures me that it will be okay to drive it for the next week!), and this evening Scott (Anna's dad) found that a huge screw had penetrated the back tire of our van. Lovely (being sarcastic here!). I am SO glad that I chose to take the car to Hershey for Anna's appointment (even with that emissions light glaring at me) instead of the van, which would have ended up with a flat tire during evening rush hour!).

But the week has had some really good points, also! Anna's brother Joel had his best run of the season last evening. Anna loves to go to cross country meets and invitationals, and she's sometimes a very loud (and excitable!) cheerleader for her brother and the other runners!