An Update on Anna's Eyes . . . Not Bad . . . . .

It's been awhile since my last update. Anna saw the ophthalmologist last Friday. This was the first visit since we decreased the Cyclosporine by 25 mg. in January. We were hoping that her eyes might have remained quiet of any inflammation, with the hopes of decreasing the Cyclosporine yet again. That will not happen at this point. The doctor saw maybe one cell in each eye, so he categorizes both eyes as having "zero-to-a-trace" of inflammation. I didn't even broach the subject of decreasing the med at this point. (I'm so happy that the inflammation didn't go wild with the decrease of cylcosporine, but I'd rather be cautious than to try another decrease when there's any evidence at all of uveitis.) All in all, it was not a bad appointment.

Anna had a few viruses over the winter months, but thankfully, they were short-lived, and the symptoms were such that I was able to figure out that they were indeed viruses and not related to arthritis or to medications.

Anna is finishing up her last year in elementary school, and eagerly anticipating the move to middle school! It helps to have two older siblings who have such good things to say about their own experiences in middle school and high school. :o)

Just a little update . . . .

We've lowered the Cyclosporine dose to 75 mg., but won't know what effect (if any) that will have with Anna's eyes. We have appointments with both specialists in March (different days/weeks). In the meantime, we've been living life and having fun, although everyone in the family has had some sort of virus (each a different type) in the early part of January. Anna's virus affected her stomach (heard later on the local news that people were flocking to the ER with Anna's symptoms, although we didn't . . . just rode them out---she had rather severe stomach cramps---among other things---with her virus). Anyway, the only reason I mention that is because we let her skip the Cyclosporine and even a weekly dose of Methotrexate. I really need to write that down, because the ophthalmologist likes to know every detail (when?, why?, how much?, how long?) if we skipped a dose or two. In the past, a skipped dose or two (while recovering from a virus) has not had any affect. We'll pray it doesn't this time, as well.

Good News for a New Year!

Anna had another appointment with the pediatric ophthalmologist today. After using the slit lamp machine to carefully look into the depths of Anna's eyes, the doctor said, "Happy New Year! She looks GREAT!" They are both totally clear of inflammation! At first, the doctor was planning to maintain Anna's current level of medications (and have us return in ten weeks), but I asked him how long her eyes would need to look "great" before we could begin lowering some medications. The pediatric rheumatologist (at our visit with him in December) was hoping to start a very careful decrease if Anna's eyes were continuing to look good. The ophthalmologist had a letter from the rheumatologist to that effect (it was, in fact, at the top of Anna's file). So the ophthalmologist agreed that we could try lowering the cyclosporine to 75 miligrams daily (down from 100 mg.). Anna was in back of the ophthalmologist (sitting in the exam chair) grinning broadly at this decision and giving a silent "YES!" There have been times in the past where I have worried over decreases in medication, but I'm not thinking about what might go wrong at this point (a few years ago, a decrease in Methotrexate caused significant flares in the eyes and a slight flare in her joints). I'm just really happy for right now. :o)

As Anna was sitting in that exam chair today, I was thinking how grown up she's been looking lately. Hardly a little girl any more, but a young lady. Time just doesn't stop.

In other news, our freezer died. I think it's been on a slow road to death for awhile (it's been "kind of" working but not working/freezing well. Scott knew for sure that there was a major problem when he went to get ice cream out of the freezer last night, and it was more like a very thick milkshake.

I whispered a little prayer this morning, "Lord, please order my day." And boy! Did my day keep me busy and moving! (I told Anna later that when I whisper a prayer like that, then I figure that any interruptions or surprises during the day are just the way things are meant to be and happen, so I don't get bent out of shape about them.) After tackling a mountain of work (I had been on vacation since December 24th), I arrived home with about 20 minutes to spare before Anna arrived home from school and we headed to Hershey for her appointment. Then when we arrived home again, Abby and Joel informed me that Scott had called them to give them instructions about getting the ice cream out of that freezer (we ate some and gave some away to neighbors), and to let me know that we should probably go shopping for a freezer tonight.

So everyone grabbed something to eat for supper (besides the soft ice cream---mostly omelets and/or scrambled eggs), then I took Anna to youth group and the neighbor kids to our church's Bible School program while Scott and Abby and Joel unloaded all of the food in the freezer into boxes. The boxes of food went to the church, which had an empty freezer which we were told we could use. In my little amount of time at home before playing "taxi," I searched for freezers online at Home Depot, Lowes, and Sears---found what we wanted (the only chest freezer with an energy star rating), and called Lowes to find out why the website said that none of the stores in a 20-mile radius had that model available. Bottom line . . . we printed out the model and price from the website---they had almost the same freezer in the store, and he gave it to us for the on-line price ($30 cheaper than the store model). They had some in the warehouse, and it fit just perfectly in the van. So now we have a new freezer, and we arrived home just in time for me to hop in the car and pick up the neighbor kids and Anna. Now I'm ready to sit and chill a bit. I'm so glad tomorrow's my day off!

(The picture above is from Thanksgiving . . . Joel was trying to get a great picture of the capitol building in Harrisburg from Riverfront Park.) :o)

Supporting the Arthritis Foundation -- The Jingle Bell Run

Back in December, Anna's dad (my husband, Scott) and her brother Joel participated in the annual Jingle Bell Run in Harrisburg, which supports the Arthritis Foundation. This was Scott's first 5K running event! We were so proud of him! Joel has been participating in this event for quite a few years---back when the crowd of runners wasn't really a crowd, and he could easily figure out if he would place in the finish for his age group. We're very glad for the Arthritis Foundation that this event in our area continues to grow. This year, they raised over $27,000 for that run. Our busy schedules (three kids and many responsibilities keep us hopping) have caused us to prioritize many of our activities, and for the Arthritis Foundation, this is the one event we've focused on lately.

The Fireflies Went Away, but then came back (just a few of them . . . )

(In the picture above, Anna is playing a "Toss the Christmas Card" game at a recent Christmas party, while her brother, Joel looks on)

It's been a long time since I updated! And well, you know, sometimes I'm never sure how many people read my blogs anyway, but it was so nice of Jacob's mom to ask how things are going. And since she asked . . . . sometime near Anna's birthday (in late September), we suspected that Anna might have pink eye (conjunctivitis). Believe it or not, this was my first experience as a mom with this condition---none of my kids had ever had it before. So I searched on the Internet to find symptoms, and I immediately found out that sometimes uveitis can be misdiagnosed as conjunctivitis. So I called Anna's pediatric ophthalmologist, and he was able to squeeze her into his schedule that morning. Even though I wasn't thrilled about conjunctivitis, I was actually very relieved that it wasn't a flare of the uveitis! (Her eyes were very, very pink, and I figured if it was uveitis, then it was a very big flare . . . because she had never had uveitis symptoms like this!).

So the doctor sent us home with sample drops (they were sufficient to combat the infection---we didn't even need to get the prescription filled).

The good news at that appointment was that Anna's eyes were totally clear of the inflammation. Her regular uveitis check was scheduled for about 10 days after this "Pink Eye Appointment." So we returned to the pediatric ophthalmologist for that appointment, only to find that a trace of white cells had returned to the left eye. Barely a trace, but a trace nonetheless. So we are keeping the same regimen of medication (the Cyclosporine, Methotrexate, Leucavorin, Pepcid Complete) for now. We go back in early January, and we'll see where we are at that point.

Her joints are fine. There was minimal concern about a part of her foot, but the pain she described was descriptive of a tendon issue rather than a joint issue. Anna had an appointment with the family doctor for a checkup last week, and the pain was no longer an issue for her, so it must have just been something minor that healed quickly. Anna continues to grow taller . . . she only needs to grow about an inch and a half to catch up to me! (But that's not saying much, since I'm pretty short!)

We continue to keep busy! Anna is greatly improving on the playing of her bassoon. She has a holiday concert tomorrow night at the elementary school. She sang with her dad at church yesterday (for the offertory) and received a great many compliments. :o)

Since I know some people are reading this blog, I'll do my best to keep it updated more frequently. I'm so glad that other Juvenile Arthritis parents find it helpful.

"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!