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!

Took this picture of Anna this morning, and thought it was a good one. She ran in a Fun Run today (the first time she's done so), and she did well, although she really needs to train and to stretch before she does much more running! This photograph was taken before the 5K (in which her brother participated) and the Fun Run. It was a BEAUTIFUL morning in Pennsylvania!

A HUGE step in the right direction . . . . GREAT NEWS! Another ophthalmologist appointment today, and it was one of the best appointments in a very long time. No inflammation at ALL!!!! Anna isn't always aware of everything that's being discussed at these appointments (the doctor takes notes while facing away from her but towards me, and even though I can hear him talk to his assistant, Anna can't), and when I told her afterwards that her eyes are totally clear, she was thrilled, and then asked, "So why do I need to keep taking all of this medicine?" :o) We can't go "cold turkey" on the meds . . . . they are what's keeping the inflammation at bay for right now. But at least we can start to make little changes. For the next six weeks, we'll go from two eye drops down to one per day. But we'll keep the Methotrexate and the Cyclosporine (and Leucovorin and Pepcid Complete) at the same levels. Maybe we can lower the Methotrexate or Cyclosporine in six weeks. We'll see. But in the meantime, we'll be happy and grateful for this reprieve! A great way to start the school year coming up. We'll just hope we can keep lowering med doses. As I always tell all of those who I e-mail with this information, thank you ALL so much for your prayers. I know that God could choose to heal people if He wanted, but I also know that He has a greater purpose for the journey He sometimes allows us to travel, even when it seems like a heart-wrenching and painful road. I'm just grateful for now that we're at a plateau were the view is NICE!

Anna had another eye appointment yesterday. The good news (I guess it's good) is that her eyes are the same as a month ago (that means that her right eye is clear, I believe, and the left eye still has some cells there, but much improved since the spring---February and March). We continue with the same treatment. I guess it's a good appointment since nothing is worse. I was just hoping for more improvement, so that we could start decreasing medications; my expectations were too high, I guess, so I'm just a bit disappointed. And then sometimes I think of the "what ifs"---Anna's eye pressures were hovering in the low 20's (they took three pressure readings from each eye), and I worry that if her pressures rise, then we'll need to take her off the Pred Forte drop to her left eye. And if we do that, will the inflammation get worse? She's already on a generous dose of Cyclosporine, so if we have to stop the Pred Forte drops and the inflammation worsens, will that mean that we need to think about Remicade or Humira again?

Nevertheless, I always tell my kids we can't live in the "what if's" in life. I need to NOT worry about tomorrow, because tomorrow has enough worries of it's own. Just live in today and be at peace that for now. Anna's eyes aren't any worse, and for the next six weeks, we stay with the course that we're on.

Anna had to get some water in a little bottle for science class, and the teacher requested that the kids try to get water that was not from the tap! So we went to a nearby creek to get some. We stayed and Anna splashed around for about 45 minutes, before we had to pick up Abby from work. She probably would have stayed until sundown if we had the time! Next time we'll make sure she has her swimsuit on!