Monday, December 24, 2007

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!

Thursday, December 13, 2007

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!

Friday, November 23, 2007

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

Friday, October 26, 2007

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.

Friday, September 28, 2007

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!

Wednesday, September 05, 2007

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!

Saturday, August 11, 2007

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!

Thursday, July 26, 2007

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!

Friday, June 15, 2007

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.

Wednesday, June 06, 2007

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!

Monday, May 14, 2007

Good News today!!! Anna's eyes continue to improve. The right eye is clear; the left eye has trace cells. We can eliminate the dilating drop at night to the left eye and the daily Pred Forte drop to the right eye. We can decrease the Pred Forte drops to the left eye from three per day to two! Any little change as far as decreasing medications or eliminating medications is VERY good!!!! I continue to pray, though, that a decrease in Cyclosporine is in the near future. I'm not a big fan of some of these potent meds.

(Anna's eye pressures are decent, also. Right eye is at 20---that should go down now that we are eliminating the Pred Forte drop. Left eye is at 17, which is a good number within the normal range).

Sunday, May 13, 2007

A BEAUTIFUL Mother's Day on City Island in Harrisburg. Getting out in the sunshine and gentle breeze with water nearby really helps to lift the spirits and is a balm for the soul! We'll see the ophthalmologist tomorrow and find out how Anna's eyes are doing.

Tuesday, May 08, 2007

We enjoyed a beautiful and fun-filled day at my cousin's/uncle's farm on Saturday. Anna receives her Methotrexate shot on Saturday afternoons, and she was thrilled that a "professional nurse" (my cousin) was available to give her the shot instead of mom! My cousin has lots more practice. (I was relieved not to have to do it this week, too!)

Tuesday, April 24, 2007

Friday, April 20, 2007

Well, a reprieve of sorts. I was rather nervous sitting and waiting for the verdict on Anna's eyes this afternoon, and I didn't take any reading material today. Spent all the "waiting" time praying for peace and acceptance of "wherever we go from here.". (I know so many of you have been praying, and I know God answers prayer, but I also know that He allows us to travel some journeys for many purposes, so He doesn't always---in fact, rarely does He seem to save us from the tough times and sometimes the nightmares of life.)

And the verdict from the ophthalmologist was . . . ."Better." Not a "let's celebrate, WhooHoo! better", but more like a hesitant "better." We keep doing what we're doing (Methotrexate, Cyclosporine, Pred Forte drops, dilating drops, Leucovorin), and we get to stretch out the time between appointments to THREE weeks instead of one or two (now I am definitely celebrating THAT fact!).

Wednesday, April 11, 2007

Well, last appointment was Friday (April 6). Anna's eyes are slightly improved, but not nearly where the ophthalmologist wants them to be. He had a lengthy (for him) discussion with me, and he really feels that we're heading towards Humira or Remicade. Neither of those sounds very fun for me to explain to Anna (Humira injections really hurt, and Remicade means being at the hospital for a few hours every 6-8 weeks for an infusion.) I'm also nervous about the cost---what insurance will cover and what we will be expected to pay (for either one of the options). The Cyclosporine itself is very expensive, although once we paid our prescription deductible, it's down to $35.00, so that's not too bad (when you consider that the retail cost of 100 mg for 30 days is over $191!).

I'm at a point (especially last week) when I really didn't want to think about arthritis or anything associated with arthritis. In my several-times-daily talks with God, I keeping telling him, "I DON'T LIKE THIS PART OF THE JOURNEY!" He hasn't promised to take it away, but He keeps telling me that I'm not alone---that's He's still right by my side.

I know down deep inside that once Anna gets used to whatever might be next, she'll be courageous and accepting, even if she doesn't like it. That doesn't stop any of us from just being sad that we even have to think about some unfavorable options (besides the fact that she probably will still need the Methotrexate injections and some of the Cyclosporine also, to start out with, as per the explanation of the ophthalmologist.) Does anyone with a heart ever want to tell their child that they will have to regularly receive a painful shot or spend hours at the hospital every few weeks with an IV dripping in? I'm still going through the grieving process and will eventually get to the point of grudging acceptance and then I'll be able to put on my strong and courageous face for Anna's sake.

Monday, April 02, 2007

Arthritis and Uveitis don't take up our whole lives! Spent a day at the regional level of National History Day (Anna's brother, Joel, wrote a paper). Had some downtime while there!

Monday, March 26, 2007

It'll soon be a year since I last posted (life is BUSY!!!!), and Anna's eyes have changed . . . not for the better. A few months ago, Anna's left eye had significant inflammation. We tried increasing the Methotrexate. No change. Added Cylcosporine. In two weeks, the inflammation was even worse. Now we've increased the Cyclosporine and added Pred Forte drops (and a drop at night to dilate her left pupil). As of Friday past, there was some improvement (probably due to the eye drops). The eye drops can only be temporary, because the Pred Forte drops have a history of making Anna's eye pressures rise. This is a very bumpy part of the JA journey. A little scary. Friends and family have been so supportive and encouraging. What would we do without our support system? Thought I'd post a new picture or two. Anna's brother Joel saw the last picture, and he said, "Mom, that's a REALLY old picture. You need to post a new one."