Monday, November 28, 2011

Easy to be Thankful This Year . . . .

With such good news in early November, I should have updated this blog long ago, but I was sidelined by illness and then recuperation and then the Thanksgiving holiday, with good and precious time spent with extended family.

We work at being thankful in ALL circumstances, knowing that "this is God's will for you who belong to Christ Jesus." (1 Thessalonians 5:18 NLT) Sometimes that's a challenge (when life brings circumstances that are difficult and puzzling and worrisome), but for the past few weeks, it's been very easy to be thankful where Anna's eyes are concerned. NO INFLAMMATION at all in both eyes! We had gone from June through mid-October with this report, and then a few trace cells showed up in October (as per the last blog post). But from now until January (next eye appointment), we can set that concern aside and appreciate the joy and relief this news brings!

We know that at all times, God surrounds us with His unfailing love and carries us through the tough times. But how good and pleasant it is when we can get down from His arms and run alongside Him, laughing and dancing with joy! For every parent who is struggling with their child's arthritis issues, I'm praying that Anna's journey will continue to encourage you (knowing that there ARE moments along the way when you may experience relief--and "run and dance with joy."). For those who continue to struggle to find the right combination of medications to bring relief from the pain or to settle down the inflammation that uveitis brings, I pray that you will know and experience the "anchor for the soul" that our family knows---to keep you grounded through the stormy weather.

Monday, October 31, 2011

Keep on Walking . . . Same Meds for Now

Anna had appointments with both the pediatric ophthalmologist and the pediatric rheumatologist in mid-October. While I wanted to be really optimistic about the possibility of lowering some medication doses (since her eyes had been clear since June), I'm also a realist at heart. I've learned in the past twelve years to go into appointments with NO expectations (good or bad). Life just is, and we deal with each day as it comes. Good thing I didn't have my heart set on lowering the medications, because a trace of inflammation has returned to Anna's left eye. Not bad by any means, but no longer clear, as the past two appointments had revealed. We stay on the same doses of Humira and Methotrexate for the foreseeable future.

So Anna is back on Pred Forte eye drops---twice a day, in hopes to nip this new little flare in the bud. He started out by prescribing it once a day, but changed to twice a day when he had his assistant take the pressure measurement. In the left eye, it was 13. While that's a good number, it's significantly lower than the previous two appointments. One time (long ago), he mentioned that often when there's a flare of inflammation, it can be accompanied by a lower pressure number. I'm guessing that he thinks that number is more indicative of a flare of inflammation rather than a fluky, short-lived little bump in the road.

Anna's joints are fine. We're in the process of thinking about the second phase of orthodontics (braces are SO expensive, so this is long-term thinking at this point). But since we're thinking about that, we're going to schedule an MRI of the jaw in the early part of the new year. The pediatric rheumatologist wants to check for any active arthritis in the TMJ before we begin any orthodontic process.

While this news may not be the best, I find that we have so much to be thankful for (Anna has rarely experienced side effects on these very potent medications; we have wise, caring, and skilled physicians caring for her--and only 20 miles away from our home---we don't have to travel for hours to see specialits; she's adjusted to getting shots every ten days, and no longer cringes at the smell of alcohol even though she still can't stand the smell). I'm a firm believer in focusing on the positive. Every day is a gift (to each of us), no matter whether we have medications to take or some pain to live with. God loves us, but none of us was EVER promised a perfect, carefree, or long life. In fact, just the opposite. ("I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world." John 16:33 NLT) Nevertheless (LOVE that word!), we hold on to our faith, our anchor (Jesus--our hope). God can and does use EVERYTHING (good or bad) to show us (and others through us) His love and His presence in our lives. We continue to experience that. And we keep on walking, knowing that never once in this life have we ever walked alone.

Tuesday, August 23, 2011

Enjoying the "Gorgeous" Moments of Life . . . .

My brain is constantly going . . . sometimes that can be a good thing (other times not so much). But this past week, especially, I was thinking how this Juvenile Arthritis Disease can cause so many parents to wonder about the future, and to worry in the present (believe me, I know---I did that probably for the first five years after Anna's diagnosis). Sometimes, even when you're having some good days (weeks/months), it's easy to worry about what lies ahead, or to worry about the medications your child is currently taking and all of the boatload of side effects which are possible.

And then, this week, in "regular life," (as opposed to "JA life"---we all wear so many "hats" in life, don't we, and need to divy out attention to many parts) I was paying attention to the weather forecast. We are having GORGEOUS days here in Pennsylvania. There is a huge high pressure system giving us low humidity, beautiful blue skies, cool mornings, and comfortable mid-day temperatures (my kind of "perfect" weather!). BUT, there's a hurricane stewing in the seas and making it's way towards the east coast, so it may very well affect us in within the next few days (no one knows to what extent). Now we on the east coast have some choices. We can choose to focus on the hurricane---worry, cower in fear, and totally miss out on the present gorgeous weather. I like a balanced approach. Be aware that a hurricane could come, but don't miss out on taking full advantage of these beautiful days.

So what does that have to do with Juvenile Arthritis and Anna in particular? (Bear with me here, as I bring this all together.---I'm feeling "wordy" today.) We had GREAT news today. Clear eyes AGAIN---eight weeks after the last "all clear of inflammation" report. Two whole months with NO inflammation, after years of flares and trace cells. (And this, after over six weeks of fighting the new insurance company, and stretching out Anna's Humira doses to ensure that we would have enough until the new insurance company decided to approve the medication.) Do we even dare to think that maybe, just maybe, we can try (at some point in the near future) to decrease some of Anna's medications? For now, we can cut out the Pred Forte eye drops. In another two months, if Anna's eyes are still clear of inflammation, then we will talk about BABY steps of decreasing medications (the eye doctor has one patient whose eyes were clear for over five months, so they began decreasing medication, only to have everything really flare up again.) So BABY steps.

Here is where I have some choices (like enjoying the gorgeous weather, or worrying about the approaching hurricane). I am choosing to be aware that flares may be in the future for Anna. I have no control over that. But I am choosing to celebrate these "gorgeous" days of eyes with no inflammation---for a longer term than she has experienced in probably over a decade! There's Scripture in the book of Matthew that speaks to such things---not worrying about tomorrow, since today has enough worries of its own. No matter our circumstances, we can choose joy or worry (sometimes it's a struggle, and for our family, it's a bit easier to choose joy today---easier than for some JA parents, I know, whose kids are in pain or experiencing some tough times.)

Thursday, July 21, 2011

Insurance Issues

I debated about sharing this issue, but I thought that maybe some other JA parents might face similar situations and may need to know that someone else is in the middle of this little battle. This journey is a whole lot easier to navigate when you know that others are walking ahead and beside and behind---those ahead can lend moral support and offer some wisdom; those beside sometimes help to prop you up when you're feeling weak (and vice versa); and those behind are often watching your steps---you can point out a few places that might be tricky or give some advice on the best path in a rocky terrain. For me, as a believer, I also know that as we walk this journey on earth, we are never alone, and Jesus is always drawing us to a better understanding of God and His tremendous love for us---no matter the circumstances He allows us to encounter. I can place my trust in Him, knowing that He loves my children even more than I do! His plan is for their good, and He makes beauty from ashes.

We encountered a little glitch in this JA Journey which I just found out about today. Anna has been on Humira (along with Methotrexate) for about two years now, I believe. Her joints seem quiet for now, and her eyes, as my last post indicated, are clear for the first time in a very, very long time. However, my husband's employer changed insurance contracts. Changing from one very reputable company to another very reputable company, with the promise that the coverage is nearly identical. The changeover date was July 1st. Since we had ample notice, and since Anna had an appointment with the rheumatologist in early June, I mentioned this change to him. He promptly gave me the name and contact information of the administrative person in his department who takes care of all of these specialty medications (like Humira), with advice to call her as soon as I received the new insurance cards and information.

So we did all of that in early July---got the name of the specialty mail order pharmacy which this new insurance company uses, gave the information to C.L. (the administrative person), and had a few conversations with customer service reps for the insurance company as well as C.L. (Oh, and before July 1st, I made sure that I ordered one more delivery from the previous mail order pharmacy, so that we would have a good supply as we make these changes.) So C.L. called me this afternoon. The new insurance company has denied the Humira. They say that it's not a medication to treat Juvenile Arthritis, and besides that, their limit on Humira is two syringes per month (we've been getting four--Anna gets a shot every 10 days).

So I said to C.L., "What's the next step?" She said the next step is to appeal--their department (and Anna's doctor) will go to battle with the insurance company. Can I tell you that I'm not all that upset about this yet? (I think my husband was rather perturbed---usually our reactions to such things are the other way around!) Right now I'm feeling rather calm, thinking that this insurance company does NOT know how many children are being treated with Humira, and it's making a huge difference when other medications have stopped working (at least in Anna's case---she doesn't have many options left). Maybe another reason I'm not too upset right now is that I remember when Anna's pediatric rheumatologist first prescribed Humira for her. He was telling me that the insurance companies usually reject it at first, but they go to battle, and he said (with confidence), "We always win."

Saturday, July 09, 2011

Great News -- Long Time Coming!

Sometimes life gets in the way of posting even GOOD news! Anna had an appointment with the ophthalmologist towards the end of June, and we had GREAT news! For the first time in I forget how many years, Anna's eyes are clear of inflammation. BOTH of them. We go back in August to see if she maintains this status. (I've been on this journey way too long to even get excited about the possibility of long-term uveitis remission). But we ARE excited about two whole months without visits to doctors in Hershey (not that we don't like them---we just see them a little too often sometimes).

The pressures in both eyes were in the low-to-mid twenties, which is inching toward high, but the ophthalmologist wasn't overly concerned. We can decrease the Pred Forte drop to the left eye from daily to every other day. Humira and Methotrexate stays the same for now.

Anna is enjoying a rather laid-back and care-free summer. We've been to New England (LOVED that trip and hope to go again sometime). She's training for middle school cross country running in the fall (which means she's supposed to run at least 100 miles this summer), swimming at the town pool, reading books, and watching movie commentaries (you learn SO much by watching commentaries on movies!--some of them are fascinating, interesting, and even sometimes humorous!) She's also been intentional about expanding her "palate" :o) She's decided to try more and different foods this year, including tomatoes and onions! I didn't even ask her to.

Wednesday, June 01, 2011

Long Overdue Update

I have been remiss in giving an update to the few faithful readers to my blog. So sorry! As usual, life has been full, and when I've had a few moments, I've either just wanted to not be on the computer, or else other family members have been on the computer. No more excuses! Anna had an appointment with the ophthalmologist right before Mother's Day. His exam showed the same results as the last several visits---clear in the right eye, just one or two cells total in the left eye. So once again, he is pleased, and we have no changes to the eye drop (once daily to the left eye) or the systemic medications. We go back for another appointment in June. Anna also sees the pediatric rheumatologist in early June (really just a week from Friday). I don't really have any expectations for that appointment, since Anna never really complains, even when she has had active arthritis. So we will see. Sometime between now and next Friday, we need to take her for overdue bloodwork. (We get that done in Hershey, and last time we were in Hershey for her eye appointment, she had a bad cold. I don't like getting labs done when she has a cold, because a virus can really skew the numbers and cause unnecessary worry.)

Anna remains active! Since she has completely healed from her appendectomy in February and her micro-fractures to the elbow in April, she has started running again. She plans to join the middle school cross country team in the fall, and she needs to start running regularly NOW to be in shape for that. We spent a day in New York City with the special ensemble (group of 7th and 8th grade singers) in May (lots of walking---no complaints). Anna's summer pass to the community pool has been purchased! And we're slowly but surely redoing her bedroom. It will be a BUSY summer!

Saturday, April 09, 2011

Another Adventurous Week!

Wow! From Wednesday to Friday, life has been a little crazy. On Wednesday afternoon, Anna had her post-op appointment to see how she's healing from her appendectomy. She's fine! Feels like a normal kid. So what does a normal kid do once we get home (on a nice spring day, I should add)? She goes outside to rollerblade in the park! Great exercise! She came home a little worse for wear, cleaning up brush burns and asking for band-aids (I added the neosporin). About an hour later, Anna talked about how her left arm felt a little heavy and tired. We (hubby and I) asked many questions, but didn't see any swelling (and her range of motion wasn't all that bad), so we gave her Tylenol and some ice to keep on the injury. A few hours later, Scott thought that there might be a little swelling, and he was concerned about her diminishing range of motion, but if we went to the ER at that time of night, we would have been there all night. We chose to get some rest and call the doctor's office in the morning.

Thursday morning--Even the triage nurse wasn't totally sure that Anna needed to be seen, but we decided on an appointment after school. So our favorite Doctor Joe gave Anna a thorough exam of the elbow and arm, talking about possibilities of fluid in the joint (I'm thinking swelling from the injury---not arthritis), and very possibly a crack/fracture of the radial head. He ordered x-rays done on Friday. So off we go---trip to Lemoyne (horrible traffic through Camp Hill, as always)to the Heritage Diagnostic Center (love that place and the people there!). At 4:30 p.m., I found a voicemail message on my cell phone (I'm not a huge cell phone user, and it was in a pocket of one of my fall jackets) from Dr. Joe's office. Long story short, I had about 20 minutes to retrieve Anna from a neighbor's house and once again head through that horrible traffic (worse, actually---rush hour on a Friday!) to go retrieve Anna's x-rays (by 5:00 p.m., when they closed---got there three minutes after 5, and they waited for us!) and take her to the Orthopedic Institute of Pennsylvania, where they had an injury clinic open until 7:00 p.m.

The radiologist at Heritage Diagnostic Center thought there was a fracture (hence the rush to get into OIP to at least get a sling or splint or something for protection over the weekend). The orthopedic doctor at OIP didn't see any fracture, though. It's probably just severely bruised. They did provide a sling, though, which is good. Anna's arm was heavy and "dragging" with the injury, and they were concerned about her neck and shoulder muscles being pulled because of that.

The one bright spot to a rushed and stressed Friday evening---the Physician's Assistant at OIP looked at the x-rays and said, "Well, I really don't see any fracture, but I'll have the doctor look at it. Anna, you still have some growth plates in there, so it's a little hard to see." Anna didn't know what growth plates were, so when I explained, she's excited that she may not be done growing!!! She would love to be taller!

Hardly ever a dull moment around here, but Anna is ready to have a break from doctors and hospitals for while. She's been in far too many exam rooms in the last two months for her liking. We're having a quiet day today!

Tuesday, April 05, 2011

Anna says "Thanks"! (First published in the church newsletter)

Anna wrote a thank you note for the church newsletter, following her surgery. Since many "internet" and Facebook friends were also praying, and a few sent cards, Anna said I could share her "thanks" on the blog, as well.

Dear Church Family,
It has been over a month since my appendectomy. On Sunday, February 27th, I woke up with pain in my side. My mom took me to the hospital--I won't give you the details--and they took my appendix out.

You have been very supportive of my recovery. With a month gone by, I'm back to my old self, being outside running or rollerblading and being an organized student in school.

I would like to thank the church family for their love and support. I received many cards, some flowers, and visits from Pastor Nancy and Pastor Charlie.

I also thank you for your support in the MASH (Mechanicsburg Area Senior High) musical which was only three days after my trip to the hospital.

Finally, I would like to thank God for all He has given me in this life. I am so blessed to have a church family who love and support me as I grow in life, physically and spiritually.

God is watching out for all of us, and we are blessed.

Love, Anna Zeigler

Friday, March 25, 2011

Explaining Interoccular Pressure (Update Included)

Brief update: Anna had an appointment with the ophthalmologist yesterday. Routine results: still a trace of cells in the left eye; right eye clear. I'm thinking maybe this is normal for Anna. Still on one Pred Forte drop per day to the left eye and all the same medications. Anna's "pressures" are always checked before we leave the office. The nurse (or assistant---whomever she may be) made faces when she looked at the numbers. The first number (right eye) was 22; the first left eye number was 21. She took them again with results of 21 and 19. Not the best pressure numbers Anna has ever had. However, the nurse/assistant checked with the doctor before she let us leave, and I guess he didn't have a problem with them, because he didn't have her check them again, and we go back in six weeks.

Anna was wondering exactly what are the "pressures" which they measure. I tried to explain it, although it's been quite a few years since I researched and read everything I could. So today I sat down and "googled" to find an explanation for her (and anyone else who might be interested). The website at says:

"Intraocular pressure is a measurement of the fluid pressure inside the eye. This fluid, or aqueous humor, nourishes the cornea, iris, and lens, and it helps the eye maintain its globular shape. The typical eye produces about 4 c.c. of fluid a day, which is circulated and then drains out of the eye.

What causes intraocular pressure?
If the drainage system becomes clogged or if too much fluid is produced, pressure inside the eye can build up. The reasons for buildup are not fully understood.

Increased intraocular pressure can also result from the use of topical steroid eye drops such as those used in the treatment of an inflammation within the eye. Although these medications may be necessary in the treatment of the disease, they can cause a temporary elevation of intraocular pressure.

Normal eye pressure, as measured by an eye doctor, usually ranges between 10 and 21 mm of mercury, with an average of 16. Physical activity, stress, rapid fluid intake, and caffeine can account for a small plus or minus change in an intraocular pressure reading. Pressure that is consistently above 21 indicates ocular hypertension. The condition can develop into glaucoma, a serious disease that causes damage to the optic nerve. Because glaucoma is the leading cause of blindness among adults in the United States, early detection and treatment are key to preventing serious loss of vision or blindness.

How is intraocular pressure measured?
Intraocular pressure is measured with an instrument called a tonometer. There are two types of tonometers, but the most accurate is considered to be the applanation tonometer, an instrument that looks like a pen. After numbing eye drops are administered, the instrument is applied gently to the front surface of the eye and provides a pressure reading. The other type of tonometer is a noncontact tonometer, which directs a warm puff of air toward the eye without touching it."

Since I'm a visual learner, I thought I would also include some images (seen above, obviously): one of uveitis (what the ophthalmologist sees with the slit lamp exam---although this image is a much more severe case of uveitis than Anna has), and one showing the effects of increased interoccular pressure (Anna's are really just on the borderline of being normal, though, so no worries at this time).

Wednesday, March 16, 2011

Speedy Recovery!

Today is two and a half weeks since Anna's emergency appendectomy, and I just wanted to say that I have never seen someone recover from surgery so quickly! These photos (courtesy of Dennis Baker Photography) were taken just two days following Anna's surgery (dress rehearsal for the musical). So many people were praying for Anna, and I thank all of you! My mind kept going back and forth between being thankful that this surgery was not holding Anna back in any way, to being worried that she was doing way too much too soon.

As far as we can tell, neither the surgery nor the musical (with it's demanding schedule) has had any effect on Anna in regards to the arthritis and uveitis. All remains calm on the those fronts. Several appointments coming up in the future, though, to check everything out. Eye appointment near the end of this month, post-surgery appointment in early April, and pediatric rheumatologist appointment in early June.

Monday, February 28, 2011

Unexpected Adventure

Friends and family on Facebook already know about our adventure this weekend. I thought, though, that it would be important to include this adventure in Anna's JRA blog, especially as it relates to her disease and medications. Anna had an emergency appendectomy on Sunday afternoon. Everything was very routine. I had my appendix out when I was about the same age as Anna, so I was familiar with the classic symptoms. I called our family doctor before taking her to the ER. He said she should be evaluated at the ER and not wait until Monday. We have four different hospitals within a 20-mile radius of our house. I've learned from past experiences with Anna and her brother Joel that it's just best to go the Hershey Medical Center ER (long story on all the reasons). This is especially true for Anna, since her pediatric rheumatologist (the one who prescribes her systemic medications) practices at Hershey Med. The Medical Center uses a computerized (paperless) system, so all of her current medications are listed in her extensive computerized file and anyone who is treating her has access to all of her information.

As the day progressed, I was reminded of the many reasons why our choice of hospitals was the very best for Anna. The pediatric surgeon (as well as the ER doctor and resident) was very aware of Anna’s medical issues and her medications which suppress her immune system. The surgeon was also aware that because of Anna’s issues, the MRI may or may not have given her a clear picture of how much the appendix was inflamed and/or how close it was to perforating or rupturing. She wanted to get Anna into surgery as soon as humanly possible, because she didn’t want to risk the organ rupturing with Anna’s immune system being suppressed. In addition, the surgeon wanted to take extra precautions and prescribed several IV bags (maybe three?) of antibiotics to be dripped into Anna’s system before she issued discharge papers.

We are now home, and Anna is making very steady progress in her recuperation. Because her Humira is taken every ten days and the Methotrexate once per week, we should have no interruption. We’re just working to get caught up on our rest! I forgot how little sleep people get while in the hospital, when good, quality care (as listed on their bulletin board in the room) means hourly checks to the IV and incision sites by the nurses, and frequent visits from surgical residents (all through the night), plus crying babies on the pediatric floor (they didn't realize that people were trying to sleep!)

I don’t know if any of this will be helpful information to other JA parents, but I wanted to share it just in case.

Saturday, February 12, 2011

Perspective for the Journey -- Another Update

After eight weeks of no appointments for Anna, she had two appointments this week--one (Wednesday) with the pediatric ophthalmologist and one with the pediatric rheumatologist (Friday). On Wednesday, the ophthalmologist found her right eye to be clear, and the left eye still with a trace of inflammation. However, he was happy with this! We continue with all current medications (which includes one Pred Forte drop to the left eye once a day). Her pressures are still satisfactory, although the first reading in the left eye was 20---but he had the assistant take it again, and it was lower. Anna told me later that she saw me wince when the assistant said "20." Anything 20 and above makes me a little nervous.

So then I took Anna to get labs done (no problem!---and out within five minutes. I remember the days when labs were traumatic for her, though!) Then back to Hershey on Friday for the appointment. Nothing out of the ordinary, there. No problems with joints.

I've noticed as Anna gets older, the she speaks up a whole lot more about what's going on with her body. (That's good! If she's beginning this at 13, by the time she's 18, she'll be well-versed and a "pro" at this!) Something new this time was a checklist of anything she may have experienced since her last appointment. I let her go over the list, and she did check "headaches." But she doesn't often mention that at home, so it could be related to anything, not necessarily the disease or the medications. She also told the doctor that when she opens and closes her jaw, she can hear clicking. He listened with the stethoscope against her TMJ, and then let Anna listen through the stethoscope, as well. :o) He thinks it's most likely the fact that Anna's TMJ's have a little damage, so the joint is not smooth, therefore it makes noise when it moves. Measurements of the jaw and of the legs show very little difference, and that's good, as well (even when Anna has active arthritis, she rarely complains of pain, so we rely on measurements to indicate any activity).

So all is steady on the arthritis "homefront" for Anna. Her doctor always mentions options if we should have to change anything, and Orencia is probably the next medication on the table. He does NOT like Remicade. He discussed a few of the pros and cons of Orencia and his preference for it over Remicade. (This is good for me to have the information ahead of time---I deal with it better if I can know and read up on things and mentally prepare myself for any possible next step.)

So that's the update on Anna. As I was thinking about what to post, I was remembering that some of the people who read this blog are parents who are relatively new to this "JA Journey" as I call it. Some have thanked me for giving them hope for the future. I remember when Anna was first diagnosed over 11 years ago. I sometimes feel like I'm on a long journey which has some rough patches, challenging spots, yet some other stretches that aren't quite as difficult (it's during those stretches where you can enjoy the view around you rather than focus on the rocky path). I was also thinking that being 11 years into this, I pause every now and then to read what "new" JA parents are writing in blogs and on Facebook, and remembering that I was once where they were, with all of the questions and unbridled passion to gather information on this disease, and worrying about anything and everything from joints to future damage to medications and their side effects. At first everything is very scary and worrisome. That's not to say that I don't have moments of fear and worry now, but not nearly so much as before. I've gotten my "sea legs"---the little ripples and waves don't leave me scrambling to find my balance. I still need to thoroughly and constantly think things over, but I've also learned how to balance out my worries and balance out family life.

I also remember that in the beginning, my bottom line was to find out as much as I could to help me make informed decisions and have a thorough understanding of the disease and the doctors' decisions and the medications, yet not allow the disease to consume our lives. I think I probably let it consume my life for the first few years, at least! (Even though I vowed not to.) It has been a learning process. After years of reminding myself, "Our lives are NOT all about Juvenile Arthritis---that's just a very small part of who we are as a family.", I finally believe it, and work to ensure that it's a reality---that Juvenile Arthritis does not define us.

Above all, my faith in a steadfast, loving God has kept me grounded. I still mull over life and death and diseases and other struggles in life, yet always come to the conclusion that every single day of life on this earth is a gift. No one is guaranteed a long earthly life or a happy earthly life or an easy earthly life (Jesus even said/promised, "In this world you will have trouble . . . "). But we ARE promised that God walks with us each day, revealing Himself (His character) to us in big and small ways. Throughout this journey (plus other family journeys throughout the years with young nephews dying and my older daughter's increasing food allergies and my son's speech issues), as I've struggled with questions, I've seen glimpses of God, and I've found my faith growing stronger. Even though the journey may be long and rocky, we are not without hope, and I love the fact that we (who have been at this awhile) can offer empathetic encouragement to those who are just getting started.

Thursday, January 13, 2011

Finally another update!

Anna had an appointment with the ophthalmologist two days before Christmas. We had so many activities and family get-togethers, etc. since then that only now am I taking some time to give any loyal readers an update. So sorry!

The news was good! Not outstanding, but good nonetheless. The doctor found that Anna had barely a trace of inflammation in each eye. He was happy about that, so I think we can be happy, as well. I would love to hear "all clear" for many months so that we could begin (just maybe) to think of lowering medication doses instead of always being aware of what new and powerful medications are "in the pipeline" and "on the table" should we need to consider other options (there aren't many left at the moment).

A friend asked (in the comments on a previous post) why a trace of inflammation worries me. I had to think about that. I'm not sure that I'm all that worried about it anymore. Anna has had a trace of inflammation for years now, so I've become accustomed to hearing that verdict, and her life has been relatively fine with a trace of inflammation. If I have an underlying worry, maybe it's the thought that the longer we go without a verdict of "all clear," the longer we wait for just a glimpse of hope that we may someday start to lower the doses of medication. This is just an inner struggle of mine, because down deep inside, I know that I need to take each day as it comes and not worry about "tomorrow" (since today has enough worries of its own), knowing that our lives are in the hands of the Lord Jesus.

The ophthalmologist was pleased enough that we could decrease the eye drops to the left eye from twice a day to once a day. I think another reason he made that decision was that the pressure in Anna's left eye was higher than the right eye---still within normal range, but we don't want it to get any higher, and the Pred Forte drops have a history of increasing the pressure. We go back in early February for another check on the eyes, and to the pediatric rheumatologist in February, as well.

Other than these doctors appointments and the weekly oral Methotrexate (and accompanying Leucovorin), daily eye drops, and a Humira injection every ten days, life for Anna is basically that of a normal, active 13-year-old. She's active in youth group and sings with the chorus and special ensemble at school. She played the bassoon in the holiday concert at school, as well. Anna has a little job (running a vacuum for an older friend every two weeks), and she now has a role in the high school musical (playing an animal in "Children of Eden") in early March.