Tuesday, July 26, 2016

Shifting Gears, Transitions, and Distractions . . . .


We are truly shifting gears in this JA Journey, which we have been traveling now for 17+ years.  I've mentioned before that Anna has been taking the reins lately.  She is decisive, and one of her decisions was to say good-bye (along with a huge "thank you" and a hug) to her pediatric ophthalmologist.  We saw him two weeks ago, and she told him then that she has decided to pare down to just one eye specialist, and she has chosen the retina specialist. Makes good sense, since the retina specialist has all the instruments she needs at the medical center to do what needs to be done as issues arise with Anna's eye.  The pediatric ophthalmologist does not, as he is in private practice and has to send us to see someone at the medical center when the macular edema recurs.  Anna thought this was also the perfect time, since she has aged out of pediatric rheumatology and will be meeting her adult rheumatologist in about two weeks.

Anna has also begun to keep her own calendar of appointments.  This is especially important since she will be moving to her college campus in less than one month, and since she will be keeping better track of her class and activities schedule than I will.  It's time for me to step back (believe me, this is not easy, especially since Anna is our last child to leave home!), but I feel like I'm making progress as a mom.  (If some of you are praying about this for me, THANK YOU!!!  I can feel your prayers as the Lord is shifting my emotions and attitudes and my worry as I continue to let go.)

Does this mean the end of the this blog?  I don't think so.  I know many who continue to search for stories to see what the future may hold for their child with Juvenile Arthritis and uveitis and TMJ issues.  Since this is what I was searching for 17 years ago, I want to provide this for others who need it.  I will continue to share as Anna moves forward.   I don't yet know how we will fit college classes, doctor's appointments, Remicade infusions, etc. all together, but we won't know until we try it.  Anna has scheduled her classes so that she has three mornings free.  She worked with the Lancaster Cleft Palate Clinic to reschedule her team appointment (that's tricky---they only schedule team appointments two Tuesdays per month), so that she won't miss class.  It will help that her college is just six miles from home, so she can still get to the local appointments and not necessarily have to wait for fall break or Thanksgiving or winter break.

As for an update:  We believe that the Periocular injection (steroid into the back of the eye to treat macular edema which Anna received a month ago) is working.  Two weeks ago, Anna had just a haze of protein, but no cells of inflammation in her left eye.  "Yay!  And finally!!!"  Although her vision is not quite back to 20/20, the vision test results were much better than last month.  So we believe that the swelling in the back of the eye (the macular edema) is receding.  They decided to reduce the frequency of the Pred Forte drops, and she will see the retina specialist in about three weeks for another exam (and an OCT, which will show us a picture of the back of Anna's eye).

We did have a little distraction.  Anna always has blood taken for labs prior to her Remicade infusion.  The results showed some abnormalities, and I probably should not have researched what "smudge cells" indicate before hearing from her doctor.  (Sometimes I check the results of her labs on the Health Portal system, especially when she's had some abnormalities in the past.)  That was new, and the search results were worrisome to say the least!  (Practice for me in calming myself down!)  But her pediatric rheumatologist (he's still monitoring her until she sees the adult rheumatologist) ordered more labs, had them sent to pathology, and the results today showed that they are back to normal.  What a relief, and thank the Lord!  He thought that would be the case, since her other numbers were not way off base, but he wanted to be cautious and double check.

Tuesday, June 21, 2016

Periocular Injection Today


When Anna was first diagnosed with uveitis (probably over 15 years ago---the years are started to mesh together), I remember reading and researching a LOT about treatment options.  And there was a time (over 10 years ago) when her pediatric rheumatologist told me about another one of his patients who had a steroid injection straight in the eye in order to get some stubborn eye inflammation under control.  At the time, I could hardly even think about such a procedure.  I did ask her ophthalmologist about it then, but he was not a fan of the concept (the Intraocular pressures can rise to an unacceptable leven, and there is no way to go in and get the medication out). Besides that, he doesn't have the ability and necessary instruments to do such a procedure in his private practice.  

How can anyone even stand to get a needle into their eye? How could a parent even stand to be in the room while anyone did that to their child?  Well, this morning, Anna did have a steroid injection into the back of her eye, and I was in the same room.  (They didn't ask me if I wanted to be there, and what type of supportive parent would I be if I asked to be excused to the waiting room?)  While I watched the prep (which took a lot longer than the actual  injection---numbing the eye with anesthetic drops, and then a swab of anesthetic until Anna said that the eye no longer felt scratchy), I did not watch them (the doctor, who held the syringe, and the resident, who pushed the steroid into the eye) as they did the actual procedure.  I closed my eyes and prayed for their hands to be steady.

Anna knew the risks.  The ophthalmologist (Dr. M) reminded her of them at our last visit with him, when we told him of the possibility if the macular edema was still present at our appointment today with the retina specialist.  Dr. M would not have chosen this route.  But Anna truly trusts the retina specialist, and she wanted to avoid oral Prednisone, which messed with her mind two years ago, even though it calmed down the macular edema.  And this current macular edema has lasted for several weeks now.  She's ready to have better vision in her left eye again.  The retina specialist today assured Anna that if her pressure rises, we can counter that with different drops.  About halfway through the prep, she asked Anna if she was okay (Anna was), and Dr. N. told her that if really wanted, we could stop, and reschedule it to be done "upstairs" and under sedation.  (We were doing this in the clinic, without any sedation.) Anna was just ready to have it done and over with.

And the verse and song God has given us these past few days?  Psalm 3:3 (see the picture at the top of this blog post).  I was feeling the Lord being a shield around us today, giving us peace and a "let's do this attitude" instead of fear.  I am so thankful for specialists like Dr. N.  And I'm thankful that she sees adult patients as well as pediatric, so Anna can stick with her instead of "aging out" as she is doing with her pediatric rheumatologist, whom we greatly respect.

Friday, May 27, 2016

In the Eye of the Storm . . . . ([God] remains in control . . . )

OCT (picture of the back of Anna's eye in layman's terms) of Anna's left eye this past Wednesday
Well, it's not as bad as it was in 2014, but the Macular Edema has returned in Anna's left eye.  At least this time, we are already established with a Retina Specialist who has a calm but decisive manner and who seems to know exactly what she's doing.  She increased Anna's Pred Forte eye drops and doesn't want to taper until this is under control.  For our next appointment with her in June (four weeks), we have allowed 3-4 hours, just in case the retina specialist (Dr. N.) feels it necessary to do a Periocular steroid injection to stay ahead of the Macular Edema.  (I'm learning new words, and although I did an Internet search to know how to spell it, I'm not quite ready to look at the images.)  I used to not even want to think about an injection into the eye of one of my children, but at this point, I am okay with putting Anna in the hands of this specialist.

This news comes in the middle of a storm of activities and emotions, as Anna prepares to graduate from high school next week and move toward her future as an adult.  There are a wide variety of emotions for us as parents (Anna being our third and last child to leave the nest.) And while we're busy, we're also eagerly anticipating all three of our children being together again next week, and seeing our daughter and son-in-law and grandson who live 12 hours away from us.  We're also constantly thinking of a very dear friend of ours, who seems like family, who is not long for this world, having battled an aggressive cancer for the past 2 1/2 years (and grieving for her family). The Lord is speaking to me again through songs and Scriptures, as He often does in the tougher seasons of life.  On our way home from Hershey on Wednesday, as we were thinking about and praying for our friend and her family and letting the news from the appointment sink in to our minds, the song in the video below was playing on the radio.  I was thinking how appropriate these words are. This song has been playing in my head for the past few days.

In the eye of the storm
You remain in control
In the middle of the war, You guard my soul
You alone are the anchor when the sails are torn
Your love surrounds me in the eye of the storm.

(if you decide to listen to video, listen through to the end---they go A Capella, and it's awesome if you love music and are into that sort of thing--I am!)


Thursday, May 19, 2016

Fix Our Eyes . . . . .


"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart."  Hebrews 12:1-3 NIV



I've been hearing and seeing "Fix Your Eyes . . . ." quite a bit lately---in studying, in songs, in worship services, etc.  I know what it means---we need to focus on Jesus.  Know who He is, and how much He loves us, and remember all of that whenever we are in the midst of the hard things in life.  As I was gathering my thoughts to update this blog, I realized that "Fix Your Eyes" is a great title for this post---not only for the spiritual meaning, but because Anna's eye (that left one) needs "fixed."  

Anna's left eye, this past Monday, was at a 2+ flare again.  Two weeks ago it was down to trace cells.  Sigh.  Last time we had a flare like this (a month ago), her vision was still 20/20 in that eye.  This time, the inflammation was affecting her vision in the left eye---mostly blurry.  (We are SO thankful that the right eye remains clear of inflammation!) So we increased the number of daily Pred Forte eye drops, and increased her Remicade dose from 12 mg/kg to 15 mg/kg.  There's still room to increase the Remicade again if we absolutely have to.  It worked out on Monday that Anna was able to get the increased dose that afternoon.  She had already been scheduled for an infusion, and her appointment with the ophthalmologist was two hours before the infusion.  A flurry of phone calls and confirming with the infusion room nurse took care of everything. 

We go to see the retina specialist next week, and Anna will need an OCT (picture of the back of the inside of the eye) to see if the macular edema has returned.  All of this in the midst of finishing up projects and studying for the final exams of high school, and "senior meetings" leading up to high school graduation.  We do our best to run this race with perseverance--fixing our eyes on Jesus and the joy that is to come.

One thing I wanted to share with all of you . . . . you hear my thoughts in every blog post, but you don't always hear Anna's perspective (her source of strength and her faith).  I was designing her graduation announcements this evening, and there's a place for some text on the back of the card.  I asked Anna what she wanted there, and she gave me a verse from the Bible.  This is Anna's perspective on her life and journey:

My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.  Psalm 73:26 (NLT)





Monday, May 02, 2016

It's that Eye Again . . . . Getting used to Bumps in the Road


In a dream world, as we prepare for Anna to graduate from high school and move on to college and her adult life, we could hope and pray that we could set aside Juvenile Arthritis and Uveitis in the same way we are preparing to put her childhood in the past.  But we don't live in a dream world, as reality reminds us.  Two weeks ago and five days following Anna's last Remicade infusion, the pediatric ophthalmologist looked into Anna's left eye with the slit lamp and surprisingly found 2+ inflammation.  And he said that he could tell by the exam that this wasn't a one-day flare; those cells had been present for probably at least a week.  So we increased the Pred Forte drops to four times a day and went back for another eye exam a week later.  Thankfully, one week of increased drops was enough to calm down the inflammation to just trace cells.  We were able to decrease the drops again.  Pressures were on the verge of being high (21 for both eyes), but the decrease in Pred Forte should help bring those back down.

We've also adjusted Anna's Remicade schedule.  We had been stretching out the infusions to every five weeks, but I called and rescheduled the next two infusions so that she will receive the infusions every four weeks, as initially prescribed.  

Anna has just a few more weeks left in her high school experience.  As we count down the days, we also have many, many events on the calendar (as you can see on the picture to the right, which is my actual calendar for May!---concerts, appointments, prom, family gatherings, etc.  Sometimes these bumps in the journey (unexpected eye inflammation) can cause some fear, but I plan to be very intentional in the next few weeks to exhale and enjoy the present!  Turning away from fear because our lives are in the hands of Jesus, who gifts us with each new day.
 


Sunday, April 03, 2016

Let Me Dream, Let Me Dream for You . . . .


Dream For You

So come on, let Me dream, let Me dream for you
I am strong when you're weak and I'll carry you
So let go of your plan
Be caught by My hand
I'll show you what I can do
When I dream for you

(Bridge)
I'm stronger than you think I am
I'll take you farther than you think you can
You sing and call me great I Am, so take your stand
My child if you only knew
All the plans that I have for you
Just trust me I will follow through
You can follow Me

Mark Hall | Matthew West
© 2014 Atlas Holdings (Admin. by Atlas Music Publishing)
Highly Combustible Music (Admin. by Atlas Music Publishing)
House of Story Music Publishing (Admin. by Atlas Music Publishing)
My Refuge Music (Admin. by Capitol CMG Publishing)
Be Essential Songs (Admin. by Essential Music Publishing LLC)


We continue in this year of transition, with Anna spending a good bit of time studying and finishing up her senior year of high school.  For this second half of the school year, she has a slightly heavier course load (still taking one college class) and less study halls than the first half of the year (frankly, I loved the way it worked out, since that first half of the school year was right after jaw surgery, and she's pretty much recuperated from that trauma at this point).  So that heavier class load sometimes means a whole lot of time at home in the evenings writing papers and reading, etc.  She does squeeze in some time to read, and she takes part in a book club.  She's looking for a job for the summer.

We still make trips to Hershey and Lancaster for appointments, but this month, we only have one trip to Hershey for an eye appointment, and another trip to Hershey for Remicade.  The first week of May will be a busy one, though, with both a trip to Hershey and a trip to Lancaster on consecutive days.  Anna's eyes have been clear these past many weeks (Thank the Lord!)  Joints have been quiet (well, she hasn't mentioned any pain or stiffness lately, but she only really says anything if the pain or stiffness is severe, and that hasn't happened in a very long time).

Several weeks ago, Anna attended a preview day for accepted students at her college.  Her field of interest is very competitive right now, with many young people interested in pursuing the career and not many job openings.  As a mom, sometimes I think about the challenges my children face in life and how that will work out as they pursue their interests and careers. When I've thought about it and worry has crept in, the song quoted above starts playing through my head.  One of those God-things.  The Lord asks me to trust Him with the lives of my children.  As they continue to follow Him, He has promised to direct their steps---He will take them farther than I think they can go! 



Friday, January 08, 2016

Quietly Confident . . . . . beginning a year of transition in Anna's JA Journey

The beginning of this new year of 2016 has already brought reflection as well as looking to the future.  We've been on this journey a LONG time (diagnosed in 1999 when Anna was not quite two years old)!  The uveitis has been the most stubborn; the joints have usually responded well to steroid injections.  The TMJ involvement (discovered several years ago) was an unwelcome surprise, and the recent jaw reconstruction surgery was a major event for Anna and our family.  After a few weeks of treatment for the recent flare of uveitis, her left eye is once again clear, and although Anna was concerned that some small changes in her vision signaled a recurrence of macular edema, an OCT (Optical Coherence Tomography, or imaging of the retina) showed that the back portion of her eye looks normal.  (Praise the Lord!) Overall, Anna is doing well.  (I hope that is good and hopeful news to JA parents who are trying to get a glimpse of what the future may hold for your children---I know that some children with Juvenile Arthritis have more pain and problems than Anna does, and others have had less issues.)

We have an end in sight for the braces---Anna is scheduled to get them off the first week of May.  Now that's exciting!  Just before prom and graduation!

Anna is a senior in high school, already taking college courses through the dual-enrollment program, and she is eager to enroll at Messiah College as a freshman this fall. Her current plan is to study Human Development and Family Studies, with a goal of becoming a Child Life Specialist at a Children's Hospital.  (This JA Journey has been significant in Anna's developing interest and passion for this field of study.)

Graduating from high school and moving into "adulthood" does not mean that Anna gets to "graduate" from Juvenile Arthritis and uveitis.  It does mean, however, that sometime in the summer, she will "graduate" from the pediatric rheumatology department where she has been seen (by the same doctor) since she was a toddler.  There is definitely sadness with this transition, but the positive side of this is that because her rheumatologist knows Anna so well, he has a good idea of the right fit for an adult rheumatologist.  He has a particular adult rheumatologist in mind for Anna.  We've learned to trust his judgment about so much--we're going to trust him with this, as well.

A friend of mine was telling me about a video she recently saw.  I watched it this evening, and thought that this is GOOD---going from fear to quiet confidence.  This video was talking about a job situation, but I also think it can be a description for all aspects of life. When we first started on this JA journey, there was so much uncertainly and fear.  (Sometimes, unexpected flares can be rather frightening, as well as changing medications, and new biologics, etc.) But watch this video (only 6 minutes!)---what if we aren't afraid?  What if this journey has been designed specifically for us by God?  He has walked beside us all along. He continues to walk with us.  We can approach the future (with the changes that are coming) with confidence.







Monday, December 14, 2015

The Unexpected Road . . . . .

We are on the rollercoaster again with this JA Journey.  We were so happy to take the Pred Forte eye drops "off the table" for Anna before Thanksgiving--about 3-4 weeks ago.  Anna has had clear eyes for several months now, and we were so hopeful that this good news would last for a long time.  I do remember that she had clear eyes without drops for almost two years before Humira stopped working for her (in early 2014), and I was hoping that we could get to that point again.

Even though Anna's uveitis is usually asymptomatic, over the weekend, I noticed that Anna's left eye was really bloodshot.  When I asked her about it (and started to think of everything that could cause this problem), Anna was telling me that her vision in that eye was different.  We contacted the ophthalmologist early Monday morning and were thankful that they had some cancellations in their schedule and could squeeze in an appointment for Anna.  The verdict:  2+ inflammation---in just 3-4 weeks without the Pred Forte eye drops (and no missed doses of Methotrexate or Remicade).  Anna is back on the steroid eye drops, 4x daily for at least the next week, and he will see us again on Tuesday.

I feel like Sunday was the worst day---knowing something wasn't quite right, but needing to wait another day to call the doctor.  Now we know the problem, and we have a plan.  That's a positive.

We still have so much to be thankful for.  A bloodshot eye that made me ask Anna some questions.  Cancellations at the doctor's office that made some space for Anna to be seen early this morning, so we didn't have to spend more hours wondering and worrying.  I once heard someone challenge us to ask God to reveal Himself to us, because that's what He's all about---He really wants us to know Him---how much He loves and cares about us.  In the middle of unexpected difficulties, we can still find some positives--we see evidence of Him working.  He helps us work through the worry to come to a point of peace and calm.

We always appreciate your prayers for Anna!

Tuesday, December 08, 2015

Smiles, Joy, Hope . . . . . and shifting focus for now.

After nearly two years of uveitis, macular edema, and jaw reconstruction surgery overwhelming our thoughts and our lives, we are finally on a even keel and peaceful section of this JA journey. Since I last posted, Anna has had a Remicade appointment, a visit to the Lancaster Cleft Palate Clinic to adjust some brackets and wires, and a visit to her ophthalmologist.  That was a great visit!  Both eyes were still clear, so we took a step by eliminating the Pred Forte drops.  First time to be totally off Pred Forte drops since January 2014.  Now that is worth celebrating!!! (After almost a year of seeing the ophthalmologist and his office staff every 2-6 weeks, we now don't have to go back for awhile---I cheerfully told them, "Happy Thanksgiving, Merry Christmas, and Happy New Year!  We'll see you later!")

So how does Anna keep busy when she doesn't have many medical appointments to fill her time? Besides her high school classes, attending football and now basketball games to participate in the student cheering section, she has been working diligently at a particular piece of music for District Band auditions last Saturday.  Some of you know that this was actually a concern for me.  Anna had a 2-month hiatus from playing her instrument in August and September--and into October. When she picked up the bassoon again after her jaw reconstruction, she had to get used to her teeth feeling different.  They were now in a different position, so she had to find a new and comfortable position for them as she plays her bassoon.  When she would practice long and diligently, she could feel her jaw swelling.  One evening, after playing for well over an hour, she said she could feel a lot of pressure in her jaw.  (Another night, she began putting her instrument away after ten minutes of playing, because her jaw was already beginning to swell.)  I was continually recommending ibuprofen.  But the great news is that she successfully made it through auditions!  She will have about six weeks in January and February that will be intensive in learning music and playing her bassoon for District Orchestra, District Band, and for County Band.  I know some of you pray for Anna a lot (Thank you!).  If you think of her after the new year, you can pray for her about these musical festivals and the well being of her jaws and her stamina.  Just one full day of auditions wiped her out physically.  As I look at the schedules for these festivals she will be participating in, I can see that she will be very busy, and I know already that she will be exhausted once these two-day events are over.  But we know that God promises to go before her, and He will give her strength as she needs it.  (Since beginning Remicade, there are times when she will go to bed early and sleep for 12 hours straight if she doesn't have to get up for anything like school or church.)  She will just need a day or two of sleep once she returns home.

Despite these little concerns I have about the music festivals, I am SO very glad that she once again has these opportunities--especially during her senior year of high school.  And two of the three festivals will be over before her college class begins, so that will greatly help.

For now, we are focusing on preparing our hearts and our home for the Christmas season. We love this time of celebrating the birth of Jesus with family and friends---knowing that because of Him, we can truly have hope and joy along this journey of life---through the good times and in the tough times, as well.  We have experienced His love and His peace (more each year, as He shows us His mercy and grace continually), and as I say in this year's Christmas card, it is our joy to worship and celebrate Him daily, but even more so during this season.

Sunday, October 25, 2015

Moving Right Along, and Some Realities of Remicade

Anna and her brother, Joel

Anna continues to make post-surgery progress.  She tried eating some Chex Mix last week, and decided that she is now ready to eat chips and snacks again.  Today she asked if we could eat at Texas Roadhouse---her first attempt at eating steak since her surgery.  She can do it, as long as she cuts it into tiny pieces and takes her time.  That's the key to eating for her (and I believe we as a family have all slowed down our eating a bit, so that Anna is not left eating alone at the end of a meal---and that's a good habit).  I remember about two months ago, the orthodontist told Anna that by October, she would feel almost normal again, and be able to eat almost all of her normal foods.  He was right!  Patience and perseverance.  That's what it took.

The only medical-related appointment for Anna over the past few weeks was her Remicade infusion on Friday afternoon.  We had scheduled it so that Anna could participate in a field trip to the Carlisle Army War College that day.  She had a great time and had much to tell me and show me (from pictures from her phone) and exclaim about when I picked her up. It was a beautiful day on Friday for a field trip, and the students were outside all day in the wind, touring and walking and visiting the interesting outdoor, interactive museum on the grounds.  On the 20-mile drive to Hershey for her Remicade treatment, she became increasingly subdued, prompting me to ask her several times if she was doing okay.  She was just tired and wiped out.  And then a few hours of Remicade dripping into her body increased her tiredness.  Once we arrived home at 8:30 p.m., she went straight to bed and slept for 12 hours.

This is the reality of Remicade for Anna.  Whenever she has a long day (even though it may be filled with fun and interesting moments), her body needs adequate time to recover---usually a "day for a day" as I've noticed. We take the bad with the good.  The Remicade infusions allow Anna to have the vision to fully enjoy field trips and other pleasures.  So I'm thankful for Remicade to some degree.  I get concerned as a mom when she is abnormally quiet and subdued.  But I'm learning to accept that and know that "this, too, shall pass---with adequate rest." I'm a realist.

We want to thank everyone who prays for Anna and for us.  We know that there are times when the Lord is carrying us through the challenging times and giving us peace and sometimes working to adjust our attitudes.  We have so much to be grateful for---like the fact that Remicade even exists and is helping to control Anna's uveitis.  And for the insurance that covers the cost of the Remicade (I was astonished when I saw a recent insurance statement which had the cost listed, and it humbled me to know that this cost has been covered by Anna's two insurances---I know I cannot take that for granted.)