November 2015

Our last ophthalmology appointment was eventful, for numerous reason.
Our car broke down and that was quite an experience for SP and myself.
The good news is that the disease is quiet in her eye, the inflammation gone!
Sadly her vision is not improved as posterior capsule opacification (PCO) occured because lens epithelial cells remaining after cataract surgery have grown on the capsule. You might remember that SP had a PCO laser procedure along with eye muscle surgery in August, for whatever reason, the flare-up, etc.. it wasn't enough and now the Dr must go in surgically and cut out a potion of the posterior capsule to clear up SP's vision. Currently her vision is 20/200. We remain hopeful that this will give SP back her vision in that eye.

But when is enough enough? It might very well get to that point at some time, when comfort care is suggested to keep SP as pain-free as possible but realize that her vision in that eye is lost and just accept that. I'm relieved the Dr does not feel we are at that point yet. I'll freely admit that was a painful conversation to have and I had to work hard not to cry.

So eye surgery #4 (5th eye procedure) is happening December 3rd. Please continue to keep our sweet SP in your thoughts and prayers. In typical and amazing SP fashion she's more upset about the eye patching than she is about another surgery!

And to brag a bit, SP made Honor Roll! We couldn't be prouder of our brave girl and all she continues to face with a smile.

How October Went

October was a very busy month for us.

During the Rheumatology appointment SP's Methotrexate(MTX) dose was upped and we're still watching her wrist- which thankfully does seem to be responding to both the MTX and Aleve- thank goodness!!! After her 3rd dose (this Saturday) of the increased MTX I need to take a picture and message it up to her Rheumatologist and then it will be time to play phone tag. Another cortisteroid injection and fluid draining might still be needed on the wrist, but Dr Rose is hesitant since the skin is thinner and there is more chance of dimpling.
Here is her wrist in early October, the swelling/big lump is much smaller now- will update with a currrent picture soon.

The next day at our appointment with Ophthalmology, I was very thankful for the increased dose of MTX- the eye inflammation was back! and the scar tissue is either building back up or is just enlarged due to the inflammation. We really want to avoid oral steroids if at all possible, but whatever it takes to get that eye quiet we will do. So back on the steroid eye drops, 4X a day and then another follow-up a week later.

EXTREMELY relieved to find out that her eye is responding to the drops! The inflammation is lessening and we will begin a slow tapering of the drops. As for the scar tissue, another laser procedure might be needed to attempt to break that back up. Our Dr doesn't want to have to surgically go back into her eye if it can be avoided since every invasive surgery carries the risk of inflammation.



Our Super Girl

While dealing with those issues we also had a few unexpected ones tossed our way.

SP had a mole appear on the back of her neck and grow and grow over the course of several months. It got very irritated from being caught by the brush and comb, and yes, a few times Mommy caught it with her nails-oops! So we had a pretty normal visit to the Dermatologist and it was removed. Didn't think anything of it until a few weeks later I received a call from the dermatologist himself, that's when I knew something was off.
Yup, leave it to SP- it was an uncommon mole called a spitz nevus It is thankfully benign! The Dr wanted us to come back and unfortunately widen the original excision site to ensure it was all removed. SP was pissed- no other way around it, she was one mad little girl. The first time when the mole was removed she was the champ she always is, amazing the Dr and his assistant. This time she showed every oz of her 7 yr old fury! But in the end we had it done.

The new wider healing site.

Monday got the news- results are all scar tissue with no remnants of the mole. YAY!
Unhappy that she needed it done, but at least now we know the 1st removal was completely successful.







And with everything else going on, no surprise a rash appeared around her mouth and nose. The nurse at Dupont did not think it was related to the MTX and suggested we see our Pediatrician. We did and he believed it was Perioral Dermatitis and prescribed some gel for it and recommended we ask the Dermatologist as well. Which we did and he agreed with our Pedi. Sadly I think the gel irritated the area even more!

So we discontinued it and went with moisturizing lotion and then nothing and now it is thankfully clearing up!
Her nosebleeds are also now a thing of the past- Like I said, poor girl has been dealing with so much this month!








Good thing SP is a child and doesn't stress like adults do, nor do we try to overwhelm her with these issues. One day at a time and trying to keep things as normal as possible.

Halloween Fun!

Happy Hauntings at Dutch Wonderland :)

The end of the Fall Soccer Season :D I'm tired and thankful it's over! The kids had a blast, and it's good exercise for them, but the 3 different practices a week and games on Saturday was a lot with everything else going on, so it will be nice to have a break over winter.







SP heads back up for another eye appointment on November 17, so please keep her in your thoughts and prayers that the eye inflammation continues to improve.
Thank you!

Second Injection

Tonight we (or rather I, since I need to be able to do it as well) gave SP her 2nd Methotrexate injection. Like the amazing trooper she is, she let out a cry but didn't pull away.
So far we have seen a decrease in the swelling in her wrist, but not an amazing difference, really hoping a few more shots do the trick so we can avoid another corticosteroid injection. I'm not apposed to it, the one in her knee was amazing! But being honest here, we're losing our insurance due to job loss, so the stress of that is pretty dang high right now. I'm not currently sure how Cobra insurance works, but that is what we hope to get and be able to afford until new employment and employee benefits are found.
When you have a child with medical needs you require not only good health insurance but great health insurance, those surgeries, smaller procedures, doctor and specialist visits add up- plus the time on the road away from your job, gas, meals, etc... So if possible please say a prayer that new employment is found ASAP.

Overall SP is doing great!
Enjoying soccer

New glasses :)

Another good eye exam!

and just being her typical cute, silly self

September 21, 2015: Moving Ahead

Today's post will be short and not very sweet, it wasn't a good day.

Had SP's appointment with the rheumatologist and she will need to be on long-term medicine. The plan is, she will be on Methotrexate, we'll be injecting it into her arm every Saturday, she will be taking folic acid as that has been shown to help with the nausea, mouth sores and other side effects from the Methotrexate. There is risk of liver inflammation so every 3 months she needs to have blood work to check on her liver function. We will begin this Saturday and if there is no improvement in her wrist within a few weeks we are to call and get scheduled to have a corticosteroid injection in her wrist. Her poor wrist this morning

The big plus is this should get her JRA/JIA inflammation under control, including any flare-ups in her eye. The bad news is that it has gotten to this point. She is now on permanent physical restrictions.

To say I am heartbroken and sad today is an understatement. My girl is here and happy and for that I am thankful and joyful, but I'm sad for all that she must go through.

January 15, 2015: Cataract Surgery and Complications

On January 15, SP went in for cataract surgery. I was so afraid that she would balk at going in due to how unpleasant the recovery was from the band keratopathy surgery, but children are simply amazing. We had told her that the surgery was needed and it wouldn't hurt as much and she accepted it. Brings tears to my eyes to think how much are asked of children and how they bravely face it.

We also got lucky, SP's brother J-Man got pink eye a week before her surgery so we spent that time keeping them as separated as possible and disinfecting everything in the house - it paid off and SP did not contract pink eye and her surgery went as scheduled.

The whole family traveled up for the surgery, so we didn't take any wrong turns this time. I went back with SP to the pre-op area and we didn't have a long wait, just enough time to enjoy some cartoons.

Surgery took under 2 hours and all went very well. The lens came out, even going into surgery there was a slight chance that her lens could be saved, but it was better to have a new clean one put in. Funny now we have a little card with the serial # for SP's lens to add to her medical records.

Post-op was a pretty quick experience and before we knew it we were ready to take SP to the hotel. With an early morning post-op appointment it was a better option to stay in the area instead of heading over an hour downstate to home.

SP got sick once on the way to the hotel, I blame too much Icee! And once ensconced in a big hotel bed her diva attitude came out to shine. Little girl wanted Chick Fil-A and cookies and sleep? No! she wanted to watch cartoons.

The night was quiet with no issues and we were up early for her appointment which went very well. The patch came off and her vision was already improved over what it was at the last exam.

SP's lovely night guard

Things were going well...or so we thought,
On February 10, 2015 we had another eye exam and while her vision was improved to 20/50 and we were down to 1 eye drop a day we were all caught off guard by the band keratopathy's rapid regrowth. The inflammation from the cataract surgery set it off, but there is nothing we could have done differently, they had to remove the band keratopathy to see the cataract fully and the cataract surgery needed done so she could see again. We were so hopeful of having a few years before the band surgery had to be repeated.

March 4, 2105 we had the exam that started the roller coaster of stress and worry that we would ride for the next two months.

The JRA was flaring up in SP's eye again causing inflammation, it was already affecting her new lens. Her vision was almost nil in that eye again. SP was put back on steroid drops in order to get it under control. We were hopeful it would settle down and then we would see what damage it has done, they can do a laser treatment to fix the lens without having to replace it.
But like her Rheumatologist had already warned us this will be her issue with JRA, and sadly it's like a dog chasing its tail, until the disease is gone or completely quiet we are going to be going around and around with eye appts, drops, surgeries, etc...

Then two days later I received a call, we had to knock that inflammation down and fast, her Rheumatologist was starting her on oral steroids.

March 17, 2015, we were extremely thankful for a good eye exam. Inflammation was going away, still there and the lens was still "sticky" but much improved since last time and SP could now see out of that eye again! We're staying with the steroid eye drops, but will begin weaning the oral steroids down slowly...good thing because they are really affecting her. For a child that takes forever to gain weight SP has gained about 2 lbs in the last week, her pants are getting tight on her and she is always hungry and wanting to eat. Her face is puffy and she is super emotional.

We would also start eye patching during the evening and on weekends. The hope was for the JRA to go quiet again and if not then she'll be put on another drug to keep the inflammation away and the eye healthy. He did bring up another surgery in the future to scrape off the band keratopathy, but at that point I was quite hesitant to do that fearing more inflammation and back into this horrible cycle we go again.

August 20, 2015: PCO Laser and Eye Muscle Surgery Day

Surgery Day arrived much faster than I thought it would, but then again most of the summer has flown by as well.

All routine, we drove up, checked in, got called back, SP kissed and gave hugs to Daddy and J-Man and back we went and waited..and waited...and waited some more.

Actually we only waited around an hour, during which poor SP asked to use the restroom about 4-5 times, that was the only sign of her nervousness. SP is one cool little lady.

Then it was time to go back for the posterior capsule opacification (PCO) laser procedure, the one she had been dreading due to her being awake for it. Can I just say that she impressed not only mom but the entire team back there! She sat still, followed directions and it was over within minutes. I'm serious, it was very quick.

And then came the time for me to kiss my sweet girl, whisper, "I love you" and she was drifting off to sleep.

After I changed out of my surgery gear, the anesthesiologist called it a bunny suit minus the ears, I located my DH and J-man, dropped off SP's bag of clothes and went in search of lunch.
Only when returning from a very quick lunch did I notice I had lost my fitness tracker. The bracelet had been popping open and I think when I pulled off the bunny suit it went with it.

Thankfully surgery did not take long and we were back in a little room talking over how everything went, drops, restrictions, etc...
Everything went wonderfully!
Though I admit I didn't really care for my husband and the Dr joking about the laser procedure being similar to a video game...whether that is true or not. Pow, Pow, Zap :/

Restrictions were simple, don't get anything nasty into that eye:
no pools/waterparks
no sand/beaches
no mulch/playgrounds

Shortly afterwards Daddy was able to go back and see our little girl, then he swapped out so I could go back.

Overall SP was doing great! No complaints of pain, just a tad groggy sipping away on an Icee (the hospital has an Icee Machine right in the post-op area) Got to catch up with a super sweet nurse, whose son is also 7 and sadly also suffers from JRA/JIA. We met her during SP's band keratopathy surgery back in November 2014 and have had an opportunity to come across her a few times at the hospital.

Once SP was moved to a different area of post-op things took a downturn, she insisted that she needed the bathroom- with SP and her nervous bladder this didn't surprise me, but she was very insistent about needing to go NOW. She was nauseous and wanted to hit the bathroom- poor girl. She ended up getting sick 3 separate times, and the last time she also got a nosebleed. Anesthesia was paged and the Dr came over shortly.
-We have always been thankful to have this great children's hospital in our state, but even with Delaware being a small state the drive is still a good hour and 15 minutes....on days without rush hour or beach traffic ....and the Dr was concerned about us being that far away in case of complications so there was talk of us going over to the Ronald McDonald House. Dr Salvin was then paged, consulted and then the decision left up to us. Honestly I didn't want to make that call. I wanted the doctors to tell us what to do. DH and I talked and we agreed to take SP home.

We left the hospital and got to McDonald's about 5 minutes away (we felt dreadful but it was after 5 pm, we hadn't eaten for hours and we were facing rush hour traffic on the way home so we had to get food for the rest of us) while in the drive-thru poor SP threw up again :/ Thankfully we got everything cleaned up and she fell asleep on the way home.

Rush hour traffic was beyond terrible! So thankful SP slept because we barely crawled along for a solid hour. Once home SP perked up and started demanding food- sorry girl crackers and Gatorade had to do until we knew that little tummy was settled.

By the next day SP was up and ready to go! We could already tell a big difference and best news of all? no pain!

Saturday, just 2 days after surgery SP was ready to go shopping.....little girl is a shopper just like her Daddy.

Tuesday we had her follow-up eye appointment and it went great! Her eye is healing well, no signs of inflammation (YES!) and we could discontinue the antibiotic/steroid eye drop and lower the prednisone drop down to 3X a day and then continue to slowly wean that one down. Follow-up is Sept 15th and we will talk glasses ( or not!!!! she might not need them!) then :D






Wednesday was SP's 7th Birthday and not only was little girl feeling great but her eye improves in appearance every day.

August 5, Joint Appointment: The Good, The Bad and The Sad

August 5, 2015, we had an evening rheumatology appointment, we picked up Daddy at work, marveled and thought some not so nice thoughts about rush hour traffic, had a McDonald's pit stop and made it up to the hospital with time to spare.

The Wall is always a must and yeah, it's pretty cool

Also time to look around the gift shop and hear the kids ask for things that they absolutely do not need...but that I'm still tempted to buy! Who doesn't want to snuggle with a 5 foot long bright green stuffed alligator?

The kids got to enjoy the sight of two baby pigeons in their rocky nest outside the window of the waiting area.

and then we got called back.

We love our Rheumatologist, Dr Rose, he is a man perfect for his job. Even when he's telling you things you don't want to hear, his manner is so gentle that it does sting just a tad less. You know he's good when the kids are eager to see him and exchanged handshakes and high fives.

The Good: We have been concerned over SP's gait, she just seems to roll her ankles in or even do a mincing type of run.....Daddy says it's her "girly run". Well the verdict is she's fine. Nothing physically wrong just she doesn't fully extend her feet when running.
Her knees continue to look good, from time to time she complains of them hurting, and since the one flare-up we have been hyper-vigilant in checking them over.

The Bad: Her right wrist is puffed slightly, possible sign of inflammation. Her neck is not showing full range of motion, when she looks way up she arches her back to do so. Xrays were suggested along with a follow-up in Sept. He doesn't want to start her on anything because of how close to eye surgery (August 20th) she is. This will give him time to look at the xrays and reports, time for surgery and healing and time for us all to regroup.

In typical SP fashion she took it in stride and put a positive spin on things. "Right wrist? Good thing I'm left handed!"
Man I love that girl and wish I could look at things so optimistically!


The Sad: Knowing that more joints are affected, and knowing more limitations will be placed. As much as we want the sky to be the limit for our children and their dreams, the reality is living with JRA/JIA and the damage it does to joints is long-term and will affect a child the rest of their life. One arthritic toe isn't a big deal. Having the cataract and all the eye procedures? Well SP will never be an Air Force Pilot....not that she has expressed a great interest in such things, but at one point when driving past the AF Base that question did indeed come up.

Gymnastics is another things that SP will not be doing. Basic tumbling with friends at birthday parties.....SP, herself, has requested her upcoming birthday party be at GymStars, and we had agreed...and then postponed due to eye surgery and the restrictions that will place on her. We will be partying hard, for sure, little girl deserves it, but she will never be doing handsprings and leaping off balance beams.

Seeing your child strap on a lead apron over their pelvis and happily hold still, smiling the entire way through xrays with trusty Eeyore by her side. Knowing the dentist wants xrays in October and putting them off because you want to space out the surgeries, xrays, procedures, in hopes of staving off any potential problems or side effects. SP's hair is still very thin, I wonder if from repeated anesthesia.

Knowing summer vacation is dwindling and wanting to squeeze in as much fun as possible before surgery and recovery take over the last remaining week before school starts.

I long for remission and some peace. Agreeing with your child that this is not unfair and flat-out stinks is one thing...but I want to scream, I want to blame myself...something I did while pregnant, something, anything! but why my girl? Like most parents I would gladly take this all on myself if I could. But I can't.
I hope and pray that SP's joy is never dampened by this and that she always remains the cheerful, sweet character that is so her!

July 1, 2015: The 4th Positive Eye Exam in a Row and Surgery News

It was that time again, time for the drive up to AI Dupont's children's hospital.
Everything proceeded as expected except this time SP needed her eyes dilated and we were not aware of that going into the appointment. If so we would have done a few things differently, such as packed more snacks, taken both Nabi Tablets and maybe Mom and Dad would have popped some Aleve-haha. But yeah, wound up kids while you are impatiently waiting isn't the best thing. On the plus the kids had more time to interact with some other children awaiting their turn in the back.

SP's little brother J-man and a little girl with facial port wine stains got to talk about birthmarks. I was actually surprised when the mother came over and thanked me for the shared opportunity. I tried my best but I think I may have blurted out some politically incorrect nonsense about all kids being "normal" at the hospital. Oops! Hopefully she forgave me that.

So the official word is the disease is still quiet!!!! YAHOO!!!! and there is no inflammation.

Now we went into this appointment expecting to talk glasses and SP was perfectly fine with that (something mommy was not when this whole ride began 2 years ago) and that was great! BUT -you knew that was coming- The Good Dr couldn't check SP's right eye to get the prescription she would need due to Posterior Capsule Opacity which is apparently a fairly common complication of cataract surgery, and with this being SP-of course it would happen to her. So now we're talking a small laser procedure to remove this scar tissue stuff, while SP is awake. Yeah........ She was not happy and her direct quote, "NO! Put me to sleep for it!" echoes my thoughts as well. That is just so much to ask of an almost 7 year old child, to sit still while a laser procedure is done on her eye. Going be asking for a lot of prayers for that one!

In addition to that she needs eye muscle surgery, which we knew about for months. The hope has always been that the eye muscle surgery and additional band keratopathy surgery could be done together, well the band is stable- awesome news! So now we don't have that procedure to contend with for hopefully a year or two. But the PCO laser procedure can be done with the eye muscle surgery...maybe. We have to wait and see what the team of Docs at Dupont think is the right way to proceed. So we will be waiting for their call to get things scheduled. We're hoping for the middle of August, let SP have tons of summer fun (she starts a 4-H camp next week, her first time!) and then lets get these surgeries out of the way before her birthday and the start of 2nd grade, both the very end of August.
(edited to add Surgery is on August 20th)

Speaking of summer fun, nothing better than enjoying the beauty of Longwood Gardens

SP has been enjoying Longwood since she was a wee little girl

Summer Fun

This post isn't related to JRA in any way, it's just some of the fun we have been having, since school let out. The disease doesn't control SP's life and we're doing our darn-est to make sure it doesn't take away from her childhood in any way.

My baby is getting so big! 2nd Grade here she comes in the Fall!!!

We love going up to Dutch Wonderland in Lancaster Pennsylvania, if you are near there or looking for a smaller, child-oriented park to take your children to, this is it!

It was during a visit that SP got to fulfill a long time wish of hers- to ride in the back of the train! The smiles says it all :)

And what's summer without going to the local waterpark?
especially since our little pool didn't survive winter storage in our shed, oops!

SP decided that this was it, it was time to get her ears pierced! So on June 13, SP's Mimi's birthday in fact, we took her to the mall and she got sparkly earrings. She was so brave, her longtime friend Eeyore helped calm her fears.

Summer vacation isn't all smiles though, I had to use this time to point out that this was the very reason Mommies and Daddies the world over have to say again and again, "stop running!"

As someone who grew up going to the beach annually after a mind-numbing 4-6 hour drive(hey when you're a kid anything longer than 30 minutes is dull, and when I was a child AC was NOT in all vehicles) it boggles my mind that my kids are growing up as beach babes. To them going to the beach is a weekly activity.


Enjoy your summer! We are!

June 10, 2015: A Bit of This and That

Our beautiful SP all ready for the Daddy/Daughter Dance back in March :)
















I'll admit my gaze was drawn to her eye, her poor in-turned eye.

I bugged my friends, "her eye, it's really noticeable isn't it?" The answer was always No. I think her eye bothers me more than it does her, I had to stop obsessing over it. And for the most part I have. It pains me seeing that sweet little hazel eye turned towards her nose, but now I view it as just another part of her amazing spirit. My girl is a fighter, she is sweet, caring, silly and stinky, she is a good friend and a lover of animals and gross jokes.

The JRA doesn't define who she is, nor does it control her. We let her do what she wants and is able. Yes I yell at her when she turns her ankles in, but I would yell at any child of mine that did that.

The school year ends tomorrow. I think I may be cheering almost as loudly as SP. Little girl has done fabulous. She got a "The Always Happy" class award for always smiling and being happy. And that's her, despite everything the steroids, the surgeries, the time out of school, the pain, the eye drops, the patching, etc... it doesn't get her down, she stays her sweet self :D




You might have noticed from the above picture taken on Monday that her cheeks have gone down! Yippee!
That has thrilled me. Her weight has not only stabilized but she is down 4 lbs. She can now fit into her original summer wardrobe. Silly me had gone and bought tons of summer clothes for both kids, a sale is a sale! but then SP went on steroids and gained 10 lbs in the blink of an eye and started popping out of all her clothes..which meant none of the new clothes I had purchased would fit. I was pretty upset at the waste of that money and clothes, but who could have foreseen the steroids? So then I went and bought more clothes...you can see where this is going right?
LOL Yup! She can now fit into the 1st set of clothes just fine where the 2nd set bags on her....maybe next summer? Oh well, I don't care about the money anymore, I'm just so relieved my sweet girl is looking and feeling more like herself again and the disease is quiet :D

Our next appointment got moved from the end of this month to early July, and I'm fine with that as well.
And so is SP!