September 2017

September has been a pretty good month. SP is loving the 4th grade, she attended her first kids only dance (no parents!) and wanted to wear a skirt, my baby is becoming more and more a little lady. The homework load is much more intense this year and sadly she missed 3 days the 2nd week of school due to a very bad cold- with the immune-suppressing medicines SP is on, even the common cold becomes serious and hard to shake. Well missing those days threw her off track and she's still playing catch-up.

She is really enjoying learning to play the clarinet

and bowling league is fun

SP's retainer is keeping her teeth where they should be and all looks great! ( I must admit I enjoyed seeing that healthy cervical spine-with the JIA we had concern in that area before)

The weather here has been wonderful, hard to believe it is now Fall.

Costumes were picked out and we are all looking forward to Fall and Halloween fun coming up next month.

July/August 2017

CLEAR EYES! We have clear eyes once again :D

Back in June, poor SP had gotten a single grain of sand in her eye that set off the uveitis, thankfully drops wiped it out quickly and at her very next appointment her eyes were clear once again and we started to taper off the steroid eye drops. In August she saw her regular ophthalmologist and things were still looking great with her eyes. Always a relief!

SP lost tooth #9







In July we went on vacation to Buffalo NY and then on to Niagara Falls Canada. The kids loved it! Especially SP, but she was under the impression that all of Canada was like the Clifton Hills tourist area- ummmm...no LOL

We did so many fun things, Buffalo Zoo, Niagara Aquarium, Hornblowers boat trip, Butterfly Conservatory, Journey Behind the Falls, Waterwalk, etc.. it was a great vacation except for poor mom getting sick and our trip having to be cut short by 2 days :(

When we returned, besides mom needing to get healthy and recover from a surgical procedure, we had the state fair to look forward to! Both kids are in 4H and entered a few exhibits into the fair this year.

SP was thrilled that her suncatcher won Honorable Mention and her star wreath won a blue ribbon

AND SP competited in the archery contest at the fair :D

she placed something, no idea what but the fair sent her a check for $4.50 which made her extremely happy! LOL

In August we got great news that her eyes are still clear and her joints are great! So much so we can now go 6 months between joint appointments AND most restrictions have been lifted, she can be a kid as tolerated :D
So SP is making the most of this, she's playing field hockey, is joining a bowling league and wants to play the clarinet in band. So very happy for my sweet girl!





the end of August brought the first day of 4th grade

and SP's birthday! Our girl is now 9!

A Year of Clear Eyes Gone in a Second

Sadly yes, SP is in a uveitis flare, a very mild one, only a few inflammation cells are present, but this still needs to be treated so it doesn't become a full-blown awful, things are spiraling out of control flare. And it was caused by a single grain of sand. Yes, you read that correctly.
We went to Assateaque on Tuesday for some fun in the sun with a long time friend of mine and her family. The kids had a blast! Jumping waves, building sand castles, just being happy kids

We left and went to lunch with everyone, drove home, everyone had showers and we settled in to chill for a bit. After 2 hours home SP complained of something in her eye. And, of course, it was her bad eye. I looked and saw nothing, she started to cry from the sensation of something in her eye so we tried saline eye drops, a bottle of water to flush it out, nothing. I called our local eye place and thankfully a Dr agreed to see her. At 6 we made it there and the Dr removed a single grain of clear sand- SP felt immediately better. But the sand had scratched her eye so he prescribed antibiotic eye drops every 2 hours while awake with instructions to see her ophthalmologist within 1-2 days.

We got an appointment at Dupont on Thursday where the Dr said the eye was not scratched but irritated from the abrasive sand which had signaled the body to run to the rescue. The problem with JIA is the body mistakenly believes that normal joints and her eye are the enemy and will try to destroy it not realizing it is only hurting itself. That is why SP is on MTX and Humira to fool her body into thinking everything is fine by lowering her immune system. So SP is back on steroid eye drops 3x a day until her follow-up appointment in 2 weeks. Since her eye has been quiet and clear for so long and we are catching this very early we are hopeful she will get back into quiet eyes quickly. Poor girl is so upset and afraid of needing another eye surgery, it's very heartbreaking.

On to better news, school is over! SP is very excited! You might recall she broke her leg 1 week after school let out last summer so she said she has to cram two summers into this one LOL She has big plans :) and an early start on them

SP had an amazing school year! She got 3rd place for the accelerated reading program in the 3rd grade, met her goal all 4 marking periods, and one that brings a tear to my eye- she received the Moving On Award, nominated by her teacher and selected by the local Lion's Club for the child that has made the most improvement despite challenging circumstances.

SP has really taken a liking to bowling. This is the first time she has ever bowled. Kids bowl free is a wonderful summer program! Basically, you sign them up at a participating bowling center and they get to bowl 2 free games each day at a designated time. You do have to pay for shoe rental and snacks.

Our girl is growing up so very fast! and this summer will fly, bringing with it her 9th birthday and she moves on to a new school in the fall, exciting times are ahead and we're not going to let an Uveitis flare bring us down.

May 8, 2017: Part Two

I've neglected this blog so much that this update required 2 posts!

Easter! Too many egg hunts, too much candy and just the right amount of fun :D

Brother Jman got glasses (he's farsighted, poor boy, it was only recently that we saw how much he was struggling with homework and reading) and we also learned he has ADHD, this explains so much! it is my hope that he is not defined by this, the same way SP is not just her JIA and Uveitis. He is our sweet, caring and silly Jman and always will be :D
(except in this picture he was cranky we told him he had to eat lunch before we would fly kites in the park)






speaking of kites, The 49th Annual Kite Festival!



Our Bug Hunters. We got to watch hundreds of praying mantises hatch from 3 tightly grouped cases.


SP has also been quite the little outdoors woman.
she loves fishing, especially when she out catches everyone else!

And Archery, she has been looking forward to doing this with her 4H group all year :D She plans to compete at the State Fair this July.


Fingers crossed we are hoping for a fun, active summer for our girl after the disappointment of last summer with the broken leg.

May 8, 2017: Part One

Overall, things have been going great for SP, no active arthritis, clear eyes! Woot! The Zofran helping with the nausea..but not this weekend. She was out late on Saturday enjoying some Texas Roadhouse, where she piled it away according to her dad, and then she needed her 2 shots, Methotrexate(MTX) and Humira. SP dreads Saturdays :( because it's shot night, but she truly hates 2 shot Saturdays.

Well this Saturday was a no exception. She cried, she screamed, she hyperventilated, she moaned she would be sick, but she got through her 2 shots. Sunday she got up, asked to go to church, but didn't have much of a appetite. That should have been our warning because little SP is finally getting bigger, up to a whooping 53 lbs (for her that's big) and has been eating very well lately. After church we stayed for a luncheon and she complained of being tired and again no appetite. 99.6 fever at home, then 100.2 later that night. This morning she is down to 99.4 and is tired, I'm hoping a day of rest in bed will help. It's not an illness, it's one of the many possible side effects from her shots. It's so hard to see her like this, but it's a tradeoff for not having painfully swollen joints and an eye blind from inflammation(all things the medicines keep at bay).

Now onward to some fun updates!

This happened after Thanksgiving vacation

Two little kitty sisters that we adopted from a local rescue, Compassion for Cats The kids had wanted kittens and with the heartbreaking passing of our senior kitty Rella in August we decided to get them new little buddies.

As you can tell it's gone very well. Bonnie (the one in SP's arms) is super caring and gentle, she is all over SP when she gets her shots, she worries about her girl.
Funny thing both cats play fetch!







Christmas was very nice as well as sad. It's the first Christmas without the kids' PopPop. He was a baby loving fool and the kids adored him.

The kids saw Santa a number of times, including breakfast with Santa, always a hit!








And we were able to do the 1st Day Hike on New Year's Day for a 2nd year in a row

Some excitement as the palate expander came out and a retainer went in, only for after school and on the weekend (so she doesn't lose it in a napkin at lunch LOL)

Poor SP did end up with the flu type A 2x within a month! She got to be the first diagnosed with the flu in her pediatrician's office, not an honor you want. Because of her lowered immune system it's recommended that SP take tamiflu, well insurance didn't like her having the 2nd dose so close to the last time, funny when the pediatrician's nurse offered to send them the positive swab they quickly approved it.



and we had the much anticipated Daddy/Daughter Dance!
Our lovely girl growing up so fast

Spring Pictures gave us a peek of what a tween SP will look like