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

4 Months of Updates

Life got busy, life got crazy and stressful and I'm a horrible slacker!
So here's 4 months worth of updates in one picture heavy post :D

Overall SP is in an amazing place right now! Other than a broken leg and broken arm-yes! she broke her arm too- more on that later, she hasn't had any JIA or Uveitis medical issues this year. Finally a year with no eye surgeries! Yahoo!!!



In August we had eye, joint and cast appointments all on the same day, and all went great! The cast came off and a boot went on. Eyes and joints were clear and quiet.

Sadly in August we lost our beloved kitty at almost 16 years of age. It was a very emotional time.

















SP started the 3rd grade, in a boot and needing a walker.

And in an amazing coincidence her teacher suffers from Rheumatoid Arthritis and is on Methotrexate as well, so she fully understands the struggles that SP deals with. All that aside it's been a great school year for SP, she's made Honor Roll and her reading has greatly improved.






Our Sassy Princess also turned 8!
(picture taken in November, better late than never!)

Sadly SP's brother J-man broke his arm on his first day of Kindergarten! So I had SP in a boot and Jman in a cast at the same time.

SP got her cast off and graduated to a boot and needed PT. She spent 2.5 months having PT 2X a week but she did amazing!

This girl's spirit, she doesn't let anything slow her down :D












New Glasses!

We had an eye scare in September, but it turned out to be ordinary dry eyes!














The week after SP said goodbye to her boot

she got her arm broken at school!
Suddenly I had cast twins. The looks and comments we got were numerous and not always the best, but like always we got through it.

October was great fun even with casts.

And we had a good eye visit in there as well :D












November brought the end to the casts for both kids

with a brace for SP for 2 weeks.

November also had a very positive rheumatology visit. No active arthritis! SP's appointments can be moved from every 3 months to every 4 months now.












The kids were out of their casts and SP out of the brace in time for our vacation to North Carolina and Georgia. We had planned this trip because of SP missing out on so much summer fun due to being in a full cast for most of it. And due to J-Man's love of whale sharks and aquariums. Never knowing that J-Man and SP would both break arms- yikes! we were worried how this would affect the trip, but to have them out in time was simply perfect timing- for once ;)

We started the trip at Great Wolf Lodge in North Carolina. It was our first time there and I cannot say enough how wonderful it was! We found a great deal on Groupon, if you want to go I highly recommend checking out Groupon for deals.

We also saw the lights at the Charlotte Speedway while there, simply beautiful!













Then we headed to Georgia for the rest of our vacation over Thanksgiving break
World of Coca-Cola

Fernbank Museum

LegoLand Discovery Center















Georgia Aquarium


Zoo Atlanta





We had a wonderful and much-needed break (haha) after 3 broken bones within 4 months! and all the various stresses that PT, orthopedic visits, starting school, etc bring.

Our Visit to Connecticut and A New Cast

Daddy had a work trip to Connecticut and we decided a change of scenery would be great for the rest of us, especially SP as I know she was going stir-crazy.
It was a long but uneventful drive and we were all happy to see the hotel room. SP and J-man are very partial to hotels, if up to them we would stay in one weekly! SP particularly

enjoyed having a huge bed to herself LOL

J-man was in it for the pool

While poor Daddy was stuck in classes for 2 days the kids and I enjoyed exploring some local sites in CT and meeting up a wonderful friend and her family who made the drive down to enjoy some time together at Dinosaur State Park and lunch :D

A trip to CT wouldn't be complete without seeing Mystic Aquarium!

We had to contend with some wet weather, but we were armed with a trusty trash bag to keep SP's cast dry and overall it was a great visit!


complete with the non-needed stuffed animal souvenirs LOL

How can you argue with that smile?












And somehow to kill time we ended up at Chuck E Cheese, ugh! miles from home yet at Chuck E Cheese...the Pez Company wasn't open yet, so that's what I was stuck with.

the drive home was longer and filled with dreadful Friday traffic. I have no idea how the people in CT and Jersey deal with that on a daily/weekly basis.







The next week was cast appointment time! Yay! The xray showed healing so SP got to go to a smaller cast- yippee! Still no weight-bearing for at least 2 weeks on it.
We call this the watermelon cast

we return again in 4 weeks for another cast appointment and eye and joint visits the same day...along with bloodwork (shhhhh....I haven't told SP about that yet, I'll wait until we're there to spring that bit of unhappiness on her)

The new cast makes things a lot easier, SP has been able to use her walker more at home instead of relying on the wheelchair. Her poor leg is getting sooo skinny though :( I'm afraid what it will look like when she is completely done with casts.

Still hoping she will get 1.5 weeks out of a cast before school starts, but I'm not going to bet on it.

1 Broken Leg = A Very Different Summer Break

Yup, the title says it all. Poor SP broke her leg. After just one full week out of school.

She attended a friend's birthday party at the local skating rink and fell, with her left leg coming down hard on the wheels of her right skate.
We weren't there at the time and sadly I missed the message and phone call, so it was almost 45 minutes after she was hurt that we arrived. Her dad knew it was broken immediately upon seeing how swollen it was. SP has very tiny little legs, well her left one looked like a football :(

One ambulance ride later we were at the local hospital where I was told by one of the EMT's "she's strong." Yes, yes she is. Far stronger than a little girl should be. You see SP wasn't crying, she was upset and had shed tears, but mostly she was mad that she had gone skating and had skated too fast and had fallen and gotten hurt so badly she couldn't stand on her leg. She did not know yet that it was broken.

Some medicine and a few xrays later we had the official word that it was a break in her tibia and they were going to need to transport her up to the Children's Hospital for surgery to place a rod.

SP's Daddy would make the over hour ride up with her while her brother Jman and I went home to pack what we would need for the night. We arrived only 15 minutes after the transport did.

The great news was a rod was not needed! Just a cast for several weeks. The decision was made to let gravity do the work and pull her bone back into place and then cast it. Once again SP amazed us all....I know I would have been crying like a baby over that-especially the long needle that the Dr used to numb the area.
So it was put in a cast, then the cast was cut on both sides to accommodate swelling, then an ace bandage was wrapped around it that we could tighten or loosen as needed.

The 1st week was rough. Thankfully a wheelchair was delivered to the house to help get SP around since the leg had to remain immobile. The bad news was SP's daddy was leaving for a week long business trip and I had been fighting a nasty sinus and chest infection.
SP remained her chipper self, and tried to stay as positive as she could

but all her happy summer plans were now off. 4H camp had to be cancelled- she had been looking forward to that all year! No pool playdates or going to the local waterpark and yes, sadly no Dutch Wonderland either- at least not anytime soon.

We had her follow-up appointment 1 week after and she got another xray- bones were still in a good position- yay! and she got to pick out another cast- green and purple! but sadly still a long cast up to her thigh.

That morning we also had an eye follow-up and got the great news that the steroid eye drops has squashed the inflammation! Clear eyes once again! YES!

after an already long day with eye and cast appointments we were sent downstairs for some PT with a walker to help SP get around safely if she needed to.
It's been a week since then and we haven't really had much luck with the walker, but she is able to hold on to us and hop on her good foot down the few steps of our house.

We haven't been very adventurous in going out of the house. The wheelchair is far too large and heavy to transport, so we got a simple transport chair to use for outenings. So far that has included the orthodontist (palate expanding is going great! 5 more cranks and she's done!), a shopping trip, visit to a friend's house and just the trip to the children's hospital. BUT we are hoping to take a short trip up to CT soon, that will be interesting!

Oh and we also made it to see Finding Dory- super cute movie!
and my super cute girl :)

Next cast appointment is July 20th, hoping for good news and a short cast then!
Also really praying that SP gets a few weeks out of the cast before school begins the end of August.

The Germ Train: April, May and now June edition

Yup, we've been riding the germ express the past 2.5 months and I want off!

Poor SP has been hit hard.
April brought pneumonia and the Flu, type B
May came and with it came double ear infections, pink eye, oral thrush and yeast :/
June is here and now we have upper respiratory infections. Sadly we also have a uveitis flare, more on that in a bit.

In between all the illnesses, we had some noteworthy moments.

Joint appointment brought the wonderful news that SP is looking and doing great! No active arthritis! Blessedly sweet music to our ears. And with that awesome news and with all her recent illnesses- due in part to her lowered immune system from her MTX and Humira the decision was made to begin to wean her off the MTX! Woot!

Sadly the beginning of June SP woke up and her bad right eye just looked off to me. Call me a paranoid mom, whatever, but my mommy senses were tingling. Put a call in and pushed to be seen. Very thankful they got us in the same day. Yes, SP is flaring :( thankfully it was just a few cells so we are catching it very early. Back on steroid eye drops. SP is a pro at eye drops so no worries there about the 4X daily they are needed. Her next appointment is June 28th, as long as nothing changes with her vision before then.

June also finished up spring soccer- yahoo!

And SP started her new dental journey with a palate expander, we crank it daily and then in 2-3 months it will get sealed into place as a retainer for 6-9 months. As she always does, SP has been handling it amazingly! Speech still a little slurpy sounding, but no complaints from her.

And the end of the school year- look out- big 3rd grader coming in the fall (and I know! look at those long legs- my little girl who was so tiny for so long has been growing and growing)

As always so impressed and so very proud of my girl, it hasn't been easy on her in terms of health, missing school, missing out on fun activities, but she remains positive, smiling and happy. We are so very blessed.