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.

MRI Results and Eye Visits

Yikes! I've been dreadful about updating, but you know what they say no news is good news. But actually, all the news has been good and definitely worth sharing!

The grey spots on SP's eye were nothing, just me being a nervous mom and nothing wrong with that! Her vision and eye looked great, the only recommendation was that we start patching again. The good Dr introduced us to patch pals- and what a great thing it is! SP hated the old sticky patches that would rub and sadly end up ripping out some of her eyebrows when we removed it. Patch Pal slips onto her glasses, so no adhesive to rub or irritate or give her an unneeded brow shaping.

SP rocking her Patch Pal :D

We finally made it in for the MRI, it only had to be rescheduled 3X. SP was able to do it unsedated and for that,we are thankful to the awesome techs who could have pressed for sedation.

SP after her MRI.

We were also surprised to find an adorable stuffed dog waiting for SP on her bed when she was done. A big thank you to http://www.alliesfriendsfoundation.org/ they donate stuffed animals to give to children in hospitals in memory of their daughter Allie, who sadly passed away after a freak accident.

MRI RESULTS: Normal cervical spine MRI with no radiographic evidence of JIA.
sheer relief!!!!

and then in with all that excitement we had the Daddy/Daughter Dance. SP and her daddy look forward to that for months! Picking out the dress, hair ornament, corsage, it's a fun time.

what I loved is eye comparison from last year

This year- loving that straight eye!

And we had Easter Fun, egg hunts, baskets, and a nice holiday meal.

That brings me to our eye visit today: No inflammation, eyes are clear and vision is great!
I honestly didn't realize how well she was doing. From where we were 20/200 and all the inflammation, issues, surgeries, etc.. The Dr said getting her to 20/60 or 20/70 would have been a goal, but to have her at 20/40 is just phenomenal. She is never going to have 20/20 vision that's just the way it is, but we'll take this for sure! :D
and the best news is that he feels comfortable seeing her every 3 months now- instead of the every 2-4 weeks we were going up. Yes!

So we have her April visit with her Rheumatologist, but otherwise the schedule is looking clear until the end of June for specialist visits. ahhhhhhhhh....this is wonderful!

January and February 2016: Review and What's Happening Now

Well SP was supposed to have her MRI the end of January, but we had issues with the new insurance- one of those you're covered! you're insured! but we don't have you in the system correctly or have any member ID's for you :P So in other words sure you're insured but don't dream about getting sick or needing the coverage.
Thankfully that is all straighten out now and the MRI is rescheduled for February 19th. SP cheered when it was cancelled so no she is still not excited about this.

I won't even begin to tell you about the hours on the phone to get SP's Humira prescription sent out on time- another new insurance issue- but just let me give a big THANK YOU to the ladies at Dupont who listened to my frustrations and tearful worries and got everything fixed for us.

We had another wonderful eye visit in January, her vision and eyes are great!
it has taken a year full of ups and downs, surgeries, oral steroids and countless eye drops but we are in a good place right now and thrilled!









January also brought snow, a good 17 inches- which is a lot for our area! The kids were so excited about snowmen and snowball fights. Unfortunately it was not the right type of snow for that and was very hard and icy packed at the bottom and light on top.
It was good for snow angels though.
Here's SP's complete with the puffball on top of her hat!

SP had a dentist visit, and while she got a good report we got the referral to the orthodontist, something we knew was coming but still wasn't fully ready for. Then again whose wallet is ever ready for that?
A visit to Chick Fil-A cheered her up and burned off some energy for 2 little kids stuck inside for too long.

We ended January on a good note and the same continued into February with one small hitch.
February 10th SP complained of blurriness in her bad eye and when I looked I saw a large jelly-like blob/disk in there. With a few blinks and a tissue we got it out. But when she was moving her eye around I noticed the white of her eye had several grey patches to it. This could be normal and I just never noticed it before but I went to google. Well never go to Google if you want your mind at ease. I thought I was going to have a panic attack reading things on there!
Called up the Ophthalmology office today and the good Dr got back to me very quickly and helped put my mind at ease. It could be nothing but areas where her incisions were (keep in mind SP has had 5 eye surgeries) or it could be something of concern. He was willing to fit her in tomorrow, but SP has her Valentine's party- something she has been looking forward to- and honestly the poor kid has missed so many fun things that I didn't want to take this from her. Since it wasn't deemed urgent we are holding off until next week. Since she already will be up at the hospital for her MRI she will get her eye looked at afterwards. But thank heavens for great doctors who get back to you!

Other December 2015 News/ And Into the New Year

So in between the eye surgery and multiple eye appointments we also had some other excitement in December.
The best news being SP's daddy received two job offers and accepted one that keeps us local- so no moving, no changing schools and no changing doctors or hospitals! Yay! Oh yeah, having a steady income is also a nice plus ;)

SP also had two appointments with her Rheumatologist, and while things have improved with her wrist

she still has some inflammation in there and while her neck has improved from 15% to 60% range of motion the Dr would like to see her up to 90% or more. So in addition to Methotrexate(MTX) SP started on Humira as well. SP will continue to get the MTX as weekly injections and the Humira she will receive as bi-monthly(twice a month) injections.

And a MRI was ordered for SP for her neck, that is scheduled the end of January.

One of our appointments was on Christmas Eve and the hospital staff went around giving out stuffed animals!
How sweet and definitely cheered SP since she was not overjoyed to hear about the MRI.
She picked out a huge Purple Care Bear- a big thank you to Dupont and the wonderful donors who made those gifts possible!

Christmas also happened and our kids love Christmas :)

Visiting with Santa

Cookies!

SP's favorite gifts were new stuffed friends

After Christmas we were blessed and greatly surprised with free tickets for a bus trip to see Disney on Ice!
The kids had a wonderful time and I must admit it was magical!

And some Bear A Build gift cards as Christmas gifts also made for a fun winter break

The year started off with a great 1st Day Hike at our local state park. Chilly and fun!

We received her monthly Humira shipment and gave her the 1st injection on Saturday. She did throw up the next day, but we cannot say that was from the medicine or possibly from reflux. On Monday she felt great and she never stopped being her happy, bouncy self.

We have another eye follow-up next week and the MRI the end of January, but things are quieting down- which is wonderful after eye surgery and 6 appointments in December, we're all looking forward to some downtime.

December 3, 2015: PCO eye surgery

I've been dreadful about updating, I would love to blame it all on the holidays, surgery, tons of appointments, illnesses, etc...but it wasn't just that, some of it was sheer laziness and yes, it felt good to be lazy and waste too much time on FB and other meaningless things.

On to SP news! (warning tons of photos ahead)
She had her surgery December 3rd and she did absolutely amazing! No fear on her part going in and waking up from anesthesia was perfect! She was sleepy but did not get sick. I repeat she did not get sick! Whatever the anesthesia doctor did we need to make certain that happens again if she needs anymore surgeries.

The hospital was ready for Christmas!

SP watching cartoons with Eeyore waiting to be taken back to the OR.

After surgery

What SP had done
If you remember she had cataract surgery in January and that went well, but she suffered a common side effect/complication from it - posterior capsule opacification (PCO) which occurred when lens epithelial cells remaining after cataract surgery have grown on the capsule- so it's like looking through dirty glass

In August she had eye muscle surgery and a PCO laser procedure, but then she suffered a JIA flare-up and uveitis in her eye. So anything the laser procedure helped was gone. This time the surgeon went in and cut out a section of the PCO so even if she does suffer inflammation again it won't close up and cause that haze.

here's a great picture of what will be done

The ride home was uneventful and SP was ready to go about life as a child, forget that she just had surgery mere hours ago
Chowing down and watching TV

The one thing SP really doesn't like- besides patching and eye drops is the night shield!

The day after surgery we headed back up to Dupont and got awesome news, everything looked amazing.
SP was doing great!

The next week we had another follow-up and Dr Salvin was visibly excited by how well she was doing, we all were. Little girl is rocking it!

We had another follow-up on Dec 30, where we found out - surprise! all her squinting isn't from the procedure not working or her vision decreasing- nope :) Her vision has improved so much her prescription was actually hurting her eye! Time for a new lens (SP's left eye has perfect vision so that lens is just plain plastic no prescription)
So you understand how amazing this is, before the surgery her vision was at 20/200 (that is legal blindness in that eye) now with a corrected lens it's at 20/25. The Dr had hoped to get to her 20/60 if we were lucky.

So for now we get to see our girl with no glasses and even more exciting for her- no more patching! WOW!