Wednesday, February 19, 2014

Our Second JA-nniversary

It’s hard to believe that we’ve been on this JA journey for two years now. It doesn’t feel like it’s been two years since our doctor first voiced the words “Juvenile Arthritis.” Crazy how fast time has gone and even crazier all that Monkey has been through since then. Today is a good day to look back and see how far he’s come. (I have many posts on the blog detailing our journey. I’ve linked some posts below if you’d like to go back and read our stories.)

We noticed Monkey was limping in January of 2012 and within a couple of weeks he was in so much pain that he wouldn’t walk. There’s nothing quite as heartbreaking as seeing your 2 year old sit in a chair with tears streaming down his face while he says, “Momma, I hurt. Momma, we go to doctor.” Knowing that you’re trying everything in your power to find what’s going on and yet not being able to ‘fix’ the hurt really weighs on you.

February was full of x-rays and appointments and it was the first time we heard the words “Juvenile Arthritis.” Up until this point in my life I’d never heard of kids having arthritis. I will be completely honest with you and tell you that I was scared. I sat in the van after that orthopedic appointment and cried as silently as I could. All I could see was my sweet baby boy in a few years with deformed hands in pain not being able to do the things that other little boys do. Thankfully my initial fears were wrong…warranted yes, but wrong. It’s normal to be scared and worried…it’s ok to grieve and be sad. If you’re going through these emotions too after a diagnosis please know that it’s ok that you’re feeling this way and you are not alone.

We also had an MRI (not exactly the most fun experience), and our first Rheum appointment. When I look back at all of this it’s still such a blur. Thankfully I was able to get him into his appointments quickly (yup, I’m that mom who calls incessantly asking for cancellations until they fit us in lol) and we were one of the few to get our diagnosis fairly quickly. Over the next few months we tried a variety of medications and finally direct joint injections to relieve the swelling and pain. (You can read more about our start on this journey in my first blog post about JA.)

The injection/drainage seemed to work wonders until his other knee showed swelling a few months later. We tried steroids again and switched to Naproxin. Poor kiddo was now getting an upset belly from all his meds so we added Prevacid to the mix. Unfortunately, the swelling persisted and soon we found ourselves back at Children’s for another outpatient procedure. After this procedure I decided to blog about how our day went. I felt it was so important that other parents have a realistic view of what to expect. For us going in not knowing was intimidating and always a little scary.

This time the effects didn’t last as long and we found ourselves talking about other options. This is when Methotrexate was discussed. If I told you I was happy I’d be lying….I was terrified. Not only at the idea of having to give our now 3 year old a shot at home once a week but also of the possible side effects. After all Methotrexate is a chemo drug. But we knew that the risks were worth it if it meant that Monkey could been pain and inflammation free. Starting him on Methotrexate was not fun but I am so thankful for our amazing doctors who helped make the transition easier and for my awesome husband for being the strong one when I couldn’t. That first injection was an experience I’ll never forget. I am so thankful though that after a few months Monkey was old enough to start taking his medication orally rather than via injection. This was a very welcome change for all of us!

Now here we are, two years later, a year on Methotrexate and things are looking good. (Knock on wood!) I’m cautiously optimistic at this point. Heck, you have to be with this disease. It can rear it’s ugly head at any moment with no warning. You find yourself overanalyzing every bump and hurt. Looking at their little joints wondering if they are swollen. But right now I’ll take comfort in the fact that Monkey is doing well. Sure he has his moments. Sure we deal with the not so fun side effects of his medication like moodiness and cavities. But he’s running…he’s jumping…he’s being a boy. In fact he just ran over to me, wrapped his arms around me and gave me a kiss. That right there is what gives me hope. Hope for his future. Hope that he will be able to run and skip and play like every 4 year old does. Hope that some day other kids with JA will have even better treatment options. Hope that some day Monkey and other JA warriors like him won’t have to live with the pain of JA at all. Hope…

Tuesday, February 18, 2014

Painting with Bubbles!

PaintWithBubbles

Is the cold and snow getting the best of you and your kids? Why not do some painting a different way…Paint with bubbles!
What you need copy
BubblePaintingFun

Monday, February 17, 2014

Disney on Ice celebrates 100 Years of Magic - Win tickets to the Pittsburgh show!

Mickey Mouse, Minnie Mouse and their friends from Disney’s Mulan, The Lion King and Pinocchio, and Disney/Pixar’s Finding Nemo, The Incredibles and Toy Story, take to the ice for a grand celebration in Disney On Ice celebrates 100 Years of Magic. Produced by Feld Entertainment, this fanfare production features more than 60 unforgettable Disney stars that span the decades, a sing-along score of award-winning Disney music, stunning choreography, elaborate sets and beautiful costumes.

With over ten movies and more than 60 Disney characters featured, Feld Entertainment’s Disney On Ice presents 100 Years of Magic has a story for every generation and is coming to Pittsburgh’s CONSOL Energy Center March 5 through March 9.

minnie and mickey

With Mickey and Minnie leading the fun, audiences enjoy breathtaking production numbers choreographed by Emmy Award®-winner Sarah Kawahara. Kawahara previously worked with Michelle Kwan and choreographed the skating segment for the Opening Ceremonies of the 2002 Winter Olympics.

Complementing Kawahara’s fabulous skate sequences are the memorable tunes compiled by music directors Art Kempel and Stan Beard that bring the wonderful memories of Disney to life on ice. Scenic Designer David Potts and Lighting Designer LeRoy Bennett create the mood and settings that showcase extraordinary Disney moments.

Outfitting this cast of more than 60 characters was the challenge facing Costume Designer Scott Lane. His dazzling designs range from Mickey’s Marching Band, to the “It’s a Small World” dolls, to the stars of Mulan and Finding Nemo. The bright colors and minimal structure in the Nemo costumes allow the characters to move freely in order to mimic the natural movement in water. Renowned designer Bob Mackie also lends his talents to a red sequined evening gown worn by Minnie.

Nemo_marlin and dory

Scenic Designer David Potts, who has worked on numerous Broadway productions, creates a theatrical atmosphere on ice. Skaters weave around and enliven the “It's a Small World” sequence amidst sparkling floats that turn into a radiant light parade; a blanket of snow and an avalanche fall as Mulan battles the Huns; and a giant present is opened to reveal Buzz Lightyear as he’s first introduced to that favorite toy cowboy, Woody and his pal Jessie.

Show Performance Schedule:
 
Wednesday, March 5 - 7 p.m.
Thursday, March 6 - 10:30 a.m. and 7 p.m.
Friday, March - 7 p.m.
Saturday, March 8 - 11 a.m., 3 and 7 p.m.
Sunday, March 9 - 1 and 5 p.m.

To discover more about Disney On Ice, log on to www.disneyonice.com, or visit us on Facebook and YouTube.

Do you want to go to the show? Enter below to win a family four pack of tickets that can be used at either the Wednesday, March 5th show or the Thursday, March 6th show. (Vouchers will be sent via mail to the winner and need to be redeemed at the box office for tickets. Only good for performances on 3/5 and 3/6.)

About Feld Entertainment
Feld Entertainment is the worldwide leader in producing and presenting live touring family entertainment experiences that lift the human spirit and create indelible memories, with 30 million people in attendance at its shows each year. Feld Entertainment’s productions have appeared in more than 70 countries on six continents and include Ringling Bros. and Barnum & Bailey®, Disney On Ice, Disney Live!, Advance Auto Parts Monster Jam®, Monster Energy Supercross, AMSOIL Arenacross, Nuclear Cowboyz®, and Marvel Universe Live.
For more information, please visit www.disneyonice.com. Members of the media are encouraged to visit the Online Media Guide http://www.feldentertainment.com/100YearsOfMagic/.



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Friday, February 14, 2014

A little update…

A lot has been happening in this crazy house including this momma getting a concussion. Before you all go crazy and yell at me through your computer screen my doctor said computer time is ok as long as it is limited. This blog is important to me so I’m trying to dedicate a few minutes a week to keeping it up while I heal. So, short and sweet posts. :) 

Many of you have asked how I got my concussion…thankfully I have a good story. I decided to be a ‘fun mom’ and take my boys sledding…not just take them but participate in the fun as well. The hill we were sledding down was fast and there was a small drop off near the bottom that basically turned into a jump when you were flying down on a sled. I took my turn on a friend’s tube and when I landed off said ‘jump’ the impact shot my knee into my chin causing my teeth to smash together resulting in an instant “worst headache I’ve had in a long time.” After the world stopped spinning I got up and became a spectator for the rest of the evening. Since then my headaches have gotten worse. Finally on Wednesday I went in to see the doctor. (I know, I know, I should have gone in sooner but remember I’m a mom to three boys and that week we had a crazy schedule. I know other moms understand me when I say we tend to put ourselves on the backburner.)

Anyway….my pcp didn’t seem terribly interested in treating me and just rattled off all these other places I need to go. I ended up at the UPMC Concussion Center in Oakland yesterday and finally got real treatment. The doctor was wonderful there and explained everything to Ed and I. Now it’s just about resting, limiting stress (HA!), and doing some therapy.

So there you have it….my fun story of how this momma got a concussion before any of her boys did. With that I’m going to bring this post to a close before it becomes more than a short and sweet post and I get yelled at for spending too much time on the computer. ;) 

Monday, February 10, 2014

Handwriting Help for Little Hands–ARK’s Butter Grip Giveaway

If you’re a parent like me you know how hard it can be to get your young kid to learn to hold their pencil the ‘right’ way. Now, I’m not a super stickler about proper form but I do think that some form is a good start. Kids make it tricky though. They rarely want to listen to you gently urging them to hold their crayon ‘this way’ while they are busy creating their latest masterpiece. Creating good handwriting habits young is something to strive for though so you’re not trying to break bad habits once school starts.

Recently I found a really awesome handwriting tool for the two younger boys. The ARK Butter Grip. 
ARKButterGripGiveaway
Invented by Tina M. Butterfield, MSOT, OTR/L and developed by ARK Therapeutic, the Butter Grip is specially designed to promote proper finger positioning during writing tasks. A proper grip not only encourages fine motor development, but it also improves handwriting legibility. The round shape of the Butter Grip serves as a tactile cue for the fingers to grasp. With the fingertips below the grip, it also provides support to the web space and finger muscles during writing and coloring activities. Perfect for both left and right-handed individuals, the Butter Grip can be used with standard pencils, most pens, as well as ARK's Tran-Quill™ Pen and Pencil. At a diameter of 1 inch, this grip is recommended for children and young adults. Sold in a combo pack of 1 purple and 1 blue grip. All other accessories are sold separately. Tran-Quill™ Pen/Pencils sold separately.
MADE in the USA out of medical grade, FDA compliant materials that contain NO lead, phthalates, PVC, BPA, or latex.
The boys thought the Butter Grips were pretty cool…like little bouncy balls for their pencils! It was not hard at all to get them to use them and you can see how it helped them hold their pencils ‘correctly.’ I also think the Butter Grips would be a helpful tool for kiddos like Monkey who have JA. Thankfully we haven’t experienced swollen fingers with Monkey but I know a lot of JA kids have a difficult time writing/holding their pencils. The Butter Grip just might help make it less painful.

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ARK also has a variety of amazing speech, feeding and sensory therapy tools. Check out this Bear Bottle kit to help your little one learn to drink from a straw:
IMG_4407_340

Or this Baby Grabber perfect for teething babies:
ARK-Baby-Grabber-chewing-mouthing-oral-motor-tool_675x675

As you can see ARK offers a variety of products geared with young kids in mind. Would you like to give the Butter Grip a try? ARK has been so kind to offer a Butter Grip Combo to one lucky winner. To enter just follow the steps below on the Rafflecopter form.

{The Butter Grip Combo was provided to me by ARK. I was not financially compensated for this post. All thoughts, opinions, and ideas are my own. Thank you, ARK, for partnering with me and offering this giveaway.}

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Monday, February 3, 2014

The Crushing Power of Overthinking

Have you ever been asked what you think your super power would be? Ask my boys and they’d tell you, “Laser eyes! No! No! Ummmm, super strength! No wait! I want to FLY!”

Have you ever asked yourself that question? I did and decided that my super power is the power of overthinking. Doesn’t sound so fun huh? I mean, I could totally make something up and share what I’d WANT my superpower to be but I try to be honest in my posts.

I am always wondering if I’m doing my best. If something is going wrong I wonder if it’s my fault. If I don’t hear from a friend for a while I immediately wonder if I did something wrong. If a friend vents to me and talks down about someone else I immediately wonder what she might be saying about me to another friend. I often jump to the worst conclusions too. Fun stuff.

I know I’m supposed to take my thoughts captive but I find that rather than taking them captive and giving them to God I take them captive and put them in a little box. Soon those boxes pile up and I’ve got a big wall of anxiety hovering over me.

This also leads me to holding my thoughts and feelings in. Why? Because I will have the whole conversation in my head and think out all the possible outcomes eventually coming to the conclusion that the conversation will end poorly so why even have it. Sometimes I wish I did less thinking before I speak. At least then everything would be out in the open rather than stuck in my head running on repeat.

And of course there’s bedtime. The time that I should be able to lay down and let go of all the days concerns. Unfortunately that’s when my brain seems to go into overdrive.

You’re probably wondering why am I posting this. Truthfully I’m not certain. I suppose just to share with others that I too struggle on a daily basis. I’m real. My blog is real. I also want other mommas to know that if they do this as well they are not alone. I’m still trying to find ways to overcome this power of mine but I know it will take time and practice. Baby steps, right?