Monday, December 31, 2012

A year come and almost gone…2012 in review

What a year this has been…it’s one of those years that you look back and think there no way all that happened in ONE year, surely it’s been longer. But, nope, it was all crammed in 365 days. Crazy.

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Friday, December 28, 2012

Friday Blog Hop

It's been nice to take a little blog break but it feels good to get back into the swing of things. With the holidays there is of course SO much to blog...today though I'm doing something different. Rebecca over at Let Them Eat Cake is hosting a Friday blog hop and I decided I'd join in the fun. Blog hops are a great way to discover some cool blogs and make some new friends. I've had the pleasure of meeting some really sweet people via blogs and even made a couple of new friends (Rebecca being one of them). So, without further adieu let's get to it!


Let Them Eat Cake

I'm also going to give this Bloglovin thing a try....
Follow my blog with Bloglovin

So check it out and join in the blog hop fun if you have a blog you want to share! Just make sure you not only check out the hosts but click around some of the blogs listed in the link up...you never know when you might find a great new blog to read or even better, a new friend.

Enjoy your weekend my friends! Be safe and HAPPY NEW YEAR!!!

Friday, December 21, 2012

Get Your Sillies Out!

I don’t know about you but winter and cold weather means that my boys are bouncing off the walls. During the warm weather we spend so much time outside so they usually have plenty of ways to use up all their crazy energy. In the cold…not so much. We try to go out when we can but lately it’s been too muddy and gross. We try to get them to the YMCA at least once a week as well but even then they are still a little nuts.

I will tell you one thing I’m looking forward to this winter…letting the younger two get their sillies out when we go see Yo Gabba Gabba Live at the Benedum on January 11.

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Gabba was HUGE in our house when Zim was little…he was borderline obsessed. I’ll admit that while the show at first seems a little strange it actually grows on you. The music is fun and the kids learn some important things…you know, like, “Don’t, don’t, don’t bite your friends!” And of course all the crazy dance moves!

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If you’re looking for a last minute gift or just something super fun to do with your kiddos in January you should definitely check out this show! Tickets are still available in Pittsburgh! Not in Pittsburgh? Check to see if there is a show coming to a theater near you!

Tuesday, December 18, 2012

Remembering…

I’ll be honest, I’ve been avoiding reading news reports and watching anything related to the tragic Sandy Hook shooting. I’m an emotional person by nature but when it comes to kids I’m even more so. I put myself in the shoes of the mothers and my heart literally breaks into pieces. I’ve been praying for the families since that horrible day and will continue to pray because their pain will be everlasting.

This post is made memory of the sweet angels that lost their lives that day and the loving teachers who gave their lives trying to protect them…

Friday, December 14, 2012

This Week’s Visit to Children’s Hospital–A Photo Journey

As I have mentioned before we are SO fortunate to live close (well, close-ish) to one of the best children’s hospitals in the nation, Children’s Hospital of Pittsburgh. This place is amazing…really beyond amazing.

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Even the building itself if beautiful! So colorful and not scary for the kids.

This week we had an appointment with Monkey’s rheumatologists to iron out our new treatment plan. While I got Monkey registered Ed took Zim and Bubs down to the Lemiuex Sibling Center…they were so excited to go back! After get the older two settled Ed was able to come back upstairs with us. For some reason Monkey was feeling a little shy and difficult that day and wasn’t too keen on being examined.

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Sitting on his daddy’s lap helped though!

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Dr. Poff carefully checked his joints.

Soon Dr. Kietz came in…as I’ve mentioned before he is an amazing doctor. He truly gets Monkey and knows exactly what to do to put him at ease…like giving him a football!

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After playing catch for quite a while and after almost breaking Dr. Kietz’s glasses (Monkey loves to throw hard!) he let Dr. Kietz take a look too.

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After all the examining was done we talked meds and treatment options. We will be starting Monkey on Methotrexate on January 3. We will go into the hospital for his first dose so the nurse can show me how to properly do the injection at home. Right now Monkey will be taking an oral steroid to work on taking down the inflammation and hopefully start easing his pain. He will continue to stay on the Mobic and Prevacid as well. We’ll also be adding a folic acid tablet (we’ll have to crush it and put it in food), Omega 3 gummies (fish oil), and an Aloe drink to help with his tummy. (It still really bothers him even with the Prevacid.)

There was much more to this day than just our visit but I’ll save that for another special post all it’s own. Until then, thanks for sharing in our journey and for keeping us in your thoughts and prayers. xo

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Wednesday, December 12, 2012

Warriors #WW



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Over 300,000 kids are living with this disease.
I have been blessed to ‘meet’ a few of their parents
and let me tell you…these kids are true warriors!

Thank you-b&wBLOG

Thank you for your prayers, thoughts and support during this journey!

Monday, December 10, 2012

Something Unexpected

Last night my phone rang at 8:40 pm…my phone hardly ever rings let alone after 6. I looked at the caller id and saw a number I’ve become very familiar with…the return number for Children’s Hospital where Monkey’s rheumatologists are located. I answered and was surprised to hear Dr. Kietz’s voice.

After the initial hellos our Dr. Kietz said that he was so sorry that our paths didn’t’ cross at the Jingle Bell Run on Saturday. I told him that Ed and I had gotten a stomach bug the day before and Monkey had been in a lot of pain so we were unable to make it. Dr. Kietz then went on to say, “I just wanted to call and ask that you please tell Monkey (of course he used his name) that I was thinking about him the whole time I ran and that I ran that day for him.” I nearly broke down in tears right then. This doctor had taken time out of his busy schedule to call us just to let us know that he was thinking of our Monkey. To me this was such a refreshing thing. I thanked him so much and told him that I would be sure to tell Monkey. He said that he looks forward to seeing us at our follow up on Thursday and that he can’t wait to run the halls with Monkey like they always do.

I can’t even put into words how thankful we are for Dr. Kietz. He has been so kind, so patient and so helpful through every step. We have also been so blessed with Dr. Poff as well. She has been so available to me to answer my many questions and just to listen to me as I try to grasp what is ahead of us. Some states are still without a pediatric rheumatologist…we are so fortunate to be in a place that we have TWO amazing pediatric rheumatologists caring for Monkey!

Thursday is an important day for us. We will sit and talk about our treatment plan and how we can get Monkey feeling better. I feel much better about the appointment now. I feel so reassured that our Monkey is in such wonderful hands. I always knew that Dr. Kietz was a great doctor, but today I was reminded of what a kind friend he is to us. Thank you so much, Dr. Kietz, it means the world to us knowing that you truly care for our Monkey.

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Sunday, December 9, 2012

More swelling = new treatments

This past Thursday we found out that Monkey has more swelling in his right knee and ankle. Unfortunately both joints have already been treated via injection with the knee having just been done in October. He had been complaining of his foot/ankle hurting but I didn’t realize how bad it really was. Now, because of the continued inflammation in spite of the injections, we have to start talking more aggressive treatment.

I think deep down I knew this day might come but I hoped beyond hope that Monkey’s case would be different. That he’d be one of the lucky ones who had a weird flare but once treated with milder options he’d be ok. It might have been na├»ve of me to think that way but I think any parent has hopes like that. Now we have to face the reality of it all. His arthritis isn’t getting better and it’s time to talk about things that have scared me.

Our next step seems to be the drug Methotrexate. Metho-what? Yeah, that’s what I said when I first heard it. Methotrexate is classified as a disease-modifying antirheumatic drug (aka DMARD). Here are a few bits of info about DMARDs from the book Raising a Child With Arthritis:

- Do not provide immediate relief in pain or inflammation, but are believed to modify the natural course of the disease and prevent joint damage. (Because of this they are often used along with NSAIDS.)

- At least 2/3 of children with persistently active JIA require some type of DMARD.

- Side effects vary but all have the potential to suppress your child’s immune system to some degree.

And here are some bits specifically on Methotrexate from the same book:

- Has become increasingly common and provides a beneficial effect about 70% of the time.

- Taken weekly either by pill or injection. (Most children Monkey’s age are given an injection.)

- Side effects may include: decreased appetite, nausea, mouth sores, mild hair thinning, fatigue, lung irritation (cough), increased sun sensitivity and liver problems.

- Can deplete levels of folic acid which can increase the likelihood of these side effects. Supplementation is often recommended.

I will be completely honest here and tell you that when I heard our doctor say that we need to start Monkey on Methotrexate my heart sank. When I hung up the phone I broke down in tears. Why can’t there be an easier way to treat this? Why do we have to pump him full of meds every day and now this? My head knows that this is all necessary to make him better but my heart just breaks for him. It’s all just so much…especially for a three year old.

He’s had such a rough weekend. He’s clearly in a lot of pain and it’s starting to make him moody and inconsolable. It’s so sad when he comes up to me with tears in his eyes and says, “Momma, my leg hurts.” I try to hold back the tears as I scoop him up and love on him. I tell him that I wish I could make it better, that I wish I could take his pain away. You know what he said to me today? He said, “Momma, maybe new medicine help me feel better.” Mind you we haven’t even mentioned new meds to him because he wouldn’t understand. I can’t help but think this is God’s way of telling me that it’s all going to be ok. Yeah, it sucks that Monkey has to go through all of this but he’s so strong and maybe he’s right…my little hero.

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Tuesday, December 4, 2012

More Elf Antics!

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Day 2 we found cookie had drawn faces on the boys photos. They thought it was the FUNNIEST thing ever. I loved hearing their giggles coming from downstairs when they found him!

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Cookie also left us a dry erase countdown!

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(You can make your own too! Just print this out on the paper of your choice and frame it in a 5x7 frame. I used colored scrapbook paper for ours. A regular dry erase marker works perfect as well.)

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Day 3 we found cookie playing Bubba’s new Farkle dice game.

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Guess he’s made friends with the boys animals.

 

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Monday, December 3, 2012

Super Sweet Secret Santa!

This year I participated in a holiday exchange hosted by Holly over at Our Holly Days. I’ve done things like this in the past with people I knew but this was different. This time I didn’t know who I was gifting to and I didn’t know who was gifting me. 

On Friday the boys and I found a box on our porch! How fun! Yes, I still LOVE to get mail…when I see a box I especially get a little too excited. We couldn’t wait to open it!

I carefully opened the box to find two cards on top. One was a lovely Christmas card to our family and the other was for me. I opened my card expecting to see a short note but instead found every inch of the paper covered in writing. What could some one I don’t know have to say to me? As I read tears began to fill my eyes…this sweet woman had been reading my blog and felt a strong connection with our Monkey and myself. She explained that she too had grown up with some awful health issues and went on to share some of her story. She wrote such kind and encouraging words to me. Words that made the tears that had pooled in my eyes stream down my face. I felt so touched. It was clear that her words were genuine and heartfelt. 

After I wiped the tears away I let the boys help me unwrap the goodies. See, she didn’t just send ME a package…she send my family a package. She had an adorable little Santa bag for each of the boys with their name on it. Not only that but each one had a personalized (and adorable) tag on it with a note on the back. The boys were so excited to find new card and dice games and immediately sat down to play. They also LOVED the Christmas mugs filled with candy and hot chocolate mix. Every little package in the box was individually wrapped and tagged. The tags were SO freaking cute! Seriously, the print and details she put on them were just too adorable! There was also a beautiful platter (can’t wait to put some goodies on this!), a mug with chocolates for me (yum!), some tea, a lovely book and some super cozy socks and awesome holiday nail polish! She also included some of her favorite recipes for us…some of which were even gluten free! And the poems she included with them…too cute! I can’t even tell you how adorable the whole package was. She clearly put so much time and thought into it all and I feel so very blessed.

Thank you, my sweet Secret Santa! You and I know who you are and I am so very thankful for your kind and giving heart. I am really looking forward to having a new friend in you. xoxo L

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Saturday, December 1, 2012

Cookie has returned!

There was so much joy and excitement this morning when the boys entered the living room to find that their special elf had returned! Cookie the elf that is. They were even more excited to see that Cookie had left candy canes all over the tree and mantel…who doesn’t love candy canes?!

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Cookie first visited us last year and the boys just loved him! They would go to bed each night wondering what kind of trouble Cookie would get into while they were sleeping. They also were very mindful of being good. They would even remind each other that if they misbehaved Cookie would report back to Santa that night. Too bad Cookie can’t stick around all year to keep them in line!

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Thursday, November 29, 2012

Stashed!

It’s that time of year again…time to find the perfect hiding place for all the Christmas gifts! The past few years it hasn’t been hard for us because the boys were little and really never thought to look for things. This year though Zim has already almost found some gifts completely on accident just because he’s nosey and loves to poke around places like under beds and closets. Thankfully we have an attic and in the attic we have a large wooden chest…the perfect hiding place…for this year at least.

I’m sure as they get older the boys will start looking for places that would be perfect hiding spots and we’ll have to start being sneaky. For now though I’m grateful for their somewhat innocent nature!

So, where do you hide your gifts? Did you ever find a stash of gifts when you were little?

Tuesday, November 27, 2012

Sending out some love…Tune in Tuesday

Quite a few people I know have recently had to experience the death of a loved….something I wish no one had to ever experience. I wish there was something I could do to help with the pain and heartache but I know that I can only pray for them and offer my love and support. Today this post is for them. This is such a beautiful song and I’m sending it out to those who’ve lost loved ones or even just lost love. Hugs and prayers. xoxo

Feel free to link up and join in on the Tune in Tuesday fun that my friend, Nicole, started up.

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Saturday, November 24, 2012

Winter Crafting!

Thanksgiving is over so now it’s time to break out the winter crafts! I’ve got a few things in mind for the mantel as well as some great DIY gifts! Here’s what I’ve completed so far…

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$0.50 sweater from a local thrift store turned leg warmers and Christmas stockings! (I have two more thrift store sweaters to dissect for more stockings.)

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Button wreath on an old piece of wood.

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Snowmen from old wood blocks!

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Stocking holder from pallet wood!