Wednesday, May 29, 2013

It’s almost here!

The Spring Arthritis Walk is just FOUR days away! F-O-U-R people! We are SO excited!

I want to take a minute to thank all of my family, friends and new church family for taking time out of their schedules to come walk with us. You have no idea how much it means to us knowing you are going to be there with us supporting our Monkey. Love you all! If you’re local and want to come out it’s not too late to join us! You can preregister and join our team here.

Shirts

Look at these awesome shirts my hubs had made for us!

I also want to thank all of you who have donated! No matter the size of the donation each and every one is so appreciated! This money will hopefully go toward furthering research and maybe, just maybe, some day there may be a cure for this awful disease. If you’ve been wanting to donate but haven’t had a chance yet it’s not too late! Just simply click here to be taken to the donation page.

I will definitely be posting pictures after the weekend is over! Can’t wait to share with you!

Friday, May 24, 2013

A little help from a friend named Sally…

Yesterday Monkey and I got to experience something really cool…we got to do an interview with Sally Wiggin from our local Channel 4 news. Now, to those who aren’t local to the Pittsburgh area that may not sound like such a big deal but for a Pittsburgher it definitely is! Sally has been a prominent newswoman in Pittsburgh for I believe 30 years! I grew up watching her report the news so it was pretty cool to sit and talk to her and know that she wanted to do a story on Monkey. Here we are with Sally and one of our amazing doctors, Dr. Poff.

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If you are here visiting my blog as a result of seeing the piece on the news thank you SO much for stopping by! Raising awareness for JA is such a passion for me and I’m so thankful that more people were able to see how vast this disease has become in the United States. It’s a truly awful disease with no cure. Yes, Monkey may go in to remission with the aid of medication but he will always, always have this awful disease. If you’d like to read more about our story you can check out my tab up top labeled Juvenile Arthritis and you can also see my first story post here. If you’d like to help support us as we walk on June 1 you can donate here or simply click on the button on the right column of my blog with the cute little monkey picture. :)

Thank you to every one who helped make this interview happen! We are so thankful and grateful to have been able to be part of it!
If you’d like to see the interview you can see it on the WTAE page here. And as you can see it was a fun and exhausting day for Monkey.

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PS…Sally if you’re reading this Monkey is in love with the photo you sent him. We have it set as our desktop image on the home computer and he keeps talking about how the baby tiger got a shot just like him. Thank you. xoxo

Wednesday, May 22, 2013

So this happened yesterday… #WW

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Trying on equipment…gulp…
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We found three baby praying mantis in the yard last night! SO cool!
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Thursday, May 16, 2013

Baby steps in the right direction…

Today Monkey had a follow up with his rheumatologists. As I shared in a recent post he seems to be doing really well thanks to the new meds. I have, however, noticed that his right knee looked a little bit swollen. After both doctors looked him over today they confirmed that his knee is indeed a bit puffy and that his ankles are better but still not completely inflammation free.

Since he’s doing well with the methotrexate side effects (thanks to the Leucovorin (calcium)) the doctors decided to up his methotrexate (mtx) dose to .4mL. They also said that since he is older now and seems to understand what’s going on that we could try to give him the mtx orally by mixing the dose in a small amount of juice for him to drink. I’m hoping he will go for this knowing that it’s MUCH better than getting a shot. We were also told that in a few weeks we can try eliminating Mobic from his daily meds and see how he does. It would be so nice to have him down to just one medication once a week.

As far as what the future holds for him in regards to the medications here is how they doctors explained it to me. They said that they have three stages of treatment. Stage one is treating the patient to get them where they need to be (no inflammation). In other words finding the right dosage of the right medication to eliminate the inflammation. Stage two would be treating the patient at where they need to be. Basically keeping them on that set medication for a period of time to ensure that they are doing well. Then stage three would be determining how and when to wean off the meds. They said that stage two can last up to 2 years and it won’t start until stage one is complete. Right now we are still in stage one. We need to find the right dose of meds to get Monkey inflammation free. After that he will stay on that dose for 1.5-2 years to ensure that it is working and putting him in a medicated remission.

As far as we know the mtx isn’t having any other ill effects on his body. We were going to do a blood draw today to check his liver and such but since he has a cold they asked that we wait until he is better. Apparently when you’re sick your body can show signs of inflammation in the blood work. So, hopefully next week we’ll get the blood work done and know for sure that he’s still doing well in that sense.

We’ll go back in three months to check again to see how this new dose is working for him. In the meantime we’re really enjoying the fact that he can run and play with his brothers and not end the evening limping and in pain. As much as I hate that he’s going to be on a chemo drug for potentially two more years I am very thankful that it is helping him live a ‘normal’ life. Every 3 year old deserves to just run and have fun without pain!

Friday, May 10, 2013

Sometimes all you need is a good book…or two…or five…

I love to read…LOVE to read. That said, being a momma of three very active little men my reading time is limited….very limited. Because of that I’m a little picky about what I read and I’m not ashamed to give up on a book if it doesn’t peak my interest. Thankfully, I’m also a fast reader so if the boys are being particularly well behaved I can often read a book cover to cover in a day. Ah, I love days like that! I also just LOVE to get sucked into a book where you just cannot put it down.

Today while the boys and I were at the library I had a lovely conversation with one of the librarians and another mom. I asked the librarian for suggestions on what’s new and good in the young adult section. Yup, you read that right, I said young adult. I’m not at all embarrassed to tell you that I prefer those books. So many adult books are full of sex and swearing and honestly I just don’t care for all that. I’m not saying that I don’t enjoy some ‘normal’ adult books but the majority of what I enjoy falls into the young adult genre. While the librarian and I were talking this other mom joined in expressing her shared like for YA books. Next thing I know we both have paper and a pen and are gushing over books we’ve read recently saying, “Have you read such-and-such? You haven’t?! Oh my goodness, if you liked that one you’ll love it!” This went on for a good 15 minutes or so. I was soon scanning the shelves for some of the recommended books and filling my tote bag. I’m sure I’ll be pressed on time to read all of them in three weeks. Thank goodness you can renew books!

When I got home I thought it would be fun to share with you all what I’m reading and to even see what you’re reading as well. I’m going to create a button here on my blog with a link to my Goodreads page. For those who may not be familiar with Goodreads it’s a great website where you can keep a list of what you’re reading, what you want to read, and what you have read. You can also connect with your friends to see what they are reading and find out if they liked it or not. So, if you want to see what I’m reading just check out my page here until I can create that button. :)

Thursday, May 2, 2013

A little Monkey update…

I realized that it’s been awhile since I’ve posted about Monkey and his JA. To me this is a VERY good thing…it means that things are going well. So, here is a little update on the little man.

Monkey is now off his daily steroid dose…woot woot! After discontinuing the steroid we had to wait a bit to see if his body was in fact responding to his new med, Methotrexate. As much as we all hate the weekly injections it seems that they are working and working well.

The weather’s been really nice here lately which has meant a LOT of running around outside. Usually after 30-40 minutes of activity Monkey would show signs of being sore. His foot would start to turn out and he’d start limping. We’re so happy to say that he’s shown NO signs of this so far this Spring! He’s been running and jumping like crazy for hours on end with no ill effects! I cannot tell you how much this means to us. Last year at this time he could hardly walk with out pain let alone run after his brothers and now he’s the most daring one of the three jumping off high places and racing to his hearts content!

Here’s a little clip of Monkey doing what he loves most…moving! As you can see he hardly ever stops!

Later this month we have a follow up with his doctors to see what the next step will be. Right now he’s still taking Mobic and Prevacid every day but I’m hoping that we can eliminate that soon. I’m also curious to find out how long he’ll need to stay on the Methotrexate.

We also have our Spring Arthritis Walk coming up soon! We’re looking forward to networking with other families and helping raise awareness for this awful disease! If you want to donate to our team or even join us at the walk please visit our walk page here.

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Wednesday, May 1, 2013

Not your average 5K #5kFoamFest

I’m not really a runner by nature but after participating in my first 5k last year I was determined to run at least one this year as well. I was so excited when my friend Amanda asked me if I’d like to run a 5k again with her this year…but this 5k is a little different.  I’ve seen mud runs, color runs, and zombie runs…this one though was something I hadn’t seen yet and it really peaked my interest.

5kFoamFest 

This is not your typical mud/obstacle run! Nope, not only to get get to get dirty but they are nice enough to run you through many human ‘car washes’! Seriously, I don’t know how someone could look at the photos and not want to go run through all the foam and slide on all the inflatable slides that are part of this run! It’s like getting to be a kid all over again!

Like most obstacle runs the runners often dress up in fun ‘costumes’ so the girls I’m running with and I have something fun planned. We are also running in honor of our amazing friend, Kate, who is currently rocking her fight with cancer. Love you, Kate!!

So if one of your Spring/Summer goals is to run a 5k why not see if there is a 5k Foam Fest near you! Simply check out their locations page and register…it’s that easy! If your local and want to register for the one near Pittsburgh you can register here. Maybe we’ll see you there!