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.
Monday, December 31, 2012
Friday, December 28, 2012
I'm also going to give this Bloglovin thing a try....
Friday, December 21, 2012
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.
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!
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
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
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.
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.
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!
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.
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
Wednesday, December 12, 2012
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 for your prayers, thoughts and support during this journey!
Monday, December 10, 2012
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.
Sunday, December 9, 2012
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 naïve 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.
Wednesday, December 5, 2012
Tuesday, December 4, 2012
Monday, December 3, 2012
Saturday, December 1, 2012
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?!
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!