Dear JuneBug,

2 years ago today, at 6 pounds and 6 weeks old, you began the fight of your life.......... and you won.





May 2011
 

May 2013



May 2011

May 2013

Your tenacity and drive keeps me in awe on a daily basis.  I find it hard to get upset with your stubbornness, because I know that's what kept you alive when you were sick. 

Pure stubbornness, plain and simple. You weren't  ready to leave and nothing was going to make you.

 

Before this day I had never experienced emotional pain manifesting itself physically, my heart actually hurt.  It felt like there was a vice around it and every hour that went by with no answers or improvement it tightened a little.  That day is a complete blur, I remember doctors and nurses running around, monitors beeping, me explaining the sequence of events that led us to that point at least a dozen times, the chaplain coming in to baptise you, thinking about what it would feel like to come home with empty arms, and praying for a miracle. 

Your recovery and every day since has been nothing short of a miracle.  An infection that is usually fatal, and if survived the chances of being left brain damaged, deaf, or blind are very probable, you survived, and you are perfect. 

 

My heart is so happy every day that you are with me. I melt when you wrap your little arms around my neck and say "mama kiss" and "love you". 

 

I can't wait for you to grow up so I can tell you the story about your fight. How you were the bravest, tiniest little warrior I had ever seen, how fierce your will to survive was, and how proud I am of you.

If the love I have for you and your brothers was measured in bucketfulls mine would be overflowing, constantly.  Sometimes my heart feels like it's going to burst I love you all so much.  Being your Mama and experiencing this journey with you has changed my life.  We still have a long road ahead of us, and I am grateful that I am able to travel it with you. 

I love you my Mia.

Sincerely,

Mama

 

Note to my readers: This past year my little family has had quite a few trials, but for every one challenge I can find three things to celebrate with my children. Today is so important to me; it reminds me to squeeze my kids a little tighter, sneak them that extra cookie, cover them in kisses every chance I get, and to never ever take them for granted.

Thank you for sharing in our journey, praying, and supporting us.  I've connected with so many amazing people because of this blog, I can't thank you enough for wanting to be a part of our lives.

Happy Spring!!

"It's pink, so it's mine right?"

I woke up this morning to green grass, it was a much welcomed sight.

It's May and there is finally light at the end of this cold Wisconsin tunnel.  This winter has been long and really rough, it was one of the worst cold and flu seasons we've had in a long time.  Everyone was sick, and not just sort of sick, really sick.  Luckily we made it through without any hospitalizations and only one major illness that I have a feeling we caught just in time. 

Mia is 50 days away from medicated remission and the potential consequences of stopping her medication are becoming more of a worry.  I got her lab results the day after our last rheumy visit and her platelets were high.  Inflammation stimulates platelet production, this is not a good sign to me.  But Dr. S made it very clear that he was not concerned which makes me feel a little better, he is the expert after all. 

But I have my very powerful Mama instinct and it has been telling me that something is brewing.  Mia's has been having rashes on and off, both SoJIA and another that I haven't been able to pinpoint the cause yet.  It hasn't gotten to the point that I feel that we need to get it checked out, but it's there, and I notice it.

Thinking about cookies and juice

It's possible that I'm just being hyper vigilant and the mystery rash is nothing and will go away on it's own.  It's possible that Mia's body is just adjusting to the combination of her weight gain and her medication levels staying the same and her SoJIA rash will go away when things get back into sync.

I think this Mama needs a reminder to live in the moment.  Ever since we started this medication I've been wanting to get off it, and now that it's finally here I'm thinking to myself "people stay on this medication for their entire lives, can't we just stay a little longer???" I have no problems giving her shots, and she has no problems getting them, the side effects are non existent anymore so what's the rush???

Things have been so good I'm just scared of change. I feel like we've been having fun at the shallow end of the pool with our water wings and floaties, and now it's time to take them off and learn to swim in the deep end.  Good thing Mama is a strong swimmer :)

We Have A Plan!

June bug and I went to see her rheumy today and all was good.  We are now 2 months away from medicated remission!  Her remission party is June 22nd and Dr. S is giving her the best present ever...... wait for it........wait.........

we can start weaning her methotrexate that day!!





In the waiting room at Madison Children's Hospital
 

WHAT????  So soon????  I thought maybe we would give it another couple months after she reached medicated remission??  He seems confident she will do well, she's been on the same dose since we started the med in January 2012 so essentially she's already been weaning her dose by not increasing it with her weight gain.  And her weight has more than doubled since then so that makes me feel better.  But still, this is the medicine that is keeping her crazy immune system from attacking her precious little body.  What's going to happen when it starts to leave her system?  Will she flare??  Will we have to start back at the beginning??

Enjoying her birthday cake

Luckily the wean is very gradual.  We will start by skipping her dose every other week and after a few months of monitoring her labs we will try stopping all together.  This is a lot to take in right now for this Mama *breath in breath out*  By this fall my Mia will be medication free, I just can't even imagine.  I will probably be spending a lot of time listening to her heart, inspecting every inch of her for rash, checking the mobility of her joints, and generally just obsessing about her health.  As much as I dislike giving her all these medications, they are comforting to me.  THIS is the med that regulates her heart rate, THIS is the med that suppresses her JIA, I don't have to worry as much because I've got these medicines working in the background to help keep her healthy.

After our appointment we get labs done, Mia knows exactly what is going on as soon as she sees those ladies.  It's all so routine to her and it makes me sad.  Today after her draw she hopped off my lap, made a b-line to the treasure chest and picked her prize (a lovely set of princess playing cards), and then ran to the door and said "open".  She knows the drill; poke, prize, leave. 

I'm going to try not to get ahead of myself here, but if all goes well my girl will be in full remission by her 3rd birthday :)


Happy 2nd Birthday to Mia and Erik!!

Mia loves sammiches
 

Are we really on the verge of potty training and toddler beds? On the verge of that stubborn independent phase called "I do it"??  When did this happen???

Last years birthday I was very emotional, still trying to deal with the post traumatic stress from the past years events.  I was thankful we were celebrating with Amelia and not celebrating in remembrance of Amelia, thankful I could watch her open her presents instead of leaving them at her grave.  Still haunted by how close we came to losing her, I imagined what it would be like to celebrate Erik's birthday without his twin sister there.  Last year it was still very apparent that she was ill, she was so tiny and skinny and hadn't even started to crawl.

This year is different....

This year I am in awe, complete and utter amazement, I am overjoyed and hopeful.  She is doing everything that a 2 year old should, all without pain. She is still a bit short but her thick little legs and chubby rolls make up for it.

I watch her strut around with her sassy personality, throwing tantrums and fighting with her brothers and I think to myself.... does she know how special she is?  Does she not realize the huge obstacles that she's overcome?  Does she not understand how badly the odds were against her to ever live a normal life? 

It's the beauty of being 2 I guess.  Mama carries the heavy burden of all the memories and you live in the moment, playing with your dolls, splashing in the tubbie, and your only worry is how to get your next cookie fix. 



Mia also loves pie

Today when I checked my blog stats there is a section that lists keywords people google which causes your site to pop up.  This one took me off guard, "does systemic JIA ever go away?" It kind of made my heart drop. Because really, you will never know if it will come back or not.  There is just no way to know, no test you can take that says you're cured.

We are 78 days away from medicated remission and we haven't had a bump in the road in quite some time.  So even if miles and miles down the road we hit another bump, we deal with it and keep driving looking for smoother roads. 

So JIA may never go away for good, but there is life in between flares.  Tons of amazingly awesome perfectly wonderful life.

Guilt

I've been thinking about this post for a few months now but haven't been quite sure exactly what I wanted to say to express the intense feelings I get when I talk to fellow SoJIA mom's who's sweet little one's are struggling.  It's like survivors guilt, and fear, and while I don't want to pity them (because that's not what I would want if it were me), I can't help it.  I'm so emotionally invested in these kids.

So many of Mia's friends are struggling at a time when I want to shout from the rooftops that Mia had another pain free day, and it's been almost a year since she's been pain free, and 4 months since she's had any symptoms.  We've successfully weaned from steroids and we're on track to meet our medicated remission date.  So far methotrexate has been our miracle, we haven't had to step up to the next level of medication. 

With this disease you need to live life in the moment and celebrate the small things that parents of "normal" kids take for granted or even find annoying.

When your child takes off and runs through the store like it's a playground, be thankful they can run.

 

When your child throws a tantrum over something silly, be thankful they have the energy to fight you.

 

When your child breaks into the marshmallows and they've eaten half the bag and it's not even 8:00 a.m., be thankful they have an appetite.

 

When your child tracks mud or snow throughout the house after playing outside, be thankful they are well enough to play.

 

My experiences with Mia have made me look at life very differently.  I don't get so bent out of shape because of messes or tantrums, I laugh more and get frustrated less.  But I can't seem to shake the guilt, and I know my fellow mom's would tell me never to apologize for celebrating Mia's health, I just wish and pray the same for their children.  I wonder why my Mia is so lucky?  She is absolutely no more deserving than any of them and the treatment plan we are on is the standard, we have done nothing different.

Hearing about the kids that are struggling keeps me grounded, it reminds me that we never know when this disease will show it's ugly head again. It could be tomorrow, it could be never.  It's a reminder to be thankful for every sticky mess and tantrum.

Because of these kids I will continue to do what I can to raise awareness about childhood arthritis. I don't care if Mia is 30 years old and never has another flare again, I will never forget this experience. I will be walking every December for Jingle Bell Run, I will continue to be an advocate, I will continue to raise funds to find a cure. 

I will always be in these kids corner, they deserve it and so much more.

JAM 2013

Holy smokes JAM was fun!!!  I haven't been to the Mall of America since I was a kid and I forgot how enormous it is.  I think I heard there were around 2,000 people there.  I'm from a small Wisconsin town, I've never been a big fan of crowds so it was a bit intimidating.  I think the total raised that day was just shy of $140,000!!  I am so excited we got to be a part of it. 

Our team raised $1,015!!!  We dressed as "Where The Wild Things Are" with Mia as "Max", it was adorable.

Not the greatest picture quality but left to right it's me, Lily, Theron, Kirsten, Sissy, and Mia

Mama and her little monster

Gummy holding Mia and big cousin Lily

After the walk we hit the theme park, had lunch, and did the aquarium. If anyone gets to the Mall of America I highly recommend the aquarium.  They had 15 foot sharks, jellyfish, sea turtles, tons of really cool exhibits!  Mia was pretty silent through the entire thing, she would look up at the giant sharks swimming above us and was completely in awe.  Every so often she would whisper "kiss" in my ear and wanted a smooch, which I'm always happy to give out.  

By this time we had been in the mall a total of 7 hours, I can't believe Mia made it that long!  She did nap in the stroller for a little over an hour but that's still a long time for any kid.  I was ready to relax so we headed back to the hotel for some swimming and dinner. Poor Mia was just completely exhausted from the day so we laid low and snuggled the rest of the night. 

Mia watching all the fun at the theme park

It was so fun spending time with Kirsten and her fiance Theron.  She's Mia's friend who has Still's Disease, what they call SoJIA when you're an adult.  By Sunday morning I was more than ready to pack up and head home.  Traveling is fun, but with toddlers it's just so exhausting for both Mama and baby.  Plus I was really missing my boys :)  Mia slept almost the entire 3 hour drive home. 

Mama's sleepy little monster

Getting away is fun once in awhile, but coming home is always the best part.  Just the excitement from the boys, hearing them yell "MAMA'S HOME MAMA'S HOME!!!" before I even walk in the door, their little feet jumping up and down, ripping through the bags to see what I brought them.  It melts a Mama's heart and reminds me that THIS is my favorite place to be, home with all my babies.

Cookies for a Cure

 

Last week I held a fundraiser at my work for our upcoming trip to Minneapolis to attend JAM (juvenile arthritis march). I held casual days for a donation and a Valentines Day bake sale and raised $800!! My co-workers and employer are AMAZING!  I really can't say enough good things about them, they've stood by me through everything with Mia.  All the long absences when we were hospitalized, our many many appointments every month, they've always been Mia's cheerleaders.

 

Thank you to everyone who helped with the fundraiser!  I think Sissy was in the kitchen the entire week before the sale :)

 

Adorable little cheesecakes



Everything was perfect!

Mia enjoyed her brownie :)

 

 

Next weekend is JAM and I'm beyond excited!  I've got 3 pretty amazing arthritis hero's on my team :) Sissy, Kirsten, and of course my Mia.  I'm excited to hopefully connect with other families and see Mia interact with kids who are just like her.  Mia has been feeling great so I know this is going to be a wonderful trip! 

 

117 more days until medicated remission!!