First of all, I’d like to thank all of you that have left comments, emailed, texted, and posted on our Facebook pages. Every ounce of support has been appreciated and has been invaluable when it comes to our attempt to approach each day with positivity (even though some days it’s really, really, really hard).
Our last few weeks have been filled with doctor appointments, home health visits, fireworks, birthday parties, milestones, and visits from family. And, we have some good news about Elia’s health–we’ll get to that too.
Baby Zavi (Zavier) is growing like crazy. He’ll be FOUR months old on the 26th of July. He’s developing quite the personality and is voicing his opinions more often. We were surprised to watch him roll from his belly to his back and then back the other day (the 10th). Now it’s not uncommon to watch him “log roll” all over his crib. I’m not sure I’m ready for him to be on the go!
We spent the 4th of July with family–and it was so much fun. Sure, we had to make some changes to what we would have normally done but it was a fantastic day nonetheless. We hung out at home during the day and lounged around (it was a holiday after all). Once the kids woke up from their naps and the sun backed off a bit we headed down to my hometown for an evening BBQ at my sister’s house. Elia had a wonderful time playing with the ‘big girls,’ lit a few smoke bombs, and jumped on the trampoline. We celebrated several birthdays and Zavier met some new friends and family. There was also a BIG surprise and engagement announcement which made us ALL happy. Congratulations, Lori and Lyle!
Elia turned 2 on July 6th. We celebrated with a few of her friends a week early. She had such a good time playing with some of the sweetest kids on the planet–so happy we were able to make it happen.
We were pleasantly surprised to wake up on her actual birthday to cloudy skies. Yes, CLOUDY SKIES! We jumped up, packed up the kids and the car and headed back to my hometown to make it the best 2nd birthday possible. We called our go-to photog Casie and she cleared a little time to meet us at the park for a quick 2 year photo shoot. Even though the 30 minutes flew by (the amount of time we were comfortable having her outside) it was so fun to watch Elia play (still rockin’ her hat and spf, of course). Then we had lunch and managed to get in her first swim of the summer. I can’t say it enough, it was the.perfect.day. It was therapeutic for all of us.
The last few weeks have proved to us that we can still live. We can still participate in the world around us. And, we can still enjoy outdoor events and activities–we just have to do them a little different than most…and, that’s okay.
Last but certainly not least–Elia’s health. I suck at dramatic lead-ins so I’ll just get right to the point. She is doing amazing. Seriously, we couldn’t be happier–(LIE. We’d be happier if she didn’t have JDM–but it is what it is).
She’s been doing great with her daily medications (oral steroids, calcium, vitamin D, Zantac, and folic acid). She also gets a big dose of steroids and a dose of methotrexate via her port once a week. We’re so lucky to have an amazing nurse that comes to our home each week to administer them. The visits last just a couple of hours and Elia doesn’t seem to mind much. I will say that shortly after the nurse leaves, and the medicine has had time to kick in, Elia seems to get a huge burst of nervous energy from the steroids that lasts a couple of days–pair this with the normal toddler energy and we have what we like to call “The Perfect Storm.” It mostly appears in the form of clingy-whinybutt-itis. BUT, considering the amount of drugs her little body is trying to process we give her a free pass for a couple of days.
We met with Elia’s Rheumatologist on Friday (7/12) and have some fantastic news and an update to her diagnosis. Here goes.
ALL of her labs are or are approaching normal. Her white blood cell count is still slightly elevated but her doc wasn’t worried as she’s attributing it to her steroids.
Rash-Her first sign of the disease.
Her rash is almost gone which is another sign that the medicine is doing what it is supposed to and her body is responding well. She’ll most likely have the discoloration/loss of pigment from the rash for awhile yet but I can definitely attest to the fact that the rash no longer looks ‘angry’–a huge victory.
A change in her diagnosis.
The doctor explained to us that she had a second team of radiologists review her MRI from her hospital visit on May 28th. She said that this 2nd review found a small amount of muscle inflammation in her upper thigh. Because we now have visible proof that the disease has affected her muscles we lose the “amyopathic” descriptor (which means, without the muscles) and Elia is officially straight-up Juvenile Dermatomyositis. Shortly after the huge pit developed in my gut and just before the tears were about to roll–the doctor said something that made it all better. She said that she actually prefers a diagnosis of just plain ‘ole JDM rather than the amyopathic variety. Why? Because JDM itself is rare but they know so much more about it compared to the amyopathic strand. In other words, it’s easier to predict and treat JDM than the other. So…yay? Please don’t misinterpret my reaction as ungrateful. My point is, I never thought I would be happy that the disease was also affecting her muscles and at that very point in time it was hard to process. The good news is that the small and teeny muscle inflammation is just that…so teeny that there were two teams of radiologists that were on the fence to whether or not it even existed. Bottom line is, it’s there, it’s minimal, and completely reversible leaving zero ‘damage.’ And, THAT, my friends, is FABULOUS NEWS!
Where do we go from here?
The doctor is SO pleased with her progress that we’ll be changing her weekly infusions to every other week. This makes us so happy but a bit nervous. Until we know how her body and the disease will react to the down dose we don’t know if she’ll have another flare and see the activity of the disease increase on the off week. It’s a wait-and-see sorta thing which makes us very, very nervous. Thankfully, our team of docs are monitoring her very close with blood work and visits so we’ll know right away if something isn’t going as it should. She’ll do the infusions every other week for two months and assuming all goes well she’ll then go to once every three weeks for two months, and then once a month, and then…none (hopefully).
Her methotrexate dose will increase a bit and will now be given once a week in the form of an injection by nurse Mommy instead of by a trained professional. Thank goodness I have years of giving myself injections for IVF cycles to fall back on. Although, I will say, giving my sweet baby an injection will be much much harder.
All of her other meds will stay the same. They’re basically supplements and preventive care.
So long story…still long, sorry about that–Elia is doing great. We’re making progress and learning as much as we can about juvenile dermatomyositis and how to keep her as safe and as healthy as possible. We are discussing getting involved in some fundraising efforts this fall and we’ll post more on that very soon.
Life has kept us pretty busy so I’m not able to update as often as I’d like. But, I promise that if anything changes significantly I’ll let you all know. I guess the ‘no news is good news’ applies here. On a happy note, most days Elia seems like every other 2-year-old and for that we’re very thankful. Want proof?
Sorry about the audio, the little man was sleeping so I couldn’t turn up the volume much. Basically, she’s “rollin’ the dough,” “spreadin’ the sauce,” and tossin’ the pie.”
’till next time!