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Hope
I figured Hope was a good post title on Easter. I’m usually not good at naming posts, so I pretty much go with whatever comes to mind first since none of them are likely to be witty anyway 😉
Over the last couple of weeks I have been trying to make sure to capture some things that hopefully won’t be happening, or at least won’t be happening as often. On the 27th of March Maura had what might be her last weekly infusion (at least for now and she will still be on daily oral steroids and weekly chemo meds) of high volume steroids. These infusions started right away – three the first week – two the two after that – and then one for the next four weeks. This past Monday she just got the chemo meds. So tomorrow we get our first labs after no infusion, lots of fingers crossed that her numbers are still improving. Her activity level is going up by leaps and bounds, so we are hopeful that tomorrow will bring good news. Needless to say, I made sure to take some photos of what might’ve been her last infusion, I wanted to be sure I had something to show her someday, so she can see all that she went through and what a strong little girl she is.
Then it was my birthday and I used it to my advantage to get some good photos with all of us. Had to set up the fancy camera for Wes, so in return I got these shots 🙂
This last week she had many visitors, both sets of Grandparents, an Aunt, and three cousins. It’s been amazing to see the compassion that seven, ten, and even four year-olds have and show to Maura. As crappy as JDM is for her, all these amazing people are reaching out to her to help her and it’s working 🙂
Today was no exception – an entire Easter meal that was gluten free. All the candy in the egg hunt – gluten free. She could have everything today and for the first time in a long time she played with her cousins like normal and it was amazing.
And in honor of new beginnings – Maura planted her own seeds today 🙂
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Introducing Oscar; Green Bay Newborn Photographer
I love babies. I especially love babies that belong to good friends. These two couldn’t have adapted into the parent role any more naturally. They are both so relaxed and just happy to have this little miracle to hang out with. And seriously – could this baby be any more perfect?! He’s just amazing.
And I also love the way this home is decorated – example – coolest book ends ever.
And I was so excited to see this quilt out! (I may have made it…) LOVE the tree.
Dad is a member of the band The Vega Star (if you haven’t already you should definitely check them out), so there was plenty of great equipment to get Oscar started with, never to young to start these little ones on some good music.
A smiling baby on fur on a guitar amp? Yes please.
Thanks for having me guys 🙂 It was an honor to capture your perfect little addition!
Double-edged Sword
I have developed a love/hate relationship with steroids. I know that’s cliche (because that’s the relationship everyone has with steroids), but I hate that the medicine that is helping Maura to feel better -good side of sword – is also causing her to gain weight, be bloated, and the incessant, “I need something to eat, I need something to eat” when she has just consumed PLENTY of food – difficult side of sword. Mind you, I’m a mean mommy who is really only giving her fresh fruits and vegetables for snacks, in an attempt to help her body feel better. We actually are doing a gluten free diet and have found that it improves her behavior along with helping to stop/slow down the weight gain that inevitably comes with high dose oral steroids.
She’s also on methotrexate, a chemo therapy drug. It will allow her to get off the steroids faster than kids with JDM have done in the past – good side of the sword – but when it means that huge handfuls of her hair come out when I wash it – bad side of the sword. Seriously – she just got hair! But I’m learning quickly that this whole situation is way beyond unfair.
Maura’s doctor called this week to tell us that her numbers continue to improve. We are so blessed to have a doctor who not only has the knowledge necessary to treat this rare disease right here in town, but even more blessed because he is a doctor for all the right reasons, will sit and talk with me at 6:30 at night instead of rushing off the phone, making sure we are comfortable with everything that’s happening.
Maura is coming back to us slowly – personality first so that’s nice. At the end of this week we also finally saw her want to get moving a bit more. She has a different gait than normal, but the more she moves the sooner her strength will return thus bringing back the muscles that got so damaged by the JDM. It will all take a really long time. The Dr. said that if we have no bumps along that way that the steroids will last for at least 2 years and the methotrexate for 4 years. We may also need to add more medicines, but crossing my fingers for now that we can keep that to a minimum.
I’ve been trying to keep up with photos of her, even though (I’ll be brutally honest here) sometimes it’s really hard for me to see her with the bloated face. I know though that it’s only temporary and can not (and do not) want to imagine where we would be without the steroids.
Maura started her own therapy – coloring. She colors almost all day. Everywhere we go. And turns out her favorite medium is paper and black pen. I’ve been documenting them on my instagram feed (you can follow me there, my name is iamacouch). They are pretty interesting.
She had a lot of fun last week helping make her dad’s birthday cake.
And I know I haven’t said this enough, my parents have been so supportive and amazing. There aren’t words to describe how wonderful they have been. Especially in the department of getting Maura to laugh… Her dad too. And I truly believe the laughter is the best medicine 🙂
We cannot thank everyone enough for all their continues thoughts and prayers. (And treats for Maura in the mail!) So proud to have a 3 year-old that loves to get snail mail and looks forward to it each day!!
Introducing Oscar – Sneak Peek!
So excited to meet this little guy this past weekend! Many more to come 🙂
Colette – 6 months; Milwaukee Area Family Photographer
Remember this beauty? I love that even though I moved to Green Bay, I still get to see this family. We almost rescheduled the little lady was under the weather, but I’m so glad we didn’t. I love being able to see these little ones as they grow up, and grow up she did! I could not believe how tall she is!!! (The mom takes on the big job of making my hair look good even though we both know that I am not one for any maintenance – so it’s not a small job 😉 )
I have lots of favorites from this session 🙂 You can obviously see the joy she brings to every moment.
And how much do you love this rug?! It’s cotton so it’s a nice soft, moveable play mat that can go in the washing machine = brilliant!
Everything about this next one is perfect – the eyelashes, the baby wrists, the little smirk, the baby hands and baby toes…
Perspective
So through this whole “our child has a chronic disease” thing, it’s sometimes hard to maintain perspective. Some days I’m angry, some days I’m sad, others hopeful, and others all of the above, sometimes at the same time. The truth is this, it could be worse and it could be better. It is what it is and how we choose to tackle daily life will be a big part in how Maura recovers. What I can do is be grateful for all the blessings we do have – a wonderful medical team, amazing friends and family, an amazing home, and most of all – hope.
We spent our week waiting on lab results. Early in the week the results were elevated, mid week and at the end of the week they were back down. We are learning all new acronyms, CPK, ALT, AST, SED, etc. and I hope there will be a day when we don’t think about them so much. With all the medication there are a lot of side effects and we are working hard to help Maura avoid as much as possible. Steroids can cause a lot of weight gain and an effect they call “moon face” so we are on a gluten-free, low sodium diet. It really seems to be helping stop more inflammation from happening. It’s kind of hard to talk her into some of the things that are now a part of her reality like staying in the shade, wearing hats, staying inside during the middle of the day, but hopefully her perspective will change as she starts to adapt and understand. This weekend and especially today we finally saw a little bit of Maura starting to shine through. Here’s hoping that we’ll see more and more of her each day.
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Lovely Lola; Green Bay Family Photographer
This family is near and dear to my heart. I was lucky enough to meet their mom at work and we have been friends ever since. We had our first kids only a couple of weeks apart and I maybe owe her some money from being my personal therapist listening to all my troubles that first year of parenthood. Here is a little bit of her little Lola’s second photo shoot 🙂
And of course a few of Max – he was playing so intently and with so much focus. It’s so crazy to see how much he’s grown up!
Today
So today is Rare Disease Day. I think we are supposed to wear wild animal print in honor of it? Not sure yet. I’m sure next year we will be more prepared. What we have found out so far is that we are so blessed, in so many ways – wonderful friends and family – wonderful support from everyone we know – amazing doctors and nurses that are taking such great care of our Maura.
Yesterday we got these:
Looks like a macro shot of Hershey Kiss right? But if you look closer you can see that it’s one (of many) home made rice crispie treats shaped like kisses. And each has a unique – hand-written message just for Maura.
And this is just half of the wonderful cards, drawings, and other gifts that she’s gotten in the mail.
The other half is hanging in her bedroom. And she is loving all the wonderful books and activity books that everyone is sending. She takes them with her to the hospital and they help distract her and pass the time while she sits through the infusions. (And she giggles a lot when paper doll princesses wear the wrong dresses and each others arms!) So many of you are praying for her and taking time to send her some positive energy and I want you to know that it means so much. Thank you.
Maura is doing well. We haven’t seen any physical signs of improvement in her muscle weakness, but the doctor is checking her labs nearly daily and seeing improvement each time. It’s going to be a long road. Kids with JDM can take from 3-6 years to get into remission, but at least 3…so hopefully we can get there, no matter how long it takes.
I realized that since she started not feeling well and wanting to be carried everywhere, I haven’t taken time to take her picture. So far I only get about 5-10 minutes of my Maura, where she giggles and is silly and not crazed from all the steroids. During those times, I’m trying to take some photos of her. Not to track her progress, but so that she will know later in life that she was beautiful through and through, even when she didn’t feel well. (Plus taking pictures is therapeutic for me, so it’s a win/win – might even be a win/win/win because then you get to see her happy too 😉 )
And chapstick is still a must. In every little princesses life, of course.
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Tomorrow
Tomorrow is a big day for our family. And not in one of those “I can’t wait for tomorrow!” kind of ways. Our daughter, our spirited, lively, full of personality little girl will start a long journey to try and beat Juvenile Dermatomyositis, an auto-immune disease.
I took these pictures on the day of our first semi-real snow storm this year.
I didn’t know that something was starting that would change her forever.
I thought the red cheeks were just wind burn and that I needed to be more adamant that she keep the scarf up to protect her perfect skin.
Or that in a month I’d give anything to see her run.
Or that just seeing her walk normal would be like heaven.
Or that she’d look up at me and say, “I’m scared Mommy – scared of how my body doesn’t work anymore.”
Or that I’d be crying while trying to find a picture book on going to the hospital so I could prepare her for what’s about to happen.
And I always knew she was one in a million, but absolutely sure I didn’t need her to get a disease that affects only 3 in a million to prove that point.
I know that life isn’t fair. And I know that many families face hard things everyday. And I know we will make it. But somehow I wish I could make it so my little lady didn’t have to grow up like this. Couldn’t it be me instead? – I’ve already had all the fun a kid could have playing in the woods, running, playing sports, getting into trouble. She will get to too, I know. Just hard to stay positive in the face of this. But we will. For her – we will.
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