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Introducing Claire | Green Bay Newborn Photographer
Before I met Claire, I heard what a little snuggle bug she was, but words couldn’t describe the extent of her cuteness. She was such a sweetheart and you can see immediately how smitten her parents are with her. How could you not be?!! 🙂
Baby Head | Green Bay Area Photographer
The kids wanted me to call this “Baby Head.” They think it’s really funny.
Yesterday was their Grandpa’s birthday and we had a chance to hang out with Grandpa at his camper. We also had a chance to take a few photos of Aiden. Poor second child who doesn’t get 50 photos taken a day. I think these make up for that a bit.
Introducing Claire | Green Bay Area Newborn Photographer
Got to meet this new beauty earlier this week. Can’t wait to share some more!
Peek-a-boo!! | Green Bay Area Photographer
She sure is a beautiful little person to be surprised by! Many more to come 🙂
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Almost Normal | Green Bay Area Photographer
As you can imagine with a chronically ill child, there is a lot of talk about our “new normal.” And it’s true, our family life is different than it was and different than I thought it would be. But one thing I’ve learned is that most everyone has challenges, whether it be a chronically ill family member or just a fussy baby (which in the last week I have learned a little bit about!). So even though we have a “new normal,” I’m beginning to think that it’s just normal.
Maura had her appointment with her specialist earlier this week. He is possibly the kindest, smartest, most amazing person (other than my husband of course 😉 ). He didn’t even bat an eye at the new baby in the room, just paid attention to Maura, knowing that this is her time. She got a glowing report from her last set of labs and her height growth and physical strength is “normal” for her age. So the next steps are to keep slowly weaning off the medicine and hope that she will maintain her health as we do that. We are hoping to see some of the effects of the prednisone reverse as well – so looking for her to lose some weight and for the cushionoid face to go.
In the meantime, we have been enjoying doing things this summer that she would not have been able to do last summer. I never thought I would be so excited to see her do simple everyday tasks, but I now know how fleeting that ability can be. This weekend we are going to the CureJM conference in Chicago to learn more about the disease, treatment, and new research. The CureJM foundation is a wonderful group of volunteers that is constantly working to fund more research. Juvenile Dermatomyositis is in the orphan disease category. What this means is that not enough people are affected by it for research to be profitable to pharmaceutical companies. Makes me so sad to think that there might be a cure out there, but that these sweet kids, who are fighting so hard, aren’t considered profitable enough :(. So much of Maura’s treatment relies on medicines developed to treat other diseases, hence why she receives Chemotherapy medication. Yearly, CureJM runs a fundraiser in conjunction with its conference. If you’d like to sponsor Maura for this year’s walk, any and all donations are greatly appreciated. Just follow this link http://curejm.donorpages.com/ChicagoHalfMarathon/accouch
A heart-felt thank you to everyone who has donated and supported us through this journey so far. We wouldn’t be where we are without your support, help, and love ♥ Having said all that I’ll leave you with some photos of Maura doing “normal” things 🙂 !
Seriously – who could say no to this face!?!?
Bookworm Gardens with friends 
Playing with cousins (last year one of them had to lift her down the front stairs here and now she’s running up and down them 🙂 ) 
And strawberry picking, something we couldn’t do last year. We are so blessed to have come this far 🙂 
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Vacation Fun | Door County Family Photographer
I always get really excited when I’m asked to photograph families on vacation in Door County. Couldn’t ask for a better combination of events – Vacation – Door County – (excuse for me to spend the whole entire day up there 😉 ). This family was so much fun, it’s always a special treat for me to get to spend time with a family that truly enjoys each others company. AND they love candy! I’m still on the look out for Candy Pizza. I’m pretty sure the kids got to enjoy one after how well they did for pictures. Thank you so much for having me capture just a snippet of the fun a family can have and here’s to a fantastic rest of the summer!
Welcome Aiden | Green Bay Area Photographer
We were expecting to go into the hospital for a scheduled c-section. Nice and scheduled – Monday morning 9:00 – wouldn’t even have to get up early. But of course it never happens that way. No need for gory details, let’s just say that we ended up at the hospital at 1:00 a.m. 10 days before my due date and even though it was still a c-section, I got to once again experience the joys of very strong contractions. Anyway, life has been a whirlwind since then, with lots of extra visits to the doctor to try and work out a little jaundice. Luckily we have a biliblanket at home instead of being sent back to the hospital for light therapy. Home is much more preferable for all parties. Here are just a few of Maura getting to meet the little man (she is in LOVE, it is the sweetest thing ever, I’m soaking it in so I can remember it later when the fun of all of this has worn off 😉 )
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Brady is 1! Shebogyan Family Photographer
Brady’s newborn shoot was a dream – he let us put him in MANY different outfits and just settled right back into sleeping. He was the “model” model. Well, his 1 year-old shoot was no different (he is a bit faster…) And I can’t say enough about how prepared his mom is with props and outfits and everything. She makes it all happen so smoothly and with a genuine and beautiful smile on her face. No wonder he’s a such a dream to photograph 🙂
Newborn…
One year-old…
And then on to the cake. Although he was much more enthralled with the cake stand. Either way – it was adorable 🙂
So glad I was able to get these photos in before our own new +1 arrives. Just a little sneak peek (although I find myself with way more images to share than a “sneak peek” – oh well…) 🙂
Better with Time
I know I’m busy and *might* do too much at times, but I can’t believe that I haven’t blogged since March. I even clicked on the link a second time thinking my computer went to a specific link instead of the most recent post. Maybe just maybe it’s because I teach full-time, had two weddings, four other sessions and am 8-9 months pregnant? Just maybe.
So needless to say, much blogging to catch up on. Starting with my nephew. He turns six tomorrow. My sister has started a tradition where I take her kid’s pictures for about 10 minutes on the day of their birthday party. We’ve been doing it for 2-3 birthday’s now and it has produced some really great images of who they really are.
Josh has had a rough couple of months. He had been having headaches and his dr. decided it was time for an MRI to see if they could get to the bottom of it. I don’t know why, but something told me to call my sister that day on my way home. My sister answered, something sounded off in her voice and then she told me the doctor had called them before they even got home from the test. My heart sank. As the mom of a child with a chronic disease, I’ve received that phone call, even living only two blocks from the office. I know that sinking feeling that something is really wrong. It’s not a call anyone should ever get: speed in the medical field typically only means unpleasant things. It’s a feeling you hope that no other person on the Earth after you ever has to endure. After a couple of weeks of waiting and trying to get into a specialist, they finally found out that the MRI showed a Cortical Dysplasia. In short a Cortical Dysplasia is a malformation of the cortex of the brain which can lead to pediatric epilepsy conditions. A word we all know, epilepsy. The picture in our minds is not of headaches or a child blindly staring off into the distance for seconds or minutes. But the reality is, epilepsy can be just that, at least in the beginning.
So over the last three months their family has had to endure many new hardships; accepting a lifetime of medication (and finding the correct dose safely), learning to deal with regular blood draws, learning what seizures really look like and signs that they happened during sleep, becoming experts on strange medical acronyms and learning what numbers make you scared and what numbers can make you feel so much better. I always thought hearing my then 7 year-old nephew tell my 8 year-old nephew that “things get better with time,” concerning divorce, was just one of the saddest moments of my life, until I was setting up Skype dates for my own child with my 5 year-old nephew so they could talk about having routine blood draws and how to mentally deal with it.
Life is not fair, I know I’ve said it before, but seriously, it can still dole out gut punches pretty regularly. Seeing a medicated version of your child is simply awful, especially when you then have to feel the guilt associated with knowing the medicine is necessary, but you still hate it. So if you have an extra minute to send some positive thoughts/prayers his way, I know they’d be greatly appreciated. Considering everything I was so glad to be able to still have our regular tradition of ten minutes of photos…and hopefully we can all take the advice of a 7 year-old, wise beyond his years, and instead of being sad, just listen, “things get better with time.”
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