Why Busy Boxes are one of my favorite IBD mom hacks

When you’re a parent keeping your kid(s) entertained and engaged throughout the day is a constant challenge, especially as most of us continue to hunker down at home. When you’re an IBD parent, throw extended bathroom breaks, overwhelming fatigue, and debilitating pain into the mix. Keeping up with your kids, while making sure they’re safe and not getting too much screen time can sometimes feel like an insurmountable task. Just as it’s imperative we are proactive at managing our IBD, it’s also extremely beneficial to be proactive as parents. This is where busy boxes come in.

I first heard of this concept when I was pregnant with my daughter Sophia. My son wasn’t even two when she was born. I had intentions of breastfeeding (and I did), but between nursing and pumping, that’s hard to do when you have a busy toddler running around the house, while managing the day-to-day of life with a chronic illness.

What’s so great about busy boxes is that you can be creative, tailor them to your child’s age and interests, and do so without breaking the bank. As a mom of a 3.5-year-old and a 22-month-old, with winter approaching in the Midwest in the middle of a pandemic, I’m starting to update my busy boxes for the long months ahead. I started this past weekend. I went to the Dollar Store and got this haul for a mere $14.

All this for only $14!

Whether you’re at Target, Hobby Lobby, or on Amazon, you can pick up little activities as you go to continue to keep the content within the busy boxes fresh.

Creating your busy boxes

Sensory busy box: Hide farm animals, dinosaurs, or cars in rice, pasta, or kinetic sand.

Themed activities. My daughter loves Frozen, so I included stickers, puzzles, books, and trinkets. My son loves dinosaurs and sea creatures so I will keep that focus in mind as I update his busy boxes.

Letters/Words and Numbers/Counting: Include items that help your child learn the alphabet, recognize numbers, spell, learn opposites, matching and rhyming.

Shapes: Puzzles, felt designs of food and people, and paint-by-sticker books, you get the picture.

Storing your busy boxes

It’s best to keep busy boxes out of reach from your children so it’s something that’s not always accessible. That way, it feels like a fresh new activity. We keep our busy boxes stowed away in the kid’s bedroom closets (where they can’t reach them). As an IBD mom, I recommend keeping a box nearby the bathroom so if needed, your child can sit at your feet and be entertained with little to no effort on your part. Busy boxes also come in handy when you’re trying to cook dinner or having to be on a Zoom call for work. I knew it was time for me to update Reid’s busy boxes this week when I looked over during a Zoom call and he was jumping up and down on a bag of opened pretzels. Fun times! 🙂

Helpful busy box resources

Still looking for some inspiration? Pinterest is a great resource to check out ideas and to come up with activities for your little ones.

Here are some Instagram handles that provide helpful activities and guidance about educating and entertaining your child at home (no affiliations, just giving them a shout out) in hopes of helping you:

@busytoddler

@countingwithkids

@schoolathomeandbeyond

@simplybessy

@playdough2plato

@bestideasforkids

@happytoddlerplaytime

@dayswithgrey

@modernpreschool

@growingupyang

As we gear up for the winter months and this pandemic drags on, I hope you find this useful as an additional tool in your chronic illness parenting arsenal. I know it does my heart good to know I have something fun and engaging to share with my kids, especially on the days when my Crohn’s interferes with my plans or expectations for the day.

Self-care isn’t selfish: Using my birthday as a re-set button

One of my friends recently said I need to start doing more for me, that once I fill my own cup that energy and that fulfillment will spill onto others, without making me feel depleted and like I’m constantly in survival mode. As an IBD mom of two, who has lived with Crohn’s for more than 15 years, these challenging times we’re living in have forced us all to pause and refocus on what’s important and what we need to do to get by.

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Today is my 37th birthday. Sounds a lot older than I feel, but chronic illness has a way of forcing you to grow up and mature well beyond your years. Between the pandemic, mom life, and my advocacy work, there hasn’t been much time for a breather. I feel as though I’ve been coasting for awhile. Coasting through the day to day. Coasting through remission. Coasting just to make it through.

I don’t want to coast anymore

If you’re feeling the same, please follow my lead and that of others, who have recognized they’re ready to do more to improve their quality of life.

I want to stop being such a “yes” person.

I want to stop making excuses.

I want to stop waking up when my kids call out for me and instead start my day with a cup of coffee outside on the patio or a workout, followed by a shower, while the house is calm and quiet.

I want to stop not asking for help.

I want to stop staying up so late binge watching TV or scrolling through my phone.

I want to stop going months on end without a night out with my husband (we’re going on a date tonight for the first time in over six months!) IMG-7109

I want to stop working seven days a week and being at everyone’s beckon call and instead set aside days where I’m offline and able to live in the moment.

I want to start prioritizing my health, my well-being, my marriage, my friendships, who I am outside of being a mom and a person with chronic illness, because while that’s a lot of me—it’s not all of me.

Finding the ‘Joie de vivre’

Let’s face it, this coronavirus nightmare isn’t ending anytime soon. Much like a chronic illness diagnosis—there is no end in sight. We all rise to that challenge day after day, and don’t think twice. I fear if I don’t start spending more time for myself, I may put my remission in jeopardy and that scares me, big time, because when you’re a mom and a wife, your flares impact a lot more than just you. IMG-5066 (1)

I look at this 37th year with a lot of hope and a lot of possibility. I’m eternally grateful for the life I have and the family and friends I have around me, near and far. Recognizing there’s a need for change is similar to the importance of being proactive in managing your illness and doing all the things you can to set yourself up for success—whether it’s seeing countless specialists for medical care and preventative screenings, taking medication, getting blood draws and scopes, etc.…I look at this form of self-care as just as important in managing my Crohn’s and giving myself the best shot of staying out of the hospital and flare-free. IMG-6382

Cheers to the next 365 days and beyond! Thank you for following my journey and for your support through the years. This blog is like one of my babies and being able to speak to you through it is one of the most cathartic aspects of my patient journey. If you’re feeling like you’re in a bit of a rut or a funk, remember self-care is not selfish. Now I just need to practice what I preach.

Serving as the Glue to Keep My Care Together: Advice from an IBD mom

For as long as Danielle Fries can remember, Crohn’s disease has been part of her story. Even though she was officially diagnosed with IBD at age 13, she had stomach issues since infancy. Over the last 16 years, she has tried medications, diet adjustments, holistic treatment options, and therapy to reach a happy balance and remission. This week she shares her experience of flaring during pregnancy and how she managed to bring her baby girl into this world and take care of herself at the same time.

When I found out I was expecting, my GI health was stable. I was only taking Lialda and my most recent colonoscopy showed minimal signs of disease, which left me feeling confident. After my first OB appointment, I was referred to MFM (maternal and fetal medicine) for a consult solely because I had Crohn’s and the pregnancy is considered high risk when you have IBD. The MFM specialist took my history, let me ask more than enough questions, and ultimately decided I was on track for a healthy pregnancy. We parted ways feeling confident that my disease was under control and I should return in the third trimester for one more consult to confirm all was well.

My Crohn’s disease had different plans

I struggled early on with morning sickness but something about those stomach pains felt different. As a Crohn’s patient for more than a decade, it can be easy to tell when something is off. By 12 weeks, it was very evident that these symptoms – cramping, nausea, burning, bleeding, the works – were more than just morning sickness. I was on my way to a full-blown flare and my little one growing inside me was stuck for the ride.

My first feeling was fear. I was terrified enough about becoming a mom, but now that my Crohn’s complicated the pregnancy, my mind started racing. Would the baby be able to grow properly? Would the baby end up with complications? Would I make my baby sick? Will my baby end up with Crohn’s like me? The anxiety and unknown of the situation felt beyond overwhelming and I knew I needed to find the right support system to make me feel somewhat in control of all the chaos.

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29 weeks pregnant with baby Nora

Turning to my most trusted fellow IBD warrior, my mom

My mom was my first source of reason. She could understand and relate to what I was going through more than anyone since she too has Crohn’s. She got diagnosed while pregnant and flaring with me! While her Crohn’s has never been as severe as mine, it really helped to find someone who related to the fears and uncertainty I was experiencing and made it through with a positive outcome.

I was extremely fortunate to find a group of specialists to help bring some answers and clarity to my journey. The entire pregnancy I was in close contact with both my OB and the MFM. The MFM was honest in her lack of understanding of how Crohn’s disease can fully affect the pregnancy and referred me to a GI she trusted. My new GI doctor became my confidant, my champion, my source of calm in the pregnancy. She specialized in the intersection of women’s health and Crohn’s disease, with a specific interest in pregnant women. Finding a GI doctor who I trusted to lead me with a care plan for both my Crohn’s and my baby’s development was the greatest sense of relief I felt since the day I found out I was expecting.

Struggles in the Second Trimester

As I entered the second trimester, I struggled to gain weight and it became apparent that my baby was suffering from intrauterine growth restriction (IUGR). My doctor’s visits became more frequent, the tests (non-stress tests, growth ultrasounds, blood flow ultrasounds) increased and I found myself at the doctor 3-5 times a week. As the visits and tests increase, so did my constant questions, fears, and uncertainties. Never ever be afraid to ask questions – you are the one on the journey and deserve to understand what is going on!

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Final date night at 37.5 weeks

I quickly learned that while I was lucky enough to have three doctors in my court supporting myself and my baby, I still had to be my own advocate. Each doctor had their own niche of where they could help, and I had to serve as the glue to keep my care as one seamless plan. I trusted all the doctors, but wish they could have just had a conference call titled “What the heck to do with Danielle Fries and baby?” rather than leave me playing telephone in the middle. But I learned to be the squeaky wheel to advocate for my health and my baby’s health and not fall through the cracks.

An early induction

After many weeks of testing, deliberation, questions, and my baby’s decreasing growth, my doctors and I decided as a team that an early induction was the best course of action. The OB and MFM felt confident that my baby would grow better on the outside than on the inside and the GI doctor wanted to be able to get my health back in control. I trusted my doctors and asked way too many questions, but felt more confident with a plan of action.

My trust in my care team paid off. Baby Nora was born teeny at 38 weeks and measured in at the 3rd percentile. She spent a few days in the NICU while she gained her strength and learned to breathe on her own. Now that teeny nugget is 6 months old and weighing in at the 90th percentile! I complain daily about how heavy she has gotten and that carrying my baby is more work than going to the gym, but I feel so fortunate. Every single roll (and trust me, they are endless) is a reminder that this girl and I were cared for by the best team of doctors who were by our side every step of the way and gave us both our health. Just after giving birth, I started a new treatment regimen of Stelara shots every 4 weeks and I finally feel like I have my Crohn’s disease back under control.

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Three lessons from one IBD mom to another

  1. Find doctors/care team you trust. You will be talking to them a lot and you need to feel comfortable asking anything.
  2. It is okay to be scared. The unknown is scary and add in the hormones, and it’s a recipe for more! But as much as you may be afraid, you can and will do it and your baby will be okay too!
  3. Be willing to adapt. Whether it’s your timeline for getting pregnant, your birth plan, your own treatment regimen, testing, doctors visit frequency, something is bound to change. I really did not want to be induced (I had heard horror stories of 4 days in labor), but ultimately all my doctors agreed that was the best option for me the baby. And things worked out fine (better than I ever expected!) DANIELLE

 

The steps one IBD mom and teacher takes to stay healthy, while being immune suppressed

Biologic drugs have the ability to give many of us in the IBD community a chance to live a much fuller, and well-rounded life. But there are trade-offs, especially when it comes to our immunity and the ability to fight off infections. As a mom of a 2-year-old and 6-month-old whose been on Humira for more than 11 years, I’m extremely cognizant of protecting my kids from sickness to not only protect them, but myself. I often feel as though people may think I’m over the top with worrying about illness in my household, but quite honestly, unless you or someone you love is immune compromised, it can be a difficult concept to grasp.

This week–a special feature from a Maryland elementary school teacher with indeterminate colitis. Meet Lisa Lacritz. lisaShe’s a 38-year-old wife and mom who juggles two autoimmune diseases. She also has Hashimoto’s disease. Since she started on Remicade in 2018 following her IBD diagnosis, she’s experienced the difficulty of  warding off illness while being an elementary school teacher and a mom to a young child.

“Shoes off, hands washed!”  My son knows the routine by heart. Every time we come into the house, shoes come off and hands get washed. I like to think that all of my years spent worrying about germs when I didn’t need to be, were fantastic training for when I actually needed to be concerned.

When I was diagnosed with IBD, I was hesitant to get on a biologic because of my fear of being immunosuppressed. I’m an elementary school teacher and when I started on Remicade infusions, my son was only six. I basically spend my day in a Petri dish. fullsizeoutput_269aDealing with the symptoms of IBD was more than enough–how on Earth would I be able to handle that plus avoid picking up viruses at school and in public?

Taking steps to be proactive 

After I got sick on the second day of school last fall, I decided that washing my hands frequently wasn’t going to cut it. I have always been a frequent hand washer, especially at school, but I needed more protection. At first, I was nervous about how others would perceive me. There were a lot of confused looks by coworkers and students when I would politely decline to use someone else’s pen. I started carrying a pen with me everywhere to ensure I wouldn’t have to use a communal pen. Now people know that I always have “my” pen with me and that I don’t share it with others.

Another thing I’m very careful about is touching door handles and knobs, especially the door to the main office. The main office is where you can find the school’s health room, where every sick kid passes through. I either wait for someone else to come and open the door, or I use a barrier such as a paper towel to open it and then wash my hands right away.

I never touch my face and I keep my phone in a plastic bag (quart size bags work great!) so that I keep school germs at school. Kids are definitely puzzled by that last one, but I explain that I need to keep germs away as much as possible, and if I need to touch my phone then my phone gets the germs on it so I protect it with a plastic bag.

Worrying less what others thought and making my needs a priority

fullsizeoutput_3800I really needed to stop caring about what others think and prioritize my health. One of the most surprising things to me was that people really don’t understand what immunosuppression means. Some people think I’m just a paranoid germaphobe even after I’ve explained that I’m immunosuppressed. They don’t understand that a simple cold for them, can mean days of sick leave for me due to a secondary infection. Or a fun day swimming in the bay can mean a bacterial infection for me that lasts for weeks and causes symptoms similar to a bad flare.

Yes, it is mentally exhausting to worry about immunosuppression on top of all the other things chronic illness brings. Plus being a teacher. Plus being a mom.

As much as I hate getting sick, the worst part for me is missing out on doing fun things with my son. IMG_0580Somehow my body knows when we have something fun planned and chooses those times to conk out on me. When I’m lying on the couch at home feeling sorry for myself while my husband and son are at a friend’s New Year’s Eve party or Memorial Day BBQ (both events I missed this year), I try to remind myself that Remicade is what allows me to lead a relatively normal life and be able to do things like go sledding with my son on a snow day and take him Trick or Treating. I couldn’t do those things when I was in a bad flare before treatment and definitely can appreciate them more now. I just make sure shoes come off and hands are washed right when we get home.

 

Taking care of yourself and your sick child, while battling IBD

It’s never easy to see your baby under the weather. It’s a hopeless feeling when the only way they can communicate is by crying or acting differently. It’s difficult to manage your own chronic illness and keep yourself from spiraling out of control, as you worry about the well-being of your little one. IMG_9473It’s been a rough few days in the Hayden household—our almost 13-month-old son has been battling days of hives and an allergic reaction that we can’t seem to pinpoint.

The perplexing nature of his health and the unknown of what the next hour will bring, is reminiscent of life with Crohn’s disease. Trying to manage symptoms to bring comfort, the mystery of what’s sparked the problem and the emotional rollercoaster that goes along with it.

As an IBD mom, my focus is solely on getting my son to feel better. But, it’s difficult to take this on as you battle your own disease that preys on stress and worry. A disease that tends to surface when you’re going through difficult times. A disease that tries to distract you from the task at hand. It’s been exhausting to carry my son back and forth with me to bathroom as he crawls around and pulls on the toilet paper. IMG_9522As I feel burning sensations in my abdomen at the end of the day, the internal conversation of what could be happening within my own body consumes my thoughts. I can’t help but worry that I can’t go down. I can’t allow my disease to flare when my family needs me most.

I’m going to pause now and say something to all the moms and dads who have children with a complex medical condition. A condition that requires daily care, attention and worry. I simply can not imagine all you endure. Reid has hives. We’ll get to the bottom of it. We’ve talked to the pediatrician, gone to urgent care and have plans to see an allergist. But this reality is NOTHING compared to what so many families face every day. IMG_9472So, the last thing I want to do is sound like I think I have it so bad—because trust me, I keep everything in perspective and know I’ve been blessed with a healthy baby. My goal is to provide insight into motherhood with IBD and the challenges it can present at times.

As we endure life’s unexpected ups and downs—it’s imperative we listen to our bodies, get as much rest as possible and stay on top of disease management. As most mothers do, we tend to put our needs to the wayside. But, in doing so, you set yourself up as an easier target for your disease. It’s a difficult balance, but managing your own illness still needs to be a priority. When you have a spouse and children, your IBD is not just about you, but your entire family. Ask for help when you need it. Take your daily medication and stay away from trigger foods that can ignite additional symptoms. Run an errand by yourself. Take a long shower. Give yourself time to process the stress you are going through and remember to breathe.

As an IBD mom, by taking care of myself, I know it’s part of how I take care of my son. He is completely dependent on my husband and me. If you lose sight of the importance of caring for yourself and doing all your can to control your disease, it will come back to bite you in the ass. Literally and figuratively.

I’m only 13 months into motherhood. IMG_9419Each day is a learning experience. Much like my initial diagnosis of Crohn’s disease nearly 13 years ago, I know I’ll continue to grow and find comfort in my new role. Navigating unknown waters and experiencing illness within your child is all part of it. No matter how many years go by, as parents, we’ll never be experts, but we’ll continue to evolve and discover what works for us personally and as a family.

Find the balance. Use your voice. Your journey as a patient has prepared you for motherhood in ways you never thought possible. Trust your mom gut. As women with IBD, there will be difficult days when the brain fog, fatigue and pain overwhelms you and you have to push through to care for your child. But, there will be many more days where you feel strong and happy—and your child will look up at you with love in their eyes and a smile on their face and remind you that you’re the best thing in their life. Hold on to the feel good days, the magical moments—and know that while the tough times in parenting and as a patient are draining, they are fleeting.