Fifteen

Has it really been fifteen years since the day that we brought our firstborn daughter home from the hospital?

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Back then it was impossible to imagine what she would be like as a little girl, running around, with hair… 🙂

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Nowadays it’s difficult to remember back to the baby, toddler, preschooler and kid that she used to be. She’s taller than I am and wears a larger size shoe. She’s old enough to start learning to drive.

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As of this week, Abbi is an international traveler as well – spending her birthday in three different airports and her spring break with her high school robotics team, competing in Calgary.

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She is still completely unique – weird, quirky and fun. She defiantly refuses to wear makeup or use any hair styling products. She’s her own person and she doesn’t care what anyone else thinks. I am in awe of her confidence.

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A self-described ‘fangirl’, she loves all things Dr. Who and Marvel’s Avengers, along with other BBC shows: Sherlock and Merlin. Her favorite ‘fandom’ remains the Night At The Museum movies and she has all three movies completely memorized. This has sparked interest in American history, presidents, cowboys, ancient Rome and more – making her list of ‘likes’ very eclectic.

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Abbi has memorized pi, down to the 70th decimal place.

She loves pop music, but has some classics on her faves playlist as well – especially Bohemian Rhapsody. Favorite bands include Coldplay and One Republic. She can’t stand Justin Bieber.

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Abbi has written books – she incorporated all of her friends as characters and now has a group of authors who all edit and write the books together, including her younger sister Hannah. As a group, they’re on the sixth ‘Dragons’ book.  One of Abbi’s best friends printed and bound the first book from a Pinterest tutorial and gave it to her for her birthday last year, so technically – she’s self-published. Sort of. 😉

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She also love to bake, draw, paint, and be creative in lots of other ways. Her 2015 Christmas list was created as a Google presentation (partially in French, and most of it rhymed). image

She turned a childhood terror of storms and tornadoes into a vocation – her plan is to go to school for meteorology and become a storm chaser. Although she doesn’t want to be an engineer, she had a blast doing VEX robotics last fall – she likes to be hands-on.

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Abbi cares for others – always the one to give up or give in when it comes to conflicts with her sisters, and she worries greatly if things aren’t ok with all of her friends, family and loved ones.

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Words that come to mind to help describe Abbi? Brash, loud, quirky, unique, fun, cheerful, ticklish, thoughtful…

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It’s awfully quiet around here without her this week.

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Happy fifteen, Abbi!

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NonVerbal Learning Disorder

Now that we’re through the mess of a year that was 2015 and Hannah is through with her intensive chemotherapy treatment, we’ve had the chance to focus on some other areas that had gotten largely ignored for a while. One of these is my youngest daughter, Becca.

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When Becca was younger, she was a pretty typical toddler and preschooler. She got along well with everyone and we were relieved that she didn’t seem to have the social issues that Abbi had struggled with at that age. However, as Becca has gotten older, we’ve begun to notice some things that she either hasn’t outgrown the way we thought she would, or that are more glaringly obvious when you compare her to other kids her age.

I’d always felt that Becca had some tendencies toward ADD – she finds it almost impossible to sit still unless she’s intensely focused on something, and even when sitting on our laps has always squirmed and wiggled. She is very unorganized and doesn’t pay attention to where she puts things down, so she is constantly losing items and has no idea where. When she was younger, we compensated for this with lots of reminders, labeling items, attaching her mittens to her coat – and I found out when she was in first grade that the bus driver would routinely run her lunch in to the office after Becca had left it on the bus in the mornings.

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I also wondered if some of the social issues we noticed with Becca had to do with the fact that she spends a lot of time around Abbi, who we know is somewhere on the Asperger’s/Autism scale, albeit very high-functioning. I figured that Becca was simply picking up social cues from Abbi, but over the past year, we’ve noticed things that go too far beyond what that simple explanation would account for. Now that Becca’s in fourth grade, the gap between where she is at socially compared to the other kids her age is widening.

Last fall, as I was tucking Becca in to bed one night, she began to cry and began telling me that she has no friends, the other kids tease her, and she doesn’t know why. We knew that she doesn’t really have any close friends, but her third grade teacher last year said that she seemed to get along well with all of the kids. This year, that hasn’t been the case. With Hannah and Abbi already in therapy for chemo-related stress and issues (Hannah) and anxiety/panic attacks (Abbi), it wasn’t difficult to add Becca in, and she’s been seeing the therapist every 2 weeks since. She loves the therapist, and especially loves the hour of uninterrupted one-on-one time with an adult where she is the focus of attention. She craves attention, so this is right up her alley. The therapist has been working with her on role playing and trying to work through why she doesn’t seem to fit in with the other kids.

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At Becca’s well-child checkup, we also began doing some of the initial screenings for ADD and other things. They referred us to a child psychologist and he had us complete additional screenings. After three visits with me and Becca, plus going through the screenings that Ron and I completed, along with Becca’s teacher, the psychologist feels that there are two things at play, either one or both.

First, she scores high on the autism screening for what used to be called Asperger’s and is now referred to as ‘Mild Autism’. This didn’t surprise me at all – although she does fit some aspects of Asperger’s, others don’t’ seem as close of a fit, especially when you compare her to Abbi. The second thing that the psychologist mentioned is something I’d never heard of before – it’s called NonVerbal Learning Disorder (or NonVerbal Learning Disability), other wise known as NLD.

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I was confused at first – NonVerbal? She doesn’t have any trouble talking at all – in fact, sometimes it’s hard to get her to stop talking. But when it was explained to me, it made perfect sense. Kids with this disorder have difficulty in picking up on the nonverbal social cues that most of us take for granted. We can easily tell when someone is joking or being sarcastic or being silly, because we read their nonverbal cues without even realizing it. But a kid with NLD doesn’t know how to interpret those cues. This is why Becca takes everything we say very literally. She also isn’t able to easily take her experiences in one situation and generalize them to know how to behave in a different, but similar situation. This is why new situations make her nervous and why she can’t handle stressful or emotional situations in books and movies easily.

Now that Becca is older, she can see that she’s different – that other kids easily joke and laugh together, while she doesn’t. She knows there are these social cues and rules that she doesn’t understand, but she doesn’t know why she doesn’t understand them, and that makes her anxious and frustrated. At school this year, her teacher has tried putting her in seat groups with just about every combination of other kids but it wasn’t until she let Becca be a ‘loner’ and sit in a desk that’s not grouped with others that Becca has had an easier time at school with no meltdowns. She works better in groups when it’s only part of the time instead of being forced to socialize with other kids all day long.

Academically, she’s doing well, which is a great thing, but we are starting to see her grades fall slightly. Our school doesn’t start using letter grades until fourth grade, so we don’t have previous years to compare her grades to. For the first trimester this year, she got all A’s and A-‘s. The second trimester just ended and she brought home an even mix of A’s and B’s. Still good grades, but we don’t want to see that downward pattern continue. Becca is one of those kids that rushes through her work to get it down and considers ‘done’ good enough, rather than done well. She doesn’t seem to understand what the point is – it’s either ‘done’ or it isn’t. Her thinking is very concrete and black-and-white, with no greys, which is also typical of NLD, I’m discovering.

The traits of a person with NLD are (I’m quoting directly from this page, except for my comments in bold):

  • Has trouble recognizing nonverbal cues such as facial expression or body language Yes, this fits Becca very well.
  • Shows poor psycho-motor coordination; clumsy; seems to be constantly “getting in the way,” bumping into people and objects I don’t trust her to drink from an uncovered cup at a restaurant still at age 10 – she doesn’t seem to understand where her body is in space or pay attention to what’s around her.
  • Using fine motor skills a challenge: tying shoes, writing, using scissors She doesn’t have much of a problem with these, other than that it took her longer than ‘normal’ to master them.
  • Needs to verbally label everything that happens to comprehend circumstances, spatial orientation, directional concepts and coordination; often lost or tardy I see some of this in her, but not to a high degree. She does label or ‘correct’ things that she hears someone say that’s incorrect or she wants to make sure they understand what the ‘correct’ thing is. This comes across as being disrespectful to adults or those in authority but it’s more a matter of her need to make sure her world is in order.
  • Has difficulty coping with changes in routing and transitions Yes, but not to a high degree
  • Has difficulty generalizing previously learned information Yes, very much so
  • Has difficulty following multi-step instructions Yes, this has been a struggle since she was small. We have to break everything down into small tasks and be extremely specific. The example that I always give is that I can’t just tell her to ‘go wash your hands’ – I have to not only specify that she needs to use soap, but I have to also tell her to use water too, or she’ll just wipe her hands on the towel and think that’s good enough.
  • Make very literal translations Yes. Very specific and literal.
  • Asks too many questions, may be repetitive and inappropriately interrupt the flow of a lesson Yes, she doesn’t understand the ‘ebb and flow’ of conversation and interrupts a lot. If she’s thinking or feeling something, she can’t let it go and will ask incessantly or complain over and over, even if there’s nothing we can do right then to fix the situation.
  • Imparts the “illusion of competence” because of the student’s strong verbal skills I wouldn’t call her verbal skills ‘strong’ – she does have speech issues as well. And she tends to speak quickly and slur her words together so that she’s difficult to understand. If you’re defining ‘strong’ verbal skills by quantity rather than quality, this fits her to a T.

Essentially, she does well enough to get along ‘well enough’ in most cases, other than socially. I see her with kids her own age at school and at Girls on the Run practice, and she does stand out to me there. She wants to fit in so badly, but just has no idea how.

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I see a lot of reading and research in my future – the psychologist gave us a book to get started, and I’ve been looking up information online too. We have one more appointment with the psychologist next week, and he’ll give us his recommendations then. That may include a referral to the hospital’s ASD (autism) program too, for further screening and possible diagnosis there. Many times NLD and autism (of varying degrees) co-exist in the same kid – there are so many similarities between a high-functioning person with autism and one with NLD, which is probably one reason that we see Becca having a lot in common with Abbi, but not fitting exactly quite into that description.

Becca’s 10th birthday was in January. After 2 months of delaying, we finally held her birthday party last weekend. We delayed in part for financial reasons, but more so for the fact that there weren’t any clear cut ideas of who to invite – she really doesn’t have any close friends. We finally ended up inviting one little girl from down the street along with two girls from school (who are in the other fourth grade class, not Becca’s class) and took them to an indoor trampoline park. They jumped and ran and ate pizza and it seemed to go really well, which was awesome to see. Becca had a blast.

Hopefully with all of this testing and determining, we can come up with some strategies and solutions, so that next January there won’t be any question of who to invite to her 11th birthday party.

Deb

Blowing off the dust over here…

It’s been a while, hasn’t it! Since I’ve posted on either of my sites, that is. I last posted on momstakeonthings.com last October and it had been much, much longer ago for this site. I recently decided that I needed to recombine and put everything back into one place. One blog. Just me, writing whatever strikes my fancy.

I decided to go back to my roots, essentially. Back to writing for the joy of it – which is why I started this site in the first place. So it makes sense to bring it all back here. I’ve imported the posts over from momstakeonthings.com – all of the important ones, anyway. I’ve also brought over the knitting-related posts from my short time writing at Just Casting On as well. So yes, everything is all here. I kind of feel like I’m coming home in a way.

I can’t guarantee how much I’ll post – the writing bug has left me over the past few months, but so far this post is flowing well, so we’ll see. My momstakeonthings.com site now forwards directly over here and the deb@momstakeonthings.com email is also defunct. You can reach me at debmomof3(at)comast(dot)net.

Yep, it’s good to be home. 🙂

Broken

I’m supposed to be happy right now.

After more than nine months of intensive chemotherapy treatments, my 12-year-old daughter is nearly done and the end that had loomed so far ahead as to seem unreachable for so long is finally almost upon us.

I should be ecstatic, jumping for joy, more than ready to resume our ‘normal’ lives again.

So why is it that all I feel lately is numb?

I AM happy – for my daughter, who is kicking cancer to the curb and not looking back. SHE is feeling everything and all of the above that I know I should be as well. And she deserves every moment of joy that the idea of just being a normal almost-teenager brings to her.

And yet, I am exhausted. Physically. Mentally. Emotionally. Spiritually.

I don’t even know if I know how to live a normal life anymore. Is there even a ‘normal’ left once the word cancer worms its way in to your life? The chemo may be almost done, but there’s a lifetime of worry ahead. Maybe someday this will all become commonplace enough that I will find a way to not let it consume me, but now that cancer has struck its way into my family’s heart – twice even – it doesn’t feel like there’s any going back to the anxiety-free, naïve life I lived before.

Hannah has faced cancer two times – and she is incredibly brave, and strong. She is also a pre-teen girl, so there’s no shortage of drama, attitude and eye-rolling as well. She now hates doctors and hospitals with a passion that I can understand, if not endorse. I only hope that someday she’ll be able to reconcile the good they do with the upheaval they have brought into her life.

There is no escape from the fact that for the rest of her (hopefully very long) life, she will always be a cancer survivor. With scans and tests in her future, and the potential for late-term side effects, recurrences, or even a secondary cancer, to emerge at any time.

She and I will both need to learn to live with the newest normal our lives have brought to us. As the parent, my job is to take on all of the worry for her, for as long as I possibly can. I only hope that I am even half as strong as she is, so that I can bear it all for both of us, without breaking.

Even though I already feel broken.

Six Months in

On January 22nd of this year, an IV dripped toxic chemicals into my daughter’s body for the first time. Chemicals that are necessary to stop any more spread of her cancer, but which ironically could cause additional cancers in her themselves. Or damage her heart. Or her bladder. Or cause other issues that could follow her for the rest of her life.

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For six months now, she’s endured numerous pokes, port accesses, tests, blood transfusions, IV drips and more. She’s learned how to drag an IV pole from her hospital bed to the bathroom and back while half-asleep, without blinking an eye. She’s thrown up in the pale pink nausea basins – and in the hospital sink and bathtub, when a basin wasn’t at-hand. She’s lost her hair, her eyebrows and eyelashes – and quite a bit of weight. Foods that she used to love don’t sound good to her anymore and the list of what she will eat keeps shrinking.

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Six months ago, these long weeks and months stretched endlessly ahead of us as we tried desperately to understand and accept what was happening. We couldn’t see an end in sight – we could barely think ahead to the next week. We didn’t know how to get through the endless-feeling hospital stays or what to say to the well-meaning, “let us know how we can help!”. We didn’t know what we needed or how we were going to survive what we were told would be a pretty intense 8 to 9 month chemo regimen.

Life goes on, even in the midst of upheaval and cancer treatment. And these months have zoomed by so much faster than I ever could have expected. We’re nowhere near the end yet – only just over halfway done, due to delays and chemo holds, but once we hit that halfway point, I suddenly began to be able to breathe again.

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I equate it back to when I had 2 small kids in diapers at once, and my time was spent in a sleep-deprived haze of just trying to make it through the day. And then suddenly you look up one day and realize that those two kids aren’t so little anymore and you don’t have to be in survival mode anymore. The world went on while you weren’t paying as close of attention. Somewhere in there, I think I missed a decade or so of pop culture – I don’t think I could name a song title or movie from the early 2000’s because I was too busy watching 5,403 episodes of Dora the Explorer and listening to The Wiggles everywhere we went.

This isn’t exactly the same – there are no cartoons or singing Australians… But that whole mechanism of being in survival mode just trying to get through the day… That feels awfully familiar right now. Although I think I’ve finally turned the corner from simply getting through the day and am starting to notice the larger world around me again.

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Our ‘normal’ has changed, of course – in ways I never could have imagined six months ago. I’m always aware of Hannah – where she is, what she’s doing, how she appears to be feeling… The worry never goes away, and to some extent, it probably never will. I’m more comfortable leaving my other two girls home alone for hours on end than I ever thought I would be with Abbi only being 14. I know most of the nurses on the 9th and 10th floors of the hospital by sight if not by name. We have a routine in place for hospital stays – I know to put the air freshener in the bathroom as soon as we walk in the door when she’s admitted, to try and mitigate the ‘hospital smell’ in there because it makes Hannah nauseous right off the bat. I know where to get my own linens and towels without having to bother the nurses, I can silence an IV pump so the incessant beeping doesn’t drive us crazy while waiting for a nurse to add a bag of saline or fix the tubing. I know that ‘upstream occlusion’ will likely occur at least once a day and that it’s nothing to panic over. I know when the hospital cafeteria opens and closes for each shift change and when hot meals are available versus just whatever’s left over.

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I look at the board to see who’s on the floor that we might know and recognize many of the names that I see on a regular basis. The Child Life folks know that they have to make Hannah get up and play a game instead of asking politely because she’ll always say no if given a choice, but has fun when she does get up and about. They know that she’s truly not shy, just avoids talking as her way of coping with having to be inpatient so much. They’ve been known to coax a smile or even a laugh out of her from time to time. Especially when therapy dogs are involved. 😉

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This new normal includes a lot of uncertainty – my girls know that when Hannah and I head up to clinic, we may be gone for 2 hours or we may be there for as many as 6 hours. They know that texting is the best way to get a hold of me because my phone doesn’t always get good service up on the 10th floor. They know that when we head up to the hospital for an inpatient stay, we may end up back home if Hannah’s counts are too low. We can’t make long-range plans or look more than a week or so ahead because so much of Hannah’s schedule is dependent on how her body’s handling the chemo at any particular point.

And yet, none of this fazes us anymore. It’s just how things are.

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I realized just how far we’ve come when I was talking to another mom of a newly diagnosed Leukemia patient – a friend and classmate of Abbi’s whose family also goes to our church. She is still at the very beginning of that survival mode stage, overwhelmed by everything that’s going on. I remember those days vividly. And I mourn a little for the person that I was back then. I would give anything to never know the feeling of giving my child injections or waking up to the sound of her throwing up in a bucket across the hospital room. But that’s our reality now – as it is for so many other parents at our hospital and all of the other ones across the country and around the world. Too many kids fighting cancer. And too few funds and resources to help find better cures that work, and work without all of the often horrific side effects and complications.

There are five kids (that I know of) who live in our town right now and are fighting cancer. Two are Abbi’s classmates who are heading to the high school this fall. Two are elementary school kiddos. And Hannah, starting middle school. Two of those kids have just been diagnosed this month. One has just relapsed for the third time. The other two (including Hannah) have also had relapses this year.

Two kids we know in treatment at our hospital have no current hope for a complete cure. Another is planning to undergo a bone marrow transplant as her only hope to survive. And yet another has just been accepted into a trial of an experimental treatment that may extend his life – or may not. So much pain, sorrow and worry. My Facebook feed is full of way too many pages of kids fighting cancer, or foundations created in the names of kids who have lost their lives to it.

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We are fortunate that Hannah has (so far) not had any major side effects from chemo. She hasn’t had to be rushed to the emergency room with a fever or pain, as so many other kids we know have been. Most days she feels pretty good, just tired. And she’s always cold. Outside of hospital stays, she’s had very little nausea. We are grateful for this and for every day that brings us closer to the end of treatment. For the first time, I really feel like I can actually see an end to it. It’s still months away at this point, but the goal is in sight.

So much has changed over the past six months. I only wonder what the next six have in store for us.

Join the Boston Marathon #JimmyFundWalk to help raise money for cancer! #ad

I participated in an Ambassador Activation on behalf of Influence Central for the Boston Marathon Jimmy Fund Walk. I received a promotional item to thank me for my participation.

Six months ago, I had never heard of the Jimmy Fund.

Previous to 2013, I also had the ‘luxury’ of not knowing that research funding for childhood cancer from our government is limited to only 4% and that 46 children are diagnosed with cancer each and every day.

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In January 2013, we lost that luxury when our then 10-year-old daughter became one of the 46. You never, ever think that *your* child will get cancer. Not until you hear those words from the doctor’s mouth and your world is never the same again.

Even through surgery and recovery, we still never thought of ourselves as a ‘cancer’ family. It was over and done with, right? Sure, she still went in for scans every 2, then 3, then 4 months but the few days of anxiety and stress were always followed by a hefty sigh of relief when we got that ‘all clear’.

Until we didn’t.

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I don’t know the statistics on how many kids relapse with cancer or how many tumors recur or spread, but statistics don’t really matter when it’s your kid. This time, we are living cancer almost 24/7 as Hannah has finished half of her chemotherapy treatments. This coming Wednesday will mark the 6-month mark since her treatments began, so we still have a long, difficult road ahead for the rest of 2015 as well. Every two weeks she goes inpatient for either 2 or 5 nights, with multiple clinic visits and blood count checks in between.

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Hannah has been fortunate in many ways. As with her originally knee tumor, this lung tumor was also completely removed with clear margins, and her first set of post-recurrence scans came back clear. She hasn’t had any extra hospitalizations (so far) for fevers or infections. She hasn’t had mouth sores and although her appetite has tapered off, she is able to mostly maintain her weight in between hospital stays. But, she struggles with nausea during every chemo round and the anti-nausea drugs knock her out. She lost almost all of her her hair early on, and for a 12-year-old girl, that’s been extremely traumatic. Nobody, including us, has ever seen her bald head – she even sleeps with it completely covered. She’s received many transfusions to build up her hemoglobin and/or platelets. She’s struggled with bloody noses and fatigue often. We watch her carefully all the time, and she’s had to avoid school and fun events at times because there’s been too much risk for germs to spread.

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True, 6 months ago, I didn’t know what the Jimmy Fund was and had only heard of the Dana Farber Cancer Institute in Boston in passing. During this year, I’ve made great strides to educate myself and my family, and to look for ways that we can both support others also struggling against cancer and help raise awareness (and funding) to support additional research to help find ways to eradicate all cancers, for kids and adults. Cancer has touched my family in more ways than one over the past year – in January, my 85-year-old father passed away from Rhabdomyosarcoma (typically a pediatric cancer), only 8 days before Hannah’s chemo treatments began.

Cancer is an evil, ugly disease.

Jimmy Fund Walk Image 7The Jimmy Fund was created in 1948, to raise money for cancer research. The annual Boston Marathon® Jimmy Fund Walk presented by Hyundai is the Jimmy Fund’s largest one-day fundraiser and allows participants to follow the 26.2 mile Boston Marathon course, to raise money and honor those in their lives who are fighting, have fought or have lost their battle with cancer. Anyone can walk on September 27th – and if you aren’t going to be in Boston this September, you can also register as a virtual walker, as I have.

Whether you’re walking in-person or virtually, there are many tools available on the walk webpage to help you fundraise, and there are rewards you can earn for reaching specific milestones with your fundraising as well. Registration for the walk is easy and you can register right online. There is a $25 fee for walking in-person, but registration is free for virtual walkers, who also have no specific fundraising goal. If you are walking in-person, you can use the coupon code BLOG to save $5 on the registration cost!

No matter your walking ability, there’s a route for you. You can walk the full 26.2 mile Boston Marathon course (the Hopkinton route), or a 13.1 mile half-marathon course (the Wellesley route). There are also two shorter routes available as well – the 5-mile Boston College route and the 3-mile Dana-Farber route. All four of the routes finish at the Copley Square finish area in Boston, where you can also enjoy live music and food on the day of the event.

For more information about the walk, you can check out their Facebook page, follow them on Twitter, or see the videos shared on their YouTube channel.

There is a massive need for more funding – for cancer research, as well as for care of patients undergoing treatment. Participating in the Boston Marathon Jimmy Fund Walk, whether in-person or virtually, is a fun and easy way to help raise funds. Ninety cents of every dollar raised goes straight to the Dana-Farber Cancer Institute to support their programs and research initiatives.

Jimmy Fund Walk Image 4I’m registered as a virtual walker – and hope to raise as much money as I can, in honor of both Hannah and my dad, as well as all of the other kids we’ve met who are fighting cancer and the ones who have gained their angel wings. No child should ever have to lose their life to this monster, but all too many do, every day. Even those who survive, often end up with health issues and challenges that impact the rest of their lives – usually as a result of the treatment that saved their lives, not the cancer itself. We need better, updated treatments that target only cancer cells and leave the healthy ones alone. We need better compassionate and palliative care for the kids for whom treatment is no longer an option.

It may not be *your* child whose life is at risk. Or maybe tomorrow, you will be one of the 46 families whose child has just been diagnosed and whose lives will never again be the same.

Either way, you CAN help make a difference.

Help Walmart and Pampers Support Children’s Miracle Network Hospitals (Giveaway, ends 7/11) #sponsored

This post is sponsored by P&G and I was provided with a Walmart gift card as a thank you for sharing this information. As always, all opinions stated here are 100% my own or those of my family.

This year has truly been a challenging one for my family – in ways we never anticipated. When my 12-year-old daughter began chemotherapy treatments in January, we knew that we would be spending a great deal of time at the hospital, which would add a lot of stress to our lives – logistical, financial, emotional… It’s been difficult but also rewarding, to see her quiet bravery each day, through each port access, infusion, blood count check, transfusion and more. She is a fun, quirky, amazing tween – who loves to read, play soccer and volleyball, write stories, spend time with her friends and above all else, just be a normal kid as much as possible.

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We are very blessed to have a world-class children’s hospital right here in town, so only have to travel 15-20 minutes each way. We’ve met other families who travel much greater distances for every hospital admission and clinic visit, who can’t bring other kids up to the hospital to visit on a regular basis, have regular visits from friends and family or run home to grab something they forgot to bring. Helen DeVos Children’s Hospital has innovative medical programs and an incredible, caring staff who we trust implicitly to take the very best care of our daughter. The Child Life staff have been especially amazing with Hannah, who tends to shut down and ignore everyone when she’s in the hospital – but the Child Life folks are so good at drawing her out, getting her out of bed and up and around, playing games, meeting other kids on the floor, participating in activities and reminding her that she’s not just a cancer patient right now – she’s still a kid.

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During her last inpatient admission a couple of weeks ago, she was convinced to go downstairs to a hospital-wide luau party being held for kids and their families. Hannah and her sisters decorated cookies, played games, got temporary tattoos, snacked on smoothies and cake, and watched hula dancers perform. Hannah was inpatient during the first half of the week at Camp Catch-A-Rainbow, a local YMCA camp that offers a week for kids who have been treated for cancer – she originally wasn’t going to go late and finish out the week at camp, but the Child Life staff went out of their way to help convince her – and she had an absolute blast, made new friends and can’t wait to go back next year.

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Our hospital is part of the Children’s Miracle Network (CMN), which works to raise funds and awareness for 170 children’s hospitals all over the US. As anyone with kids in their life knows – at any time, a child you love could become sick, or injured or need medical care of some sort. Or get cancer. In fact according to the Children’s Miracle Network, every day 2,218 kids are treated in CMN hospitals for cancer. That’s not just a statistic – many days, my kid is one of those two thousand. Tomorrow, yours could be. Every minute, 62 kids enter a CMN hospital, for any reason.

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This month, Walmart and Pampers are donating $200,000 to the Children’s Miracle Network. If you would like to make a donation as well, you can visit Walmart.com/cmnh for more information. And if you purchase Pampers (or other P&G) products at Walmart, a portion of the proceeds will go to the CMN as well. My kids have all been out of diapers for years now, but Pampers were one of the brands we trusted when they were little, so I love seeing big company like Pampers and Walmart giving back in a way that helps kids everywhere, of all ages.

The infographic below was put together to show why it’s so important to support Children’s Miracle Network Hospitals – and there is some very helpful information there, some of which I referenced above. But the true reason why I support the Children’s Miracle Network, and Helen DeVos Children’s Hospital in particular, is heading back into the hospital tomorrow for her next round of inpatient chemo – Hannah, and every other kid like her being treated at HDVCH or other hospitals around the US.

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GIVEAWAY TIME!

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New eBook from OnStar helps kids learn what to do in car emergencies #KeepingKidsSafe #sponsored

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This is a sponsored post for SheBuysCars on behalf of OnStar. As always, all opinions stated here are 100% either my own or those of my family.

It’s something most of us do every day – multiple times – and yet we very rarely think about the risks.

We buckle our kids up into their (correctly installed) car seats, or watch to make sure they buckle themselves up once they’re old enough, and we breathe a sigh of relief knowing that they’re as protected as possible by those government-approved devices and straps.

Yet, are they truly safe? And do they know what to do if there’s an emergency and you end up injured or unconscious?

Whether a car is parked or moving, there is always potential for an emergency to occur. Vehicles are tempting for kids to play in or on, and it only takes a split second for something to go wrong. One of my most vivid memories as a young child is of my mother panicking in a parking lot because she accidentally locked her keys inside her car, on a hot day – with my toddler brother inside it. I don’t remember how she ended up getting inside – I just remember the emotion as she first reacted to what happened.

Emergencies can happen in an infinite number of ways and it’s impossible to prepare for every possibility – but you can make sure that your kids know not to panic, how to call 911 or press the OnStar button (in OnStar equipped vehicles), how to get a hold of you or another family member, and when it’s safe to stay in the vehicle versus leaving it. This is the reason that OnStar has put together the new ‘Keeping Kids Safe’ eBook for parents and kids to read through together and help kids understand what to do in the case of an emergency.

OnStar

The 8-page eBook includes both a pre-quiz to see what kids already know as well as a post-quiz to see what they have learned from reading the book. There are step-by-step instructions for how to handle various sorts of emergencies (fire, submersion, etc.) and an emergency information form for parents and kids to fill out together with everything that they will need to know in order to talk to first responders or 911 operators in the case of an emergency occurring with no conscious adult there.

In 6 short months, my oldest daughter will be of age (here in Michigan) to get her learner’s permit and take driver’s education classes. She’ll move from being a passenger 100% of the time to being in control of what really is a dangerous machine. We may or may not feel that she’s ready next January – but at some point she will be, and we’ll need to feel confident that she understands not only how to drive the vehicle, obey traffic laws and be a safe driver, but also what to do if the car breaks down on the side of the road, blows a tire, or runs out of gas. Most importantly, how to stay calm, contact either us or the appropriate authorities, keep away from moving traffic and most importantly to NOT panic. This eBook is not only a good source of information and resources, but also a conversation-starter to begin talking about how to react as either a passenger or a driver when something unexpected occurs.

You can download the Keeping Kids Safe eBook for free, at http://bit.ly/1LiCGqk. Also plan to join in on a very important Twitter party on July 8th to talk about kids and car safety – you could win one of two 2 Emergency Kits with a $25 gift card!

#KeepingKidsSafe Twitter Party

Join us for a conversation about vehicle safety and children at the #KeepingKidsSafe Twitter party on WEDNESDAY, July 8 (note this is NOT the normal #TMOM Twitter Party). RSVP and register to win one of 2 Emergency kits and a $25 gift card  on SheBuysCars.com.

WHEN: Wednesday, July 8, 2015, from 9 – 10 pm ET

WHO: Host @SheBuysCars

PANELISTS: @ScottyReiss @SueRodman @Judy511 @meaganshamy @karynlocke @LeAuraLuciano @travelermom @DebMomof3 @BeckyAdventure @PaulEisenberg @RWeThereYetMom @dianarowe @shannonentin @CarissaRogers @goodenufmother @RobynsWorld

Follow hashtags #KeepingKidsSafe #SBC

3 Tips to Help Older Bedwetters #ConquerBedwetting #sponsored

Acorn Disclosure

This is a sponsored post for Acorn. However, al opinions stated here are 100% my own or those of my family, as always.

Potty training is probably one of the biggest challenges that parents will face – at least in the early years. I remember being completely stressed out over when, how, where and how often my kids went to the bathroom and at times despaired of ever being completely diaper-free. With the advantage of hindsight, six years past our last potty trainer, there really wasn’t a huge reason to worry. Kids eventually get it. Right?

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Not always. And especially – not always at night. Daytime potty training ended up being a breeze for two of my kids, the oldest and youngest, once they put really put their minds to it. However, my middle child was stubborn about it and regressed a couple of times before finally being daytime trained. Nights – well nights have been a bigger issue. And for a longer time than I ever thought possible.

For many years, we used products such as Pampers UnderJams – and they worked great. The bed was dry in the mornings and nobody could tell by looking at my daughter in her cute pajamas or nightgown, that she wasn’t simply wearing underwear underneath. Even sleepovers were easier – she simply discretely took care of the used product in the morning. Most often, I’d had a chat with the other mom beforehand and they would show her where the trash was so she could find it easily after waking up.

Nowadays nights are a bigger challenge, for many reasons. She has outgrown UnderJams now, so we end up doing plenty of laundry. And while undergoing chemotherapy, they give her a lot of IV hydration at the hospital when she’s inpatient, so there’s really no way to avoid nighttime accidents. Even kids who are normally night-trained often have issues during chemo – but at least there the nurses are used to this happening and know how to easily deal with it. It doesn’t make it easier to work on nighttime training at home either though, so for now we’re in a holding pattern until chemo finishes later this year.

PrintIn general, there are a few things that we’ve found can help at home, so if your child is getting older, outgrowing the UnderJams, and nights are becoming a lot damper than you’d prefer, here are some things that are worth a try:

  1. Avoid drinks before bedtime. I know – this one is kind of a no-brainer. But sometimes you have to look hours ahead and start restricting liquids right after dinner. It’s a challenge when kids are thirsty before bedtime, and this doesn’t work for everyone, or even always for us. But it’s worth a try for the nights that it does make a difference.
  2. Try waking them up to use the bathroom. This is another one that can be hit or miss for us, especially since she’s a very deep sleeper and it takes considerable effort to wake her up enough to get up and go to the bathroom. But, if we make the effort, it will work for a few weeks at a time, so definitely worth a try. We usually wake her up between midnight and 1:00am – this tends to be her ‘magic’ hour where if we catch her then and get her up to the bathroom, more often than not, she’s dry in the morning.
  3. Make sure you have them checked out. There can be physical or medical reasons why a child has difficulty staying dry at night, so make sure you let your child’s doctor know what’s going on and see if any tests are warranted. There are some medications that can help too – not necessarily a good fit for everyone, but maybe worth a try if nothing else has worked. Just do what’s best for you and your family. 🙂

Bedwetting is a lot more common, even at older ages, than I ever knew. It’s something that doesn’t generally get talked about since it can be an embarrassing subject for both kids and parents. Just in the past week though, following the #ConquerBedwetting hashtag on Twitter connected me with several other parents with kids around my daughter’s age, who all still struggle with this issue. Hearing that we’re not alone – that’s a huge help.

I know there adult incontinence products that we could try for my daughter now that she’s older, but they aren’t really made with bedtime in mind. We miss the features of UnderJams that made them so easy and discrete to use. The lower waistband that didn’t stick up over the edge of her pajama pants, the quiet material that felt and sounded more like cloth, and the ultra-absorbent Night-Lock core that kept leaks from happening are all things you don’t find elsewhere once kids outgrow their UnderJams.

Just like with daytime potty training, I know that this too shall pass. Someday, after chemo is done and our lives are back to what used to be normal, we’ll look back and remember those days when bedwetting seemed like such a huge deal. Her body will finally ‘get it’ and she will be ready.

Super fangirl

It all started with Abbi.

In fifth grade, she went on a field trip to the local movie theater and one of the film choices (with parent permission) was The Avengers. Abbi chose it as the lesser of two evils and has been hooked ever since. The Iron Man movies. Thor. Captain America. Even the Hulk, although she sat through that movie mostly under protest – Hulk is not her favorite Avenger.

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Iron Man is. Followed by Captain America and then Thor. I’d never seen these movies beforehand, but I’ve now seen most of them, if only in bits and pieces as Abbi watches and re-watches them. When the Marvel Cinematic Universe expanded to television, I thought Abbi would explode in happiness. She’s obsessively watched every single episode of Marvel’s Agents of S.H.I.E.L.D. as it comes out and we all suffer through the hiatuses with her. This winter’s was easier than last, since she had Agent Carter to keep her occupied.

Ron watches the movies and shows with her, and I watch as well, although I can take or leave most of it. Marvel isn’t Abbi’s only fandom – she also fangirls over Dr. Who and most recently the Night at the Museum movies. But she has an obsessive personality and when she gets into something, she really gets into it. She’s loved Marvel for years now. But up until recently, Abbi was the only Marvel fangirl in the house.

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That’s no longer the case.

Over the winter, Abbi introduced Becca to the Avengers Assemble animated series and suddenly we had a second Marvel-loving little girl. Becca’s favorite Avenger is Black Widow, so it’s sad to me that it’s very difficult to find Avengers gear with Black Widow depicted – most everything Marvel is found in the boys section, including the t-shirts we’ve gotten for Abbi, all of which are either unisex or come from the men’s department. Apparently boys aren’t as into Black Widow as they are the male characters. Or at least the clothing designers think so.

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We hadn’t let Becca watch the live-action movies yet as she’s only 9 and The Avengers is rated PG-13. Becca is very sensitive when it comes to television and movies – she often will refuse to watch new movies, especially in the theater where she can’t leave the room if things get intense or scary. She regularly wanders in and out of the room as we’re watching movies at home, to avoid the parts she doesn’t want to see. But she wanted to watch The Avengers, and since she was already familiar with the characters and the general storyline from the animated shows, Ron and I talked about it and decided that it would be ok.

Hannah has steadfastly refused to have much to do with Marvel – possibly because Abbi is so very much into it. But with the new Avengers: Age of Ultron movie coming out soon, she decided that she would give Marvel a try, so over this past weekend Ron and the girls (along with Abbi’s friend C, another big Marvel fan) all sat down to watch The Avengers together.

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Becca loved it – and she stayed in the room for the entire movie. Something almost unheard of for a first viewing with her. Hannah gave it a thumbs up when I asked, which is pretty much a ringing endorsement from her these days. But – what is more telling to me is that while in the hospital today for her next round of chemo, she immediately pulled up the first Iron Man movie to watch this evening. Since Ron and the other girls were on their way, she waited until Abbi got here and then the two of them watched Iron Man on Hannah’s little netbook, sharing a set of earbuds between the two of them. Abbi had to leave before the movie ended, so Hannah finished it by herself and then watched half of Iron Man 2 before succumbing to the sleepiness of the anti-nausea meds.

Abbi received the first season of Agents of S.H.I.E.L.D. on blu-ray for her birthday a few weeks ago, and she’s already begging Hannah to watch it with her. She may be our Super fangirl but she’s no longer the only superhero fangirl in the house.

And as a geeky sci-fi loving girl myself, I wouldn’t have it any other way. 🙂

I was not asked to post about Marvel or The Avengers nor am I being compensated in any way for writing this post. We haven’t received any Marvel products or movies for review, but have instead spent our own money to help feed Abbi’s Marvel obsession (within reason, lol). As always, all opinions stated here are 100% my own or those of my family.