Bodysuit Solutions for Special Needs Kids

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I was also compensated for this post, but all opinions stated are mine. 

Davy wore an actual shirt instead of a onesie for the first time ever when he was 18 months old.  Before that, he only wore onesies to protect his G Tube on his tummy.  They kept his Mini One button covered and protected from pull-outs.

We had planned to leave the G Tube in until after the next cold and flu season as Davy generally regressed quite a bit with his oral eating when he got sick.  However, due to recurring infections, Davy's G Tube was removed earlier than planned.  Thankfully, he continued eating 100% by mouth and didn't regress too much during cold and flu season, as we had feared he might.

50+ Books for Special Needs Kids: The Ultimate List

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If your child has special needs of any kind, reading them a book about another child with similar issues can make them feel less alone.  

When I got my kids a copy of "Special Like Me" which is a book about a boy with Ehlers Danlos Syndrome just like they have, they were pretty excited.  I even took it to the school and read it to each of my two oldest kids' classes.

For children with special needs of any kind, reading them a book about another child with similar issues can make them feel less alone.  

Books that focus on special needs of any kind are not just a great idea for the kids who have them, but for their peers, family, and anyone else who could benefit from learning more about the condition (hint: that would be everyone).

With that in mind, I spent several days researching and compiling this list of children's books about various special needs and disabilities.  I hope you find a book that works for your family!   

My POTS Story: How an EDS Diagnosis Led to POTS

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I remember sitting in the shade as a kid while my siblings ran around and played in the sunshine.  I had no interest in joining them because the sunlight made me feel "funny."  I didn't know it at the time, but it was the first symptom of Postural Orthostatic Tachycardia Syndrome or POTS.

Since I was a teenager, I've had chest pains.  They're sudden and sharp, and they feel like I'm being stabbed in the heart.  After mentioning it to my doctor, she ordered an echocardiogram and an EKG, both of which came back normal so I wrote it off as me being weird again.

When I was 18, I went to a two day Christian music festival and camped in a tent with some of my friends.  It was hot and sunny the whole time, and I was absolutely miserable.  I ended up sleeping in the tent most of the time, so dizzy and nauseous that I could barely stand.  When I was able to get out and listen to some of the concerts, the sun was so bright that I couldn't see and I got a headache from squinting so hard.  I thought I'd be fine when we got home, but a few weeks later, I was still so fatigued that I couldn't keep my eyes open and not feeling well at all.  I went to the doctor who diagnosed me with a severe chronic magnesium deficiency.    

See the whole "POTS Warrior" collection in the Sunshine and Spoons Shop

I have never fainted, but I've always had issues with being dizzy and lightheaded.  I black out easily and it usually takes me a minute to feel okay again after I stand up.

Just Like Me: Toys for Kids with Special Needs

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Kids love it when their toys look like them.  From hair and eye color, to any special needs that they might have, it helps them feel accepted.  They can also help kids feel less afraid of their differences or medical conditions.

My son Davy was only two months old when he had surgery to get his G Tube.  The day before his surgery, a nurse came into his hospital room with a stuffed bunny that had a G Tube just like the one Davy would be getting.  I practiced hooking the extension tube up on the bunny before and after Davy got his feeding tube which was much less stressful than having to practice on my screaming baby.  He got his G Tube out when he was 18 months old, but the bunny still sits on top of his dresser.  I plan to add it to his memory box when he gets older.

Toys that are adapted or created to have special needs or disabilities shouldn't just be for the kids who have them though.  What greater way to teach your child that it's okay to be different, have a feeding tube, or wear leg braces than for them to play with a toy like that?

Cherishing the Firsts AND Lasts of Childhood

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As parents, we mark down and celebrate our kids' firsts.  Their first smile, first word, first step, etc.  Some people keep detailed memory books or calendars, others post the latest milestone on Facebook.

But have you ever stopped and thought about your child's lasts?  They usually slip by unnoticed until all of a sudden, you realize that things have changed.

Here are some of my kids' lasts that I wish I known about. Some were welcomed, some were sad:

A Few of My Favorite (Tubie) Things!

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For 16 months of his life, my son Davy had a hole in his tummy.

He got it when he was two months old and was unable to eat enough to grow.  His G Tube was a little button that was inserted into the surgically placed hole or stoma in his precious little tummy.  Eventually, he learned how to eat and when he was 18 months old, we were able to remove his G Tube, leaving a little pucker on his stomach that resembles a second bellybutton.

During Davy's time as a "tubie," I compiled a list of things that I found especially useful or just really cool and am excited to share them with you.  Please keep in mind that everyone is different and what works for one person, may not work for the next.

Davy's Tube Feeding Story

I used to think that only kids who were terminally ill, disabled, or premature had to have feeding tubes.  I never in a million years thought I would have a child who would need a to be tube fed.

I was so wrong.

What It's Like to be a Special Needs Mom With Special Needs

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I have 4 kids. Katie (8 years old) has Ehlers Danlos Syndrome, asthma, and a visual tracking disorder.  Nano (6 years old) has Ehlers Danlos Syndrome, asthma, and eczema.  Anna (4 years old) has Amblyopia, and Davy (2 years old) has Ehlers Danlos Syndrome, asthma, GERD, severe eczema, hypotonia, mild developmental delays, and is a tubie graduate. 

And then there's me, the source of my kids' bad genes.  I have Ehlers Danlos Syndrome, GERD, asthma, eczema, Eosinophilic Esophagitis, Postural Orthostatic Tachycardia Syndrome or POTS, unexplained sudden anaphylaxis episodes, and PTSD.  I'm what is referred to as a spoonie.

Special Needs and Chronic Illness Medical Binder Printable

When Davy was in the thick of his medical complexities, I put together a binder full of information and notes that I took with me to every appointment.  I used the binder to track Davy's symptoms, log his meds and hospitalizations, record questions for upcoming appointments, and more.  It was pretty basic...loose notebook paper shoved in plastic sheet protectors and held together in a 3 ring binder.  Nothing fancy, but it helped me stay organized and on top of Davy's care needs, especially when we switched health care providers.

Then, last year, Davy along with two of his siblings and I, were all diagnosed with Ehlers Danlos Syndrome. 

Dear New Tubie Momma

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To the mom whose child just got a feeding tube,

Right now, you're probably pretty overwhelmed.  You've just been thrown into a world you never expected to be a part of, and it's scary.  There are tubes and syringes, feeding schedules and pumps, and possibly a stoma if a G, GJ, or J tube is involved. 

Welcoming My Tube Feeding Kid Home with Nestle Health

This is a sponsored post and I received product to write my review. However all opinions expressed here are my own.  This post also contains affiliate links.

Davy had just been discharged from his nine day hospital stay.  Just the day before, he'd had surgery for a G Tube placement, and I was terrified of that little button in his tummy.

It took me several nervous breakdowns and four training sessions with a G Tube nurse in the hospital before I was even able to hook up the extension tube to Davy's Mini One Button.  Thankfully, the nurse provided me with a dvd that she had made for her patients that gave details on what to expect when your child gets a G Tube.  She also brought me a stuffed bunny? kangaroo? (we're still not sure what it is...) that had a G Tube that I could practice on without the stress of having to hook up an extension tube to a screaming, flailing two month old baby.

Meet AJ - Epidermolysis Bullosa

October is Epidermolysis Bullosa Awareness month!  In honor of that, I interviewed Barb, whose 8 year old son, AJ, was born with the disease.

What condition does your child have?
Recessive Dystrophic Epidermolysis Bullosa

How does it affect your child? How does it affect daily life?
It's a genetic condition that impacts the production of collagen. It causes his skin and internal membranes to be very fragile. He develops blisters and wounds very easily. Each day he soaks in a tub, and his bandages are removed. We lance the blisters, treat the open wounds and wrap with specialty bandages. A lot of time is spent treating his wounds. He is unable to eat much due to GI issues related to EB and is fed through a GJ tube. He vomits multiple times a day and this past year has been very hard on his eyes as well. He often has blisters in them. He is in a lot of pain and uses a power wheelchair to reduce damage to his body.

Could You Have Ehlers Danlos Syndrome?

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With Ehlers Danlos Syndrome frequently undiagnosed or misdiagnosed, it's important that people know the signs of the genetic syndrome.  It's estimated that 1 in 2500 to 5000 have Ehlers Danlos Syndrome or EDS, but so many people, including doctors just don't know what it is.  It's also estimated that 50% of people who are diagnosed with fibromyalgia actually have EDS.

What Is Ehlers Danlos Syndrome?

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You may also like Could I have Ehlers Danlos Syndrome?

Unless you've been diagnosed with it or know someone who has, you probably haven't heard of Ehlers Danlos Syndrome.  Among those who have heard of it, many don't actually know what it is.

Ehlers Danlos Syndrome (pronounced ay-lers dan-lohse) is a collection of genetic connective tissue disorders.  It affects the body's collagen which can lead to symptoms in every part of the body.  Collagen is the glue that holds the body together and when it's faulty, the body can literally fall apart.  Collagen can be found in the skin, eyes, muscles, ligaments, blood vessels, organs, gums, etc. which means that all of those systems can have issues due to EDS.

Breast is Best...Until It Isn't

In case you haven't heard, it's World Breastfeeding Week (August 1-7), a time to raise awareness and increase education for breastfeeding.

It's a good thing, it really is.  But I've met more than one breastfeeding supporter who took the Breast is Best slogan just a little too far.  Breast is only best if it's working for both mom and baby. 

Let me fill you in on my history with breastfeeding so you'll see what I mean.

I breastfed Katie for a year.  It was an incredibly rough start, and we both cried a lot in the beginning.  I had to supplement with formula because no matter what I did, I just didn't have enough milk for her, but at least we made it to a year.

To the Doctor Who Stole My Hope

Dear Well-Meaning Doctor,

You saw me struggling to hold it together in your office that day.  Davy was 6 months old, and his many medical needs were taking their toll on me as I navigated my new life as a medical mama.  He hardly slept, cried almost constantly, turned blue and choked multiple times a day, and had a feeding tube.  I was exhausted, and the mom guilt from not being able to balance his needs with the needs of my other three children was wearing me down.

You saw all that, and you made it a point to look me in the eye and ask me how I was handling everything.  I saw the concern on your face, and I knew you cared.

The Life I Never Expected

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I've always had a deep respect and interest in special needs parents, but I never thought I would actually be one.  I've followed the stories of children who had to have feeding tubes, but I never thought I would one day be a tubie mama as well.  I've read countless books and blogs about people living with life-altering diseases, but I never thought several of my children and I would be diagnosed with Ehlers Danlos Syndrome, a degenerative, incurable genetic disease.

But here I am, living a life I never expected.

What No One Told Me About Being a Parent

Guys, I'm going to level with you.  This is hard.  I had no idea that being a mom would be this hard.  Being a parent is an exhausting, demanding, often thankless job.

When I got pregnant with Katie, my oldest, I devoured every pregnancy book I could find and pored over stacks of books on parenting.  None of them even remotely prepared me for the reality of being a mom.  Sure, friends and family try to warn you what it's going to be like to have a baby, but until you are there, in the trenches, there's no way you can truly know. 

No one told me just how much poop, vomit, and other body fluids I would deal with as a parent, a lot of it with my bare hands and a few baby wipes.

15 Ways To Support Parents of Children With Feeding Issues

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It's dinner time and you know it's going to be a battle that will end with your toddler throwing his or her food on the floor or refusing to touch a vegetable because "it's yucky. *insert prolonged whine here*"  

While this is a common problem for many parents, what you may not know is that sometimes it goes beyond picky eating.

My kids are picky eaters and have all, at one time or another, given me countless headaches with their unpredictable and seemingly non-nutritious eating habits.  But when now 2-year-old Davy ended up getting a feeding tube at the age of 2 months, I was thrown into a world I never knew existed.

Sure, I'd heard of teens and adults struggling with eating disorders, but it never occurred to me that babies and children could too.  I soon found out that picky eating and a feeding disorder are two vastly different things.      

It's unknown how many children have pediatric feeding disorders and other feeding issues, but there are more than most people realize.  Just a few of the many reasons for a child's inability to eat are GERD, aspiration, allergies, motility issues, etc.  The list is extensive (you can see a partial list here), and sometimes a cause is never actually found.

Available in the Sunshine and Spoons Shop

Not all kids with feeding disorders need a feeding tube.  A lot are able to eat food orally, but have sensory issues or need high calorie supplements to avoid losing weight.

Parents of little ones with feeding issues face a lot of challenges and often feel misunderstood and like they don't have support.  Well-meaning friends and relatives can unknowingly make things worse.    

Here are 15 ways you can support a parent of a child with feeding issues.

How Facebook Helped Me Find My Tribe

As I dropped the last of the bags from Davy's 9 day hospital stay in the middle of the living room, I paused to look around.  So much had changed since I was there last, in more ways than one.  

We had recently moved into our new house, and I hadn't had a chance to unpack or rearrange furniture since my time was consumed with trying to get 2 month old Davy to eat and running him to doctors' appointments.  So, during Davy's most recent hospital stay, during which he had surgery to place a G Tube, my in-laws had spent several long days putting my house together.  I had left a house full of boxes and come back to a home.

My family and friends had all pitched in to take care of the 3 older kids while I was at the hospital with Davy and Hubby was at work.  Before being discharged, one of our doctors quizzed us to make sure we had a support system in place since he knew we weren't in for an easy ride.  He was impressed with how everyone came together to help us.  My family definitely wasn't in this alone.

And yet, we still were.  No one I knew had ever had a feeding tube.  I didn't know anyone else who was going through an experience similar to our situation with a medically complex baby.  People were so caring and empathetic and yet, no matter how hard they tried, there was no way that they could truly know how I felt.  So while we had an amazing support system in place, it wasn't the only support system I needed right then.  I needed a tribe.