9 Tips For Moms of Special Needs Children

I still have a lot to learn about having a child with special/medical needs, but I have learned a few things since Little Dude was born.  They're things I wish I'd known right from the start so I thought I'd share them with you.

You can read an updated version of this post here on my new blog, Sunshine and Spoons! I hope to see you there!

Thanks so much for visiting Supermommy!...Or Not.  I'd love for you to like me on facebook" and follow me on Instagram!  


 

Random Monday - July 28, 2014

Princess told Little Man her favorite Bible verse the other day..."Children, obey your parents and your older sister."

Little Man walked by me, sniffing his nose loudly.  "Mommy, I'm snarfing!"

Princess told me that we should give Little Dude away because "he's just too cute and I can't handle how cute he is!!"

Princess and Little Man went outside to play one day, but were back inside within 10 minutes.  I asked Princess why they didn't stay out longer and she replied, "It's just too sweaty out there, Mom."

I've had Little Dude's 4 month update written for about 2 weeks now, but haven't published it yet because my camera cord quit working and I can't add his 4 month picture to the post.  Hopefully I'll get it figured out before it's time to post his 5 month update!

In the meantime, here's a picture I took with my tablet, posted to Facebook, and then stole off of Facebook for my blog.  Princess was making Little Dude smile.

Let me preface this next tidbit by saying that we live in a very small town so for those of you who live in a city and are a bit creeped out by what happened, just remember this is how we roll out here in the boonies  :)
I was outside in the front yard with all four of the kids.  Little Dude was sitting in his bouncy seat in the shade and the other three were "helping" me pull weeds from the landscaping.  A car with two older ladies drove by and then turned around and came back, stopping right in front of our house.  They rolled down the window and proceeded to gush over how absolutely adorable my kids were.  Yup, my kids are so cute that they not only stop traffic, they make it turn around and come back for a second look, lol.  

Star's new favorite word is no.  Or, to be more precise, "Nooo-ooooo."  For a glimpse of her favorite word in action, check out the latest video on my Instagram.
There may or may not also be a heart melting video of Little Dude learning how to laugh right before Star's video.

Sometimes...

Sometimes when I look down at my peacefully sleeping baby boy, I like to pretend that everything is fine.

I pretend that he doesn't have a tube in his stomach to help him get enough to eat so he can grow.

I pretend that he doesn't have a list of 13 different diagnoses and a 6 page care plan with the highlights of his medical history.

I pretend that he doesn't have six different specialists.

I pretend that I don't have a 3 ring binder full of medical info and notes on him.

I pretend that he hasn't been hospitalized twice in his short life and that he hasn't had more doctors' appointments and medical tests than I can count.

I pretend that having a child with a genetic syndrome, special needs, or medical issues is something that "only happens to other people."

I pretend that my kitchen counter and one of my cupboards aren't full of syringes, tubes, and medication.

I pretend that I can let a number I don't recognize go unanswered because there's no chance that it's another call from a doctor, medical supply company, or insurance company.

I pretend that I'm not anxiously waiting for the results of the genetic testing.

I pretend that I'm not worried that they won't find a diagnosis from the genetic testing because that would mean that he's one of those "undiagnosed" kids with unexplained problems.


But, I never have to pretend that my son is perfect just the way he is because there's no doubt in my mind that he is.  I never have to pretend that he's surrounded by so much love that he'll never know a moment without it, because he is.  I never have to pretend that he has a network of family and friends who love and pray for him because he does.

"Cause all of me loves all of you.  

Love your curves and all your edges

All your perfect imperfections

Give your all to me

I'll give my all to you

You're my end and my beginning

Even when I lose, I'm winning"  

~~John Legend~~

Random Monday - July 21, 2014

Princess gets word mixed up quite a bit.  My new favorite mix-up of hers is when she's trying to help calm Little Dude while I get something done.  "Mommy, I'll annoy him for you!"  It took me a few times to realize that she means she'll entertain him.

Someone posted this in a Facebook group for parents of little ones with feeding problems that I'm a member of and I thought it was too good not to share!

Star spent 5 minutes the other day swatting at my arm and yelling, "Shoo fly!"  I have a freckle on my arm...

Lofty goals from Little Man...
Little Man: When I grow up, I'm going to be 13! 

Princess: Mommy, when I'm a teenager, will you be old?

Star outdid herself on the "giving Mommy gray hairs" front last week.  I had to call poison control for her THREE times because she ate ant poison, mouse poison, and one of those little silica gel packets that come in shoeboxes.  Disclaimer: I have NO IDEA where she got the silica gel packet from as I haven't bought new shoes in several years, and I didn't think she could get behind the furniture to the ant poison or mouse poison.  You know how mice can fit through pencil sized holes?  I'm starting to think Star can too.

Little Man has a obstinate streak...for example: one night at supper, I said he had to eat 4 carrots. I emphasized FOUR, not one, two, or three as he tends to try to negotiate a lower number. He responded with, "Fine, then I'm going to eat five!" Okay, buddy, have it your way!

Little Man to Hubby when they met in the hallway: "excuse me, sir" 

A few weeks after we moved into our new house, the dryer broke.  Ever tried to do laundry for a family of six that includes four young children and a farmer without a dryer?  Yeah, fun times. (Side note: my mom went for years without a dryer and sometimes a washer and she cloth diapered!  No idea how she didn't go completely insane, lol)  I thought I'd be smart and get a clothesline because my clothes drying racks only fit 1 load of laundry-except that the clothesline is still sitting in the box.  Thankfully though, we'd been saving up money for expenses like that for the last few years and were able to get an amazing deal on a front loader, high efficiency, high capacity washer and dryer set.  Hubby and his dad hooked them up last night and I'm so psyched to be doing laundry again!

Adelaide's Attic Review and Giveaway

One of my favorite things about having little girls is the hair accessories.  We have tons of hairbows, headbands, barrettes, etc, but there's always room for more.  So when Julie from one of my favorite blogs, Director Jewels, started her own Etsy shop, I was pretty excited to see all the beautiful headbands she creates.  She also makes stuffed owls, pillows, party supplies, and more!  She was sweet enough to send me two headbands, one for each of my girls.

Of course, Star is in the fun toddler stage where she refuses to be photographed as anything other than a blur, but I managed to get one quick picture of the two girls together.
 

Princess was kind enough to model both of the headbands for a few more pictures.

The headbands are really well made and even when I caught Star chewing on hers, it stayed together perfectly (although I am not advocating using them as chew toys, obviously.)

The headbands themselves are made with soft FOE that is so stretchy and comfortable that the girls don't mind wearing their headbands all day. 

Julie was kind enough to let me interview her.

Q: When did you start your business?
A: I've been crafting since I was a little girl, so owning a shop has kind of always been a dream.  I opened Adelaide's Attic at the beginning of 2014.

Q: How did you get started?
A: After creating gifts for my own kids, friends, and family members wiht positive reviews and encouragement, I decided to take the leap and offer my products to others!

Q: Describe some of your products:
A: I dabble in many crafting mediums, so you never know what may pop up in my shop!  So far, my product list includes children's clothing (dresses and tie onesies), plush personalized pillows, and lovey blankets, and a large assortment of hair accessories.

Q: What inspires you?
A: There is inspiration in just about everything in the world, but I draw the most from my beautiful children and their laughter, bright sunshine after a week of rainy days, and breathtakingly beautiful music. 


How would you like a hair accessory for your little one from Adelaide's Attic?  Julie was sweet enough to offer my readers a hair accessory of choice, up to a $15 value.  Enter in the rafflecopter widget below.  You can also use the coupon code BLOG2014SUPERMOMMY for 10% off any purchase through August 31st at Adelaide's Attic.

a Rafflecopter giveaway

So Much To Miss

As much as I love Little Dude, there's no doubt that he's changed my life completely in the four months since he arrived.  I wouldn't trade him for the world, but there are things about my life BLD (Before Little Dude) that I miss.  

I miss blogging.  Writing has always been my outlet and now that I don't have time to do much of it, I really miss it, especially since I could really use an outlet besides chocolate these days.  Right now, I only turn on my computer a few times a month.  I have my tablet so I can stalk browse Facebook while spending hours holding Little Dude or tube feeding, but it's just too hard to blog on my tablet.

I miss sewing.  I finally managed to snag a few yards of Frozen fabric which usually sells out within a few hours of being put up for sale.  Somehow, getting new fabric did not help me miss my sewing machine any less.

I found this super cute Bambi fabric at Joann Fabrics yesterday and bought 2 yards.  Now to stare at it wistfully and wish I could actually do something with it.

I miss my kids.  I spend so much time caring for Little Dude that I barely have time for my other kids.  They've definitely been noticing the lack of attention and acting out because of it.  Because it is so hard to calm Little Dude down when he gets upset and because most people can't tube feed him, if someone does come over to help out with the kids, they'll take charge of the older three so I can focus on Little Dude.  While I greatly appreciate the help, I desperately want to spend some time focusing on my other kids too.   

My little cutie pie wearing overalls for the first time since getting his G Tube.  I usually dress him in onesies and sleepers for easier access to the G Tube.

I miss my husband.  Between working the night shift, caring for the kids, and Little Dude's frequent doctor appointments, Hubby and I don't see much of each other these days. 

I miss sleep.  My oldest two kids slept through the night by 5 weeks old and Star slept through the night at 7 weeks *ducks tomatoes thrown by sleep deprived moms*.  I knew I was lucky and I was always afraid that my luck wouldn't hold up with each child I gave birth to.  Turns out, my luck ran out with Little Dude.  He's up 1-3 times a night usually for extended periods and up early in the morning.  I very rarely get naps during the day because the kids' naps never seem to coordinate and Little Dude doesn't nap well.  I now consider 6 hours of interrupted sleep a good night's sleep. 

I miss being oblivious to the stresses of having a special needs child.  I've always had the utmost respect for moms of children with special needs or chronic health issues, but until you're there, you don't know just how hard it really is.  I feel like my heart gets ripped out of my chest at least a few times a week when we get more bad news from a doctor or Little Dude has a rough day.  And since we still don't have an official diagnosis for all of his problems and won't for a long time, if ever (sometimes the doctors never do find a diagnosis for kids like this), there's the uncertainty and not knowing what we're up against.    




 

Long Overdue Update on Little Dude

So we've been busy....

We're up at Mayo 1-2 times a week right now for visits with different specialists, tests, etc.  When I'm home, I'm either holding Little Dude or running around like a madwoman trying to clean as much as I can before he wakes up again :) 

On July 3rd, Little Dude had a full day of appointments at the Mayo Clinic.  He had a fluoroscopy of his lungs, a blood draw, an appointment with the geneticist, and an appointment with pulmonology.  My sister-in-law (the doctor) came with and I was really glad she was there because she was able to help me figure out some of the information we came away with.  We were at the clinic for over 7 hours that day. 

The pulmonologist ordered the blood draw because Little Dude's lactic acid levels and eosinophils were really high while Little Dude was hospitalized back in May.  He was surprised that no one had bothered to re-check the levels.  He also diagnosed Little Dude with tracheomalacia which should have been picked up on earlier since Little Dude has had 2 fluoroscopies and 2 chest x-rays since 3 weeks of age.  The tracheomalacia causes breathing problems and noisy, rattley breathing.  When Little Dude cries, he often turns blue and has a harder time breathing thanks to the tracheomalacia so we try not to let him cry too much.

A friend of mine gave me this outfit for Little Dude.  She figured he should have an outfit with his blog name on it :)

Back when Little Dude first saw the geneticists while he was hospitalized in May, they said that they would run the chromosome test first and then if everything came back negative with that, move on to the longer, more difficult microarray blood test.  They said it would take about 2 months for the results of the second test and when they scheduled an appointment for him to be seen in July, I assumed that it was to see the results of it since the chromosome test was negative (as we suspected it would be).  So, I was pretty surprised when Little Dude was examined again at his appointment and then they asked if I wanted to run the second test.  Um, didn't we discuss this TWO months ago?!?!?  So now we have to wait another 10-12 weeks to find out if/what genetic syndrome he has.  They're specifically looking at Noonan Syndrome, Costello Syndrome, Williams Syndrome (one of my awesome readers actually emailed me about this one because she thought Little Dude sounded a lot like her son who has it), and Cardiofaciocutaneous Syndrome just to name a few.   
 

Little Dude tried out the jumper for the first time this week!

Today, Little Dude had a bronchoscopy, an esophageal study, another blood draw, and a urine sample.  The blood draw and urine sample were for the genetics testing because the paperwork wasn't done on that in time on July 3rd when we were at the clinic.  The other two tests showed that Little Dude has inflamed airways, but that he won't need surgery for the tracheomalacia as the pulmonologist suspected.  The pulmonologist instructed me to "spoil" Little Dude though so his breathing doesn't worsen.  Both the pulmonology and GI departments took biopsies which we will find out the results of next week.  We're specifically looking to see if Little Dude is aspirating reflux.  All the tests were done under anesthesia.  Little Dude did great although he had to be poked countless times to get an iv and for the blood draw.  Thank goodness he was asleep for that.  He's had a fever and wanted to sleep since then, but I think by tomorrow he'll be getting back to normal.

BTW, I finally caved and opened an Instagram account.  :)   You can find me here: http://instagram.com/supermommyornot