Friday, January 30, 2015

A Few of My Favorite (Tubie) Things!

In the 8 months since Little Dude got his G Tube, I've found some resources and products that have made this whole thing easier and wanted to share them with other tubie families as well.

Feeding Tube Awareness
The Feeding Tube Awareness foundation has SO much information available and also has a Facebook page where you can ask questions about tube feeding.  I love the Tubie gear that's available there too!  Little Dude has a Supertubie onesie, and I have an "I love a Tubie" bracelet that I wear all the time.

For the first few months after Little Dude got his G Tube, we battled constant granulation tissue that had to be burned off with silver nitrate sticks at the doctor's office.  When a new product called Granulotion appeared on the market, I ordered the free sample in hopes that it would help.  It didn't take more than a few days for me to be completely sold on it!  It gently got rid of his granulation tissue and, with daily use, has kept it from coming back.  I highly recommend this to every tubie!!  In a Tubie support group I belong to on Facebook, the reviews have been outstanding.  It may seem kind of pricey, but a 1 ounce jar goes a long way.
Tubie Pads
Tubie pads are a cute way to keep Little Dude's stoma healthy.  He has drainage from the stoma that irritates the surrounding skin and causes granulation tissue so we keep it covered with something to soak it up and keep the drainage from sitting on his tummy.  There are many places on Facebook and Etsy that make tubie pads.  We ordered from several different places before we found the pads that worked best for Little Dude.  Our favorite is Gotz GPadz on Facebook.

Tardis tubie pad from Gotz GPadz

My Tubey Books
My 3 older kids love reading these books, and I love that they introduce different ways of feeding children in a non-scary way.  Little Dude is a bit young to understand the books yet, but when he gets older, I think he'll enjoy reading a book about kids like him. 

For more special needs resources, you can visit my Special Needs Parenting page.

Thank you for stopping by my blog! I appreciate each of my readers and would love to connect with you on Facebook and Instagram!


Friday, January 23, 2015

Loving My Body Even When I Hate It

I've always hated my mid-section.  I remember asking my mom if I was fat when I was 6 or 7 because I didn't like how much my stomach stuck out.  Even at my thinnest, I never had a flat stomach.  At 10 months postpartum with my fourth child, I have to be very careful how I dress so my stomach doesn't make me look pregnant.  After being pregnant four times, my stomach is saggy, wrinkled, and covered in ugly stretch marks.

Last week, Princess came in my room to ask me something while I was getting dressed and I saw her staring at my stomach.  After a minute, she asked me this question, "Mommy, why does your tummy look funny and fat?"


Don't you love how kids say exactly what they're thinking?

In that moment, I had a choice.  I could pass my insecurities about my looks on to my impressionable daughter or I could teach her that even when something doesn't look perfect, it can still be beautiful.

I smiled at her and said, "God gave me four babies that grew in my tummy and made it really big.  Do you remember how big my tummy was when Little Dude was still in it?"

Princess nodded.

"My tummy might look a little funny now, but when I see it, I think about how lucky I am that God gave me FOUR babies.  I love my tummy because it's where you and your brothers and sister grew until you were big and strong enough to come out."

Princess smiled as she said, "You're pretty lucky, Mommy!  It's good that your tummy looks like that because now you have me!"

So, do I wish my stomach was flat and not covered in stretch marks and wrinkles? You bet!  But, thanks to Princess's question, I can finally see my stomach as something other than ugly. 

Thursday, January 22, 2015

Where Have I Been?

Today is Princess's 7th birthday, and I'll be writing a birthday post about her soon (or eventually...hopefully before she turns 8). 

So far, I've failed miserably at my 2015 goals.  I haven't so much as started to think about doing any of the things on my list.

Here's why...

No, he hasn't been in the hospital all this time-he was actually only there for one night.  However, it's been a terrible year for him health-wise.  He started getting sick on December 31st and ended up with pneumonia.  Just for fun, he was on amoxicillin for a double ear infection when he came down with pneumonia.  The ER doctor switched him to a stronger antibiotic and in a few days, he seemed to be on the mend.  He had 2-3 good days when I was mentally cheering for myself for getting him through pneumonia without a stay in the hospital...and then he got RSV which is what landed him, you guessed it, in the hospital.  However, the doctor that read the x-ray mis-diagnosed him with worsening pneumonia despite being on his second antibiotic of the year, and put him on an even stronger antibiotic before discharging him from the hospital with retractions while breathing, a fever, and a high heart rate.  We took him to Urgent Care at a different hospital the next morning (January 18th), and they did what the first hospital should've done right away-run a test for RSV.  It came back positive and, while we've managed to stay out of the hospital, he's been at the doctor twice this week already because of worsening breathing and has been throwing up quite a bit.  Thankfully, the G Tube allows us to keep him hydrated by giving him small amounts of formula or Pedialyte more frequently.  The doctor told us that we just need to make it past days 5-7 and then RSV typically starts getting better.  Yesterday was day 7 so hopefully Little Dude will start improving now!  I miss my happy little boy.

Things that happen when your baby has been sick with pneumonia and/or RSV for 23 days....

Your daughter wakes up on her birthday and excitedly asks you where the treats are for her to bring to school today.  You hype up a package of oreos that you quickly dig out of your "sanity" stash before stuffing it into her backpack.

Your house is a disaster and your laundry is "this" close to being classified as a national disaster.

You have to call your mom on the way home from taking the baby to the doctor because you keep falling asleep while driving.

You have significant mom guilt over the fact that your three oldest kids have spent the last three weeks being shuffled from one person to the next while you are at the doctor's office, ER, or hospital with their baby brother.  The mom guilt is worse because it's your oldest child's birthday this month, and you keep remembering that Little Man's birthday last year fell right in the middle of a nine day hospital stay with Little Dude.

The extent of your social media presence is an occasional update for family on Facebook and quick pictures on Instagram (if you want updates on Little Dude, IG is where you want to be!)

It's January 22nd and so far this year, you've only left the house to go places with medical personnel and equipment.  And church.  Once, in between the pneumonia and RSV.

Your almost-potty trained 2 year old will have a regression so bad that you're going to have to start the whole process over again.  Someday.  Definitely not right now.

You keep thinking, "It can only go up from here, right?" and then remember that you have a medically complex child...

Friday, January 16, 2015

Little Dude - 10 Months

Age: 10 months

Weight and height: 16 pounds, 11 ounces and 28 inches long.  He lost a little weight while he was sick this past month.

Wearing size: Size 3 diapers and 6-9 month clothes. 

Likes: He's very sociable and LOVES attention.  He loves being on the floor to play and army crawl around and he's obsessed with paper, which is not good because he eats it and then chokes on it. 

Dislikes: He really hates it when I do his G Tube and skin care every morning-not because it hurts, but because he can't roll over and play when I'm doing it.  He also hates his skin care routine because he strongly dislikes having his hands, arms, and head touched and manipulated.  To get him to lay still and stop fighting me, I play a Youtube video on my tablet for him to watch while I'm taking care of his tube (he's a big fan of Peter Hollens, Lindsey Stirling, and Baby Einstein).  His sensitivity to the other kids had been disappearing, but being sick so much lately has set him back and he doesn't tolerate them being near him very well right now.

Eating habits: He gets five bottles a day with 5.5 ounces of water and 3 scoops of the Alimentum formula.  He drinks about 50% of his formula throughout the day, and the rest is tube fed.  He gets pureed baby food 1-2 times a day, and I just started giving him gluten free baby puffs which he seems to like.  

Sleeping habits: He takes a morning nap from about 9:30 am to 10:30 when I wake him up for his next feeding.  He's such a light sleeper that when I try to tube feed him so he can sleep longer, he wakes up anyways.  He stays up until after his 1:30 feeding and then sleeps until his 4:30 feeding.  He's dropped the third nap of the day and goes to bed around 8 pm at night after his 7:30 feeding.  
Milestones: He's getting better at sitting on his own and is able to do it for about 60 seconds now before tipping over.  He's really good at army crawling and leans to his right side to avoid putting pressure on his G Tube.  We're working on getting him up on his hands and knees, but he's not very interested in that.
Miscellaneous: January is a very busy month for Little Dude with MANY doctors' appointments at Mayo.  We will be at the clinic 1-3 times a week with him and he has multiple appointments on quite a few of those days.   

Thank you for stopping by my blog! I appreciate each of my readers and would love to connect with you on Facebook and Instagram!

Friday, January 2, 2015

My Word of the Year

This is the first year I've picked a word of the year.  I wasn't going to, but after seeing a post on Instagram about someone else's word of the year, one word kept popping into in my head.


This year will be a year for growth for me, for my family, and for my businesses.

I can't wait to see Little Dude to grow in health, in developmental milestones, and physically.

I have hope that Star will grow after barely gaining any weight or height for over a year.

I have plans to grow my businesses-my pattern shop, my boutique, and my blog.

I want to encourage Princess to grow in her love for reading.

I want my whole family to grow in their love for God.

If you have a word of the year for 2015, please share it with me!  I'd love to see what you've come up with.

Tuesday, December 30, 2014

Goals for 2015

I don't set New Year's Resolutions, but I do have some goals I'd like to work on this next year.

Personal goals:
1. Lose weight and get in shape
  • Exercise 4 times a week
  • Watch portion control
  • Cut back on the amount of soda I drink.  I used to never drink soda, but during my pregnancy with Little Dude, I had major cravings for it all the time and still haven't kicked the habit.
2. Read books and watch movies from my must read/see list.  I have a Pinterest board I add books and movies to whenever I hear about them so I won't forget them later.  The problem is that I never remember to check my Pinterest board.

3. I'm not the world's best cook, but I have quite a few easy--to-make recipes I've developed since getting married (and especially since having kids.) that I'd like to put into a cookbook, partly for my own use, but also to sell as an E-book.  I'd like to have it done by 2016.

1. I'd like to be earning $500 a month by the end of the year or earn at least $5000 this year. 

2. Save money.  I tried doing the 52 week money saving challenge last year, but never had the right amount of cash at the right time so I gave it up a couple of months into it.  Instead, anytime I end up with a $5 bill, I put it in my change jar.  I only started doing that a few months ago, but if I do it for all of 2015, I should be able to save up a decent amount of money.  Don't tell Hubby, but I'm saving up for a trip for our 10th anniversary in 2016.  
3. I have a whole list of money saving tips that I plan to start incorporating into our daily life.  I'll publish a post of the list soon.

1. Make at least 3 pieces of clothing for each child.  I barely had time to sew anything in 2014 and I really miss being able to make things for my kids.
2. Do attitude charts with the 2 oldest kids.  An attitude chart is basically an empty chart.  Everytime a child has a good attitude about cleaning up his or her toys, getting ready for bed, etc, he or she will get a sticker on their chart.  When the chart is filled up, they get to pick out a toy at the dollar store. 
3. Do a marriage challenge.  I don't have one picked out yet, but I'm thinking of possibly doing the Love Dare.  Do you have something you could recommend?
4. Do character building with kids.  Each week, we'll focus on another character trait from the list.  My sister also plans to do this with her kids.
5. Have 1 tv-free week a month.  This doesn't apply to Hubby as I know he'd never go for it, but the kids will be doing it.  I tried it a few times this year and it helped to "reset" their attitudes about watching tv.

2. Keep the house reasonably clean by continuing to use the Motivated Moms app.

What are your goals or resolutions for 2015?

Monday, December 29, 2014

Random Monday - December 29, 2014

I can't believe that this is my last Random Monday post for 2014!  2015 is just 2 days away and I'm getting my "Goals for 2015" post ready to publish. 

I finally added a Special Needs Parenting page to my blog which includes Little Dude's story, links to posts about him, links to posts I've written about special needs parenting, and links to other websites that I've really found helpful. 

On Christmas Eve night, I made crockpot beef stew for supper.  It was delicious and I certainly didn't mind eating leftovers for several days after that.  The two oldest kids had slightly different opinions though...Little Man would only eat it if he could cover his eyes and pretend it was something else like chocolate chip cookie ice cream cotton candy.  Princess happily ate it, but halfway through she made this comment: "It tastes like dirt but I'm still eating it!"

I spent 6 hours organizing and going through the kids' toys, games, and craft supplies on Saturday night.  Goodwill will be pleased with our generous donation, I think.  I'm planning to buy a lock for the closet where most of the toys are going to be stored from here on out.  #mommastiredofthemess

Hubby's grandma found this hat in her basement while cleaning it out.  It used to be Hubby's dad's hat when he was a baby.

What's something you've done this past week? 

Friday, December 26, 2014

Christmas 2014

This was our year to drive 6 hours to visit Hubby's extended family for Christmas, but Little Dude doesn't do well in the car and is easily over-stimulated so we decided to stay home this year.  It was nice to relax at home with the kids and Hubby and thankfully, no one was sick so we were all able to enjoy the day.

We opened gifts first thing in the morning.  Star loved unwrapping the gifts, but had no interest in actually opening the boxes until Hubby showed her that there were toys inside.  In the afternoon, the two little ones napped while the two big kids played with their new toys.  Hubby and I played John Deere monopoly which he easily won.  Let's just say that I don't have future plans to go into the real estate market.

For dinner that evening, I made a 13 pound ham (not surprisingly, there were a LOT of leftovers), mashed potatoes and ham gravy, green bean casserole, cranberry sauce, and mince pie.

Princess received a Ramona and Beezus dvd, a Frozen easy reader book, a Tardis ornament, and a personalized ballerina ornament in her stocking.  She also got a wooden sewing machine, an Elsa doll, a stick horse, a set of horse figurines, and a coloring Elsa puzzle.  She loved them all, but was especially excited to open the Elsa doll on Christmas Eve.  Her reaction of, "Mommy!!!  How did you know I wanted this?!?" cracked me up since it's all she's been talking about  for months.

Little Man got a Rio dvd, a Jake and the Neverland Pirates book, a Handy Manny ornament, and a Dalek ornament in his stocking.  He also got a stick dragon, a wooden combine with two heads, an Olaf beanie baby, an Olaf shirt, and a toolset.  His favorites are definitely the stick dragon and the combine.  While driving his combine yesterday, he turned to me and announced, "I'm going to go harvest some weed!"  Um, buddy, I think you mean "wheat."

Star received an Ice Age dvd, a Doc McStuffins book, an owl ornament, and a Fisher Price telephone ornament in her stocking.  She also received a stick horse, a wooden camera, an Anna doll, a Leapfrog Scout dog (which she's enamored with since it says her name), and Doc McStuffins hopscotch squares.  Her favorite gift is the stick horse though and she loves riding it around the house.  Despite the look on her face, she was happy about her gifts, she just didn't want to pose with them.   

I got one picture of her with her gifts and then I got this...

Little Dude wasn't overly impressed with the whole gift opening thing, but has been having fun playing with his new toys.  In his stocking, he received a Happy Feet dvd, a Brown Bear Brown Bear board book, a First Christmas ornament, and a Sven the Reindeer ornament.  He also received an Infantino elephant, a set of stacking cups, a V Tech Catch Me Kitty (which incidentally, doesn't work on shag carpet with which my entire upstairs is covered), a wooden airplane, and a toy phone.  His favorite gift is the stacking cups, but once he learns to sit up, he'll have more fun with the elephant.

We have some Christmas traditions that we enjoyed this year...

We hung up a stocking for Jesus and whenever someone did something kind for someone else, we wrote it on a piece of paper and put it in the stocking as a gift for Jesus.  I emptied it out to read the papers with the kids and was blown away by how many papers Princess had added on her own, all addressed, "To God."  She's really been making an effort to show God's love to others.

We had our Christmas Eve reading party sans Hubby who is, sadly, not a book lover.  We read Christmas books together, drank hot chocolate (which Little Man says he doesn't like so we called it cocoa instead), and ate cookies.

I took pictures of each of the kids with their gifts as a record of what they received.  It's fun to look back and remember when they got something or look back and think, "hey, whatever happened to that toy?" 

The kids got a dvd, a book, and a Christmas ornament in their stockings.  Actually, I had a forgetful moment and ended up getting them each two ornaments this year.  Oh well.  Next year, I plan to start a tradition of getting/ them pajamas to open on Christmas Eve.  Obviously, that's a totally original idea, haha.

I made small photo books for each of the grandparents at with pictures of the kids from this past year.  Hubby looked through one before I wrapped it and wryly remarked that Little Dude must be my favorite child.  No, but he is the one who stays still for the camera the longest.  Next year, I plan to make custom Chatbooks (look for the app on your smart device) for the grandparents with my Instagram pictures which will over double the amount of pictures I can include plus they will cost less. 

How was your Christmas?  What are some fun traditions you had this year? 

Friday, December 19, 2014

Little Dude - 9 Months

Age: 9 months

Weight and height: 16 pounds, 13 ounces and 28 inches long which puts him at the seventh percentile for weight and the 32nd for height.  He didn't gain much weight last month since he spent most of the month sick.
For comparison here are the other kids' sizes at 9 months old:
Princess: 15 pounds, 12 ounces and 27 1/2" long
Little Man: 18 pounds, 4 ounces and 30" long
Star: 15 pounds and 27 3/4" long

Wearing size: Size 3 diapers and 6-9 month clothes. 

Likes: He's very sociable and LOVES attention.  He loves being on the floor to play and he's obsessed with paper, which is not good because he eats it and then chokes on it. 

Dislikes: He really hates it when I do his G Tube and skin care every morning-not because it hurts, but because he can't roll over and play when I'm doing it.  To get him to lay still and stop fighting me, I play a Youtube video on my tablet for him to watch while I'm taking care of his tube (he's a big fan of Peter Hollens and Baby Einstein).  He also is not a fan of his carseat. 

Eating habits: He gets five bottles a day with 5.5 ounces of water and 3 scoops of the Alimentum formula.  He drinks about 50% of his formula and the rest is tube fed.  Because he was sick last month and was having a hard time tolerating his formula, I backed off on the baby food and am just now starting to offer it once or twice a day again.  He tasted an orange and immediately had excema breakouts all over his body so we're assuming that citrus is off the table for now along with apples which he also seems to be sensitive to.        
Sleeping habits: He takes a morning nap from about 9:30 am to 10:30 when I wake him up for his next feeding.  He's such a light sleeper that when I try to tube feed him so he can sleep longer, he wakes up anyways.  He stays up until after his 1:30 feeding and then sleeps until his 4:30 feeding.  He's dropped the third nap of the day and goes to bed around 8 pm at night after his 7:30 feeding.  
Milestones: He still can't sit on his own, but we've been working on that skill.  He learned how to army crawl though and is all over the house now!  He also figured out how to hold two objects (during his OT session while we were discussing how to get him to do that!) and is saying "dada" a lot.  He's only mildly developmentally delayed at this point. 
Miscellaneous: Little Dude had his genetics appointment to discuss the results of his last round of genetic testing.  The results were as we expected...everything came back negative except for the MYBPC3 gene mutation which we'd already been informed of two months ago when the results came back.  The gene mutation causes hypertrophic cardiomyopathy so we'll monitor his heart with echocardiograms every few years.  His last echo at the beginning of December was normal so there's no concern for his heart at this point.  We'll also probably be tested for the gene as it can be a familial thing.  Because Little Dude is doing well overall right now other than his respiratory issues, excema, and feeding tube, the geneticist will see him back in about a year for another evaluation and we'll decide at that point whether to pursue further DNA testing.   

Thank you for stopping by my blog! I appreciate each of my readers and would love to connect with you on Facebook and Instagram!


Saturday, December 13, 2014

8 Survival Tips for When Your Child is Sick

We're in the throes of a stomach flu that's making its way around my house.  A sick 2 year old who doesn't know how to grab the puke bucket in a timely manner makes things very interesting.

To make things a little bit easier, I have some tricks I use to prepare for and survive when my kids get sick.

  • Keep empty ice cream buckets under their beds at all times.  My older kids know they're under there and can grab them if need be.  Also, this way, I'm not scrambling to find a bucket for them in the middle of the night.
  • If there's any chance that someone will throw up during the night, I lay several layers of big bath towels or blankets on their bed.  There's nothing worse than having to re-make a bed in the middle of the night so grabbing a towel off the top of the bed and throwing it in a laundry basket makes things so much easier.  If the first round of vomit caught you off guard, strip the bedding and throw some towels or blankets over the mattress until morning.  It's also a good idea to keep some flannel backed vinyl tableclothes on hand to protect surfaces. 
  • Keep an extra set of clothing in the car for each kid.  Kids are notorious for throwing up while you're out so having something extra for them to wear can be a lifesaver.  I currently need to restock Star's extra set of clothing as the stomach flu hit her hard while we were out running errands on Friday.  It wasn't pretty, and I'm pretty sure a janitor somewhere hates us.
  • Tape a dosage chart for tylenol and other meds inside your medicine cabinet.  I have a box set up just for medication and other stuff we may need when the kids are sick so I can easily find what they need and move the box to wherever I need it.
  • Move the sick child to a location where you can keep an eye on them.  I throw a big blanket over the couch or on the floor and set up a "sick spot" with a bucket, tissues, wet wipes, and some books and small toys.  If the blanket gets dirty, toss it in the laundry and replace it with another one.  This is another time the vinyl tablecloth can come in handy.
  • I keep a few pull-ups in different sizes on hand for times when diarrhea strikes.  My kids have never complained about wearing them when they're sick and it saves a lot of messes.  Obviously, this only works for younger kids.
  • I plan a "catch-up" day for household chores after everyone is better.  I can relax a little bit about the disastrous state of my house when I'm too busy cleaning messes and rocking sick little ones to clean if I know that I will spend a day catching up when it's all over.
  • I keep Gatorade in the cupboard and my kids know that they can only have it when they're sick.  Don't want them getting dehydrated!  Also, even when my kids are past the sippy cup stage, I keep a few on hand so they can sip a drink and stay hydrated while they're resting without worrying about spilling.
One more bonus tip...enjoy the peaceful moments when they're sleeping and look like little angels before they wake to throw up again :)