Monday, October 20, 2014

Random Monday - Oct 20, 2014

I just love watching toddlers learn new things everyday.  It's seriously the cutest thing ever.  Well, most of the time anyway.  In the past week, Star has learned several new things...
  • She learned how to climb out of her bed at night.  She comes out in the living room with a big grin on her face and announces, "No, nigh-nigh!"
  • She learned how to open the storm door.  When the weather's nice, I leave the front door open and pull the storm door shut to let some fresh air in.  The storm door is incredibly hard to open, even for an adult.  But my 2 year old figured it out!
  • She learned how to buckle the chest clip on her carseat and Little Dude's carseat.  So annoying when we're in a hurry to go somewhere, and I have to take a child back out of their carseat to unbuckle the chest clip before I can buckle them in properly. 
This morning I told Star that she's cute.  She looked at me with a frown on her face and said, "No no no no.  (Insert Little Dude's name here) doot."  So I guess he's cute and she's not.  Which, by the way, makes her even cuter.

Little Man told me this morning that he's never going to throw a fit or tantrum again.  He lied.

By some miracle, my two sisters and I were able to visit a coffee shop on Saturday sans kids.  That's right...NO KIDS.  My younger sister isn't married yet, but between the two of us older ones, we have eight kids, ages six and younger.  It was a heavenly few hours.  And then we had to go home.  But at least we got a little break! 

My younger sister is a bit of a coffeeholic. 
 


Friday, October 17, 2014

A Day in My Life

I've had several requests for a "day in the life" post.  Never one to disappoint my many fans (you know, all two of them), I finally buckled down to doing one.  I decided to do it this past Monday which meant writing down what I was doing so I could then type it up in blog form.  Monday started off as a good day and then by mid-morning, it went haywire.  I thought about scratching it and trying again on a more "typical" day, but realized that Monday was a typical day for me.  At least several times a week, my day is thrown out of whack because of doctors' appointments, last minute or scheduled, or other medically related issues.

6:45 am - My alarm goes off.  I think about throwing my phone out of the window, but decide against it.  I hit the dismiss button and drag myself out of bed to wake the two oldest kiddos up for school.  As usual, neither is happy with this.  Princess refuses to pick out her own clothes, but complains about what I pick out for her, Little Man throws several tantrums in the first 10 minutes of waking up because he wants to go back to bed.  He asks if he can pretty please take a nap when he gets home from school because he is sooooooo tired.  I oblige, but know that he'll have changed his mind by then.  Neither one want to eat anything we have in the house for breakfast.  Star wakes up and can't seem to understand why everyone in the house isn't catering to her every whim.  Little Dude also wakes up and is ready for his first feeding.  Hubby and I tag team this whole production.

7:30 am - I prep Little Dude's feeding and meds and make myself a chai latte.

7:40 am - Princess gets on the bus.  I am working with Little Dude to drink his bottle.

8:00 am - Hubby takes Little Man to preschool and then leaves for the farm.

8:30 am - Little Dude is finally done with his feeding.  He ate 4 ounces so I tube fed him the remaining 1.5 ounces along with his meds.  I get some warm soapy water ready for his tube care.  He got another infection around his G Tube on Friday so it's a little more time consuming than usual.  I also change his diaper, do his skin care routine for his eczema, and get him dressed for the day.  Star gets into about a million things while I do all this.


9:00 am - Little Dude eats 2 tablespoons of rice cereal.

9:30 am - I have just laid Little Dude down for a nap when the doorbell rings.  I forgot about the public health nurse coming for his weekly weight check.  Naturally, the house is a disaster, but she is pretty used to the craziness at my house by now and understands.  :)  Little Dude is up to 15 pounds, 13 ounces which is a weight gain we're both happy with.  I discuss his current feeding regimen with her and we agree to continue with it.  Just for fun, Star climbs on the scale too.  She weighs 21 pounds, 10 ounces, less than 6 pounds more than her baby brother.

9:45 am - After the public health nurse leaves, I lay Little Dude back down for a nap.  I have to go in and give him his pacifier several times and he refluxed and choked once, but he eventually falls asleep with a minimum of crying.  I check Facebook and happen to see that the wipes we bought from Sam's Club in July have been recalled for a bacterial contamination.  Immediately, my mind goes to the recurring G Tube infections Little Dude has had since we started using the wipes.  I make a phone call to the doctor to see if they think there might be a connection.  She says she will call back after doing some research.

10:00 am - I change Star's diaper and go in her room to pick out her outfit for the day, but lo and behold, all of her clothes are in the dirty laundry.  I pull out the box of 2T clothes and pick something out for her to wear.  It's way too big.  Oh well.

10:20 am - I log onto Little Dude's online medical portal and check dates on his G Tube infections and then call Sam's Club to determine when exactly I bought the box of wipes.  The dates line up.  Then the doctor calls back and informs me that Little Dude has Strep.  On his G Tube.  Great.  We talk about how I need to disinfect ALL THE THINGS and keep the kids from sharing germs.  I have a mild panic attack just thinking about it.  I call Star's doctor to make an appointment for her because I suspect she has Strep too.  While I am on the phone, Star has dumped out and eaten half a bag of chocolate chips.   

11:00 am - Time to pick Little Man up from preschool so I wake Little Dude up and am putting him in his carseat when I realize that he has soaked through his diaper and all over his outfit.  I change his whole outfit quickly and rush the kids up to the school so we're not late for pickup.  Little Dude is already 30 minutes late for his feeding.

11:20 am - Home with a very talkative Little Man.  I try bottle feeding Little Dude, but he will have nothing to do with it so after working with him for a while, I tube feed him while he cries nonstop.  Little Man and Star are making up for lost time by getting into EVERYTHING together.  I set the alarms on my phone for the rest of the day's feedings so I don't run late on another feeding.  Little Dude is getting very worked up and I'm feeling just slightly extremely overwhelmed.  I vent him through the G Tube mid way through the feeding because his stomach is hard and distended.  I get a lot of air out, but his mood does not improve.  Mine doesn't either.


12:30 pm - Finally done feeding Little Dude so I throw a frozen pizza in the oven for the kids and Hubby.  I call my sister-in-law (kinda handy to have a doctor in the family) to talk about the Strep and wipes fiasco.  I end up venting my frustrations over Little Dude's health to her.  I give her extra points for not hanging up on me.  After I hang up, Hubby comes home for lunch.  I dish food out for everyone (except me) and sit down to feed Little Dude some pureed pears.  I finish my now-cold chai latte.

1:00 pm - Little Dude is in his crib napping and the big kids are eating goofing off at the table.  I clean the kitchen which hasn't been touched since yesterday afternoon.  So. Many. Dirty. Dishes.  I also wash Little Dude's bottles, med syringes, and tube feeding supplies.   When the kitchen is cleaned up, I lay Star down for a nap and do some laundry.  I call the school to arrange for Princess to go home on her cousin's bus today since we probably won't be home when school gets out.  Then I call my sister to let her know that there will be an extra kid at her house today.  Hubby leaves to go back to the farm and I feel a sense of despair as I watch him leave.

1:45 pm - Little Dude is still sleeping so I tube feed him his entire bottle.

2:30 pm - I get Little Dude and Star up from their naps so Star can go to the doctor.  Neither is happy with me.  We make it to the doctor's office in time.

3:40 pm - Finally done at the doctor.  Star does indeed have Strep.  Oh joy.  Like the idiot I am, I decide to run errands with the three younger kids before picking Princess up from my sister's house.  We start at the grocery store where I have exactly three things on my shopping list.


4:25 pm - We leave the grocery store with two things.  I fondly nickname our grocery store visit "The Worst Shopping Trip Ever" and head over to my sister's to drop Star and Little Man off so I can finish running errands with Little Dude (you know, the kid who doesn't whine, argue, throw screaming tantrums in the middle of the aisle, or run away from me).  I stop at the pharmacy which is practically our second home at this point and the library.  I don't need anything at the library, but I'm stalling picking the kids up.

4:45 pm - I pick the kids up from my sister's and we head home.  I get another feeding ready for Little Dude.

5:30 pm - Little Dude happily drank the whole bottle so the feeding went faster than usual.  When he's done, I lay him down for a nap.  I start supper for the kids while they jump off the couch onto the coffee table despite my warning to stop.  A few minutes later, two of them are crying because they got hurt (told you so!)  I pack Hubby's lunchpail for work and fold a load of towels.

7:00 pm - The kids are done eating supper and Hubby is off at work.  Little Dude wakes up fussy and crying just as I start getting the other kids ready for bed.  I rush to put the kids to bed so I can calm Little Dude down before he throws up or chokes.  The kids fight the bedtime routine and naturally, Little Dude starts choking and turning blue midway through Little Man's second tantrum.

7:45 pm - The big kids are in bed, but not sleeping.  I feed Little Dude half a jar of pureed pears and play with him for a while, incorporating some of his physical therapy into the playtime.

8:15 pm - I get Little Dude's bottle and meds ready for his last feeding of the day.  He refuses to drink most of it so I end up tubing it.  I change him into an overnight diaper and his pjs and change the gauze around his G Tube.


9:15 pm - Little Dude is done eating and ready for bed.  I lay him down and check on the other kiddos who are (finally!) all sleeping.  Woohoo!  Freedom at last!  I turn on Netflix and catch up on emails, texts, and Facebook for an hour and half before I go to bed.


Do you have a "day in the life" blog post you've written?  Leave a link in the comments so I can check it out!



Friday, October 10, 2014

My Last One

Last night, it hit me.

I was getting ready for bed when the cradle taking up all the space between my side of the bed and the wall caught my eye.  No longer in use by Little Dude, it was slowly filling with random clothes and blankets.

"I should take that apart and bring it back to the in-laws." I mused. (It belongs to them.  They lend it out for each new grandbaby in the family.) "It'd be nice to have that space back after so many years of having to climb into bed from the foot of the bed."


And then it hit me.

That cradle will never rock another tiny newborn at my bedside.  It will be the first of many baby items and paraphanalia that will slowly make their way out of my house.  For good

No more babies.


For over seven years now, my life has been about babies.  I've either been pregnant or had a baby to take care of.  For over seven years, my house has been arranged with modifications for bulky baby gear, sippy cups, and the storage of jumbo boxes of diapers. 


I love babies.  I love how their fuzzy (or bald in Princess's case) heads smell so good and are so soft after a bath, and I love all the baby gear, the simple baby toys, the tiny baby clothes, the soft baby blankets that always seem to multiply.  I love the soft squishiness of baby snuggles and the absolute innocence in their eyes when they stare up at you. 


Each one of Little Dude's "firsts" will be my last "first."  I probably won't even realize when the "lasts" will be until they're long gone.  When Star and Little Dude outgrow their clothes, they won't be packed up in a box, ready to be unpacked for the next one.  The bouncy seat, the infant swing, the jumperoo...they will be passed on to someone else who is just entering or re-entering this stage of life and this time, I won't ask that the things be returned when they're finished with them. 

I'm ready to move on to the next stage of life where my life doesn't revolve around diaper bags, feedings, and naps, but I'm still going to miss this.  I'm really really going to miss it.  



Monday, October 6, 2014

The Best Surprise Ever and Star's 2 Year Update

2 years ago, I got the best surprise ever.  I'd had two ultrasounds during my pregnancy and both techs said we were having a boy.  I had a nagging doubt in the back of my mind, but the statistics of an ultrasound (let alone 2 ultrasounds) predicting a boy and having it be a girl instead are really slim.  My reaction when I gave birth was one of pure shock.

Photo by Emily Anderson Photography

Just for fun, here's Star's birth story.       

On to the stats...

Age: 2 years old!


Weight and height:  She weighs 21.6 pounds and is 31.75" tall.  The nurse forgot to add her meaurements to the growth chart so I'm not exactly sure where she is, but I do know that she's in the 1st percentile for weight.  We go back in November for another growth check.

Wearing: Size 3 diapers and 18 month clothes.  Her feet had a growth spurt and she skipped size 5 and went straight into size 6 shoes.

Likes: She absolutely LOVES being outside and playing with the big kids.  She is very attached to her "Baby" (a doll we got at Goodwill a while back) and her Owl blankets.  

Dislikes: Not being included with the big kids, having to share toys.

Eating habits
: She eats 3 meals a day and 1-2 snacks.  She still eats veggies and fruits, but isn't as much of a fan of them as she was 6 month ago.  She loves "too-ties" (aka, cookies).  She has typical toddler eating habits-eating a lot one day and hardly anything the next. 

Sleeping habits
: The night before her birthday, we moved her out of the crib in the boys' room and into the bottom bunk of the bunk bed in the girls' room.  We have a railing on the side and it's high enough off the ground (we have a boxspring and mattress on the bed) that she can't climb off.  She figured out how to climb up to the top bunk though which drives Princess insane.  Star goes to bed at the same time as the older kids (around 8 pm) and is up by 7:30 am.  She takes a 1 1/2 hour to 2 hour nap in the afternoon.    

Milestones/Accomplishments:
She's talking more and more each day and in sentences.  Some of my favorite things she says are, "Eah" for horse, "Huh and Mah" for hug and kiss, "Ray" for her blankets, and "Oh no!" said with much chagrin when something goes wrong.  She loves to sing and we're pretty sure she's going to be a little performer just like Little Man.


Miscellaneous:
To give you an insight into her personality, here are her three nicknames at the moment:
Turkey, because she's into EVERYTHING all the time.  Nothing is safe from her.
Vulture, because if you turn your back on your food for a second, she steals it.
Kamikaze, because the kid has no fear and is constantly jumping off or climbing things, ingesting some non-food item (Poison Control probably thinks I don't feed her) or running into traffic.  She gives me gray hairs daily!




Tuesday, September 30, 2014

Overrated by Eugene Cho: A Book Review

Disclosure (in accordance with the FTC's 15 CFR, Part 255: "Guides Concerning the Use of Endorsements and Testimonials in Advertising"): May thanks to Propeller Consulting, LLC for providing this prize for the giveaway.  Choice of winners and opinions are 100% my own and NOT influenced by monetary compensation.  I did receive a sample of the product in exchange for this review and post.  
Only one entrant per mailing address, per giveaway.  If you have won the same prize on another blog, you are not eligible to win it again.  Winner is subject to eligibility verification.



About the book:
We all want to change the world, but as pastor Eugene Cho found out, it takes more than just desire. It takes action. In this personal confession he encourages readers to discover a practical discipleship that begins with the recognition that changing the world starts with changing ourselves.
Many people today talk about justice, but are they living justly? They want to change the world, but are they being changed themselves? Eugene Cho shares his story, a messy, painful story of being more in love with the ideas behind the actions than counting the cost and being a world-changer in action. Because everyone loves justice and compassion, but few have taken it upon themselves to truly live it out in their own lives. Cho is still on that journey to discover what it means, and invites readers to join him.

About the author:
Eugene is the founder and visionary of One Day’s Wages, a grassroots movement of people, stories, and actions to alleviate extreme global poverty. He is the founder and senior pastor of Quest Church, an urban, multicultural, and multigenerational church in Seattle, Washington. Eugene and his wife, Minhee, have three children.  You can also find Eugene on his blog and website, eugenecho.com

From the author:
This book is my confession. It’s painful and honest, but it’s mine. And it’s this: I am more in love with the idea of changing the world than actually changing the world. This isn’t a message of guilt or shame. But it is a call, to both you and me, to be less infatuated with telling a good story and instead live the good story—a story of faith, hope, courage, and justice. -Eugene Cho


“Are we more in love with the idea of changing the world than actually changing the world?”  - Eugene Cho

After reading the overview of this book, I was intrigued.  So many Christians today are comfortable sitting in their cozy houses, sharing links on Facebook or tweeting about the injustices of the world, but not actually doing something about them.  Eugene Cho challenges us to get up and do something to right those injustices and to get out of our comfort zones.  He reminds us that instead of just getting upset about things, we need to ask ourselves, "what can I do about it?"  I'll be honest...it wasn't a "comfortable" book to read, but I felt that it was a necessary one and one that all Christians should read.

Cho started the book by sharing how his family publicly pledged a years' wages to the cause of justice.  After three years of scrimping, saving, and living without, they were still $10,000 short.  So, on a whim, he decided to put an ad on Craiglist to sublet his family's home to earn that last $10,000.  It worked, but it meant that his family had to leave their home for 10 weeks.  I was taken aback by the faith and sacrifice they showed.  Right then, I knew that I was in for a wild ride with the book. 

Cho's use of humor throughout the book was perfect and he was able to use his own stories and anecdotes to make very clear points.

Want to win your own copy of"Overrated?"  Enter on the Rafflecopter Widget below.   

Open to residents of US and Canada only. If you have won the same prize on another blog, you are not eligible to win it again. Winner's entries will be verified and winner will be notified by email. 

a Rafflecopter giveaway

  
 7e0865063f26031b7c4eb5a48ce56cbd7038ace02bebb23c99 

Saturday, September 20, 2014

Hospital Stay #4...Can We Be Done Yet?

This past week was...not great.  Princess came down with a nasty respiratory virus on Saturday (after she'd been to her cousin's birthday party and infected four of my nieces and nephews, of course).  I isolated Little Dude as much as possible from the rest of the family and washed my hands constantly, but the inevitable happened.  On Monday night, I put him to bed around 7:30 pm.  He was breathing normally (for him, at least), not coughing, not sick at all.  At 8:30, I checked on him and noticed that he was wheezing considerably.  At 11:00, I got his last feeding ready and started to hook up his tube so I could feed him, but realized that he was breathing very fast and hard and wheezing heavily.  He was having mild retractions and was really struggling to breathe.  Naturally, it was Hubby's night to work so I was home alone with four kids.  I called my mom and she walked across town to my house in the middle of the night to stay with the three older kids while I took Little Dude to the Emergency Room.  Once there, they did a chest x-ray and monitored his o2 levels and heart rate.  Neither one was very good, and they decided to admit him for observation in case he needed oxygen.  We didn't get into a room upstairs until 6:30 the next morning.  Little Dude had only slept for a few hours all night and I hadn't slept at all so we both fell asleep when we got up there.  Except that Little Dude wasn't feeling well so he woke up 45 minutes later and that was pretty much it for my sleep the rest of the day.

Little Dude would only sleep while I was holding him.

That day, he seemed to worsen, becoming lethargic and tired with a decline in his breathing so his doctor decided to keep him overnight.  It was a good thing we stayed because he did end up needing oxygen that night.  FYI, we found out the hard way that he absolutely HATES the nasal cannula!  He screamed, cried, and refused to settle down for 3 hours while pulling it out every few minutes, even after the nurse had taped it on.  It was obvious that that wasn't going to work so she switched him to blow-by oxygen which meant aiming an oxygen hose at his face at all times.  This helped him sleep and keep his oxygen levels up during the night.

The Child Life department brought him a swing and an exersaucer to play with.  He loved them both, but could only spend short amounts of time in the exersaucer because he got tired out too quickly.

We'd been hoping to go home the next day, but since he'd needed oxygen during the night, he had to stay another night to be sure he could sleep without it.  The doctor ordered saline nebs for him which helped loosen up the junk in his lungs.  Thankfully, that afternoon, his condition improved and he was able to sleep all night without oxygen.  His oral feeds went way down, but that was expected since he wasn't feeling well.  However, thanks to the G Tube, he was able to get the full amount of feedings in anyway.  He did throw up several times (thank goodness he likes baths!), but not enough to worry about dehydration.

Little Dude was discharged from the hospital last Thursday morning and we were both happy to be going home.  When I walked in the door at my sister's house to pick up the kids, Star was elated.  Not to see me...she was excited to see her baby brother.  That afternoon, she refused to nap because she couldn't see him while laying down and kept asking to go say hi to him.  It's so sweet to see the bond she has with him, even though he's turned her life upside down.  I can see those two being best buddies and partners-in-crime when Little Dude gets older.

Oh, and sweet little Princess recovered quickly after resting all day Sunday.  I was so happy that she felt better so quickly.  She has a residual cough at the moment, but I anticipate that clearing up pretty soon.

Friday, September 12, 2014

Little Dude-6 Months

Age: 6 months 


Weight and height: 14 pounds, 12 ounces and 25 1/4 inches long which puts him in the 6th percentile for weight and the 4th percentile for height.
Here are the other kids' weights at 6 months of age for comparison:
Princess: 13 pounds, 9 ounces
Little Man: 17 pounds, 4 ounces
Star: 14 pounds 4 ounces

Wearing size: Size 2 diapers and size 3-6 month clothes.  I've been putting him in some 6-9 month clothes just because we don't have a lot of 3-6 sized clothes that are compatible with tube feeding, but they're still pretty big on him. 


Likes: He's very sociable and LOVES attention.  He loves blankets and snuggling.  His favorite toys are ones that play music.  He also loves playing with his pacifiers and paper (which for obvious reasons, isn't a baby-approved toy).

Dislikes: Not being entertained constantly.  He fights sleep like it's the worst thing in the world, but occasionally will fall asleep in his swing or without crying while being held.  He's also not a fan of physical therapy.

I can't get enough of this little face!

Eating habits:  He's still getting six 5 ounce bottles in a 24 hour period.  He eats about 50% by mouth overall and I tube feed him the rest.  His feedings vary-sometimes he won't touch it the bottle and other times, he'll drink the whole thing.  We're about to add rice cereal to his diet.  His GI doctor recommended not giving him gluten or oats for the time being.  We'll be introducing fruits and vegetables within the next month, but will be taking it slow to make sure he tolerates the new foods. 

Sleeping habits: He's taking longer, better naps now.  He still has a couple of days a week where he can't seem to fall asleep or stay asleep, but at least those days are fewer.   He goes to sleep for the night between 8 and 9 and usually sleeps until 7 am. 

My little Supertubie!

Milestones: He rolled over from his back to his stomach for the first time on August 31st and has done it several times since then!  Yesterday, during his G Tube change at the clinic, he started chewing on my finger and I realized that both of his bottom teeth have popped through already.  I'd just checked for teeth on Monday and didn't feel anything so was surprised to feel two.    
    

Miscellaneous: Around 5 1/2 months, I noticed that he wasn't able to hold his head up as well as before and that he often tilted it to the left as if he couldn't keep it straight.  You can see this in the pictures in this post.  This was concerning since just a few weeks before, he'd been doing so well with his neck control.  It was decided to increase his therapy to biweekly home visits instead of monthly and I have a list of exercises to do with him at home.  His physical therapist diagnosed him with mild torticollis.  He isn't even close to sitting up, but we're working with him to strengthen his muscles.  His fine motor skills and social skills are awesome though!


The pictures throughout this post are from Little Dude's 6 month photo shoot at Portrait Innovations yesterday.  That morning, he had a G Tube change, silver nitrate treatment on some granulation tissue and in the afternoon, he had his 6 month checkup and 3 shots.  He only napped for about 45 minutes all day, so when it came time for his pictures after both of his medical appointments, I was pretty sure he would be crying the whole time and wouldn't cooperate.  I was completely amazed that he smiled the WHOLE time we were there and the sweetest baby ever.  He charmed the socks off the photographer.  :)

 

Friday, September 5, 2014

The World of Eric Carle at Gymboree

*This post contains affiliate links.  

I have always loved Eric Carle books.  The simple, but sweet stories, the amazing artwork...they're definitely at the top of my list of children's books.  My kids love the books too, especially "Brown Bear, Brown Bear" which Princess and Little Man have memorized.  Little Man even had a Brown Bear, Brown Bear themed birthday party for his third birthday.



I was so excited to see that Gymboree released their Eric Carle collection on September 2nd.  The clothes are absolutely ADORABLE!  Gymboree is also hosting an in-store event on September 5th from 10am to 12 pm.  There will be fun caterpillar crafts and storytime. 

Since we couldn't make it the event, I was happy to see that Gymboree also has printable Eric Carle coloring pages and activity sheets on their website.

Here are a few of my favorite outfits from the Gymboree Eric Carle collection: 





What's your children's (or your!) favorite Eric Carle book?  Leave a comment and tell me which one and why.

So what are you waiting for?  Head over to Gymboree to check it out for yourself!


Monday, September 1, 2014

Random Monday - September 1, 2014

First of all, Happy Labor Day!!  We didn't have any plans today which was good since Princess woke up throwing up this morning (apparently, she didn't get the memo about not getting sick the day before the first day of school), and Little Dude hasn't been doing well lately.  His cough and wheezing have been getting worse over the last few days, and he's miserable and unable to relax for more than a few minutes at a time.  He cries if he can't see me and it breaks my heart because I can tell that something's not right with him right now.  I'm watching him closely and hoping he doesn't have to go in to the doctor before his three appointments next week.

I froze sweet corn from my in-law's farm on Saturday.  The two littlest munchkins "helped" me. 
 


My mom let me and my siblings get a library card after we'd read 10 books on our own.  I realized last week that I'd kind of dropped the ball on that one since Princess has been reading for a while now.  So while we were at the library for storyhour on Wednesday, she got her very own library card.  She insisted on carrying it home before giving to me to keep in my wallet for safekeeping.


I can't believe school starts tomorrow already!!  I'm hoping Princess feels better in the morning because it's no fun to have to miss the first day of school.  Little Man's preschool class doesn't begin until next week so at least we have a week to adjust to having Princess at school before throwing another one in the mix. 

Princess went with my mother-in-law on a trip this weekend to visit Hubby's grandma and sister.  She had a blast, especially since they got to go shopping.  On the way home from picking her up on Sunday, she sighed happily in the backseat and said, "It's good to get away from your family once in a while."  Word.

I asked Princess if she missed me while she was gone.  She thought for a few seconds before answering, "No, I don't think I missed you."  *sob*  Well, at least the other kids still love me, lol. 

I belong to a closed group on Facebook for parents of children with feeding disorders, GERD, feeding tubes, etc.  The group is a place for parents to ask questions, vent, and support each other as we care for our special needs children.  So, imagine the horror when it was discovered that a question and picture asked by one of the moms had been anonymously screen shotted and sent to a site where it had gone viral making fun of the "stupid" mother.  There are several things wrong with this.  First of all, the group is closed for a reason-because most people can't understand what it's truly like to have a child with a feeding disorder and parents need a safe place to ask questions from others who are walking the same path.  Secondly, it may seem like a "dumb" question to some, but honestly, when you're dealing with special needs, medically complex children, every little thing could possibly mean something big so parents tend to be extremely vigilant with noticing every change in their children.  And yes, there are rare skin conditions that can cause changes like that.  It's better to ask a seemingly silly or obvious question and be reassured that everything is okay than to wonder and worry.  This to me, looks more like a concerned, observant mother than a stupid one.      




Saturday, August 30, 2014

Pros and Cons of G Tubes

I get mixed reactions about Little Dude's G Tube.  Some people are happy he has it because it ensures that he's getting the nutrition he needs or just think it's really cool.  Others are horrified about it or sad that he has to have it at all.  Personally, I tend to waver between the two reactions so I put together a list of pros and cons.


Pros:
  • Little Dude's not starving anymore!  Huge plus, obviously.
  • I can feed him while he's sleeping.
  • I can give meds through the tube and not have to worry about him spitting them back out.
  • Cute tubie pads :)  I love accessorizing my kids with cute handmade things so when I found out that the tubie pads Little Dude needs to keep drainage from irritating his skin can be made in fun designs, I had some fun picking out cute ones for him.  I got his from Gotz GPadz on Facebook.
Little Dude modeling his Doctor Who tubie pad.
  • A G Tube is much less stressful than an NG tube, in my opinion.  An NG tube (a tube that goes down the nose into the stomach) has to be taped to the face, can easily be pulled out, and is traumatic to replace.  Little Dude pulled his three times in the five days he had it while at the hospital and I knew there was no way we were leaving the hospital with it, especially with a curious toddler at home.
Little Dude with an NG tube at the hospital


Cons:
  • Well, there's this tube going through a hole in my baby's stomach...not crazy about that.
  • I worry about the tube coming out.  I don't even like to change my 6 year old's earrings, how am I going to put a G Tube back in?  If it comes out at home, taking him to the doctor to do it isn't an option because we have to drive 45 minutes to the closest doctor who can do that, and the stoma closes rapidly.  Thankfully, the chances of it popping out are actually pretty slim. 
  • I spend a lot of time cleaning the extension tubes and syringes for feeding Little Dude.  You haven't lived until you've pushed soapy water through an extension tube only to have the other end fly up and shoot water all over like a runaway hose.  
  • Granulation tissue (tissue that grows around the stoma to try to "heal" it) sucks.  I'm trying out a new product called GranuLotion to get rid of it right now, but usually Little Dude's granulation tissue has to be cauterized with silver nitrate sticks. 
 
For more information on feeding tubes, visit www.feedingtubeawareness.com