Little Dude's 2nd Annual Birthday Blessings Bash

Hey, I'm still here!  My blog has been sadly neglected, but I've been working on a blogging schedule and will be starting up again soon.  For now though, I'm back with Little Dude's 2nd Annual Birthday Blessings Bash!

Little Dude will be TWO next week so it's time to kick this off!  We've been blessed with so much help and so many prayers since Little Dude was born, and so we're giving back by donating 20% of the sales made during the month of March from Annalie's Baby Boutique to a different organization each year.

Last year, we were able to donate $25 to Gracie's Gowns, a non-profit organization that provides personalized hospital gowns to chronically ill and special needs children at no cost to the family. Gracie's Gowns is very special to me because not only was it founded and run by a very sweet friend of mine, but because Little Dude received a gown from her as well.

This year, I've chosen Go Shout Love.  I've followed Go Shout Love on Instagram for about 2 years now and love what they do to support families of children who have rare diseases.  They feature a different family each month to raise awareness for their disease and money to help with medical and related expenses.

Let's make this a great month for Go Shout Love!


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

Little Dude's Latest Accomplishment

If you follow me on Instagram, you probably already know this, but for those of you who don't, Little Dude has some big news!!

He is officially a supertubie graduate!!!

He kept getting infections on his g tube, and yesterday I brought him in for his second infection in a month.  His doctor and I discussed it and decided that the cons of keeping it in outweighed the pros at this point.  He hasn't used it since March 28th except for meds (which he can also take orally).  The original plan was to leave it in through cold and flu season just in case he regressed, but his doctor and I are both confident that he will be just fine without it.  So without further ado, the doctor pulled it out, we stuck some gauze on the site in case of leakage, and just like that, he was tube free!

So proud of himself!

His stoma has already closed up most of the way and there hasn't been any leaking so far.  I was a little nervous about feeding him after he had it removed because, hello! hole in the stomach!  But he's done just fine and there haven't been any messes yet :)

Getting the Genetic Test Results Back

8 weeks ago, I held my screaming son down on a table as two lab techs drew a vial of his blood.  Per his geneticist, we were having him tested for a newly found connective tissue disorder called Loey's Dietz Syndrome along with an array of other connective tissue disorders.  Everything fit and the diagnosis would explain everything that's gone wrong since his birth.

Today, I received a call from Little Dude's genetic counselor with the results of the test.  I held my breath, knowing that no matter what the result was, I would be crying as soon as I hung up the phone.  Crying from relief that we had an answer and sorrow that my son had a genetic syndrome. Or crying from relief that he didn't have a connective tissue disorder and disappointment because we still wouldn't have an answer.  Either way, I knew it would be bittersweet.

The results were negative.

The geneticist didn't recommend any other testing at this time, but wanted to continue to follow Little Dude clinically.  And that was it.   I hung up the phone and cried alone out in the garage where the kids couldn't follow me.

We've spent most of Little Dude's life waiting for the results of different genetic tests he's had done, all with negative results.  This time though, we thought we might finally have an answer, a name to put to whatever it is that has wreaked havoc in my precious baby boy's body.  We thought that the uncertainty of his future would be replaced by certainty or at least become a little more clear. 

I used Facebook to write a targeted update to the family and close friends who have been waiting for results right along with us.  For them, negative tests results are a reason to rejoice, and understandably so.  But for me, it means something different.  It means that that heavy suitcase of wondering, waiting and wishing for an answer, the suitcase that I was hoping to finally set down, is still mine to carry.  And now, I have to carry it farther than I thought I would.

Right now, Little Dude is doing amazingly well.  Developmentally, he's at about a 10-11 month level and is making progress.  He's 100% orally fed and only uses his G Tube for his meds in the morning and evening.  Due to slow weight gain and some weight loss, we've added a can of Pediasure to his diet each day and that has been helping.  He's been fairly healthy with only several minor colds and a couple of ear infections over the last few months.  He's outgrowing his tracheomalacia, his heart is healthy and he will probably outgrow his murmur on his own, and his GERD seems to be under control.  He hasn't needed a nebtreatment in a while and hasn't had pneumonia for about 6 months now.  He's a happy little boy who brings me so much joy that I just can't stop myself from scooping him up and squeezing him somtimes.

So where do we go from here?  Well, we keep treating symptoms and hopefully, we'll see Little Dude continue to improve.  And maybe someday in the future, we'll have an answer, but that day is not today. 

I'm going to leave you with a picture I took of Little Dude last night because...well, it's cute :)

Little Dude - 14 Months

Age: 14 months

Weight and height: 19 pounds and 29.5" tall.


Wearing size: Size 3 diapers and 12 month clothes. 

Likes: Baths!  He learned how to splash in the bath right before his surgery in March and gets excited when I start getting the bathtub ready for him now.  He loves playing with the big kids and tries to follow them around.  He LOVES being outside and cries when the other kids go outside without him.  If they leave the door open, he'll hightail it over there to try to get outside.   

Dislikes: He begs for food now and hates it when we don't share what we're eating with him.  Because he still chokes easily and can't have dairy yet, we can't always share, but I try to find something on my plate that he can eat.  

Eating habits: His feeding skills have doubled in the last month!  Things he choked on a few weeks ago, he's able to handle just fine now.  He eats EVERYTHING by mouth, and the last time I tube fed him was March 28th!  He passed a swallow study with four different textures and thicknesses with flying colors last week so we have no concerns.  He hardly throws up anymore, and I think his reflux has improved.  He eats three meals and one snack a day and is even using a straw sippy cup!  He usually only drinks 1-2 ounces from it, but the other day, he drank all 5 ounces with no problem so we're on our way to phasing out the bottles.  He loves baby food pouches and I use them to supplement his diet after offering him table foods as he's not always able to eat enough of those in one sitting.
   
Last month, his GI and allergy specialists okayed him to eat gluten which has been great.  He loves crackers, bread, and pasta and the gluten free versions of those foods had a texture that he often choked on so being able to eat gluten has really opened up a lot of things for him.  We'll be introducing dairy to his diet too soon. 

Sleeping habits: He's been starting to phase out morning naps.  He still needs them about half the time, but I learned quickly that if he fights the morning nap at all, he won't take an afternoon nap so I've been watching his cues more closely to determine if he should lay down in the morning or not.  He hasn't been waking up quite as often at night and is down to 1-2 times.  That's not a big deal because all I have to do is give him back his pacifier. and he goes right back to sleep. 

Milestones: He learned how to army crawl up and over things such as the shelf on our end tables and is able to get up on his knees or into a sitting position when he's propped up a little bit.  Still not crawling on his hands and knees, but thanks to his protective belt and cloth G Tube pads, we've been able to avoid irriation on his tube site lately.  He's able to lean on something and stand for a few seconds at a time if I put him in that position.  He even was able to get himself in a partial standing position (leaning onto the seat of the chair with his legs straight) when he tried to climb up on our fisher price toddler rocker.  He's also turned into a little chatterbox which is adorable even though he doesn't say any actual words yet.  He says "mamama" when he's upset so I think maybe he's referring to me, but I haven't seen conclusive proof of that yet.
 

    
Miscellaneous: Around 7-8 months, Little Dude got 6 teeth in all at once and then didn't get any more for a long time.  Last month though, he finally started teething again-10 teeth all at once!  He now has a full mouth of teeth.  It was a little rough for a couple of weeks when he had so many teeth popping through the gums at the same time, but we survived and he's back to his happy self now :)  He has turned into a drool factory though!

Developmentally, Little Dude is still 4-5 months behind, but he's making amazing progress and his fine motor skills are right on track.  His therapists, his doctors, and I are all blown away by how fast he's progressing on some things.  I just have to keep reminding myself that although he's still not even close to walking, he'll get there in his own time.




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

Random Monday - March 30, 2015

I'm almost embarrassed to admit this, but I've finally figured out a way to make the bedtime routine go smoother.  Bedtime has been an issue since Little Dude was born because he's so needy.  Granted, he has gotten much easier to care for, but he still requires a lot of attention.  I've always had the three older kids get ready for bed at the same time which involves going to the bathroom, getting a drink, and brushing their teeth.  As you can guess, sending three kids into the bathroom at the same time to brush their teeth is chaotic to say the least.  Last night, I had each of the kids pick out a book to look at while they sat on the floor next to me as I fed Little Dude.  Then, I had them take turns going into the bathroom to do their bedtime routine before returning to finish looking at their books.  When they were all done, I set Little Dude down for a minute to tuck them all into their beds and rub their backs.  SOOOOOO much easier!!  Now, if I can just figure out a way to keep Star from getting out of bed 874 times before she finally falls asleep... 

Have you heard of Target's subscription service?  I use my Target redcard to get free shipping and 5% off on all my orders from Target which means that I shop online there a lot.  I recently discovered that Target has subscriptions to just about any household item that gets used up (toilet paper, paper towels, feminine products, office supplies, etc), and that the subscription service covers diapers and wipes!  Plus, I save an additional 5% on all subscription items I order.  So now, I have diapers and wipes shipped to my house every month and even save money on them!  Disclaimer: This rave review was not sponsored in any way, shape, or form.  I just wanted to share something really cool with my readers :)

When people ask me what's wrong with Little Dude, I usually say that he's medically complex or special needs because it's too hard to explain his issues any other way since we don't have an actual diagnosis.  My sister, however, called him special edition the other day.  I like that way better than special needs :)

I recently opened an Instagram account for my boutique (@annaliesbabyboutique) and will be posting special deals, flash sales, Instagram-exclusive products, and giveaways over there!  My first giveaway is actually running now so make sure you head over there to enter.

Follow me on Instagram at @annaliesbabyboutique to enter my giveaway!

   
Due to being pregnant or having a small baby for the past 3 years straight, I kind of dropped out of the craft show circuit for a while.  This past Saturday, I was able to set up a table as a vendor at a craft show again!  Princess and my younger sister came along to help out.  My mother-in-law babysat Little Man and Star at her house, but couldn't watch Little Dude because they're remodeling their house, and his lungs can't handle the dust and paint smells, so I got to take him along as well.  It was a lot of fun, and I realized how much I'd missed doing craft shows.  Princess was very courteous and informative to everyone who stopped at our table.  She also took it upon herself to make sure that everyone had my business cards "because it's free."  She was adorable and definitely an entrepreneur in training!

Me and my two kiddos at the craft show

Princess manning the table

Yes, we even tube feed at craft shows!

Unprepared

So last week was a bit of an eye opener...

I woke up on Tuesday morning with a slight cold and some asthma issues.  Not a big deal, I just declared the day to be "Watch as Much TV As You Want While Mom Sits on the Couch and Does Nothing" Day.  Except that, a few hours later, I realized that my asthma was getting worse.  Fast.  I called my mom and asked her if she could come help with the kids because just keeping them alive that day was obviously going to be more than I could handle.  She quickly arrived and despite a nebtreatment and over a dozen puffs of my inhaler, my breathing was quickly deteriorating.  At one point, while sitting on the floor, I tried to stand up and was immediately very dizzy, to the point where I couldn't even keep my head up.  At that point, my mom called 911.  The kids thought it was cool when the ambulance came to our house and took mommy away.  I ended up staying the night in the hospital and my mom babysat for us until Hubby came home for the night.

My day so far: severe asthma brought on by a simple cold, nearly passing out from lack of oxygen (thank goodness my mom was at my house), an ambulance ride, 4 nebtreatments, and now in the acute unit at the er on oxygen. They just started me on an oral steroid and took a chest x-ray.  #ihateasthma #mamacantbreathe #dyingforoxygen #sojittery

A photo posted by Hannah (@supermommyornot) on Mar 10, 2015 at 12:08pm PDT

So the point of that kind of boring saga was that I realized how unprepared I really am.  As I sat on the floor with an oxygen mask on my face while the EMTs got ready to take me to the hospital, all I could think of was how much I needed to tell my mom about taking care of Little Dude.  Thankfully, I had an outline of his feeding schedule written up already so I could just hand that over to her, but when it came to his tube care, his skin care, his breathing issues...that's all stuff that I do everyday and I know exactly what works and what doesn't work with him.  I know what to watch for and when to change something in his routines.  I know what therapies he needs to work on that day and how much he can handle.  I realized that I'm the only person who knows how to fully take care of him. 

Also, the thought that I could've been alone with the kids when I nearly passed out and was unable to even reach for my phone is a terrifying thought.  Thank God my mom was there when that happened.

Because of my severe asthma, I've often had to rely on others to help me out.  I hate having to be dependent on others and constantly ask for help, but I don't have a choice.  And now that I have four kids, one of whom is medically complex, it bothers me even more.  My asthma has nearly killed me on several occasions, and I've always been very aware that I have a potentially fatal disease.

If something were to happen to me, I need to have the peace of mind that Little Dude will continue to receive all the care he needs, but his care is complicated and I'm the only person who knows all of the details.  Over the next week, I'm going to put together a word document detailing everything I can possibly think of regarding his medical conditions, his feeding, the storage of his supplies, etc and print it off so anyone who needs to take care of him can do so.  I already have a binder with an overview of his medical history and the names and contact info of all of his specialists, but I definitely need more information on the day-to-day part of his care.  Every month or so, I'll need to update the word document, but will be able to easily do so and then print off an updated copy. 

And just to end things on a good note, I put new batteries in our ball popper and Little Dude was a huge fan :)

I finally got around to putting batteries in the ball popper! Fyi, the belt on his waist helps protect his G Tube when he's playing on the floor. #supermommyornotlittledude #12monthsold #supertubie #ballpopper #newbatteriesnewtoy #playskool

A video posted by Hannah (@supermommyornot) on Mar 13, 2015 at 10:25am PDT

Giving Back With Little Dude's Birthday Blessings Bash!

Next Friday is Little Dude's first birthday.  In the year since he's been born, our family has been blessed in so many ways by family, friends, and complete strangers.  We've received meals during and after Little Dude's hospitalizations, money to help cover gas and other expenses from his many doctor appointments, visits, phone calls, and messages of encouragement, help with household chores, etc.

I believe in paying it forward when someone blesses you.  So, in honor of Little Dude's birthday, I'll be donating 20% of the amount of each order placed during the month of March at my Etsy shop, Annalie's Baby Boutique, to Gracie's Gowns.  I plan to make this an annual event and will pick a different organization to donate to every March.  I'm excited to kick off the first annual "Little Dude's Birthday Blessings Bash" month! 

You can also support Gracie's Gowns by sponsoring a gown for a child.
 
I've written about Gracie's Gowns before, but just to refresh your memory, Gracie's Gowns is a non-profit organization that provides personalized hospital gowns to chronically ill and special needs children at no cost to the family. Gracie's Gowns is very special to me because not only was it founded and run by a very sweet friend of mine, but because Little Dude received a gown from her as well.    

Little Dude with his hospital gown from Gracie's Gowns.  It's personalized with his name in the corner.

Let's make this month a memorable one for Gracie's Gowns! 

Random Monday - Feb 16, 2015

I had planned to write this post yesterday, but decided it would be more fun to get the flu and be miserable all day instead.  Side note...that was a terrible plan.

Little Dude was not as happy about his new pseudo-personalized outfit as I was. #blogpseudonym #nothisrealname #supermommyornotlittledude #11monthsold #littledude

A photo posted by Hannah (@supermommyornot) on Feb 14, 2015 at 12:05pm PST

Star's bedtime and naptime ritual includes a "huh and a mah." She gives me a big hug (huh) and a kiss (mah) on each cheek. Then she leans back to look at my face, says, "uh-oh!" and, wipes her kisses off my face before laying down to go to sleep.

Tattling is not allowed in my house.  It's okay to tell on someone if they're hurting someone or breaking something.  So, when a child comes to me with that tattling look on their face and starts their sentence with, "So-and-so did...", I cut them off and ask them if someone is hurt.  If the answer to that is no, I ask if someone is breaking something.  Princess came to tattle on Little Man to me the other day so I asked her both questions.  Her first answer was no, but when I asked her if someone was breaking something, she replied, "Just the rules!"
Touche, my dear.

Little Man: Mommy, can I take my sweater to grandma's house?
Me: Sure, I guess.  Why do you need your sweater?
Little Man: In case I get sweaty, then I can put it on.

Watching traffic. #supermommyornotlittleman #4yearsold #supermommyornotstar #2yearsold #kidsinawindow

A photo posted by Hannah (@supermommyornot) on Feb 13, 2015 at 12:39pm PST

Last week was Tube Feeding Awareness Week.  There are so many myths and wrong beliefs about tube feeding that raising awareness is important so kids and adults who are tube fed don't feel ostracized or abnormal.  I shared Little Dude's tube feeding story on the blog and shared posts on Facebook and Instagram to help raise awareness.

Today marks the start of Feeding Tube Awareness week! Do you have a question about tube feeding or Little Dude? Feel free to ask! #feedingtubeawareness #supertubie #tubie #tubiemom #feedingtube #gtube #supermommyornotlittledude #iloveatubie

A photo posted by Hannah (@supermommyornot) on Feb 8, 2015 at 8:04am PST

Can we just take a second to talk about how a certain little guy is only 2 1/2 weeks away from turning ONE?!?!  I've always looked forward to my kiddos going into the toddler stage as it's so much fun (and work!), but it scares me a bit with Little Dude because I have to face the fact that he's slowly growing out of being a baby and that means that we will have new challenges soon.  So far, he's unable to eat any table foods without choking except for gluten-free puffs that I break in half for him, we don't know for sure if he has Celiac's Disease or not, we know he has food sensitivities, but not sure to what, and he is nowhere near ready to drink out of anything other than a bottle.  I'm excited and nervous to see what this next year brings for my sweet little boy.  We'll just take it one step at a time and I'll keep reminding myself that he won't be going off to college getting all of his nutrition from formula in a bottle.


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

Little Dude's Tube Feeding Story

This time last year, Little Dude was still a month away from being born, and we had no idea what he would face.  If someone had told me that he would have to be tube fed, I would have completely freaked out.  In fact, after one of Little Dude's many doctor appointments when he was about a month old, I stopped at the Target Cafe to attempt to feed him before driving the 45 minutes back home.  While I struggled to get my screaming baby boy to take even one drink from his bottle, a family at a nearby table struck up a conversation with me.  They could definitely see that something was wrong and asked about him.  We talked for a while and at one point, the mom asked what the doctors were planning to do if we couldn't get him to eat.  I remember standing there stunned when she asked if he would have to get a feeding tube.  I stammered out that I didn't know, but in my head I was in complete disbelief and denial that it would ever come to that.  I mean, only kids who were seriously ill, disabled, or premature got feeding tubes, right?  Little did I know that less than a month later, I would be signing a form allowing a surgeon to place a G Tube in my baby's stomach.

Little Dude had an Ng tube for 5 days before getting his G Tube

You can read an updated version of this post on my new blog, Sunshine and Spoons!

Little Dude - 11 Months

Age: 11 months

Weight and height: 16 pounds, 3 ounces and 28 inches long.  In January, he had pneumonia and RSV and wasn't able to handle his regular volumes of food so he lost some weight.  He was down to 15', 14", but thankfully he's starting to put some of that weight back on now.

Wearing size: Size 3 diapers and 9-12 month clothes. 

Likes: He loves attention and is total little flirt with the sweetest smile.  He loves army crawling around the house and bugging the big kids. 

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 moved around.  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). 

Eating habits: He gets four bottles a day with 5 ounces of water and 3 scoops of the Alimentum formula which is concentrated for lower volume.  I start each feeding by offering the bottle and whatever he doesn't eat is tube fed.  He drinks approximately 50% of his formula.  He eats pureed baby food 2 times a day which I add a teaspoon of olive oil and a tablespoon of rice cereal to for added calories.  He had been doing well with gluten free baby puffs, but in the last month, has been throwing up every time he has anything more than purees.  I'm attributing that to being sick which makes him even more gaggy than usual. 

Sleeping habits: He takes a morning nap from about 9:30 am to 10:30 and an afternoon nap from about 1 pm to 3 or 4 pm.  He sleeps okay at night, but does still wake up several times.  He usually goes right back to sleep when I give him his pacifier.

 
Milestones: He finally learned how to sit unsupported!!  This was a milestone that we've been working on for months and he finally got strong enough to be able to do it.
    
Miscellaneous: He was sick for ALL of January with pneumonia and RSV.  It was a very long, very difficult month for both of us.  He was hospitalized for one night, had three emergency room visits, and saw a doctor several times.  He also was on three different antibiotics.  I'm so glad he's finally feeling better from that, but his lungs are already sounding junky again so I know that something else is starting up. 
We have started taking him to a different health care system because we felt that it was time for some fresh eyes on him.  I really loved some of his doctors at Mayo and we're going to miss them, but it's much better for all of his care to be at one place to avoid confusion so he has all new specialists now.  The best part is that his new primary care doctor is a genetic specialist and is very good at caring for medically complex children. 




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

 

Feeding Tube Awareness Week

Today starts Feeding Tube Awareness Week!  This time last year, I had no idea that I would be raising awareness for Little Dude and hadn't even heard of Feeding Tube Awareness week.

This week, I will be posting about tube feeding here on my blog and on social media.  If you have any questions at all about tube feeding or Little Dude, now is the time to ask them!  There are no dumb questions!  Just remember, a year ago, I knew nothing about tube feeding either :)

And to close this blog post, here's a picture of my favorite tubie!

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

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.

You can read an updated version of this post on my new blog, Sunshine and Spoons!

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...

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.   




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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? 

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 walmart.com 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? 

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!

 

The Only One?

I recently read this article about a 12 year old boy who is starving because he can't eat and it was upsetting to me.  First of all because this boy and his family have to go through something like this and secondly because of this statement in the article: "He lacks all impulse to eat or drink. And he might be the only person in the world burdened with this bizarre medical condition."  (Italics mine)

The only person in the world?  Really?  Apparently, the reporter didn't bother to do much research on the subject other than on the boy featured in the article himself.  I belong to a support group on Facebook called "Pediatric Feeding Disorders/FTT/GERD/Kiddos with Feeding Tubes" with over 6000 members.  Six thousand members.  That's six thousand parents and caregivers of children with feeding issues.  It's estimated that approximately half a million people worldwide have a feeding tube.  The lack of understanding for pediatric feeding disorders is astounding and quotes like the one in the article only perpetuate the lack of awareness.  

Eight month old Little Dude is one of the many children who have a feeding disorder.  He rarely shows hunger cues and, if it were not for his strict feeding schedule, would go all day without eating.  Every three hours, I make a bottle and work with him to get him to drink it.  Sometimes he drinks the whole thing, but more often then not, he drinks very little or none so I have to feed the rest of his formula through his feeding tube.  Despite my constant efforts to feed him orally, he gets about 50% of his food via his G Tube.  After running dozens of tests, his doctors still have no idea why he doesn't eat.  The lack of diagnosis means that it can be hard to get people to take his feeding disorder seriously.  I've been accused of overreacting or just not trying hard enough to feed him.  Some people see the feeding tube as the easy way out (Sorry, but having a hole in your child's stomach and dealing with tubes, syringes, infections, etc, is actually NOT easy).  Let me tell you, until you have watched your child waste away and starve in front of you, you cannot understand how absolutely heart wrenching that is.    

Little Dude at 2 1/2 months old, shortly after having his G Tube placed

Little Dude at 7 months old, 5 months after getting his G Tube

The article concludes with a plea from the parents.  They're desperate to find others going through the same thing as them both for the support and to help them find answers.  It's heartbreaking that they think they're alone in this struggle.

So why aren't they aware that so many others are dealing with similar issues?  Probably because pediatric feeding disorders are not usually talked about.  The general consensus is that children who won't eat are spoiled and manipulating their parents.  Telling someone that your child has a feeding disorder opens you up to a lot of criticism and critiquing of your parenting skills.  Not being able to feed your child, the most basic of parental care, makes you feel like a complete failure as a mother or father.  Parents of children like my Little Dude often hear statements such as "He'll eat when he gets hungry enough.  Babies won't starve themselves!" or "Let me take her home for a while.  I'll get her to eat!"  Both of these comments are untrue and hurtful because they only make a parent who is struggling to feed their child feel even worse than they already do.

If you have a child with feeding problems, know that you are not alone.  There are many groups and pages on Facebook for support and information, internet forums and websites (www.feedingtubeawareness.com is a good place to start and has many resources), and some areas even have local groups where you can meet other parents with similar issues.

If you are blessed to have children who eat normally, don't take them for granted and please don't jump to conclusions or judgement when you see another parents struggling to feed their child.  You can find tips on how to support a parent with a child or children with feeding disorders here.       



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

Little Dude - 8 Months

Yes, I know I skipped Little Dude's 7 month update. Oh well, I wasn't aiming for mother-of-the-year so I'm fine with it!   


Age: 8 months

Weight and height: 16 pounds, 4 ounces.  I'll find out his height at his 9 month checkup next month. 

Wearing size: Size 3 diapers and 6-9 month clothes.  He must have had a growth spurt because all of a sudden, his 3-6 month clothes were too short for him. 

Likes: He's very sociable and LOVES attention.  He loves blankets and snuggling.  His favorite toys are ones that play music.  He LOVES rolling over and has figured out that he can get places by doing so. 

Dislikes: Being where he can't see me.  He also really hates it when I do his G Tube 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 Baby Einstein, Peter Hollens (his favorite is Ashland's Song-he smiles whenever I turn it on), and Lindsey Stirling. 

Eating habits:  He gets five 5.5 ounce bottles a day which means that I don't have to stay up late to do the last feeding of the day while he's asleep anymore.  He takes about 50% of his formula by mouth and the rest is tube fed.  He usually gets baby food three times a day-2 tablespoons of rice cereal in the morning and 2 tablespoons of baby food each for lunch and supper.  His excema flared up when I gave him applesauce so after trialing it again with the same results, apples are on his do-not-eat list.  He does seem to have some issues with staying full longer than he should.  He was able to eat a 4 ounce jar of baby food in a sitting and so we tried cutting back on his formula since he was eating so much food, but he ended up losing 11 ounces in 6 days when we did that so for now we're focusing on formula.  He also stays full a lot longer when he eats baby food and isn't able to handle taking formula for long periods of time after eating (longer than normal) so the most baby food I give him at a time is 2 ounces which is still pushing it a little.  He is developing the same eating habits for baby food as he has for formula-sometimes he eats it well and sometimes he doesn't.
     
Sleeping habits: His sleeping habits have seriously improved.  It kind of happened overnight (pun intended) when I moved Star out of the crib and moved him in about a month ago.  That night, I laid him down awake and he fell asleep.  ON HIS OWN!!!!  Ever since then, I've been able to lay him down awake in the crib (he won't do it anywhere else) most of the time for naps and bedtime and he will fall asleep, usually without crying too much.  Every once in a while, I still have to rock him to sleep, but I find that I can appreciate that a lot more now that I'm not spending literally half my day rocking him.

That smile kills me with cuteness

Milestones: He has SIX teeth already!  They didn't seem to bother him much when they came in so I didn't really notice until they had already popped through.  He has two on the bottom and four on the top.  He's also rolling over like crazy in both directions (right and left although he still prefers rolling to the left), and I saw him push himself up on his arms the other day.  We've been practicing sitting unassisted a LOT (I sit behind him with my hands close enough to catch him without touching him).  He's not ready to sit on his own, but at he's getting better at keeping his balance for short periods of time.    
    
Miscellaneous: He's gotten sick twice in the last month and a half which, obviously, is bad, but, he managed to stay out of the hospital both times so that's awesome!  His G Tube site looks great right now, thanks to the Granulotion and thankfully his Strep has not come back again so no infections lately.  We're watching it closely though and if there's any change in his stoma, we'll be taking action immediately because it worsens so quickly. 



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

Random Monday - November 3, 2014

If you haven't seen it yet, go read my review on "Their Name is Today" by Johann Christoph Arnold and enter to win a copy of the book for yourself.  But only if you have children.  Or grandchildren.  Or students.  Or nieces or nephews.  Or come in contact with children at all.

I have three of the four kids' winter clothes unpacked.  Little Man will just have to freeze in his short sleeved shirts until I get around to re-working his closet too.  Or he could just listen to his ever-so-smart Mommy and wear a sweatshirt instead of whining about how cold he is.

Speaking of switching out the kids' clothes, Little Dude outgrew his 3-6 month clothes and I had to get the 6-9 month clothes out for him.  I may or may not have cried a little while I was packing away his 3-6 month clothes because first of all, there's this and also because he didn't get to wear a lot of his clothes because they weren't G Tube friendly.  I know it's a small thing, but it still bothered me that he missed out on getting to wear some of the clothes passed down from his big brother because of his G Tube.

If you follow me on Instagram, I apologize for the repeat pictures.  But seriously, these kids are so cute, I don't think it'll kill you to look at them again :)

We don't celebrate Halloween for religious reasons, but we still let the kids dress up for school.  I saw a pizza costume at Target and knew that Little Man had to have it as he's insanely obsessed with pizza (he'd be thrilled if he could have it for all three meals and a snack everyday).  But the price tag made me back away shaking my head.  So instead, I headed over to Hobby Lobby and picked up some felt and made one for him.  It was super fast to sew up and turned out really cute.  He absolutely loves it and begs to wear it everywhere we go.
 

I have a weird sense of humor.  It's genetic.  My whole family is weird.  But even I know it was a little pathetic that I spent several days looking for Little Man's dress-up cowboy hat just so I could get this picture of Little Dude...

Folks, meet Walker Texas Ranger.  Hahahahahahaha!!!!  I slay myself...  *crickets chirping*  Okay, fine.  At least I thought it was funny.