Wednesday, August 27, 2014

The Purdy River Band and the Coolest Parents Ever

Have I mentioned that my parents are in a band?  Actually, they're in several bands, but one of the bands just put out their first CD!  Yes, my parents are that cool.


The band is called the Purdy River Band, and they play bluegrass music.  My dad, Dave Anderson, plays the banjo (let the banjo jokes fly!) and sings lead and harmony.  My mom, Elizabeth Anderson, plays the upright bass and sings harmony.  My dad's brother, Jon Anderson, plays the mandolin, fiddle, and dobro and sings lead and harmony. The fourth member of the band (who I'm actually not related to, lol) is Chuck Lahr who plays guitar, sings lead, and writes the songs for the band.

Here's a clip from one of their concerts:



My dad recorded and produced the CD and FYI, he's a total perfectionist when it comes to stuff like that so the sound is amazing.

Coolest guitar picks ever :)

The Purdy River Band can be found on Facebook, Twitter, Reverbnation and on their website.  You can buy their cd, Midnight Run, on Amazon.  Check it out! 






Monday, August 25, 2014

Random Monday - August 24, 2014

Princess after stepping outside: "It's so hot out here, I feel like I'm going to die to death!"
 
My older sister is a Whovian and let my kids watch some Doctor Who episodes at her house a few weeks ago which turned Princess into a budding Whovian as well.  While out shopping last week, Princess saw a blue port-a-potty and got excited..."Mommy, look!  It's just like Doctor Who's house!" which then led to a conversation about how my sister's house is just like the Tardis as well because "it's little on the outside except that it's little on the inside too."  Ha!
 
Princess: "You're the best mommy ever today!"
Me: "Thank you!  What about yesterday?"
Princess *thinks for a minute*: "No, not so much yesterday."
Thanks for the honesty, sweetheart!
 
Want baby fever?  Watch this:
 You're welcome :)
 
I got a copy of "All-of-a-Kind Family" by Sydney Taylor from the library.  It was one of my favorite books as a child, and I'm excited to be able to read it to Princess.

I've been desperate to get back to crafting, but thanks to some flooding in the basement last month, the floor in my sewing room needs to be re-done (which we're pretty sure will cost money) which means that I can't unpack my sewing supplies for a while yet.  Plus, Little Dude doesn't give me much time to dedicate to that sort of thing.  Sooooo, I've come up with some crafting I can do without my sewing machine.  Stay tuned in the next few weeks for the big debut!

I'm trying to teach Little Dude to fall asleep on his own.  And by "on his own", I mean, without me fighting/rocking him for an hour and with the pacifier, blanket, vibrating singing elephant, sound machine, infant swing, and any other sleep aid I can throw at him.  Wish me luck. 

Sunday, August 24, 2014

Little Dude - 5 Months

Age: 5 months

Sorry for the bad picture.  No camera cord yet so I had to use my tablet for his picture.

Weight and height: Little Dude 13 pounds, 0.5 ounces.  Not sure how long he is since we do weight checks once a week, but height checks are only during his regular checkups :)  I'm guessing between 24 and 25 inches long.

Wearing size: Size 2 diapers and 3-6 month clothes.  He must have had a growth spurt because one day the 0-3 month clothes fit him fine and the next day, they were all too short on him.  A lot of the 3-6 month stuff is still baggy, but if he keeps growing the way he has been, they'll fit him soon!

Likes: He's not a fan of being swaddled anymore, but still loves having his blanket around him and near his face (don't worry, I move it when he falls asleep!) when he's going to sleep.  He loves playing with and chewing on blankets too so they make a great toy too.  He likes sitting in the walker and jumperoo with a blanket tucked around him for support as he gets tired pretty easily.   He loves the standing position and has very strong legs.  He absolutely loves when people talk to him and smiles pretty easily now.

Dislikes: Not being entertained or held constantly.  He still HATES going to sleep and will scream and fight like no other baby I've ever seen. 

Eating habits:  Because his weight gain was plateauing, we increased his feeds to 5 ounces every 3 hours  (6 bottles total in a 24 hour period).  He'll eat a few ounces at a time and will sometimes finish a whole bottle, but usually he loses interest and refuses to drink the whole thing.  Whatever he doesn't take by mouth gets fed through his G Tube.  I tube feed his last feeding of the day so I don't have to wake him up since it's late at night after he's gone to bed.

Sleeping habits: He's napping a little better during the day.  I got a sound machine which seems to help him sleep a little longer.  He usually takes 3 naps a day-a shorter one in the morning and in the late afternoon and a longer one in the middle of the day.  He's been sleeping through the night (cue the hallelujah chorus!) for the last few weeks and is asleep for the night between 8 and 9 pm and sleeps for 10-12 hours.  He gets his last feeding of the day around 11ish and I tube feed that one so I don't have to wake him up.  It's amazing how everything doesn't seem quite so bad when you're getting decent sleep!

Milestones: He loves playing with toys and reaches for things as soon as he sees them.  He can roll over from his stomach to his back and Princess swears she saw him roll over from his back to his stomach too.  I haven't seen him do that yet, but he does barrel rolls.  He seems to be basically caught up developmentally!     


Miscellaneous: He's doing so much better than he was!  He has longer periods of time now when he'll be happy if I set him down and walk away.




Saturday, August 16, 2014

August: The Easy Month

August was supposed to be our easy month, our month off from doctors and diagnoses and tests.  The only appointment Little Dude had scheduled this month was a therapy evaluation on August 1st (they're going to monitor him with monthly home visits, but he doesn't need regular therapy other than that.  Yay!) and we weren't expecting any test results this month.

I really need to quit getting my hopes up about stuff like this...

Little Dude started a 3 week round of antibiotics in late July to treat a bacterial infection in his lungs.  After a week, I noticed an improvement in his coughing fits.  A few days before he finished the antibiotics though, I noticed an increase in his coughing, choking, and breathing difficulties.  As his condition fluctuates a lot, I didn't think much of it-just increased his nebs and kept an eye on him.  Then, on Tuesday night, he started having a really hard time breathing and by Wednesday afternoon, a fever had joined the party.  By that evening, he'd gotten much worse so I decided to take him to the doctor Thursday morning.  Little Dude barely slept that night and was absolutely miserable.

The next morning, I woke up to find that I was sick with chills, fever, stuffy nose, sore throat, and aches all over.  I could barely get up, but fixed a bed on the living room couch and moved Little Dude's whole operation over there so I could rest while caring for him.  I called the doctor and as soon as they heard that he was sick and having problems breathing, they said to bring him over as soon as possible despite the fact that the doctor was booked all day.  I was in no condition to leave the house so my mom came over to take him and a note with all his info to the doctor for me.  I passed out as soon as she left and slept until she came back (I slept through 3 phone calls from her even though the phone was right next to my head, whoops!).  Probably not the best thing since I honestly have no clue what the other three kids were doing during that time, but no one got hurt or destroyed anything.  Thankfully, that nap was all it took to get me feeling just a smidge better because Little Dude came back with instructions to head to the ER.

I packed an overnight bag for Little Dude and me, and my dad drove us up to the ER while my mom stayed with the kids (Hubby was sleeping since he was in the middle of a run of night shifts).  I was so glad my dad could drive us since Little Dude needed someone in the backseat with him to monitor his breathing and choking.   


We spent the afternoon at the ER, where Little Dude had an x-ray of his lungs that showed that he had pneumonia.  They tried to start an iv for antibiotics, but absolutely couldn't get one in nor could they get the blood they needed for a blood draw.  Little Dude has impossible veins, and the only way to get an iv in him is when he's sedated.  After spending over 40 minutes futilely poking my poor baby, they decided to give him the antibiotic in a shot instead.  If I'd known that was an option, I would've asked for it immediately since I knew they weren't going to be able to start an iv.  It took two techs and a long time to get just enough blood for the labwork.


Around 6 pm, Little Dude was admitted, and we were finally sent upstairs to a room on the peds floor which incidentally was right next door to the room he had in May.  He spent the night there for observation.

Because Little Dude was keeping his O2 sats above 90 on room air, he was able to come home the next day with an oral antibiotic.  If he didn't have his G Tube, they would've kept him longer because of concerns for dehydration, but thankfully, we can get plenty of fluids in him even though he's barely taking any formula by mouth right now.      

So, I'm just a little freaked out about cold and flu season now.  Little Dude's lungs and immune system are not in great shape and both Princess and Little Man will be bringing germs home from school this year.  If you want to find me this winter, I'll be the crazy lady with lysol in each hand and a "don't touch!" sign above the baby giving the stinkeye to everybody with a runny nose.  




Monday, August 11, 2014

Random Monday - August 11, 2014

First of all, today is my dad's birthday!!!  I probably shouldn't say this but he's 55 years old today :)  Hello, Senior Discounts!

Vacation Bible School at our church starts tonight.  My sister is going to come over to my house each evening to watch our younger kids and I'll take the five older ones to VBS.  I'll be helping with the junior high class so will be staying the whole time.  The kids are super psyched about it, but Little Dude has been running fevers, throwing up, and not feeling good periodically the last few days and Princess is starting to complain about not feeling good too so we'll see how they're doing tonight before I decide for sure if they can go.  I'd hate for them to miss it, but you just can't control when they're going to get sick. 

We got our tubie pads from Gotz GPadz today!  I've been looking for some that are thin and don't have tight, rough stitching around the edges and opening in the middle.  These fit the bill plus the price and shipping time were great.  I got an assortment of 10 for Little Dude.  Since my (Whovian) sister has helped me so much with Little Dude since he came home from the hospital in May, I knew I had to get the Tardis ones for him in honor of her.   :)  


Little Dude modeling one of his new tubie pads.

Have a great week, everybody!


Saturday, August 9, 2014

World Breastfeeding Week

I know I'm a little late to the party since World Breastfeeding Week ran from August 1-7th, but the constant Mommy Wars over the best way to feed your baby this past week really got me thinking.

First, let me fill you in on my history with breastfeeding...

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

I breastfed Little Man for 3 months.  It was a horrible experience.  He hated breastfeeding with a passion, and he screamed everytime I tried to feed him.  When he was 3 months old, I got mastitis and he flat out refused to even try to nurse.  I switched him to formula and within a month, he went from a screaming, scrawny baby to a chubby, happier baby.  It was definitely the right choice for him and for me.

I put a lot of thought into how I would feed Star before she was born, but the very thought of breastfeeding made me sick to my stomach, and I just couldn't bring myself to go through an experience like I had with Little Man again.  When Star was born, she was very tongue tied and probably wouldn't have been able to nurse well anyway.  I formula fed her from the beginning and never looked back.

When I was pregnant with Little Dude, I decided early on to bottle feed again.  I felt like Star was the first baby I had where I was able to actually enjoy the newborn stage since I wasn't fighting to get a baby to eat, and so I wanted to repeat that experience.  Little did I know that Little Dude was going to have issues with eating among other things.  Every time I tried to feed him, I felt like I was torturing him.  I felt like a complete failure as a mother as I watched him starve and then get a G Tube.  But the important thing now is that he's growing and thriving.  I've come to accept the button in his tummy and even love it because without it, Little Dude might not be here today and certainly wouldn't be doing as well as he is.   

I support breastfeeding.  I think everyone should at least give it a try before deciding it's not for them.  But I also think that sometimes, it's best for baby and mom to formula feed, and we need to stop judging other moms on how they choose to feed their baby.

I've seen way too many of my facebook friends lately stating that the BEST thing anyone can do for their baby is to breastfeed or bragging about how healthy and smart their kids will be because they loved their children enough to breastfeed.  For moms like me who are unable to breastfeed their babies or choose not to for various reasons, statements like that are a kick in the gut.  I love my children just as much as other moms love their kiddos, but the best thing I could do for my babies was to feed them, no matter how that was accomplished.  Formula feeding, breastfeeding, tube feeding...not one of these methods of feeding a baby makes that baby any more or less loved or makes the mom any more or less of a mom.     

So here's the deal: we all just need to agree that the most important thing is not how or what we feed our babies, it's that they're fed and they're loved.




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Friday, August 1, 2014

Little Dude - 4 Months

I finally decided to go ahead and publish Little Dude's 4 month update without his official picture since I'll be published his 5 month update soon.  I've had this written since he was 4 months old and took his picture at the same time.  I'll put the picture in when I get a new cord for my camera.

Age: 4 months


Weight and height: Little Dude is a hefty 12 pounds, 5 ounces and 24" long!  He's in the third percentile for weight (yay, he's finally back on the chart!) and the eighteenth percentile for height.  I'm loving his chubby little legs :)
For comparison, here are the other kids' stats at 4 months:
Princess: 11 lbs, 5.5 oz and 24" long
Little Man: 14 lbs, 11 oz and 25.75" long
Star: 12 lbs, 4 oz and 24.5" long

Wearing size: Size 1 diapers and 0-3 month clothes which finally fit him pretty well.  

Likes: Being swaddled in his new Aden and Anais muslin swaddles.  His flannel swaddle blankets are still his special blankets, but he gets overheated very easily and so I had to switch to something lighter for swaddling him this summer.  He loves the standing position and has very strong legs.  He enjoys being in the jumperoo for short periods of time with a blanket tucked around him to keep him upright.  He's a very sociable little guy and, if he's in the right mood, will give you the biggest smiles if you talk to him.

Dislikes: Not being held all the time (I've tried different baby carriers for him with no luck), going to sleep.

Eating habits:  His eating habits have improved over the last few weeks, although I'm hesitant to say he's "getting better" since we know from experience that his eating fluctuates a lot.  It has been encouraging to see him actually show hunger cues and want to eat sometimes, even if he still doesn't take enough by mouth for proper growth.  He gets 4 ounces of formula every 3 hours during the day for a total of 6 bottles.  Whatever he doesn't take by mouth gets fed through the G Tube. 

Sleeping habits: He doesn't usually nap well during the day.  If I set him down, he wakes up almost immediately.  He'll stay asleep longer if I hold him, but still doesn't nap as long as he needs to.  Sometimes, he'll have a good nap where he'll stay sleeping for over an hour after I lay him down, but unfortunately, that doesn't happen everyday.  He usually is asleep for the night by 8-9 pm.  Since he's 4 months old and has been gaining weight so well, the pediatrician okayed him to sleep through the night without a feeding.  He usually still wakes up between 1 and 3, but instead of feeding him, I put him back to sleep.  When he wakes up around 4:30 am, I feed him and then we both go back to sleep until between 6:30 and 7:30.

Milestones: He's smiling and "talking" and loves interaction.  He clasps his hands together and brings them to his mouth and will also grab things and try to get them in his mouth too.  He's just started purposely reaching for things whereas before he would only grab them if they happened to touch his hands.  He holds his head up pretty well during tummy time.  He has very strong legs and loves being in a standing position.  Developmentally, he's at about the level of a 3 month old and seems to be making good progress towards catching up.  He will be evaluated for occupational therapy to see if that would be useful to help him achieve the goal of being developmentally on track. 

Miscellaneous:  He can be a sweet little guy, but still a very challenging baby to care for because he cries so much and needs to be held.  After confirming tracheomalacia during a bronchoscopy, the pulmonologist instructed us to "spoil" Little Dude because he has a hard time breathing and often chokes when he's crying.  



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Tuesday, July 29, 2014

9 Tips For Moms of Special Needs Children

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



1. Keep the diaper bag overstocked and ready to go.  There have been quite a few last minute doctors' appointments that I thought would be quick, but turned out to be all-day affairs.  Having the diaper bag always packed meant that I was ready to go at a moment's notice and keeping it overstocked meant that I didn't run out of diapers when we were gone longer than anticipated.

2. Bring snacks for yourself.  I learned this the hard way when a quick morning check-up with Little Dude's doctor turned into a transfer to the ER where we spent over five hours before being sent to the hospital for an overnight stay.  I didn't have time to eat breakfast before I left and assumed I'd be home for lunch.  It was after 9 pm before I was finally able to get something to eat.

Little Dude's first hospitalization

3. Bring something to do.  You will probably spend a lot of time sitting at the doctors office and in the hospital.  Most places have free wi fi so definitely take advantage of that if you have a mobile device.  Don't forget chargers for your phone, tablet, etc so they don't die on you!  The first time Little Dude was admitted to the hospital, my phone went dead before I was able to finish making the phone calls I needed to make to update family on what was going on and locate a babysitter for the night for the older kids.

4. Keep your child's outfits simple.  If you have babies or small children, you know that they usually have to get undressed at the doctors' anyways.  When your child is seeing multiple doctors or is hospitalized, certain outfits will make exams easier.  While Little Dude was in the hospital, they allowed him to wear his own clothes so he'd be more comfortable.  I dressed him in sleepers that snapped down the front so we could run wires and tubes in between the snaps and easily undress him for exams.  After he got his G Tube placed, I continued to dress him in snap-front sleepers for a while because it allowed for easy access to his button.

Little Man and Star admiring the view from Little Dude's hospital room

5. Know your family and friends' work schedules.  I'm not saying you need to memorize their hours, but it helps to have at least an idea of when they are usually at work so you know who is most likely to be available when you need a last-minute babysitter for your other kids or a ride to the hospital.

6. Take a notebook to appointments for notes and questions.  When Little Dude was hospitalized in May, I bought a notebook to keep track of all the tests they were running, questions I needed to ask during rounds, his weight checks, etc.  It was immensely helpful.  I've since upgraded him to a 3 ring binder with sections such as contact info for his specialists, questions, a list of his symptoms and diagnoses, weight checks, etc for organizing information.  

7. Use your cell phone alarm for feedings or medication reminders.  My phone stores up to 10 alarms so in the morning, I set the alarms for feedings every three hours the rest of the day.  When you get busy, time can get away from you so it helps to have an actual reminder.

Little Dude when he got the Ng tube

8. Accept help from others when they offer, don't be afraid to ask for help, and realize that this is your new normal.  Yeah, it's hard to have to ask people for help when you want to be able to do everything on your own, but you're going to need help and emotional support.  I wrote a blog post about this a while back, but even I have a hard time dealing with the fact that I need a lot of help now.    

9. Always remember: you're stronger than you think you are.  I'm sure you never thought this would be your reality, but here you are.  Allow yourself to fall apart and just cry sometimes when you need to.  You can't be strong all the time, but you can pick yourself back up and keep moving forward.      


Do you have any tips to share?  Leave a comment-I'd love to hear them!


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Monday, July 28, 2014

Random Monday - July 28, 2014

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

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

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

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

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

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


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

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



Tuesday, July 22, 2014

Sometimes...

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


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

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

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

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

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

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

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

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

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

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


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


"Cause all of me loves all of you.  
Love your curves and all your edges
All your perfect imperfections
Give your all to me
I'll give my all to you
You're my end and my beginning
Even when I lose, I'm winning"  
~~John Legend~~