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!


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


 

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~~



Monday, July 21, 2014

Random Monday - July 21, 2014

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

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


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

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

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


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

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

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

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



Saturday, July 19, 2014

Adelaide's Attic Review and Giveaway

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


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


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


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



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


Julie was kind enough to let me interview her.


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

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

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

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


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



Friday, July 18, 2014

So Much To Miss

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

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

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

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

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

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

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

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

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




 

Thursday, July 10, 2014

Long Overdue Update on Little Dude

So we've been busy....

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

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

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

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

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

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

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



Friday, June 27, 2014

Little Dude - 3 Months

Age: 3 months

His sunburn hadn't healed all the way yet when I took this picture.

Weight and height: 10 pounds, 3 ounces and 26" long.  He's below the first percentile for weight on the growth charts and at 7 percent for height.

Wearing size: Size 1 diapers and 0-3 month clothes.  He's finally fitting into 0-3 month clothes better although it'll be a little while before he outgrows them.
 
Likes: Being swaddled and toasty warm.  Being sang to.  He loves being snuggled and takes a pacifier really well.  He loves ceiling fans and will smile at them when they're moving.  

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

Eating habits: Thanks to the G Tube, he's gaining weight well now.  He still won't take much formula by mouth, approximately 1 ounce per feeding, but at least he doesn't scream when I put the bottle in his mouth like he used to.  He gets 3 1/2 ounces of formula every 3 hours and then once during the night when he wakes up.  I start each feeding by offering the bottle and then whatever he doesn't drink gets fed through the G Tube.  Because of his fussiness, feedings can take up to 1 1/2 hours which means that I spend a lot of my time feeding Little Dude.
   


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 9-10 pm and then wakes up between 1 and 3 am to eat.  He's up for the day between 6:30 and 7 am. 

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. 




One of Little Dude's half smiles :)

Miscellaneous:  He still cries a lot, but less then a month ago.  Still way more than the average baby though.  He has appointments coming up with his geneticist and with pulmonology for a cough and wheezing he's had since he was 3 weeks old.  He had his first G Tube change and barely cried at all.  His stoma (the hole that the G Tube goes into in his stomach) has healed well.
He got his first sunburn from being out in the sun 15-20 minutes one day (that time was spread out throughout the day and wasn't all at once).  We were at a picnic and I was really careful to keep him out of the sun, but all it took for him to get badly burned was walking from one shaded spot to another during the day.  The next day, his forehead and nose were bright red, blistered, and weeping pus.  The poor little guy was miserable.  Once the sunburn healed, he was in the sun for less than a minute while I walked from the porch to a shaded spot in our yard and back.  By the time, I got back inside, his forehead and nose had already started to burn.  We're extremely careful not to expose him to any sunlight at all now since he burns so quickly.  When he's in the stroller, I cover it with a blanket and when he's in the carseat, I put a sunshade over it that covers the whole thing. 





Monday, June 2, 2014

You Don't Know How Strong You Are

Have you ever looked at someone else's life and thought to yourself, "There's no way I could handle that."

Chances are, you could handle it if you were there.




I read a lot of blogs written by mommies of little ones with disabilities and health issues.  Oftentimes, I'm left in awe of how strong these mothers are for their children and think how there's no way I could do what they do.

But you know what?  I never thought I was strong enough to handle a baby with severe eating issues, a G Tube, a possible genetic disorder, an array of specialists at Mayo Clinic working to figure out what's wrong with him, a variety of medical tests, many of which I've had to hold him down for while he screams, etc.  But I am.  I sure don't feel very strong some days, but other days, I look at all we've been through with Little Dude and can't believe I'm here and doing this.
And yet, when I hear or read of a child with health problems that are so much worse than what Little Dude is going through, I still find myself thinking that I wouldn't be able to handle that.  I'm sure that those parents think the same thing and yet, when faced with a tough situation, they're able to step up to the plate and take care of their child, no matter how hard it is.

Sometimes, I feel guilty for accepting so much support and help from my friends and family.  After all, many parents have it so much worse than me.  But we all need to remember that, even if someone else has it worse than us, it doesn't make what we're going through any easier or mean that we don't deserve help.  Like I wrote in this post, it can be hard no matter where you are. 

When you're a parent, you do whatever it takes.  You set aside your own needs to be sure that your child is taken care of.  You deal with the issues that life throws at you and come out stronger than you ever knew you were.

You can do this.  You can make it through the days when your child or children seem like they do nothing but cry, fight with each other, or get into everything.  You can handle a new medical diagnosis for your precious little one.  You can advocate for your child even when it seems like you're swimming upstream.  You can take care of the colicky baby who cries for hours everyday.  You can deal with non-stop tantrums from a toddler.  You can nurse and comfort your child when they're sick or hurt.

You're a mom (or dad!) and you're stronger than you think you are. 






     

Wednesday, May 28, 2014

Random Monday on Wednesday

Yeah, I'm a little off :)  My mind is a jumble of thoughts and I can't seem to get anything straight so I'm turning this into one of my Random Mondays posts even if it is Wednesday today.

Little Man told me that he only eats on Wednesdays now.  That should save some money on the grocery bill, right?

Princess will be done with school next week and I'm really looking forward to it.  It'll be so nice to have her home and not have to get up early every morning (unless Little Dude or Star wake me up, of course).  Right now, I'm up until 12:30-1:30 am with Little Dude, then up around 3 am for up to an hour and a half to feed him again, and then up for the day at 6:30 to get Princess ready for school.  I've had three other newborns, but this is a level of exhaustion that I didn't know was possible.  I actually fell asleep while pushing the stroller to the post office last week and many times, I'm so tired that my legs just give out and I have to hang onto something so I won't fall.  Someone recently complained to me that she was tired because she has to get up for work at 7 am four days a week after staying up late the night before.  This same person also told me that she was too tired and crabby to have any sympathy for anyone-this as we're dealing with unknowns and constant medical issues with our high-needs baby.  I was already having one of those days where Little Dude was being very needy and I was stressing about medical bills and his medical problems and the way she said it pretty much sent me over the edge so I spent the next 45 minutes crying.  But that's fine.  I'm not looking for sympathy, I'm looking for understanding and support and it's become pretty clear in the last few months who can be supportive and who can't.  Thankfully, most of my friends and family have been amazing and have done more to support us in so many ways than I could've ever asked for.     

We're loving our new house.  My mother-in-law and sister-in-law unpacked a lot of boxes and rearranged furniture for me while I was staying in the hospital with Little Dude so when I came home it felt like a home instead of a house filled with boxes and furniture. 

My sister feeding Little Dude.  We've found that, as long as he isn't crying too much, the bouncy seat is a good place to feed him as it puts him in the right position and we don't have to balance him and the tube and syringe at the same time.  Plus, he loves the bouncing motion so that can calm him down if he gets restless.

Little Dude has good days and bad days.  On a good day, he won't cry as much, will nap better, and will take more formula by mouth versus by g-tube.  On a bad day, he'll cry all day and will refuse to eat anything by mouth.  But, at least there are a few good days now and that's what's getting me through this right now.  And as a bonus, we finally got him on our insurance!  There was a problem with some paperwork and all of his medical claims were being denied which was a bit stressful for us.

Finally caught a smile on camera!

We're still waiting for a diagnosis for Little Dude.  Some of the genetics testing that he's having done can take months to come back so we know it could be a while.  In the meantime, his main issue is not eating and with the g-tube, we know we can help him get enough food now so we're focusing on that instead of the unknown.  Last week, he was turning blue when he cried so I took him the ER where they did an extensive echo of his heart to be sure there wasn't something else going on besides the PFO heart murmur.  His heart checked out and his lungs also looked clear on the x-ray so we didn't have to be admitted to the hospital this time.  Little Dude has had problems breathing and has had a cough and constant wheezing since he caught a cold at 3 weeks old (which is what put him in the hospital the first time).  Those issues recently got worse and we've had to do nebtreatments to help him breath.  We'll be looking into that more next week when he has his next doctor's appointment.  

A dear friend of mine sent Little Dude a personalized hospital gown for if he has to go back to the hospital.  She's the founder of Gracie's Gowns, an organization that provides special personalized hospital gowns to children with chronic or life-threatening illnesses at no cost to the family.  It's a wonderful organization that blesses many families and if you are able to, I encourage you to support it by sponsoring a gown for a child. 

Little Dude with his gown from Gracie's Gowns

It's taken me almost 2 hours to write this post thanks to the many interruptions from the kiddos and since it's now time to feed Little Dude again, I better call it good enough, no matter how disjointed and poorly written it is  :)