Annual Craniofacial Appointment

This has been a hard post to put together. I have always been very transparent about Grant's condition, but I'm always hesitant to put it all out here on the internet. But then I receive an email-usually once a week, from someone who is going through something similar with their own child, and I decide to go ahead and hit the publish button. 

For whatever reason, God always chooses to gently (and other times, not so gently) break us up and shake us up from the comforts of our little world during this time of year...usually between the months of August-November. Three of Harp's four surgeries have been during these months. The life-changing opinion that he had cancer was during these months. And during these months is when Grant is due for his annual craniofacial work-up in Chapel Hill, among several other tests in the next few weeks.

Last week, Grant had his check-up with a team of doctors at the Craniofacial center at UNC-Chapel Hill. 

You make your rounds and see specialties which include: Speech Pathology, Oral Surgery, Plastic Surgery, Pediatrics (nurse), Ear-Nose-Throat, Child Psychology, as well as a separate team of doctors for dentistry.

To be completely honest, I wasn't fully prepared for this appointment. You see, we have spent months not really thinking about his syndrome. It hasn't been on the forefront of our minds; it hasn't really been an issue. The only doctor we see regularly (every 3 months) is his ophthalmologist. And even though its not common to see toddlers who wear glasses, it isn't uncommon to see children wear glasses...so I never really feel like he is all that "different" from other children. 

Before I go on, I just want to put this out there. It is very, very hard to sit in front of multiple doctors in one day, and listen to them point out every single thing that is wrong with your child. It is hard. 

The doctors are kind, but they also do not sugar-coat things for you. You have to hear several times that the  beautiful, flawless face that you cannot possibly imagine loving more then you already do, is anatomically wrong. If you have any doubts or denial issues going in, you certainly do not, leaving. 

So...just a quick, bland update from some of the specialties: 

Speech: the hardest appointment of the day. At Grant's 18m check-up last month, I told his ped that I thought he needed speech therapy, sooner rather then later. I was at peace with this decision, and overall, wasn't too concerned about him catching up. At the Craniofacial appointment, the pathologist made it very clear to me that he had a "severe" delay and needed intervention immediately. Lump in throat. After a hundred or so questions, she also introduced an idea to me that literally made me sick to my stomach. She thinks (this is NOT an official diagnosis) that he has a Sensory Processing Disorder. I'm not a doctor, but I AM his mom who is trying to look at this realistically...I'm not entirely convinced he has SPD. We have a full speech/development evaluation tomorrow, so we'll know more then. But if anyone is out there reading this, I ask-beg-that you pray that the SPD diagnosis would be made abundantly clear. I do see some symptoms, but not many, and I do not wish for a label to be attached to him that simply isn't true...And I also want to be able to accept and embrace a diagnosis without any doubt. 

Plastics/Oral: This is a wait-and-see game with these two specialties. Will he need surgery? Probably. But we have to wait and see how his face develops, specifically his jaw. This next year will be very important to what treatment may be needed for his first round of surgeries. He also has a sub-mucous cleft palate, but it is not severe. And once he starts to lose his baby fat, they can do fat-injections to make his face more symmetrical. 

ENT: Not sure if I've ever expressed my concerns on here about this before, but here goes: I have thought for some time now that he may have hearing loss in one of his ears, specifically his left ear. I'm not going to go into why I think this (I could write a book), but it is something I have been concerned about. His ENT at UNC wants us to come back in Feb (when he turns 2, and it is more accurate) for a full comprehensive test to determine what he hears. I think the specialist we are seeing tomorrow might do a hearing test too, but I'm not entirely sure. The ENT at UNC is by far my favorite doctor. She is so enthusiastic and passionate about what she does. The only thing she noted (which we knew) was that his left ear canal is very small. I also should note that after a quick test (can't remember the name), the ear drum in that ear does not move as it should. 

***

After the first visit that morning with the speech pathologist at UNC, Kane and I sat in the waiting room with other parents going through the same thing. I didn't make eye contact with anyone because I knew that one reassuring smile from another mom would be my breaking point. The only thing I could think of to calm me down was that the littlest love of my life was fearfully and wonderfully made by the Creator of the universe. And that is the same truth that I tell myself today. 

A Day in the Life

**I've been wanting to blog about what a typical day looks like for us for a while now, just to look back on in a couple of years! I obviously didn't take pictures of everything, but here is a sneak peak into a typical Thursday (from my point-of-view!):

6:35am: Ugh. Wake up time for me! I do contacts and enough make-up to make me look human. 

6:45-50 am: Wake Carson & Harper up. This is SO hard. 10+ hours of sleep a night is just not enough for them. I actually dress BOTH of them everyday (except for the rare occasion that one of them wakes up easily). I know it sounds crazy that I dress them at this age, but it is SO much easier for me to do it...we made them dress themselves last year, and it would take forever, resulting in Carson being almost late or tardy all of the time. They are NOT morning people! I can literally dress them in about 1 minute-assuming they are awake enough to stand up themselves, haha!! Anyways, this works for us right now, so we're going with it.

6:50 am: Breakfast for the boys while I make their lunches for the day.

7:00am: Boys brush teeth & hair. Get book bags together, etc. and kiss Kane goodbye (*I don't wake Kane up to help in the mornings...theres no need for both of us to be up, and I want him to sleep in and get his rest, anyways. He does offer to take them (and does occasionally), but I can't sleep through the noise, haha!)

7:10am: Leave for school. Its usually a 7 minute drive (with traffic). I've really come to love the quiet ride back home. 

7:25 I get back home...Grant starts stirring around this time. He wakes up and watches the Today Show for a bit (one of his fav shows ever! ;)

8 am: Breakfast for Grant while I drink my coffee. I usually do a short devotion during this time, but I don't today. 

After breakfast, I clean up the kitchen, sweep, change/clean up Grant, start a load of laundry, make beds, and pick up random messes around the house.

I've been trying out these laundry pacs for a few weeks...I actually like them! 

Of course in the mist of all the aforementioned, I have to rescue Grant from under the table around 10x. How in the world he gets under there but cannot get out is beyond me. 

I also have to pull him off of this chair a dozen times before I kick him out of the kitchen and close the baby gate:

9am: Start dinner! I know, sounds crazy, but my new BFF (aka, The Crockpot) has been a huge lifesaver lately! Tuesdays and Thursday nights the boys have football, and crockpot dinners are the ONLY way I can get everything done in the evenings, without all of the stress!

Today's dinner is Chicken & blackbeans. 

Love the Crockin Girls website!

It took about 5 minutes to throw everything together: (the majority of that time was taking the lids off of the cans!). And just like that, I'm done making dinner!

In the few minutes that I was in the kitchen, Grant was busy standing on the time-out chair clicking the computer mouse about a million times.

After this, I get Grant dressed to go outside. He is BY FAR my most active child. The boys (at 18 months) would sit and play and read books, etc. Grant will not at all. He just constantly wants to be on the move. 

9:45am: Take Grant outside. He walks the front and back yard at full speed for 30 minutes, only stopping to occasionally peer up at trees. 

10:15-11:15am: Because Grant is SO active, I'm having trouble getting him to sit still so I can actually teach him things. He does seem to love music, so lately I've been whipping out Barney dvd's so he can (hopefully) learn a few things through music...it actually seems to be working! I skip through the dvd and only play the songs he seems interested in.

On mornings where we don't have to go anywhere, I usually do 15 or so minutes of play with Grant, followed by a quick 10 minute (or less) chore. I continue the play-with-Grant/quick-chore pattern most of the morning.

Of course while I was putting another load of laundry in the wash, he hopped back up in this chair. Stinker.

His favorite game EVER is to throw balls around the house, chase after them, and then throw them again. 

His other favorite game is to throw toys over the couch :-)

11:30-12ish: Lunch. With the boys back in school and practice at night, I've had to adjust Grant's schedule quite a bit so that he can have a good nap. So early lunch it is! While I was making lunch, Grant got into Kane's business cards.

12:15ish-1:50pm: Grant's nap. 

1:50: Wake a very sleepy Grant and leave to go pick the boys up from school. 

2:25: The boys are out! 

Normally we go straight home, but today we have to run to my parent's house to check on their house, etc. while they are out of town. I let the boys watch Disney for a little bit, fix them a snack, give their dog a bath, and load her up to come back to our house for the rest of the week (we have a busy weekend ahead and won't be able to get back their house to feed her, so with us she comes!)

Isn't she....cute? haha!

We got back to our house around 4:15pm. I fold and put up laundry, go through the boys bookbags and lunchboxes, and wash dishes (our dishwasher has been kind of sketch lately). I also take this time to get practice clothes set out, underclothes ready for after their shower later on, as well as set out the boys' school clothes for the next day. I let the boys do whatever they want during this time.

5pm: The boys do their homework, while I add last ingredients to the crock pot and get dinner sides ready. I'm back and forth with the boys, helping and checking their work.

5:30: Dinner! I'm still getting use to eating dinner earlier in the evening on practice days (especially without Kane), but it's just for another month or so.

After dinner, the boys get their practice clothes on, I get Grant cleaned up, dinner cleaned up, and as soon as Kane gets home at 6:15pm, we are ready to head to football practice. 

6:30-7:30: Football practice.

7:45 pm: We get home and all three boys get in the shower. Kane is on shower duty while I get his dinner reheated (yeah I know...poor guy!). I get Grant in his jammies while the boys get dressed & brush their teeth. Carson reads his nightly verses from his bible outloud. The boys take turn praying, and then it's lights out! They are knocked OUT by approximately 8:02pm every night!

8pm-11pm: No pictures, but this this is our time! :) As soon as the boys go down, we shower and I go ahead and get lunchbox stuff ready for the next day, as well as breakfast items (bowls, napkins, etc) and anything else ready that will make the mornings go smoother. From 9pm on, we usually relax together. Some nights I'll sit down to do a quick blog, and Kane loves to listen to sermons on his phone. Around 10:30 we head to bed and start our nightly reading. Right now, Kane's going through his new study bible, and I usually just focus on short passages from my bible.

And that is what a typical Thursday looks like for us right now! Hope I didn't bore you all to death! :)

**Whew! That was the longest blog post in FOREVER! It took most of naptime Friday to type it! 

discipline

For the days they just can't seem to get along...

Discovering Christmas

And by discovering Christmas, I actually mean destroying our decorations. Same difference.

Gosh, it's been a while since we've had a mobile baby in the house! Our ornaments cry out in fear every time Grant's grubby little fingers get near. I thought I was in the clear when he didn't seem to care about the tree the first few weeks it was up..but ever since Monday, he just cannot resist the sparkly bulbs. 

You know those cheesy baby-light pictures that are all over pinterest? Yeah, I jumped on that bandwagon. And then crashed. Remember how I'm not a photographer? Or how, I never take my camera off of auto? Those kind of pictures take skills-and photo skills I have not. Along with an uncooperative babe.

As soon as I would set him down-he would take off. 

or chew the strand:

or completely ignore me

and then crawl to me-getting way too close to the camera.

mostly, he just played with the lights.

and when I realized how ridiculous all of this was, I started laughing. Which happened to get his attention. And when I laugh, he laughs along.

Stinker.

Carson and Harper Update

It's been a while since I have done an update on the boys, so here goes:

Carson: At 5 years, 5 months he is quite the teenager. He dresses "like a teenager" and is moody like one, too! Carson has always been on the moody side, but lately it's been pretty bad. He's happy one minute, and sulking about something the next. Carson is SUCH the first child, and is eager to please and thrives on praise. He is obsessed with the Power Rangers and wants to grow up to be Tommy. Carson is g.r.o.w.i.n.g. faster then I can keep clothes on him. Actually, all three of my boys are right now. Carson is currently in a size 12 shoe and wears size 5 or 6 in boys clothing. Carson pretty much thinks Kane hung the moon and that I am embarrassing. It breaks my heart just a little bit, but I know he is growing up. Even with the attitude, he is growing to be such a gentleman and I am SO proud of him. There are days that he pushes my buttons to the max, but then apologizes, and it makes me feel as though I'm not completely doing everything wrong :) He can be so sweet and loving, and is always so helpful with Grant. And he continues to excel in learning...We are going to get started on reading this summer, and I am so excited for him! I remind him all of the time that he was my first baby and always will be.

Harper: At 4 years, 2 months. there really are not enough words to describe my Harper. He is hilariously deviant. He  pretty much never listens. And even though I would never admit it to him, it is almost funny. Kane will have a long talk with him about listening and respect after Harper does something wrong...Kane will end his spill with something like, "Do you understand, Harper?" Harp will look him square in the eye and say, "Yes......Ma'am." You see what I mean? It's not funny...but it kinda is. He'll also do the same to me except replace "ma'am" with "sir." And I assure you, it is on purpose. He will also answer with a "Ro-oh-kay" in his best Scooby voice, or even a "Okay, dully bully" (we have no idea what dully bully means). He keeps all of us laughing with his antics. He is either always overdressed or naked. There really is no medium with Harp. Harp is growing too and is currently in a size 11 shoe and wears size 4 or 5 in boys. He has such a great disposition, and is rarely in a bad mood. He wakes Grant up every morning, and feels the need to add an "E" sound to everything when talking to Grant. A common convo goes something like, "Hey Grant-y its your bubb-y Harp-y. Do you want-y your pa-ci?" Grant LOVES Harper and thinks he's pretty great. And we do too.

I also want to add that I am SO proud of both of them-they have been in at the same church since birth-it is the only church they have known. We have been visiting a different church lately and they have done SO great at the transition. Just wanted to throw that brag in there :)

6 years ago, a trip to the nearby beach would have looked something like this: me. towel. magazine. or me. towel. friends. no prepping. no sunscreen. no planning in advance. just bliss. relaxation.

fast forward to present day: me. two wild kids. towels. beach bag. loads of sunscreen. buckets & shovels. drinks. more sunscreen.

when we get to the beach, the boys immediately take off to the water. no fear, running full speed. i suddenly become the helicopter mom, threatening to leave if they dare go in any further. 3 panic attacks later, i coax the boys out of the water to go build sandcastles. instead, they roll around in the sand, making sure there are a bazillion grains of sand on every part of their bodies. once satisfied, they repeat the process, running towards the ocean.

life is so much different with the boys, but even so i wouldn't trade my time with them for a relaxing day at the beach.


***thanks to everyone for their kind words, comments, and emails...harp is scheduled for an ultrasound on thursday morning to see what the bulge in his leg is...we probably won't know the results right away, but i'll keep everyone updated as soon as we know something!

do kids even do this anymore?

i'm not even sure kids drink from water hoses anymore, but mine sure do!

don't worry, the hose is {fairly} new ;)

disclaimer: carson

carson's normal speaking voice is what others consider to be  shouting. he has two volumes...loud and louder.

he also has this niche for embarrassing me in public. not like saying cute little things that make others laugh...but things that take years off my life.

there was that time he asked a complete stranger if he could touch her mole.  when she said he could, he began to massage it. massage the mole on her face.

or there was the time a man at our church asked him for a high five. when carson said no, the man asked him why. "because your hands are dirty." ohmygosh.

and of course i cannot forget last sunday when we were out to lunch. three young girls walked in wearing bright, colorful clothes/jewelry. carson pointed at them and proclaimed in his "louder" voice, "mama! look at dose color girls!" noooo carson. you cannot say it like that. it's "look at those girls wearing colorful clothes."

but by far, the most embarrassing moment to date was last wednesday. to give you a little background info, a few weeks ago, my mother-in-law and i were out shopping. she bought the boys two movies...Karate Kid and Mrs. Doubtfire. now to be honest, i haven't seen mrs. doubtfire in at least 10 years. so when we popped it in that night for family movie night, i was shocked at the bad language. a lot of "hells" and "damns." kane and i agreed to put the movie away so that the boys couldn't watch it again...we are a G and PG kinda family. so lets fast forward to last wednesday night. kane had beat us to church for the weekly fellowship meal, and had already made our plates. as the boys and i walked in, the pastor stood up to make an announcement. the boys ran ahead to kane while i stopped to pay for our food. as i started my way back to my seat, (the pastor was still talking, so the church is otherwise silent), Carson peers at his food and proclaims in his loudest voice, "WHAT THE HELL IS THIS?" oh yes he did. my heart stopped. there was a collective gasp from everyone in the room. i died. right there, i died. we took him back to a room to talk to him, and it was obvious he knew he said something wrong. tears welled up in his eyes. we explained to him that the word he used was bad. we talked some more and headed back out to eat. all eyes were on us. some judgmental. some understanding. some snickers here and there. i wanted to shout to everyone that we do not use curse words in our house. that he heard that phrase from a movie. AND THAT IT WAS ALL MY MIL'S FAULT! (hahaha juuuust kidding, Patty!) but we didn't. we just sat quietly and ate our food. 

sweet carson....i will be surprised if i make it to 30.

the oj disaster

kane and i woke up to this mess a few mornings ago...

kane's first thought: at least they tried to clean it up.

my first thought: ohmygosh they just wasted all of my napkins.

no use in crying over spilt milk...ahem...orange juice.

UPDATE-got my Blogger problems fixed! somehow my post editor was converted back to the "old" one? strange.

the leash

if someone had asked me a few years ago what i thought of toddler "leashes," then i would have probably said something like...maybe for other families, but definitely not for us

flash forward to present day...

harper is my spirited little boy...several times in the past few weeks, harp has wrestled out of my hand and took off running in the middle of busy parking lots, ignoring my screams to stop. there have been four incidents in the past two weeks....four times that harp could have been hit by a car and killed.

so a few days ago, i went to target and bought him a "leash"

{picture source}

this is not a matter of disobedience. this is a matter of safety. of life and death. i'm not trying to be dramatic...it is what it is. i know what so many people are thinking when they see us. i know that even if i told these people why i make him wear one, that they will judge me and comment on how i should discipline him instead. my answer? i did. and it didn't work.

so until my impulsive little guy learns to hold my hand in parking lots without taking off, he will wear "monkey" (as he affectionately refers to it as).

{picture taken with cell}

hopefully this will be a short term thing...

lunch date(s)

tuesday was a bad day for us.

it was one of those days where you just feel like your failing as a mother.

the boys were absolute monsters. all.morning.long.

so i got up today bound and determined to have a good day

after doing some house cleaning, i packed us a lunch and headed to the park.

the boys ran off some MUCH needed energy, and afterwards we walked over to the picnic shelter and had a picnic.

the boys were super excited. the weather was warm and the sky was a bit overcast (which was a nice break from the heat!)

i looked over at the boys several times as they munched away, simply thankful for that time with them.

because truth be told,  i'm not always so thankful. especially because a certain little one has been driving me crazy pushing the limit lately.

{harper trying to smile with a mouth full of banana}

{carson concentrating on his drink-ps-i actually buy those sugar-filled Hi-C's for Kane, but they were perfect for the picnic...and obviously the boys loved them}

i am going to make it a point to take them to the park for a picnic once a week...even when the blazing heat sets in, i will make it a priority...because it serves as such a simple reminder to me how fleeting this time with them is, and how i should never take them for granted.

move over bob harper...

theres a new fitness instructor in town

he's fierce.

and incredibly strong.

these past few weeks, carson has been obsessed with fitness.

he has spent countless hours ahem..."exercising" and throwing out generalized health advice such as, "momma, you should drink lots of milk like me so you can grow to be big and scrong." or "make sure and brush your teef so they can be scrong and helfy."

sweet boy.  

oh, and if your wondering, that is my headband he's wearing. kane and i do not own any exercising clothes/equipment, so carson's just going to have to make do ;)



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when i grow up

when i was a little girl, i knew exactly what i wanted to be when i grew up-a mother. after long summer days of running through the woods barefoot, i would retreat to my room and rock my babydolls, dreaming of the day that i could hold one of my own. granted that day came sooner than i expected, it still remains the most important thing that i will do in my adult life. motherhood has changed me emotionally, physically, and spiritually. my priorities are different and my fears have changed. i pray fervently that they will grow into honorable, Jesus-seeking men, and i pray that kane and i have the wisdom and courage to guide them. there are days when i know that i have failed miserably, and unfortunately because of their ages, those days have been far too frequent. but that is the blessing of motherhood-no matter how much you yell or make poor decisions, you have the opportunity to fix your mistakes and start new each day. i was never quite certain what career path i wanted to take, and to this day i still am not sure. i do know that the boys will always take precedence, therefore, the start of my (eventual) career will be many years away. my work right now is in the home, prepping and preparing their hearts and minds. my idea of what motherhood entails is vastly different than what i imagined it would be, but regardless, it is an absolute privilege to be able to take part in molding these little boys into what God has designated for them.

ps- another aspect of motherhood i was unprepared for?

wearing handmade necklaces made by the boys from wednesday night church...red barn and all. :)



bribery: potty edition

i came to a realization today.

every.single.day. for the past four years (and some), i have changed a diaper.

one or both of my boys have worn diapers for over four years now.

and i am so over it.

i have always had a "go with the flow" mentality when it comes to potty training. {no pun intended}

carson finally decided to use the potty the same week he turned three. and may i add that before that, he had not used it at all.

i had decided that with harper, i would wait until his third birthday to start the process.

i secretly laugh at moms who boast that their kid was potty-trained at 15 months.

i mean seriously? what do you want? a reward? a certificate? perhaps a pat on the back?

baby books may say a child is ready for training at around 2 years of age, but i actually read (and re-read for clarification :) in my anatomy & physiology book in college that most children's urinary sphincters are not even fully developed until around their third birthday.

and i don't know about you, but i trust my a&p book more than some random parenting book or internet forum.

but more than that? i trust my kids. i trust that when they are ready, they will go.

but that doesn't mean a little prompting isn't in order :)

as in...."harp, your three now. and three year olds go to the potty, not in their diapers. oh...and if you do go to the potty, i'll let you go to the circus this weekend."

worked like a charm.

i'm not into pull-ups...i think for the most part they are just glorified diapers. BUT they are pretty great for going out in public with.

so that's my method for potty training...bribery.

go ahead and try it...all the cool moms are doing it.

brothers.

they can be each other's best friend or worst enemy.



but the latter never lasts for long.

there is a special bond between brothers that is indescribable.

and i am so fortunate that i am able to witness it.

i love my boys.