“If ever there is tomorrow when we're not together there is something you must always remember, you are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart I'll always be with you.”

~Winnie the Pooh

5.21.2017

10 years

it's now taken me several days to sit down and write this post.  partly because i am in shock that it has been ten years and partly because your brothers and sister don't make it easy to just sit down and get something done.  that's the beauty of it i guess, just being too busy to be sad.  i would have never thought that ten years could pass so quickly.  all those years ago on this day i would have told you i would never smile or be truly happy again.  i remember every single moment of that day.  every sound, every smell, everything.  loosing a child is a pain that cannot be explained.  the actual physical feeling of loss never goes away.  but much to my surprise i can say that i did smile again.   and i do feel truly happy.  but there are times when someone asks me how many kids i have and i stumble over the answer.  how many do i have here with me or how many do i have forever in my heart and soul?  i have 4 beautiful children.  you can't actually see one of them right now but i do everyday in my 3 who are here.  just when i think i'm going to be sad he sends me a sign not to be.  that sign may be his crying sister but i know it was just the distraction i needed.  this morning when i was woken up by the dog (who doesn't really get up in the middle of the night anymore) i looked at the time on the wall.  4:11.  your birthday.  it could've been totally random, but i choose the believe it was you.  you knew this day was approaching and i needed to know you're ok.  and i do know it.  as much as i wish you were here with us and we didn't have to have this day burned in our memories,  i have to believe you are in a much better place.  so, happy heaven day sweet cooper.  we miss you every second of every day.

our 3 little pieces of joy here on earth
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5.19.2017

jia update

let me just tell you all this, as if you didn't already know, but our carson is a real life superhero.  i should've known from the beginning that it was just in his blood.  i do no know any other ten year old who could handle all the things that have been thrown his way with such ease.  i'm pretty sure his superhero power is his amazing personality and ability to get over it an move on.  this kid has been through it and yet even with tears in his eyes and fear in his gut he can still smile and make me feel better about all the crap we have to make him do.  not once do i ever hear him utter a single complaint or a "it's not fair" when all i want to do is scream it as loud as i can.  

our latest hurdle, juvenile idiopathic arthritis, has been a doozy.  he went from being completely independent and even released from pt at school to literally crawling his way around the house (without so much as a single complaint, seriously, it's a real super power).  thankfully we were about to get on the schedule to get steroid injections into his knees.  i'm not sure carson would use the word thankful, but after seeing the immediate relief that's exactly what we were, thankful, grateful, amazed, relieved, all those feelings wrapped up into one is how we felt.  watching your kid be in pain and not be able to make it go away really sucks.  

so for now, we will stay on our once a week shot of an injection of meds that will suppress his immune system, and couple that will a bunch of meds to combat the side effects of that drug, along with his other daily medicine he was already on.  while we wait to see which ones will work for us i have looked into several different books on autoimmune diseases and how diet change can affect/help with the inflammation.  carson's celiacs blood work can back negative so as far as they are concerned it's not food related but it can't hurt to try a diet change if it would mean getting off some of the medicines he's on. never a dull moment around here, that's for sure.  

getting checked in and gowned up...see that little tear that escaped.  that about broke my heart.
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game face on
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being silly and trying to take our mind off the scary stuff
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all done and on the way home.  all in all he did great.  definitely not a fan of being sedated but once it all wore off he was just fine.  fingers and toes crossed and prayers said that we don't have to do this very often...maybe a diet change will help, maybe a supplement, or maybe the medicine will work and take over.  all i know is my carson is back to his old self running and playing.  which to be honest, i was worried we wouldn't see him do any of these things again.  so for now we will enjoy the benefits of modern medicine.   here he is running and playing for the first time since his knee pain started back in february.  and no, you're not seeing an illusion.  that is actually all 3 of my kids playing together.  i had to take a picture for proof.
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cannonball!
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5.01.2017

where did april go?

i always feel like this every year.  april hits and we are just running around like crazy people just trying to make it through.  we have birthdays, spring break, easter, baseball, tennis, end of year testing and just daily life.  before i know it school is over and we are on summer vacation!  i am counting the days...19 more to go!  we can do it!  not that our summer will be all that relaxing though.  carson will be doing robotics therapy again (he is not super excited about it but we felt like it helped so much and now with this new kink in our chain, arthritis, we feel like it'll really help) at children's healthcare.  it's a two week program and this year he is also doing OT along with PT.  it's such a good program and we are so lucky to live so close by...that being said, it's not just a hop, skip and a jump away.  it's going to be exhausting for all of us but so beneficial for carson, so we do it with a smile.  i can't wait to see the gains he makes this year.

i went through my phone and looked at all the pics from april.  wow.  it has been a busy month.  i'm always grateful for such a busy time from april to the end of may.  it keeps my mind busy.  the fact that may 21 is approaching and that it will be 10 years is never very far off my mind but thankfully, i have these three to keep me focused.  

the very beginning of april we packed up the new family truckster and headed to seaside for spring break. let's just say no matter how big the car we will be able to fill up every spot available.  you would've thought we were moving to the beach.  here we are packed and just about ready to pull out of the driveway...that's andrew in the very back probably trying to fit my "one more thing" in the back.
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with a stop off in our favorite college town on the way we were able to catch a baseball game.  auburn never disappoints.
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i love me some cam!
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i miss this place so much
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it was off the next day to the beach!  sadly we didn't have the best weather but we made the most of it and had a fabulous time.  a much needed vacation from all the chaos at home.  can't you see how relaxed i am?!  this shows just how crowded the beach was.  there were people everywhere.  we don't even know those people who are literally right next to us.  it was crazy!
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two little peas in a pod.

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and this middle one.  he has been quite the piece of work lately.  being the middle kid aint easy...said every middle child and no mom ever.  
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honestly, this is pretty much how brooks felt the whole trip.  he just wasn't himself and barely could get enough energy to celebrate his birthday.  it wouldn't be a family vacation if one of my kids isn't sick.  bless him.
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once we got back i realized i had scheduled our annual cardiologist check up for the monday morning following spring break...who does that??  and then as if that were not enough we found out carson had his final installment of special olympics that same day.  lucky for me both things were within just a few miles of each other.  after another glowing report from the cardiologist (ekg and echo both looked great...too great for a kid with a heart that was so damaged but i don't dare question how or why) we were off to watch carson and his friends compete.  
heart check up done!  passed with flying colors.  
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this kid...he has the best sense of humor.  he would pretend he needed his walker just to then run away from the poor kid trying to keep up with him.

two second place finishes for this kid, and that is with some bum knees healing from arthritis.  way to go buddy!
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april is also full of baseball for this kid.  he always gives it his best and is still waiting for the day he can crack one to the outfield.  he did get his second game ball for making an amazing catch (with his eyes closed, sandlot style) in the outfield.  can you tell he was super pumped?
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little cutie at the game
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and because i hadn't gotten enough of the beach i went back down with some friends for a weekend of tennis and fun...lots of fun!  it was much needed girl time laughing and hitting the tennis ball around.  
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um, notice neither picture is of us actually playing tennis.  that definitely was secondary to beach and bar time.
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and as april comes to a close i realize that there will be two other bodies home with us all day every day so shelby and i are trying to get our shopping in before two boys invade our space!
at target, one of our favorite spots!
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i think i may of created a tiny mini monster
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and welcome may.  isn't this how you usually drop off your brothers' at school?  girlfriend has got some serious confidence.
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4.11.2017

you are 10...

dear sweet carson,

today you turn ten years old.  double digits.  we've joked about this for about six months now, that i am just not willing to accept it and you'll have to stay nine.  you always laugh and tell me there is no way you are staying nine, it is time to be ten!  you have no idea what a gift these past ten years have been to this world with you in it.  your kind spirit.  your amazing smile.  your incredible sense of humor.  your knack for one liners that only you can deliver.  simply you.  you are our miracle.  our little 1 lb 15 oz fight like hell miracle.  you have let nothing keep you down since the day you were born.  you are our kind hearted, silly, superhero loving, bust a move to your favorite jam, pool party animal, ten year old.  you made us mom and dad and even though there have been some really, really hard times you have made it all so easy to do and oh so worth every single second.  we would do anything just to make you smile because even on the worst of days it can make us feel better.  we are so proud of the kid you have become and cannot wait to see what else you have in store for us because kid, we know it'll be something awesome!  

happy 10th birthday to the most amazing superhero we know.  

crh1

crh2

crh3

crh4

crh5

ten!  {sigh}
crh6


4.06.2017

happy 8 (or 18, i can't tell from these pictures)

dear brooks,

today is your 8th birthday!  8!  you have been asking if you could just tell people you are 8 for the last six months now.  you are always wanting it to be a day, a week, a month into the future.  always moving just ahead of the rest of us.  which makes sense as to why you had to come just early enough that your birthday comes before your older brother's.  you may push the boundaries here at home.  always wanting five more minutes, one more candy bar, one extra hug (it's hard to deny you that), one more turn.  you are a master negotiator which i guess you get from your daddy.  you push us to exhaustion.  but boy are you sweet.  your teachers tell us how you are such a good friend to everyone.  you are always willing to help and are always listening.  i see all these traits in you when you aren't looking here at home too.  you are always aware of your older brother carson and the trials he has.  just the other day when he was getting his first shot at home you were so fearful for him and for your sister you wanted her to come with you upstairs.  i know it was because you couldn't stand to see your brother upset or in pain.  you are sweet all the way down to your soul.  i couldn't ask for a better you. as i was looking at these pictures i took of you it took my breath away.  i can see exactly what you will look like as a young man and it makes me so proud to be your mom.  may you always have your sweet spirit and strong determination.  happy birthday to my baseball loving, play outside all day long, sweet, kind, stubborn, exhausting, lovable, best buddy brooks!  

"may you grow up to be righteous, may you grow up to be true, may you always know the truth, and see the lights surrounding you.  may you always be courageous, may you always be strong, and may you stay, forever young."  

bph3

bph2

bph1

and my favorite part of birthdays...the birthday questionnaire!  i love seeing what has changed each year.  fyi...the only constant is his favorite color.

brooks is 8

3.31.2017

one tough cookie

yesterday carson and i spent the day at egleston (children's healthcare of atlanta) meeting with our new rheumatologist.  yes, we now have our very own arthritis specialist.  we were at the front doors of egleston at 8 am sharp ready to tackle whatever she had to tell us.  and she had a lot.  it really was a lot to take in.  basically, what we thought was some arthritis in his right knee and possibly his right thumb turned out to be arthritis in just about all of his joints.  including his spine.  um, excuse me?  oh, and from looking at his mri and doing some quick ultrasounds of his hands and knees it looks like he has had it for "some time now."  like a lot longer than the 6 weeks we have been dealing with all of this.  annnnnd enter mom guilt.  how in the world could we of not noticed this before hand?  how has this 9 year old boy been dealing with all this pain without so much as uttering a single complaint?  how?  why?  these were all the things that smacked me in the face as i'm listening to this doctor go over our treatment plan.  our short term and long term plans for battling whatever it is that is attacking all of his skinny little joints.

so what is the long and the short of it?  well we have started him on an oral steroid to take care of any immediate pain, which in the last few days has really been his knee and his neck.  we upped his aleve dosage, we added a once a week injection that we administer at home (eek!) for long term maintenance of his immune system attacking his joints, because we are lowering his immune system we have to battle that with some folic acid and because he is now on so much medicine we are treating his stomach with some zantac.  and then once we get back from spring break we will see our cousin kelley so that she can give him some steroid shots in his knees to really knock out the inflammation.  it's all a bit overwhelming but we will master it and if i know carson he'll do it with a smile and probably in a batman costume.  because let's face it.  everything is easier when you are pretending to be batman.

i gave him his first injection tonight...it went as well as you can image it would with a kid who is terrified of shots and needles.  we explained what was happening, why we had to do it and that it would be over with soon (till the next week, but we left that out for now).  as i was in the middle of poking him with the syringe he's yelling at me, "why would you do this to me?  why?"  annnnnnd more mom guilt.  it breaks my heart that this sweet, kind, loving, strong, amazing miracle has to go through all of this.  and to top it all off, this has nothing, absolutely nothing to do with any of his other medical issues.  this is totally random, genetic and the way his cards fell.  an autoimmune disease.  i'm not sure of the plan god has for this kid and the paths he has to take but it better be something amazing.  this is reaching the point of too much.  but, how does he handle it all?  with a smile and a laugh.  and how do andrew and i make the tears go away?  dessert for dinner!  whatever his little heart desired.  and the silver lining to all of this is that just after one day of the oral steroid he was 75% back to his old self.  i watched him walk on his own to the car after school and nearly fell on the ground.  for 6 weeks i have had to literally fully support him as he tried to walk anywhere.  he has been dragging himself around the house not even being able to get to the bathroom on his own.  it was heart breaking and nothing was working, but seeing him today makes me believe that this too shall pass...it may come back but we know how to beat it for now.  but just seeing him be able to actually move around on his own is a miracle in itself.  


on a side note, our school, buford academy, has been beyond accommodating with us these past few weeks.  from the ladies at the front desk, to his teachers and administrators we have been more than blessed.  what an amazing community to be a part of.  i cannot tell you how many times a day i hear someone, be it adult or student, yell out carson's name and it warms my heart to see just how much of a family this system has been.  #itsgreattobeabufordwolf 

3.11.2017

bum knee

so in true carson fashion, he decides to throw us yet another curve ball in the month of march.  if you don't already know, march is not really my favorite month.  i went into preterm labor march 17 and didn't leave the hospital till i had the boys at 26 weeks.  then three years ago in march, carson decided to start having seizures (thank God we got that under control.  seizure free for almost three years now!)  needless to say, i don't like march.  you would never guess that this skinny, quiet, sweet kid could cause so much stress and anxiety!  about a month ago we noticed that his knee was about three times the normal size.  did we notice because he was complaining?  nope.  he was just at his regular PT session when she noticed it.  we thought it was weird and asked if he maybe fell that day.  sure enough, he took a little tumble in PE.  no big deal, he does that all the time.  he said he got back up and kept running.  just like he always does.  he didn't even go see his friends in the clinic for ice.  so, just thinking it was swollen from the fall we went on with our week.  playing, ninja class, school, etc.  till friday morning when the poor thing couldn't walk.  literally, fell straight to the floor every time he took a step.  so off to the orthopedic doctor we went.  with a quick text to our cousin here in atlanta who is an ortho with children's we were off to see one of his colleagues (if i've said it once i've said it a thousand times.  we are beyond lucky to have dave and kelley here at the best children's hospital.  they have been a godsend to use and our medically "needy" kids!  more on that to come!).

so, best we could tell from x-rays and timing of when his knee was swollen the doctor thought he may of popped his knee cap out of place when he fell.  ouch.  he put carson in a knee immobilizer and told us to ice it and keep him on motrin.  good thing for us, we had the whole next week off of school so he could rest it.  bad news for him, we were going to the great wolf lodge for two days and it wasn't going to be easy to get around.  but as usual he makes do with a smile on his face the whole time!

getting our brace
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at the water park...with headphones and his iPad.  this would equal heaven to carson.  he is in his happy place and not being made to ride any water slides.
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after a week of immobilizing his knee we moved to a smaller more manageable brace that would let him walk around much easier.  the thing was, his knee wasn't getting much better.  it still was warm to the touch, still really swollen and at times carson really seemed like he was in pain.  going off of some mother's instinct i called the doctor and asked to take another look at it.  he agreed with me that it should be getting much better by now and definitely shouldn't still be warm to the touch.  so, with that, it was off to the hospital to get some labs and schedule an MRI for as soon as possible which turned out to be 6:30 am two days later.  in the meantime, we were just supposed to keep icing and taking motrin.  

carson hasn't been able to do ninja class in 3 weeks but his awesome coach made sure he still got to stand on the podium and get his medal!
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ninja brooks.  side note...we love this little program at the gymnastics center by our house.  the boys love bouncing around the gym using all the equipment.
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and here we are, post 6:30 am MRI.  we were the first ones there bright and early.  carson did great, i was worried they would have to sedate him but he was able to get it done with just watching a movie.  i was able to sit next to him and he could see me in mirror.  he got a little scared as the machine really got going but pulled through like a champ.  i was so proud of him.  this kid is 44 pounds of pure awesome.  he has had to deal with so much and it kills me to see him in such pain and unable to do all the things he love like chasing his sister around and dancing in between bowls on wii bowling night, and playing on the playground at school.  the other day he was scooting himself down the stairs and i said to him, "hey buddy.  you look so sad.  what's up?"  and he said, "it's just my knee.  it really hurts."  annnnnd heat broken.  to see your kid's spirit broken is by far one of the worst feeling as a parent.  if i could replace his knee with mine i would do it.  just to see him running around again like we worked so hard to get him to be able to do.  no surprise that in this picture he is smiling!
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here is a shot of what his knee looks like.  i promise you we feed this child.  he has the skinniest legs i have ever seen.  but you can tell just how swollen his knee is compared to his other boney little knee.
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so what did all these tests show?  as i was sitting in the MRI room with carson all i could do is pray that it is something manageable, treatable, something that will get better.  of course my mind had wandered to the worst.  what if...was all i played in my head.  it's not a fun game when it's your kid laying there.  i can say for sure that he is ok.  there is nothing life threatening going on.  praise God.  you have no idea the relief i felt.  however, we don't get to walk away without adding a diagnosis to our ever growing list.  the MRI showed lots of inflammation in his joints which points us to juvenile arthritis.  we don't really know much of anything just yet.  thanks to our cousin kelley who is a radiologist with children's, she was able to get us an appointment at the end of the month with an amazing rheumatologist (the waitlist is up to 6 months...yes, months).  this is a whole new arena for us.  i'm not really sure what she will tell us or what the next steps will be.  i just want his knee to be fixed and to see him back to normal and out of pain.  but even with this bum knee look at this sweet face.  we will go to the moon and back to make sure he is happy and healthy!


"a true hero isn't measured by the size of his strength, but by the strength of his heart"
if this is true then this kid is invincible.  
crh