Sunday, August 31, 2014

What The Hell Happened?!?

I remember, as a child, growing up in a small, nothing town in Northeast Louisiana.  It was (and still is) a poor little town with 1 gas station, a cotton gin and fields..lots and lots of fields.  The thing that sticks out most in my mind is that we didn't lock the doors.  I don't even know if we had keys for the doors.  We didn't lock them when we left, we didn't lock them at night, we never locked them.  I'm not sure if it was because we were in small town nowheresville where everyone trusted everyone or  if it was because, in that day, crime was rare.  There was no elevated terror threat, bomb threats weren't a common daily occurrence and people weren't scared to send their kids to school every day.

What happened? Everyone has their own opinion.  Obama ruined the economy and now people are desperate.  Children watch too many violent shows and play violent video games.  God was removed from our country.  Obama wants to bring us to our knees because he hates our county.  We are ruled by a corrupt government that is willing to sell us out for a dollar.

Is there 1 answer to this question? So much has changed so quickly and its seems that things will never be the way they were in the past, the good ole' days.  I believe that our problems are bigger than any 1 person, any violent video game and any group of people that feel our country should fail.

I am patriotic.  I support our soldiers. I proudly display an American flag in my home.  Whether you support war or not, you can't deny the selflessness required in putting your life on the line to protect your country, family and millions of people you will never meet.  It takes a special person to be a soldier, a person that loves their country completely and is willing to do anything necessary to secure and protect it.  That is a hero.  Regardless of if they ever stepped foot on the battle field, in my mind a person that freely volunteers to do this is a hero.

Again, what happened? Our country is weak. Our economy is shot.  People can't afford groceries, gas or utilities.  We have citizens that desperately need help and can't find it.  We have citizens that are fully capable of supporting themselves but instead they chose not to.  They chose to live off of the government. The working, middle class families that NEED help can't get it because they are considered rich in comparison to the poor lower class. I have nothing against the lower class.  I have been broke, totally and completely broke and I don't mean Hillary Clinton broke.  If someone works 40 hours a week for minimum wage and needs help then they should not feel one bit of shame in asking for help.  Maybe if more people were working during the day they wouldn't have the free time required to shoot up schools full of innocent, helpless children.  And since race is a "hot topic" right now I will throw in that this includes people of ALL races.  I have witnessed just as many white people receiving welfare while they are self employed meth makers as I have of every other race. 

Our country is divided.  Instead of being referred to as Americans we refer to people now as white, black, illegal, poor, rich, democrat, republican, liberal and the list goes on and on.  As a nation we are so full of hate toward each other that we can't see that we all have one thing in common..we are Americans.  We were once proud to stand up and say that but that rarely happens now.  Flags are removed because of HOA regulations, citizens join terrorist organizations and we display, for all of the world to see, just how weak and vulnerable we are. 

We are ruled by political correctness.  A Christian can not pray because it may offend an atheist. You can not support traditional marriage because you are then a bigot that hates homosexuals. You can not disagree with the president or you are a racist.  Here is a wild and crazy idea: maybe, just maybe, someone can disagree with you and NOT hate you.  The most discriminated group in our country is Christians.  Everyone preaches tolerance toward their particular group however when it comes to Christian beliefs and moral there is no tolerance.  Christians are described as Bible carrying, extremist, Republican bigots.  Why is it offensive for me to support prayer but not offensive for an atheist to be against it?  Why is it offensive for me to support traditional marriage but not for homosexuals to be in support of gay marriage?  Why am I racist just because I disagree with Obama? 

A lot has changed since I was a child.  We are spoiled.  We feel entitled.  We feel that it is our country's job to support us.  We feel that we are right about everything and any other opinion is stupid and offensive.  Personally,  I miss the way things were.  I miss the feelings of security,  pride in my country and respect.  If we ever want to see those days again we have to stand united.  We have to look past all of the things we disagree on and focus on the things we have in common. We have to peacefully coexist.  We have to put on our big girl panties and stop crying every time someone does something we don't like.  We have to remember that this is OUR lives, country and future.  The government, police and media wont fix our problems.  It is up to us to carve out a new path for our children. One that shows them the united America we all remember. 

Saturday, August 30, 2014

It's Not As Easy As It Looks

The grass always looks greener on the other side of the fence, or in my case on the other side of the field. I notice my neighbors often. They are the sweetest people I have ever met. I have heard her complain about things and even her complaints are nice. I got lucky in the neighbor department. Their kids remind me of the Duggar kids. They are polite and have great manners. Every answer is yes ma'am or no ma'am and I have never once heard them fighting. In 3 years I have never seen her outside yelling like a crazy bat out of hell for her kids to get in the house for the 256 time. Step across the property line into my yard. I'm sure they can't keep count of the number of times I have been outside yelling for kids to get inside, stop arguing, or threatening to beat them with the biggest stick I can find if they don't stop trying to kill each other. I wouldn't be surprised if they can hear me screaming across the house to stop slamming doors and to turn a light off. They probably believe I have followed through on my threats to knock them into next Tuesday when they hear the many screaming meltdowns that little miss Ainsley has daily. Their kids are older. I wonder if that's the secret. Survive the infant/toddler/lower elementary years and your reward is sleep, quiet and energy. I pray that's the secret to success. I'm no where near perfect. I do every thing the parenting manuals say not to. I bribe them to clean their rooms and the playroom. I let them have oatmeal cookies for breakfast. (How is that really any worse than giving them Reese least oatmeal is healthy on some level). I let them watch tv or play video games so I can have a shot at going to pee without an army of short people watching and yelling "you did it" when I flush. I tell the ones that can't tell time that it's bedtime, occasionally, when its really an hour until bed time. I let them eat in front of the tv so that I can eat my food without someone stealing it. (Even though my food is the exact same thing as theirs, mine always seems to taste better to them.) I hide in the closet with my bag of good chocolate so I don't have to share and can enjoy a minute of peace. It's hard being a stay at home mom. You lose touch with everyone. You can't call and chat during nap time because they are at work. Your day is filled with snot, poop and puke. Your most stimulating conversations are with a 2 year old and revolve around who lives in a pineapple under the sea. I have grown to hate Sponge Bob, a real, deep, true hate. If I hear I'm A Goofy Goober one more time... Days revolve around parent drop off and parent pickup. Getting kids to different schools, getting everyone to practice, doctor appointments, dentist visits and orthodontist check ups. Trying to clean a house when you have a tiny tornado following you around and destroying a room at the very moment you finish cleaning it. Washing clothes nonstop because 1 cant wear the same outfit all day, 1 puts their clean clothes back into the hamper instead of in their dresser and 1 is almost a teenager so she tries on 12 outfits a day and in the 5 seconds that she had it on manages to get it completely filthy. Trying to figure out why no one has clean socks and underwear only to find a collection crammed under their bed along with a half eaten apple that is beginning to grow mold and is no longer in it's solid form. At some point being a stay at home mom turns into a mild form of brain damage. It starts off slow. You run to the grocery store with no make up on and before you know it you are in the middle of Walmart in pajamas that you have had on for a week, dirty hair pulled up in a bun and a mystery stain on your shirt that you are scared to attempt to identify as you attempt to buy a week worth of groceries while 1 kids screams constantly, 1 is throwing every sugar filled thing they find in the buggy and 1 is too cool to be seen with you in your hot mess form. By the time your day is finally done you are so exhausted that you pass out the second you sit down. No energy for going out, chatting with friends or just hanging out on the couch. And it all starts over the very next day.. Maybe some people are just born with the patience required to have kids. Maybe after the first kiddo they develop the patience needed to handle more without losing their mind. Maybe they are all just as crazy as I am but do a better job at hiding it. Maybe they have a doctor with a really nice prescription pad. Who knows.. I may be doing this mother thing completely wrong. I may end up at Whitfield before they turn 18. The grass on my side of the field may not be as green and pretty but it's still alive and growing. Every day is a new day to start over. To make an attempt at clearing out the weeds and thorns. I know I have a long way to go but I will get there. The grass on my side of the field will be beautiful, green and full of blooming flowers. I just have to remember each day to water it. I don't mean to sound like my kids drive me nuts, they definitely do, but it's not horrible. You lose yourself and mommy becomes your identity. The once active, fun, adventurous woman has vanished and you are left with the mommy, whose life revolves completely around her short people. It's worth it. It wont be easy and there are days that you will want to run away from home but you will make it through. It helps to remind yourself that when your kids are grown and you are old it will be their turn to take care of you and payback will be so sweet ;)

Review: Ebook - Vegetarian Quick & Easy - Under 15 Minutes

I recently received this vegetarian cook book.  I am not technically a vegetarian but I don't eat much meat, I just don't have a taste for it. I also HATE to cook dinner.  It takes forever, and usually more time that I have to spend doing it.  I was expecting a short book with a few recipes that I would never consider eating.  I was in for a surprise.  This book is packed with hundreds of recipes that are simple, easy and actually very yummy! I have a house full of picky people that rarely agree to try anything new.  You can imagine my shock and surprise when they all actually agreed to eat the meals I made without an argument and actually liked them. Their favorite recipe so far has been the Sweet Potato Thyme Hash.  The kids loved the sweet taste of the sweet potatoes.  I recommend this book to anyone that is eating a vegetarian diet or anyone that is just looking for some fast and healthy dinner recipes.  You will not be disappointed. 

You can purchase the book here:

I received one or more of the products mentioned above for free using Regardless, I only recommend products or services I use personally and believe will be good for my readers.

Friday, August 29, 2014

An Attempt at Parenthood Times 3

With 12 years of being a mother under my belt I still have no clue what I am doing.  The first child is the experiment, you go into this thinking you know everything and quickly realize you know nothing.  You do the best you can to figure it out as you go and make every attempt to get them to their 18th birthday without screwing them up too much.  Kid number 2 shows up and you once again go into this thinking you know everything because you have gone through it all once, only to learn that you still don't know anything.  Kid number 3 arrives and by this point you realize that you still have no clue what you are doing and are just excited that you have managed to keep them all alive this long. 

When you get pregnant you announce it to the world and are greeted with replies about how wonderful it is to be a mother and how there is nothing in the world as amazing.  This is completely true. There is nothing that compares to the feeling you get when you look down at your helpless newborn and they look at you with nothing but love and trust.  They rely on you for everything.  They don't know of the evils of this world and their eyes light up with complete faith and trust in you, an innocent trust that is taken away from them way too soon no matter what you do to shield them from it.

As they get older you realize just how hard this thing called parenthood is.  You will eventually look back and realize that those sleepless nights caused by a newborn wanting a bottle every 2 hours was the easy part and you will wish you could go back. You now stay up worrying because the teenage years have snuck up on you and you are completely unprepared.  You worry about having "the talk" with them. You worry about them getting their licenses and letting them go out on the weekends without you to protect them.  You worry that when they leave they will be in an accident.  The list of worries is never ending.  Most are not rational but mothers never are when it comes to their babies.  Completely ridiculous, random things that will likely never happen pop into your head and open the flood gate for more even more ridiculous reason to worry to rush into your head.

It dawned on me that I only have 5 years left with Cheyanne.  In 5 short years she will be an adult.  There is so much left for her to learn.  I wonder how I will manage to cram teaching her everything she needs to know into 5 years.

 How do you explain to them how to be cautious of the evils of this world while shielding them from it?   What do you do to ensure that you are raising your kids to be good people? How do you prepare them for life? We shield them from the real world for as long as we can and then we send them out into it unprepared for what they will be facing. 

Raising kids is hard.  You will certainly screw up.  They will hate you at some point.  You will sit back many times and wonder what you got yourself in to and if you will make it out alive with any of your sanity. As you watch them grow into young adults you will begin to see yourself in them.  You will notice that all of the lessons you thought they were ignoring actually got through to them and that they will be ok.  But you will still worry...til the day you die you will still worry because no matter how old they get, they will always be your innocent little baby. 

Labor Day

I just realized that Monday is Labor Day.  When I was younger Labor Day meant no school and amazing sales.  When I was older it meant a paid day off from work. Now it means everyone gets to sleep in because there is no work or school.  My oldest was born on Labor Day.  During my entire pregnancy I thought it was awesome that my due date was Labor Day.  Since most people don't go into labor on their actual due date I never really thought she would be born on Labor Day..but she was.  I still tell her that her birthday was a national holiday. 

We have so many  holidays in the US.  Today it dawned on me that I have always looked at Labor Day as a day off without knowing the actual meaning behind it.  I assumed it had something to do with work but other than that I couldn't tell you anything about it.  Just another excuse to get a paid day off and grill some burgers and hot dogs. 

Today I decided to find out the history behind Labor Day and it was pretty interesting. Labor Day is a celebration of the American Labor Movement and is dedicated to the achievements of the country's workers. It is an opportunity for us to pay tribute to the many accomplishments American workers have made to the well being of our county.  On February 21, 1887 Oregon became the first state to make Labor Day a holiday, they stole the idea from Canada. Shout out to Canada for coming up with a reason to have a lazy day.  In 1894 it became a national holiday.  By this time there were already 30 states that celebrated it as a holiday. Labor Day was initially to be celebrated on May 1st.  The Haymarket Affair was on May 4, 1886.  A little history: On May 1 thousands of workers went on strike across the country in support of the 8 hour day becoming standard.  Workers chanted "8 hour day with no cut in pay".  The strike was relatively nonviolent.  When the end of day work bell sounded a crowd of workers rushed to the gates of the McCormick Harvesting Machine Company in Chicago to confront the strikebreakers. This resulted in police actions 2 workers were killed.  Locals immediately called for a rally the following day at the Haymarket Square claiming that police had killed the workers on behalf of business interest and advised workers to join in to seek justice for the killed.  Fliers were distributed that said "Working men arm yourselves and appear in full force!".  The rally began peacefully.  Police arrived at 10:30p.m. telling the workers to disperse.  At this point there was no violence and the rally was very calm.  A home made bomb was thrown into the crowd killing an officer and injuring many. Police and workers began firing on each other.  A total of 7 officers and at least 4 workers were killed.  60 officers were wounded.  President Grover Cleveland was fearful that celebrating Labor Day on May 1 would be an opportunity to commemorate this tragic series of events and the decision was made to move Labor Day to Sept 1st. 

On Monday, when we are all enjoying our day off and relaxing by the pool, lets all take a moment to remember the hard work that it took to make our country what it is today.

Thursday, August 28, 2014

Technology and Kids - What's so bad about it?!

I happened across an article on AOL today discussing the best educational apps for kids.  You can find it here:

Technology and children is a subject that many disagree on.  There are pros and cons in this area.  Some say kids are too attached to electronics, whether it be tablets, phone, gaming console, kids are not socializing and exercising as they were in the past before all of these amazing advances in technology.  I find myself agreeing with this.  My boy kid is totally and completely addicted to his DS and IPhone apps. That's all he wants to do.  My youngest is hooked on watching videos on my iPhone.  She doesn't want to do anything else.  Yes, that's examples of technology gone wrong.  In my defense we live in Mississippi where it is 127 degrees in the shade at 7:00 a.m. so outside play is short and sweet.  I do limit their time on least attempt to.  I will admit I have used it as a babysitter. How else am I going to cook dinner, wash clothes and clean up the pee around the toilet because certain short people cant aim? Don't judge aren't perfect either.

With all of the negative surrounding this it's hard to see the positive.  My son could count to 50, knew all of his colors and shapes (not just basic shapes), say the alphabet and name 20 animals all before he was 2.  Everyday he sat with his little laptop and played games.  Counting, spelling, adding, you name it he had an app or laptop game for that and the results were amazing. He is doing great in school.  We rarely HAVE to study. We do study every night just to instill in him the habit of studying.  He picks up on everything so fast that it shocks me sometimes.  I attribute how well he is doing in school to the many hours he spent playing educational games and the countless hours we spent doing workbook pages and play learning.  Children learn so easily when they are enjoying themselves.  Play learning is fun and they  pick up on so much without realizing they are learning.

My two favorite apps are Balloon School and Baby Sign.  Ainsley loves these apps.  She thinks she is just playing a game so it holds her interest.  Balloon School lets her practice shapes, letters and numbers along with a few fun games.  Baby Sign lets her practice sign language.  It has an option that demonstrates how to make the sign, a flashcard option and a quiz option.  I love apps that let me trick them into learning :) Both of these apps are available for free in the Apple App Store.

Wednesday, August 27, 2014

I Wouldn't Change Her If I Could - The Biggest Lie I Have Ever Heard

Recently we entered the world of Autistic Spectrum Disorders - Pervasive Developmental Disorder Not Otherwise Specified - to be specific.  PDD-NOS, for short, is one of 3 Autistic Spectrum Disorders.  With PDD-NOS difficulties with communication, social behavior and processing changes in routine are common.  It is common for a child with PDD-NOS to play in a different way, such as placing all of their toys in a line instead of really playing with them.  It is often described as a mild form of autism which is not always correct.  Some symptoms may be milder but others can be more severe.  The world of ASD requires work...and lots of it.  You have to make a routine and you have to stick with it.  You have to try to avoid large crowds and loud noise.  You have to make sure that the favorite blankey is always clean.  If not, you meet Mr. Major Meltdown, it's not pleasant.  He brings with him screaming, kicking, punching and bruises.  High tolerance to pain is common with ASD and the children don't always realize they are hurting themselves during a meltdown.  I'm constantly checking for broken bones and bumps on her head. 

I love Ainsley just the way she is..I couldn't love her any more than I do.  I don't wish she was "normal".  What is normal anyway??  I don't think normal exists..we are all screwed up in our own way and that's what makes us interesting.  Learn to embrace the insanity...I'm still working on this one.  I do wish that Ainsley didn't have PDD-NOS or that there was a treatment that could take away all of her symptoms.  I don't wish this so that my life would be easier.  I wish this so HER life will be easier.  She isn't a bad kid.  She is one of the sweetest kids I have ever but she does miss out on things.  I can't take her to loud, crowded places.  I can't get up one morning and decide to go to the park and break her routine.  I can't enroll her in an activity like dance or cheer.  When I hear parents say "I wouldn't change her if I could" my first thought is always that they are full of it. You don't hear that from parents of kids with cancer, heart disease or any other major illness...why is autism any different? I want her to have the joy of doing the things that all other kids her age get to do, I don't think that makes me a bad person. 

August - National Child Support Awarenss Month

Shout out to all of the dead beat dads (and moms) out there, it's National Child Support Awareness Month!

Since Ains was born and I was thrown into the world of rare illnesses, I have tried to do my part to bring awareness to her conditions.  Not many people know what Sotos Syndrome is or Congenital Heart Defects.  I can't help but be a little aggravated when I see the pink ribbons for breast cancer, the ice water challenge for ALS or wear red for heart disease.  Most everyone is aware of these conditions.  The conditions that have the least campaigns are the ones that need more attention, the ones that people have never heard of.  I suppose that everyone knows what breast cancer, ALS and heart disease are because of the awareness campaigns and because they are more common. But..I still get that feeling in my stomach when I hear $40 million was raised for one condition when nothing is being done for so many.  Now don't get me wrong, I'm not against awareness campaigns for more common, known issues, just a little jealous.

So, since the rest of America is covering ALS awareness at the moment here is a shout out the less publicized National Child Support Awareness Month.  I'm sure everyone knows what child support is but I learned some interesting facts.  Only about 50% of single parents have a child support order and only 45% of those parents actually receive the full awarded amount each month..if anything.  I would have never thought it was such a low number.  I know dead beat parents but I always thought they were largely outnumbered by responsible parents that paid support.

Children have no choice in being born.  Whether you are ready to be a parent or not is irrelevant.  If you are adult enough to make a baby, you are adult enough to support it.  And don't think that you have hit the lottery because you got pregnant by someone that's loaded.  Babies aren't lottery tickets.

Step up and do the right thing.  If you make a baby, take care of it.  Times may be hard right now but anything is better than nothing.  Don't let your kids grow up wondering why they never saw or heard from one of their parents. 


Tuesday, August 26, 2014


Being a stay at home mom is amazing.  I get to spend more time with the kids, stay on top of the cleaning and not be rushed to get homework/baths/homework finished in the evening. There is also that one big downside...only one paycheck, which requires the creation of a budget.  A budget that isn't just for pretty or so that you can say yeah, we have a that you actually stick to.  That hasn't been too hard for me since I am cheap and truly hate to spend money.  I hate shopping, probably more than most men hate shopping which is a good thing when you are sticking to a budget.  One of friends (you can find the link to her blog on my page) recently introduced me to the world of Pinchme.  It's this amazing website that you sign up for that sends you free products monthly to test.  How cool is that?!  Free stuff to test for free..did I mention it's free?? So I signed up and ordered my first package today.  There weren't many items left by the time I managed get logged in but I think I still did good.  I got a bottle of Allegra, scented markers, mechanical pencils, face wipes and coffee.  I'm excited for my box to get here so I can try it all out.  I'll be sure to let everyone know how it goes :)

Monday, August 25, 2014

A Little History and Awareness

A little history on Ainsley and spreading a little awareness on a few things.

Ainsley was born at 37 weeks 5 days.  For the most part it was a smooth pregnancy with the exception of contractions starting a few months early.  We controlled that with BP meds and everything seemed to be going great.  I went in to the ER on 11/26 with pains that I thought were contractions.  The next morning I was induced to speed things along and we had an Ainsley.  7lbs 7 oz and 21 inches of bouncing baby girl.  Labor was fast, the fastest of the 3.  She was actually trying to make her appearance before the doctor got there.  When he arrived he realized the cord was around her neck and had a loose knot in it.  He thinks that happened during delivery and didn't cause any issues.  The only problem was her entire face was purple, not from lack of oxygen but because the labor was so fast and she hit my pelvis with such force that she was bruised.  She was still beautiful.  She passed her screenings and her Apgar scores we good.  She was a little jaundice but so were the other 2 so we expected it.  We were discharged the next day and life was grand.  Fast forward to her 3 day check up.  She wasn't eating, at least not enough to make me happy.  I was forcing an ounce in her every 4 hours and she was spitting up what seemed like 2 ounces.  I figured it was GERD since the boy kid had that when he was young and we went to a sensitive formula.  At her appointment they did the usual, weight, height, head circumference, looked her over and listened to her heart.  Then I heard: I hear a murmur, lets go do an echo.  Say what?! All I heard was there is something wrong with her heart.  At that point I was not aware of what a congenital heart defect is and how common they are.  CHD affects 1 in 100 children.  Some are severe and some are not so bad and don't really cause any issues for the children..they are just monitored.  The echo showed Ainsley had a PDA and an ASD.  Her doctor quickly told me that out of all of the heart defects she got the best 2 and not to worry because they could close on their own.  So, we head home for me to go straight to google and research.  Turns out the doctor was right.  Yeah, I needed google and WebMD to verify it for me.  1 week later we go back for a follow up echo to see if the openings had closed, they hadn't.  I mentioned that Ains had been running fever.  A CBC show a very high white count which resulted in hospital stay #1.  Turns out it was just a virus and a few days later we went home.  This was just the beginning. She was my first  true winter baby.  I knew we had to be careful and watch for cold, flu and RSV.  I did what we were suppose to.  No leaving the house before her first immunization, no sick people allowed over, limit the number of people visiting..i thought we would make it through the winter healthy.  Little did I know.  We spent the next several months in and out of the doctor's office and hospital. They kept saying that her heart defects were pulling her immune system down and we just had to make it to around 18-24 months to repair them.  I became the crazy paranoid mommy that calls the doctor's office with every sneeze, after all she was admitted every time I thought she had a cold so what normal mother wouldn't go off the deep end.  Fast forward to May. Ains has a fever and now breaks out in huge red blotches over her entire body every time she has a bottle. We went through latex allergies and allergies to every formula before we decided it wasn't an allergy.  Trying to keep her out of the hospital she got Rocephin shots 3 times that week. I've had many and they hurt like hell.  Her white count was over 20.  That normally means a bacterial infection (that's what we were told).  We did manage to avoid being admitted.  I kept telling them something was wrong and they kept saying it was just due to her heart.  A few weeks later..sick again.  We called and got a work in appointment.  We have 1 pediatrician office.  I'm not sure if it was due to a lack of doctors or organization skills but work in appointment meant coming in at your appointment time and waiting for 3-4 hours to see a doctor.  I gave Ains Motrin and we went to the appointment.  About 4 hours later we were finally called back. As we sat in the room Ains drank a bottle and when she finished she went limp.  She wouldn't respond.  She was just laying in my arms.  I ran into the hall with her and started yelling for a nurse.  One came and took her and yelled for a doctor.  2 came in.  By this time she was blue and shaking.  I was crying.  One called for meds that they didn't have and they had to debate over which meds they had that they could give her.  The other yelled for a crash cart and to call an ambulance.  I'm balling and cant think...all I see is my baby laying there blue.  They hooked her to a pulse ox machine and it registered at 60.  He kept telling me it was ok and that she was getting enough oxygen. The other doctor gave her Valium to stop the seizure.  After 10 minutes it hadn't stopped and they gave her more.  She was just laying there grunting and not responding.  By this time my husband had arrived and a few minutes later the ambulance did.  When we got to the ER her temperature was 104.  After tests it was determined that she had a febrile seizure due to another virus.  She was admitted for observation.  While we were admitted a new doctor made rounds.  He told us we were being discharged and that she just had ANOTHER virus.  He was walking out and I told him that something was wrong.  She didn't roll over or sit up.  She choked every time I tried to give her baby food.  She was always hungry, she was eating 16 ounces every 4 hours. She was always sick...something was wrong and it wasn't all her heart.  He looked her over and said that he believed she had Sotos Syndrome and wanted to send us for genetic testing.  Hello, our new pediatrician.  We moved to his office immediately.  We started physical therapy and test after test after test.  A few months later we had our results..Sotos Syndrome - a very rare genetic condition that no one has ever heard of.  Sotos Syndrome aka cerebral gigantism, is caused by a mutation or deletion of the NSD1 gene.  It causes children to grow at an unbelievable rate, large hands, feet and head size, and many associated conditions like kidney defects, conductive hearing loss,  heart defects and autism spectrum disorders.  So far Ains hasn't had any kidney or hearing issues. We are tested yearly as a preventative measure.  We finally had a name...with a name we knew what we up against and we could kick its ass.  We saw specialist after specialist. It's good that I did my homework on Sotos because the doctors had never heard of it so I spent a lot of time explaining to them what it was.  Ains is currently almost 3.  She is a couple of inches and pounds smaller than her 6 year old brother, she is the size of the average 6 year old.  Recently she was diagnosed with PDD-NOS which is on the autistic spectrum.  She has major meltdowns daily.  That combined with the regular terrible two's can be a challenge.  She has a high tolerance to pain and hurts herself and others during her meltdowns.  She is always covered in bruises..I am too.  We are working on regulating her medication so that hopefully we can get the meltdowns under control.  She is miserable during them..she doesn't process changes in her routine very well and does not like loud noises or crowds.  We deal with people's judgmental looks and comments often.  People love to tell me that if I don't get her under control now that I never will or that if I spank her she will stop throwing "fits" when she doesn't get her way.  Most people know what Autism is but they associate it with children that have severe disabilities that you can see...they don't understand that a child that appears to be healthy on the outside can have this.  They are quick to judge me as a bad parent or a parent that "spoils" their kids therefore creating an attitude in her that she gets what she wants when she falls on the floor kicking and screaming.  I've learned a lot in the past 3 years.  I've learned about CHD's, Sotos Syndrome and Autism.  I've learned you really cant judge a book by its cover.  I've learned what true fear and worry is.  I've learned that as unfair as it is, young children can be taken away from you by horrible illnesses/diseases in the blink of an eye.  I've learned that no matter how much you love your doctor that they can miss things and if they aren't listening to you that you need to go somewhere else. I've learned that life isn't always easy or fun but it's worth it.  I've learned that when you have a sick child that you are never truly at ease and the worry of what might happen never goes away.  I've learned to be more patient.  I've learned that finding groups of other parents going through exactly what you are going through is a life saver.  I've learned to listen to advise from other parents and I've learned that its up to parents to bring awareness to the conditions that their children have.  Awareness results in funding which results in research which results in more treatments.  If more people were aware of Sotos Syndrome it may not have taken a year for us to find out what was going on with Ainsley. 

Sunday, August 24, 2014

Meet The Crew

Time for the introductions!

Melissa. The queen bee, ruler of the roost, rule making mommy.

 Brandon.  Second in command and money maker at  the crazy farm ;)
Cheyanne.  The oldest, clumsiest, almost teenager one.
Chris. The middle one whose room always looks like a disaster area, doesn't understand what quiet times means and is excited to go to school every single day.
Ainsley.  The princess baby who has had a rough 2 years but is doing amazing right now.


Easy Like Sunday Morning

The person that wrote that is clueless..or childless.  Ever try to get 3 kids and a husband up and dressed for church on Sunday morning after they have stayed up until 2 a.m. watching Sponge Bob and the latest zombies eating humans low budget horror film? It's not easy.  Between the complete and total exhaustion and uncooperative short people we have not managed to make it to church in several months.  Feeling major guilt about that.  I already know exactly how it will go.  I will manage to drag everyone out of be an hour late, run through the house yelling put on clothes and throw a poptart at each of them as we walk out the door.  Once we get there 1 will be mad, 1 will asked 546 times how long before we can leave and 1 will have a major meltdown beginning when she sees the nursery door and ending when we walk in our front door.  Routines are amazing...I LOVED them until the youngest was born.  Now, I realize they are a required part of daily life, the only shot I have at possibly going a few hours without a screaming, on the floor kicking and punching meltdown.  I'm bruised, she is bruised.  I'm tired, she is exhausted.  There are days that I feel like Super Woman and days I want to go hide in the closet so no one can find me.  Thankfully there aren't many of those hiding days.  Sunday morning, far from easy.