Welcome!

This blog was inspired by 31 for 21 & is about my wonderful family.

"As a mother, my job is to take care of what is possible & trust God with the impossible." ~Ruth Bell Graham

"Never look down on someone, unless you're helping them up!"

Wednesday, October 31, 2012

Day 31

     It's the last day of Down Syndrome Awareness Month.  However, every day is an awareness day in our lives.  We try to educate people every day of the year.  That's the only way we can change this cruel world, by spreading awareness.

     I wanted to end this 31 for 21 challenge by speaking from my heart.  All I can speak truthfully about is my journey thus far & hope it helps someone.  Perhaps I can encourage someone....we all need a little of that every now & then!  :)

     When I found out my son had Down syndrome, I was crushed.  I felt like I was being punished by God.  Boy, was I wrong!  God wasn't punishing me at all, He was actually blessing me!  See, I would have never, in a million years, wanted a child with Down syndrome...that is until I was given one.  My journey as Troy's mother has taught me so much, things I could've never learned without having him as my son.  I can attest to the saying "I never knew I wanted a child with Down syndrome until I was given one!"

     Having Troy doesn't feel like a burden, like some people may think.  It's more like feeling as if God kind of trusts me more because He gave me a child with special needs.  Raising a child with special needs is challenging.  You have to learn patience.  A LOT of patience, which is NOT my strong suit.  I had to learn to wait on him to hit his milestones a little later than 'typical' children.  But, that just means that I get to watch him grow up a little slower, which is nice. 

     He is also a very picky eater.  Not sure if that is related to his something extra, or  not.  But I do know that my 6 month old daughter is more interested in food than he is!  He won't try new foods, foods I think he'd love if he'd only try it.  Again, patience comes in to play.  He only wants to eat what he wants to & there's no changing his mind.  However, he is growing well, so I shouldn't be concerned.  He went to his GI doctor last week.  His doctor was amazed that he was thriving so well.  He couldn't (NEITHER COULD WE) believe that Troy weighs almost 32 lbs! 

     We work on things everyday.  I am anxious to get him to learn the alphabet & to count, so that's the first thing we work on.  He will say some of the abc's, but not all of them together.  I've learned that he's a big visual learner, so we do flash cards everyday.  I have some with the letter on one side & an example on the other side.  He can look at them & tell me what each & every one of them is.  Sometimes he confuses E for F & M for W, but once I say, "no, that's not it" he remembers.  He can count to 10 with help.  He does great, except for occasionally forgetting the 1 & 2.  So, again...patience.

     Troy is also very stubborn.  He wants what he wants when he wants it.  My husband tells me he's just impatient, like me.  But I'm not that impatient.  If he's thirsty & I'm feeding his sister, he's not going to wait until she's finished, he wants his milk right then.  That's why I've learned to go ahead & fix his cup while I'm waiting on her food to warm...then I don't have to make him angry.  He also loves Sesame Street, Calliou, & Daniel Tiger's Neighborhood.  He knows what time during the day that they come on & he will tell you, right quick like, what we should be watching.  He gets his way every week day, but on the weekends, the line up is not the same on PBS.  But he doesn't understand that.   Don't get me wrong, I love these shows.  They have taught him a LOT!  However, I do appreciate watching some age appropriate tv shows myself & he's not for that one bit.  Yep, you guessed it...PATIENCE!

     I've told you some of the reasons why I have to be patient, but I haven't told you some positive things about him.  He is so handsome & loving.  So forgiving.  He's smart, clever, determined, dedicated, hard working, fun, energetic (which is tough for this mama, at times), sweet, kind, polite, loveable, caring, tender hearted, generous, & just plain wonderful.  He can brighten my day just by smiling at me.  At times, just hearing him say, "Love you, Mama" brings tears to my eyes. 

     This one little boy has humbled me so much, has shown me the meaning of unconditional love, & is teaching me more patience than I ever imagined having.  It's like he took a meat tenderizer to this hardened heart.  He's just so awesome!  I just wish the world could feel for 5 minutes what I feel every second of every day by simply being his mother.  If everyone could experience his pureness, his genuineness, I think the world would be a better place!

     I hope you enjoyed reading my blog & my facebook posts this month.  Enjoy what's left of today & be safe tonight if you're trick or treating.  HAPPY DOWN SYNDROME AWARENESS MONTH & HAPPY HALLOWEEN!

Tuesday, October 30, 2012

Day 30

     With just one day left of Down Syndrome Awareness Month, I am reflecting a little.  I think back to the day those words were said to me, "Your baby has a 1-2% of having Down syndrome."  I went home to research Down syndrome on the internet.  As I read each & every statistic on each website available to me, I felt so empty...so scared.

     As I read these statistics, I am overwhelmed!

Characteristics Percentage[21] Characteristics Percentage[21]
mental retardation 99.8% small teeth 60%
stunted growth 100% flattened nose 60%
atypical fingerprints 90% clinodactyly 52%
separation of the abdominal muscles 80% umbilical hernia 51%
flexible ligaments 80% short neck 50%
hypotonia 80% shortened hands 50%
brachycephaly 75% congenital heart disease 45%
smaller genitalia 75% single transverse palmar crease 45%
eyelid crease 75% Macroglossia (larger tongue) 43%
shortened extremities 70% epicanthal fold 42%
oval palate 69% Strabismus 40%
low-set and rounded ear 60% Brushfield spots (iris) 35%

     The first thing I see is mental retardation...99.8%.  That's nearly 100%!  Do you know that people make fun of people who are delayed?!  Tears fill my eyes at this statistic.  My baby will be mentally retarded.

     Congenital heart disease...45%?  That's nearly half!  How in the world can I watch my baby endure open heart surgery to correct this?  I am not this strong.

     Some people with Down syndrome can not speak, they use sign language to communicate.  Wait, my child may not speak?  Most children with Down syndrome walk around age 5.  FIVE?  Some children have to be tube fed.  Tube fed?  How in the world can I handle that? I could handle all of the physical features.  So what if he has short hands or almond shaped eyes or atypical fingerprints.  Does that really matter?  It's the life threatening things that hurt me.  The increased chance of leukemia, the heart defects...those things are what have me worried so much.

     I continued to learn all I could about Down syndrome.  After all, this is why I chose to have the CVS test, so that I could be prepared.  So that when my baby was born, I'd be over the grieving process & I'd be prepared for what was to come.

     We went in for an ultrasound to check for any abnormalities in my son.  I am a pro at reading CT scans, MRIs, & generally ultrasounds, but I've never read one of the heart.  So when the ultrasound tech was hovering over the heart, I couldn't tell a thing.  But I knew that if she was concentrating there, that he had a heart defect.  The doctor came in & informed us that our son had a common CHD (congenital heart defect) found in babies with Down syndrome, complete av canal defect.  He told us that he'd require surgery before 6 months of age, but that one surgery should repair the defect.  He referred me to a Pediatric Cardiologist.

     I researched my son's CHD.  It was a complex condition & I was worried, but left it at the feet of Jesus.  I knew He'd handle this, after all, He did allow my son to make it this far.


     At 39 1/2 weeks, my OB decided to induce my labor.  He said it was the best thing for my son.  I was so excited.  So ready to meet my little miracle son!

     On January 13, 2009, at 2:16 p.m., my son was born!  He cried immediately, which was music to my ears (we were told that since the ultrasound equipment can't detect everything in utero, that he may not cry & need surgery immediately)!  They weighed & measured him, cleaned him up, & the NICU team assessed him.  They let me hold him briefly.  He was so beautiful.  Down syndrome?  Heart defect?  Mental retardation?  Who cares?!  He's perfect to me & my family! 

     My husband proudly held him & allowed our oldest son hold him before they took him to the NICU.  My son was so proud to have a little brother....his face was covered in tears of pure joy!  At that moment, I knew God gave this special little boy to us for a reason.  It wasn't to burden us or chastise us for some reason.  He was sent here to help us, to teach us.

     Little Troy had open heart surgery one day shy of turning 5 months.  He did so well!  He had a few complications, but it went well.

     Two months later, he began showing signs that something wasn't right. To make a long story short, he had infective endocarditis.  We were told that he would not survive.

     But God had other plans.  Troy's little heart healed itself!  He has tricuspid stenosis due to all of the scar tissue around that valve, but he's doing remarkably well.  He had to have an emergency tricuspid valvuloplasty at 23 months.  So far, he's doing very well.  He still takes Lasix daily & we have to closely watch for signs that his heart is failing again.  His cardiologist thinks he'll have to have that valve replaced, but we're waiting until he has to have it done (once he has the artificial valve, it has to be replaced every 2 years until he stops growing, then every 10 years).

     I've had people tell me that I'm remarkably strong.  And to that I simply say, "thank you.  I give all the glory to God."  I know that I'm strong.  With all that I've endured, you have to be. And who has been with me every step of the way?  God!  He has been there to pick me up when I couldn't stand.  To wipe my eyes when I couldn't see.  To be my voice when I couldn't speak.  To give me strength to carry on.  To hold my hand when I felt all alone.

     I've had people say to me that they don't know how I do it.  To that I reply, "It's simple, with God's guidance."  He brought me to it, He'll bring me through it.  I love my children.  I love all three of them equally & I will do anything I can to show them that.  When you truly love someone, ANYTHING is possible!

     Some people see that I am the mother of a teenage son, a toddler with special needs, & a baby girl & they don't know why I "started over."  Well, that wasn't my plan.  That was God's plan.  We tried to have another baby when oldest was 2.  After losing 6 babies, we gave up.  We had all of the tests to determine why our babies were dying.  We were told that I'd have to have invitro in order to conceive again, which was something we couldn't afford.  But, see, God had plan.

     God knew that Troy would change our lives.  He knew that Troy wouldn't be the burden that some people perceive him to be.  He knew that Troy would enrich our lives & teach us lessons only he could.  And I truly believe that our love for Troy, our faith in Him, & our spiritual growth impressed God so much that He blessed us with our daughter just 3 years later.

     I look at my son & I see perfection!  He has overcame so many obstacles in his lifetime.  But nothing has defeated his spirit & I hope nothing or NO ONE will.  He is determined, dedicated, loving, & smart.  He works very hard every day to cross over these bumps in his path, but he always gets over them!

     He walked at 26 1/2 months, despite having 3 heart surgeries before the age of 2.  He is a picky eater, but he's only been tube fed once (when his lungs collapsed after OHS #1).  He talks.  He doesn't say some words very clearly, so sometimes we have to keep asking him what he's saying, but we always get it.  He even speaks in sentences now.  And the big whammy that brought me to tears just years ago, mental retardation.  Yes, he's deemed by medical professionals as mentally retarded.  But, retarded DOES NOT mean stupid.  It means that he's slower to learn some things.  And I emphasize SOME things.  He's actually a brilliant little boy.  Let me give you an example.  Last night, I put my daughter to bed & came back in the living room to spend the 30 minutes left before bedtime with Troy.  He had found some mini license plates, one had my name (KELLI) printed on it & the other one had my husband's name (MACK) on it.  He handed me one & I said, "Troy, what does this say?"  I'm expecting him to point to the letters & tell me what they are.  But what he said floored me!  He looked at it & said "Mama!"  I showed him the other one & asked him the same question.  He looked at it & said "Daddy!"  My husband was in the kitchen washing dishes, so I asked him if he taught that to him while I was getting our daughter to sleep.  He said, "NO!  I didn't!"  I kept on holding up each one, asking him over & over & he kept saying "Mama" when I held up mine & "Daddy" when I held up his.  Now you tell me he's dumb.  He's never, ever been taught that...ever!  :)  I work with him every day.  He works very hard & it's paying off.  How I wish I would've known all of this when I was doing my research before he was born. 


     These are the things that people who receive a prenatal diagnosis or have a new baby with Down syndrome NEED to hear, not the 'possibilities" or the 'statistics' found on websites.  Parents do need to know what to expect, I do agree with that.  However, to be able to connect with someone who lives this life, the new life they will have, would help so many parents to truly understand that this diagnosis is NOT the end of the world.  This is not the end of their dream of a perfect child.  Their child is perfect, not only in their eyes, but in the eyes of God.  After all, isn't that all that matters?


This is my Troy.  I told you he was perfect!  So perfect that he won a Cute Kid Contest.  So perfect that he's going to be in an Atlanta magazine...he is one of four finalists that are competing to be on the cover of that magazine.  There is pure awesomeness stored in that extra chromosome!  Yes, he has Down syndrome, but Down syndrome doesn't have him!




























Saturday, October 27, 2012

Day 27

     There are 3 days left in this month.  Then Down Syndrome Awareness Month is officially over.  But not in my house.  We try to spread awareness 24/7, 365 or 366 days.  It's my job as the mother of a child with Down syndrome to help educate E V E R Y O N E!  Just because the days in October end, doesn't mean my job ends...it will never end.

     I hope that I have helped to educate those who aren't familiar with Down syndrome by my facebook posts or through this blog.  If I helped one person, all of my time was worth it.  If I planted one seed, I reached my goal!

     If you have any questions for me about Down syndrome, my son, or our journey, please ask away.  I'll answer any question to the best of my ability.  You can post it on here or on facebook. 

Friday, October 26, 2012

Day 26

     One year ago today, a dear Princess went in to have her broken heart repaired.  I cried most of the day, praying to God to heal her little heart.  Today, I've cried on & off all day, praying for God to heal her mommies' hearts.  RIP Iris Catherine Palma...in the presence of the Lord, but forever in our hearts. ♥

     My journey through life has taught me many things.  One thing that I have learned is to never take any one for granted.  Always tell those you love that you love them, because they may not draw their next breath...or you may not draw yours.

     In my house, our lives are far from perfect.  I am a typical woman...I nag, complain, gripe...because I am human.  I am trying, with the help of my Lord & Savior, to be a better person.

     But, I know that I am blessed.  I know that God is showing favor to us for admitting our shortcomings & trying our best to be the people He wants us to be.  We are far from there.  Far from there because we are human.  We can't be perfect, no matter how we try.  That's the glory of a forgiving God.  He forgives us when we don't deserve it.

     God has given me a near perfect mate.  My husband is the best man I know.  A man that I hope my boys grow up to emulate.  He loves me, even though I don't deserve his love.  He gets up every day to go work to provide for our family & he works hard for us.  He never goes out partying or to bars...never has a 'guys night'...NEVER!  He has sacrificed so much for me & our children.  And he loves us like crazy.  I could not imagine a better man for myself & our children.

     God has given me 3 impeccable children.  Chancey, he's 15 & a sophomore in high school.  He is very intelligent & has the best heart I've ever seen in a young man his age (other than his Daddy).  As a matter of fact, this is what one of my cousins commented on a status of mine on facebook:  "He is a wonderful person and an outstanding example of a truly good heart. He will make some lucky girl very happy one day, and if he is this good of a brother just imagine what kind of a Daddy he will be! The world could use many more Chanceys!"  So, see, I'm not biased!  :)  He is a typical teenager in some ways.  He does complain sometimes when we ask him to do certain things.  We have to remind him (A LOT) sometimes to do some things.  But I can tell you that he loves his family with his entire soul.  He really is going to make one lady very happy one day.
   
     Troy is 3 1/2...well 3 3/4, he'll be 4 in January.  He is also very intelligent & has a beautiful heart.  If he loves you, he LOVES you!  You can break his little heart by spanking him or telling him no, then a few minutes later, he's over it.  He doesn't hold it against you, he doesn't hold a grudge, PERIOD!  The world would be a much better place if we could all hold that quality.  He has taught our entire family so many things so far.  He is very determined & dedicated.  He works very hard to accomplish what he's trying to accomplish & he always succeeds!  I look forward to watching him grow into a young man.  

     God knew that I have always wanted a daughter.  He knew that I love my boys with my entire heart & soul, but I wanted a little girl, too.  In fact, I really want 4 kids...but I doubt that's going to happen, but who knows!  Anyhow, my Mackenna is 6 months old.  She is the happiest baby I have ever seen.  She loves us all so much & gets so excited when we interact with her, which is A LOT!  She's so beautiful & is already letting her intelligence shine!  I just hope & pray that she doesn't inherit some of my bad traits. 

     My point is this.  If God has blessed you, thank Him.  Then tell those you love that you do love them.  It doesn't matter if you just spoke with them, tell them.  It doesn't matter if you haven't spoken with them in days or weeks or even years, tell them.  God wants us to be happy.  He wants us to love & be loved.  Tomorrow is never promised to any of us.  Just think of how you'll feel if someone you love passes away & you don't have the chance to tell them you love them!  You think swallowing you pride will hurt more than that?  If you've hurt someone, apologize.  You can't be forgiven until you ask for forgiveness!!  If someone apologizes, accept it.  Move on.  Love.  Be happy!
    
    {I know that I'm supposed to blog about Down syndrome awareness this month, but I had to write this...it was just laid upon my heart.}

Thursday, October 25, 2012

Day 25

     Troy has to go to his Gastroenterologist this afternoon.  Which means a trip to Atlanta.  But, we love his GI doctor so much...he's the best!

     So today, I wanted to blog about Troy's medical issues.  You know, some people see that Troy's heart issue is devastating enough in itself.  And it really is.  It hurts my soul to know what all he's endured during his short little life. 

     But I look at him & think that things could be much worse.  At least his heart condition is treatable, manageable.  So is his stomach issue.  Just simple reflux, managed with medication. 

     He also has a thyroid imbalance.  It was noticed in January, during his routine blood work.  He sees Pediatric Endocrinologist in Atlanta, who is monitoring it.  Right now, he's not on any medication & some thyroid issues have been ruled out.  So we go back in January to have another test to check his thyroid function to determine the next step, if any.

     He also has some crossing of his left eye...better known as lazy eye.  We are patching his right eye to force him to use his left one, which should strengthen it.  So far, it's helping tremendously.

     He also has hypersensitive hearing.  He can't stand loud noises at all.  He does well at church with the singing & preaching, but he can not stand screaming or babies crying.  He doesn't tolerate hammering or banging very well, either.  We just try to avoid these situations & if we have to go somewhere that we know will be loud, we try to help him cope.  So far, so good.

     See, it's really not that bad.  Yes, he has multiple problems for which we see several specialists for.  Which also means that most of my husband's vacation time is used to take us to & from these appointments.  But, we wouldn't have it any other way!  I'd rather spend all day, every day shuffling between appointments than not to have my little boy!  I love him & no diagnosis is going to change that!

Wednesday, October 24, 2012

Day 24

     I was having a bad morning.  Well, not a bad morning, just having bad things happen.  A lot of bad things, but I was trying not to let them get to me.  I did the only thing I knew to do to turn things around...I prayed.  About 10 minutes later, my phone rang.  It was the publisher of Atlanta Parent magazine.  She told me that my son is a finalist (along with 3 other children) for the cover of their magazine!  He is to go to a photo shoot on Monday afternoon!  His picture & a write up about him will be featured in their November issue.  If he wins, he'll be on the cover of that issue, too!  Talk about God intervening! 

     I know this isn't a nationwide publication, but it's something.  Something that can get a positive word out about Down syndrome.  I'm so happy for him!  What an awesome opportunity this is!  Who knows what doors this will open?!  Who knows how many hearts he can change by doing this?!  What a fantastic way to wrap up Down Syndrome Awareness Month!!!

     So be on the lookout for my superstar! 







Tuesday, October 23, 2012

Day 23

The "R" word:  When you see approximately 8 medical professionals on a regular basis,& once in a while they throw in "that word" to describe your child's issue, or you see it written in a file, a little piece of you just hurts.  BUT, in a line at the grocery store, you hear kids giggle, & you hear that word, you cry a little. Hoping your child didn't hear that it is a "funny" word or didn't see them point.  You see a parent, that instead of telling their child that it is not right to use ugly words, or to hurt a child, they giggle with them. "Oh, they didn't mean it like that...they weren't talking about your kid...they were just making a joke, it doesn't hurt anyone."  We all know that WORDS HURT!!!  Children die everyday because they are being bullied!  It's usually just words.  However, the pain builds.  Children all over the word cry themselves to sleep at night because you think things are funny.  Children die because you don't teach humanity & kindness to your children.  Every time you condone such actions, you put another nail in a child's coffin.  It is no different than any other ugly word!  PLEASE, THINK BEFORE YOU SPEAK!  Set an example for your children.  Teach your children respect & kindness...make them better than we are...let them LIVE!  ~Thank you, Kimberly Dawn Allen-Strong for posting this on Facebook!   






Monday, October 22, 2012

Day 22

     We've had a rough few days lately.  With my illness flaring up & Mackenna's teething, it has been rough on us all.  But thank the Lord for giving me the most wonderful, loving husband, spectacular children, & a fabulous church family. 

     So let the awareness spreading begin!

     You know, a lot of parents do not like for people to ask "is your child high functioning?"  Many people are insulted by this question.  Yes, I am one of them.  High-functioning refers to someone that is performing above what would be expected of them.  Thus the term is actually a comparative term & is  rather subjective (or based on someone's opinion).  It can also be a somewhat simplistic term in that it tends to have an "all or none" connotation - that is a person is either high-functioning or not.  In reality, most people (with & without Down syndrome) have a mix of skills and abilities where they may be high functioning in certain areas & not in others.  For example, I can spell rather well, it just comes naturally to me.  But I absolutely do horribly in algebra (or anything other than basic math)!  Does that make me a high functioning speller & a low functioning mathematician?

     People should not put these types of labels on any one.  It's just wrong.  Whether they have Down syndrome, Autism, or no challenges, people are people...PERIOD.  Labels are wrong & insensitive.  Sure, my son is very verbal.  But to say he's high functioning is wrong.  I work with him from sun up to sun down every day, he works very hard to say the words he says.  Yes, he walked at 26 months after undergoing 3 life saving heart surgeries.  That's not high functioning, that's pure determination & hard work.  Troy is very smart.  But that doesn't make him high functioning, that makes him a dedicated, determined, hard working boy.

Day 21

     I have often wondered if people with Down syndrome are allowed to vote.  I mean, why wouldn't they be able to?  I know that my son can decide what he likes & what he doesn't, therefore he should be able to decide who he was to run our government!  So, I did a little research.  Yes...HE CAN VOTE! 

     I also wonder if he'll be able to drive.  So, again, I began to research.  As long as he can pass a test, HE CAN DRIVE!  Not that I'm ready for that yet, just nice to know that he has that option!

  

Day 20

    Today's entry will be a little history lesson.  :)

     Down syndrome is named after John Langdon Down.  In   1866, he published an essay in England in which he described a set of children with common features who were distinct from other children with mental retardation. Down was the superintendent of an asylum for children with mental retardation in Surrey, England when he made the first distinction between children (later to be found to have hypothyroidism) and what he referred to as "Mongoloids."

Down based this unfortunate name on his notion that these children looked like people from Mongolia, who were thought then to have an arrested development.  This ethnic insult came under fire in the early 1960s from Asian genetic researchers, and the term was dropped from scientific use.  Instead, the condition became called "Down's syndrome."  In the 1970s, an American revision of scientific terms changed it simply to "Down syndrome," while it still is called "Down's syndrome" in the UK and some places in Europe.  Ironically, Down's grandson (who was born 9 years after his death) had Down syndrome.  


In the first part of the twentieth century, there was much speculation of the cause of Down syndrome. The first people to speculate that it might be due to chromosomal abnormalities were Waardenburg and Bleyer in the 1930s. But it wasn't until 1959 that Jerome Lejeune and Patricia Jacobs, working independently, first determined the cause to be trisomy (triplication) of the 21st chromosome. Cases of Down syndrome due to translocation and mosaicism (see definitions of these below) were described over the next three years.


    

Friday, October 19, 2012

Day 19

     Did you know that there is pure awesomeness stored in my son's extra chromosome?  Yes, it's a proven fact.  Need proof?  Keep on reading.  :)
   
     I'm trying to teach Troy that Chancey is his brother & Mackenna is his sister.  I thought he had no idea what I was telling him because he usually tunes me out when I'm talking about it to him.  Boy, was I wrong!  Yesterday, I decided to test him a little.  I said, "Troy, take this toy to your sister."  He took it from me, walked right up to her exersaucer, & said "toy, Nena," as he gave the toy to her.  I was amazed!  Then I thought "well, if he knows that, then he'll know who is brother is."  I said, "Troy, who is your brother?"  He looks at me & says "Chancey."  :')  Oh, the pride I felt!  I looked at my husband as he was washing the dishes.  I asked him if he heard that.  He said, "yes...of course he knows that.  He's super smart!"  Yep, indeed he is!

     Most brothers & sisters fight like cats & dogs.  Not my children.  I'm sure it will change as Troy & Mackenna turn older, but right now, their bonds are so wonderful.  I expected Chancey & Troy to love each other, but not to have the inseparable bond that they share.  See, Chancey will be 16 in March & Troy will be 4 in January.  They are so far apart in age.  You'd think that Chancey would be annoyed at Troy coming into his room daily to play.  You'd think that he wouldn't want anything to do with his little brother, he's a teenager, they have their own minds (LOL).  But, that's not the case.  Not the case at all!  Chancey loves playing with Troy & vice versa.  I love it!  Troy tries to play with Mackenna.  She's a little too small to play right now, but she just loves him.  He'll do everything in his power to make her laugh.  He shares with her & she tries so hard to talk to him  It's so sweet.

     Troy also knows that his Daddy calls me everyday at lunch.  He knows when the phone rings that it's his Daddy.  He will come sit beside me on the loveseat & say "more, Daddy, please."  They'll talk for a bit, & his day is set.  :)  He also knows that his Granny or Grandpa call everyday.  He knows who it is when the phone rings.  Sometimes he won't hush until he talks to one or both of them, sometimes he's just comforted in knowing that they called.  Isn't that amazing?

    One more example & I'll hush.  We're working hard on the alphabet.  I have bought him some simple flash cards that have the letter on one side & an example on the other side.  Like A has Aa on one side & a picture of an apple on the other side & up under the picture it says apple.  Not only does he know almost every letter (he misses E occasionally & M most of the time...because he thinks M is a W until I say no..then he realizes it's M), but he also knows what the picture is & verbalizes that too.  For example, for A he will look at the card & say "A for apple."  :)  He does that for every letter.  Now, if I can only get him to say the alphabet...he gets bored with that after H (LOL)!

    See, I told you that pure  A W E S O M E N E S S  is stored in his extra chromosome!  I am so proud of Troy.  I am so proud of Chancey & Mackenna, too!

    

Thursday, October 18, 2012

Day 18

     I thought I'd write about something my son did this morning for today's entry.
     My son LOVES Sesame Street.  He has to watch it twice a day (sometimes more) & yes, I allow it.  He doesn't watch senseless cartoons or other programs...just PBS (mainly Sesame Street & Caillou...occasionally he'll watch Mickey Mouse Clubhouse on Disney Junior), & he has learned so much from these programs.  It is helping me teach him his colors, ABCs, how to count, etc.
     I was busy editing some pictures this morning while he was watching Sesame Street & my daughter was napping.  My computer (& Troy's little couch) is right beside the TV so I could see & hear everything that was being said.  I noticed that this segment was Murray asking what the noise on the street was.  I could hear a penguin making noise & a hopping sound.  All of the sudden, I hear Troy say "Penguin, stick."  {if you are familiar with this segment, you know that they play the sound, but do not show what it actually is until a few moments later, so the children can make a guess} I looked up after he said that, to see what the noise actually was, & guess what it was?  A penguin on a pogo stick! I looked down & said, "good job, Troy."  He smiled & said "Penguin says waa waa."  You know me, my heart filled with pride & my eyes filled with tears.  That's it, son!  Show the world that people with Down syndrome are intelligent...despite what some may think!  Tear off those labels & make your own! 

Day 17

It has been one AWFUL day.  But I am constantly reminded that it could be worse, so I count my blessings regardless.  Therefore, I thought that this passage might encourage someone who is also having a horrible day.
"How often has it happened- an acquaintance hears your story or sees your child & says, "I'm not as strong as you. I could never deal with all the things you deal with." And you shake your head modestly, and brush it off, and maybe even feel a little condescended. But you know what? They're right. You are strong. You are facing things that the average parent doesn't even want to imagine, and you are handling them. Whether you were strong to begin with or had strength thrust upon you by necessity, you are one strong parent, one strong person. Your family needs that strength, your children thrive on it. You may wish you never had to be so strong, but appreciate that strength now. It makes you special; capable. A force to be reckoned with."

Day 16

On October 16, 1999, I married the love of my life.  That was the beginning of my journey as a Forrester.  Little did I know that marrying this wonderful man would take me on such a spectacular journey.  I also had no idea that our journey would take us on a glorious trip to Holland.  (In case you're confused, here's what I mean...)

WELCOME TO HOLLAND by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Day 15

     Did you know that most children with Down syndrome teethe later?  Did you know that some children with Down syndrome are actually missing some of their teeth & their teeth come in a random order?  Did you know that fontanelles close slower on children with Down syndrome?  Why, you may ask.  Well, their bones grow slower that people without Down syndrome.  My son's first tooth appeared at 11 1/2 months.  He cut his molars before his eye teeth.  He is not missing any teeth, though.  :)  ALSO...tooth decay is a higher concern for people with Down syndrome because they have increased saliva in their mouths. 

Day 14

I've been SO busy...so today I'm playing catch up on my blogging.  :)

     Today's entry is going to be about my little boy.  That qualifies, right?  ;)
     We were eating at Steak And Shake a few weeks ago.  Troy was begging for my milkshake (hallelujah) & he noticed the gentleman & his wife behind us.  The gentleman looked like Santa Claus.  Troy kept turning around & saying "Santa!"  I tried to keep him from interrupting the couple's dinner, but I was unsuccessful.  I apologized to them & told them that my son thinks he's Santa Claus.  The lady told me that he "does that."  He reached in his pocket & gave Troy a little coin that said "I was caught being good!"  He proceeded to carry on a conversation with my son.  It just warmed my heart to know that there are still such kind hearted people in this world....that & the fact that he remembered who Santa is!  :) 

Saturday, October 13, 2012

Day 13

    Every day of my life, I feel so awful for grieving for my son when I received the prenatal diagnosis of Down syndrome & a CHD (congenital heart defect).  I think back at how I was crying & pleading with God for my child not to have Down syndrome while we waited on the results to come back.  Then I remember the phone call that changed our lives forever.  How I acted as if I just heard that my child had died, when in fact he was thriving & fighting for his life.  I was being so vain.  I wasn't putting my trust in God.  I wish that I knew then, what I know now.

     Then:  I was so worried that people would make fun of him for looking different.

     Now:  If people do make fun of him, they do it in private.  I have never heard anyone say anything negative about my son.  All of the comments I do hear is "he's so cute" "how adorable" "look at those beautiful blue eyes" "oh, I could just kiss those cute little cheeks!"  We always hear compliments, never complaints.

     Then:  All of the "statistics" say that my son may not talk, may not walk until he's 5, & he may need to be tube fed.

     Now:  He talks like any other toddler.  Keep in mind, he doesn't talk like a 'typical' 3 1/2 year old, but more like a 2 year old.  But that's totally fine.  I'm so blessed that he does talk.  He had 3 heart surgeries before he was 2, so his walking was delayed.  He did walk before he was 27 months old.  Yep, that's my rock star!  He was only tube fed once, & that was when both of his lungs collapsed after his first OHS (open heart surgery).  He's still not the best eater, mainly because he's so picky, but he's doing great according to all of his doctors (& he has MANY doctors).  I've learned not to listen to 'statistics' or 'specialists', I listen to my instincts & my son.

     Then:  How is having a brother with special needs going to affect my oldest son?  (my daughter wasn't born yet)  I thought that my oldest son would resent my baby.  That he'd be ashamed to have a brother with special needs.  That he would feel neglected because of the time I would need to spend with the baby.

     Now:  They have the most wonderful bond I've ever seen.  My boys love each other with the purest love.  My oldest son isn't ashamed of his brother at all, in fact, he's proud of him.  He wears a Down syndrome awareness bracelet every day...he even wears his Buddy Walk shirts to school.  He is a great advocate for his brother.  One little tidbit I'd like to add is that my oldest son was throwing the football with a young man at the Buddy Walk...& that young man has Down syndrome!  Yep, I was, & still am, so proud!  My oldest son is now a teenager, so he does his own thing a lot of the time, but we try to include him in everything we do.

    Then:  I was worried about caring for him.  Would I know what to do?

    Now:  Caring for him is no different than caring for any other child.  I think all mothers worry at some point.  No, there are some challenges.  Like getting him to eat...potty training...getting him to drink out of a straw or a regular cup.  But, those things will come in time...& the eating part is just him being picky.  These things I can handle.

     Then:  I was concerned about his health.  With all of the possible health issues he could have...what would he have & how could we handle that?

     Now:  Well, I'm still concerned.  I don't think that will ever change.  He did have a CHD, which was repaired just one day shy of him turning 5 months old.  He developed infective endocarditis, coded right in front of us (luckily we had rushed him to CHOA @ Egleston just a few hours earlier), & had to have a life saving emergency OHS the next day (the day he turned 7 months).  We were told he wouldn't survive that infection...it had done far too much damage.  But, to God be ALL the glory, he did.  Since his little heart repaired itself, he is left with a lot of scar tissue that is causing him to have tricuspid stenosis.  He had to have a 3rd heart surgery when he was 23 months old.  He is still in congestive heart failure...has been since he was 2 weeks old, so he's on a diuretic daily to help with excess fluid.  He will need that valve replaced sooner or later, so until then, we watch him & wait.  He also has a thyroid imbalance that we're monitoring.  He has some problems with his eyes crossing, so we're patching & waiting.  He also has GERD, which he takes medicine for daily.  Because his immune system isn't the best, we have to try to avoid any circumstance where he could become sick.  If he gets sick, it's 100 times worse on him than a child without Down syndrome.

     Then:  How can I handle him having an OHS?  For nearly a year, I knew my son would require open heart surgery to repair his complete av canal defect.  How could I handle knowing his life was in the hands of a surgeon I had never met?  

     Now:  I was right to trust in God, THE GREAT PHYSICIAN.  I knew that He had it covered & that He helped guide that surgeon's hands to fix my baby's broken heart.  For nearly a year I had dreaded that day.  I knew I'd be a complete mess.  To my surprise, I was completely opposite.  Sure, I cried.  But not hysterically, like I thought I would.  I thought I'd be a nervous wreck, but I wasn't.  I thought I'd be on edge, worrying the entire time...that those 4 hours would be the longest 4 hours of my life.  Instead, time passed quickly, & the entire time, it was as if a calm came over me, as if God Himself had His arms wrapped around me.  I thought I'd be upset seeing him on those machines, with tubes, wires, & IVs everywhere, but I was just relieved to see my son.  It wasn't near as scary as I thought it would be.

    Then:  I hate to admit it, but I was angry at God for giving my what I thought was a flawed, imperfect child.

     Now:  I thank God for making him different!  This little boy has taught me so much in his short little life.  He has made me a better person.  His something extra has shown our entire family what unconditional love really is.  Now I ask God every day to forgive me for my attitude then & thank Him for blessing me.  Because that's what Troy is, a blessing!  If only I had known all of this then...

    


Friday, October 12, 2012

Day 12

Top 10 things NOT to say to me:

10:  "Why did you have the prenatal test with your son, but not your daughter?"  No, it does NOT mean that I love her more than him or vice versa.  It's actually pretty simple.  I understand Down syndrome now.  Before Troy, I had no clue what to do, what to expect.  I did NOT have the prenatal testing to determine whether or not to terminate the pregnancy.  I did it to prepare myself & I'm glad I did.  I was able to go through the natural "grieving" process before he was born.  With my daughter, if she had Down syndrome, it didn't matter.  I only wanted to know if she had a heart condition...that's it.  In fact, I would've felt blessed if God had blessed me with another child with Down syndrome.  That would mean that He trusts me extra times 3!  :)

9:  "Does he have a touch of Down syndrome?"  You either have Down syndrome or you don't.  It's that simple.
 
8:  "Look, that person is like Troy."  I love seeing other people with Down syndrome.  It just makes my soul smile.  However, just because that person has Down syndrome doesn't mean he's like my son.  Troy has his own personality & deserves to be known as a person, not as his diagnosis...likewise for the other person.

7:  "Down syndrome child, Downsy, has Down's"  Neither of the following terms are correct language to use.  The correct term is a person with Down syndrome.  They deserve to be respected as a person first.  You wouldn't want to be referred to as some condition that you may have, so why would you do that to someone else?  In the USA, we use the term Down syndrome, not Down's.  Please, just use people first language, that's all. 

6:  "I don't know how you do it!"  Honestly, it's easy.  Raising a child with Down syndrome is just like raising a child without Down syndrome.  I give all of the glory to God, because without Him, I couldn't do it, & He knows that.  That's why it's easy...God is with us every second of every day.

5:  "Did you cause this?"  No.  Nothing I did, or didn't do before or during pregnancy caused my son to have an extra chromosome.  Yes, I have chronic pancreatitis & was on a LOT of medications before & during the first few months of pregnancy (until I was able to wean myself off of them).  But none of that caused my son to have Down syndrome.  That was God's purpose for my son.

4: "Are you sure he has Down syndrome?"  Yes.  We had a CVS test when I was in my first trimester & we've been to a geneticist, who gave us a copy of his karyotype (which is a picture of his genetic makeup).  Also, he was born with the most common congenital heart defect for babies with Down syndrome.  And, he does have many of the characteristics that people with Down syndrome have...which makes him adorable.

3:  "He's 3, shouldn't he be... Potty trained:  I have tried & continue to try to potty train him.  He's not ready.  AND he's on Lasix for his heart, which makes it really hard for him (or anyone) to know when it's time to potty.
Drinking from a regular cup or at least a straw:  I work with him all of the time to try to get him off of the sippy cup.  He can bring liquid up in to a straw, but once it hits his mouth, he spits it out.  He'll get there, he's just not ready & it's not due to my lack of trying.
Going up & down steps alone, jumping & running:  I thought so, too.  He just can't.  He practices these every day, but it's just out of his comfort zone right now.  As long as he's trying, I'm happy.

2:  "I'm sorry!"  Because I'm not.  I love my son just the way he is...wouldn't change him for a thing.  Yes, I did mourn my perfect child for a few days, maybe a week, after the prenatal diagnosis, BUT I realized that my child didn't die & accepted him for the way God made him.  Please accept him, too, & don't feel pity for us.  We only want you to look at us & see how much we love one another.

1:  DO NOT SAY THE WORD RETARD or RETARDED IN MY PRESENCE!  If you do, I will correct you quicker than you can blink your eye!  It doesn't matter if you weren't referring to my child (because, trust me, if you were, I don't think you'd be able to hear my lecture) or not.  That word is the worst word you can use in my presence.  There are so many other words you can use instead of this word.  Besides, do you know how ignorant you look when you misuse that word?

One last footnote.  Please, don't stare!  I know my children are beautiful, but staring is unnecessary.  :) If you are staring simply because you know & love someone with Down syndrome, come tell us.  We love to meet other folks & hear your stories!  But constant staring makes my blood boil.  It makes me so uncomfortable & oh, so furious. 




Thursday, October 11, 2012

Day 11

     The behavioral challenges seen in children with Down syndrome are usually not all that different from those seen in typically developing children. However, they may occur at a later age and last somewhat longer. For example temper tantrums are common in 2-3 year olds, for a child with Down syndrome temper tantrums may begin at 3-4. 

     I'm sure you've heard of the "terrible twos."  Well, my son didn't go through those.  Nah, now that he's almost 4, he starts them.  I guess you'd call this the "terrible three & a halves."  ;)

     If you tell my son, "no," sometimes he listens, sometimes he doesn't.  It's not because he doesn't understand, it's to test us.  To see what he can get away with.  He's generally so well behaved, but at times, he's so defiant.  He will deliberately do something you told him not to do & look at you like "I'm going to do it anyway...what are you going to do about it?"

     When we're in public, we try to let him walk sometimes.  For instance, if we're going in to a restaurant, we'll hold his hand & let him walk to the door, to the table, etc.  Sometimes he will try his best to break free & run off.  He thinks that is hilarious...but it scares me so much.  Another example:  I had an appointment yesterday & I took both of my little ones.  I put my daughter in her stroller & let Troy help me push his sister.  That worked from the vehicle to the waiting room.  But after that, he didn't want to help anymore.  He wanted to run around.  As we were leaving, we had to go through 2 different doors, back to back.  We pushed the handicapped button & the first door opened, but the second door didn't.  I pushed the button again, nothing.  Trying to hold his hand, push a stroller, & open the door with only 2 hands was a tad difficult.  I got the door opened & my daughter's stroller was stuck (the wheels were sideways...go figure).  I didn't have a good grip on Troy, so he took advantage & let go of my hand.  Thank goodness I was fast enough that he only took 2 or 3 steps, but still, I was heartbroken.  What could've happened just kept playing over & over in my mind.  I know, he was fine.  But I can assure you that by the next time I have an appointment, I WILL have a double stroller so this can't happen.


Wednesday, October 10, 2012

Day 10

     The most common of the three types of Down Syndrome is often referred to as Trisomy 21. About 95% of people with Down Syndrome have this (my son has this type). This type of Down Syndrome occurs because of an error in cell division. The error happens either before or at the time of conception. What happens is that a pair of the 21st chromosomes in either the egg or the sperm do not separate properly. This extra chromosome is then found in every cell in the body,thereby causing the characteristics of Down Syndrome.
Mosaicism occurs in about 1-2% of all people with Down Syndrome. In this type of Down Syndrome the error in separation of the 21st chromosome occurs in one of the first few cell divisions AFTER fertilization. This causes the fetus to have some cells with 46 chromosomes and some with 47. The cells with 47 chromosomes have one extra 21st chromosome. Because of the fact that not all cells contain the extra chromosome 21 the range of physical problems varies depending on the ratio of cells with 46 chromosomes to those with 47 chromosomes.
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Translocation occurs in approximately 3-4% of babies born with Down Syndrome. In this type of Down Syndrome a part of chromosome number 21 breaks off and attaches itself to another chromosome. Often this is chromosome number 14. This causes all cells in the body to have the extra piece of the 21st chromosome. When a child is born with this type of Down Syndrome it could mean that one of the parents is carrying chromosomal material that is unusually arranged.The test used to determine which type of Down Syndrome is present in an individual is called karyotyping, which is a picture of the
chromosomes. 

Tuesday, October 9, 2012

Day 9

     Today's fact:   90% of parents who receive a prenatal diagnosis of Down syndrome, terminate the pregnancy.  Yes, you read that right...90%!  If only those parents knew what I know....because if they did, there's NO WAY they'd have an abortion.  See, I am the lucky one.  My son is only 1 of the 10% of children who receive a prenatal diagnosis & live to tell about it!  :)
     Did your jaw hit the floor?  "What....she had a prenatal screening?  But she's anti-abortion...& she found out her son has Down syndrome & kept him?"  Yes.  I had the CVS test when my doctor noticed my baby's neck was a tad thicker than it should be.  He advised me & my husband that there was a 1, maybe 2% chance that my baby would have Down syndrome.  We opted to do the test because I am the type of person that likes to be prepared.  I began research Down syndrome immediately.  All of the materials that I read made it seem so glum.  Which is very disappointing because that could be why the abortion rate is so high.  These scared parents research this chromosomal abnormality, just like I did,  & see what I saw.  They question themselves, & decide termination is best.  That's why I firmly believe that every OB office should have pamphlets in their office that have the facts from parents who have done this, who actually have children with Down syndrome.  Then, perhaps, they wouldn't be so scared.  I know that I had my mind made up.  Nothing or no one was going to convince me to terminate my son.  Even if he had a life threatening condition & he wouldn't live long after he was born...I couldn't end his life.  That's not my job.  If these scared parents had some reassurance, it wouldn't be so difficult.  Maybe one day this idea of mine will come to life & that awful termination rate will go from 90% to 0!

Monday, October 8, 2012

Day 8

     Everyone who knows me, knows that I love my family.  I love my husband, 2 boys, & my daughter with my entire heart & soul.  They also know that my middle son has Down syndrome.  My job as a mother is to advocate for my children.  With October being Down Syndrome Awareness Month, I am posting things daily about Down syndrome on facebook & I'm blogging on here daily, all to raise awareness & educate those who aren't familiar with Down syndrome.  Today, a (now former) friend posted about how she was mad about everyone clogging up her news feed about Down syndrome.  And get this, her child HAS DOWN SYNDROME!  She went on to say that us parents should wake up, accept our child's diagnosis, & move on.  Well, I calmly explained to her why I do this.  She went on the attack again, so I just unfriended her.  I'm not going to waste my time on her.
     But I do want to explain something.  I try to show the world that my son is just like every other toddler.  Because, he is.  He loves the same things most toddlers do.  He has the same temper & attitude...he's impatient, loves to play, has a nap & bedtime, just like most toddlers.  But then again, no, he's not like most toddlers his age...& that's okay!  I think back to when Chancey was his age, almost 4.  At this age, he bathed himself, brushed his own teeth, & didn't ride in a stroller.  He knew the alphabet, colors, how to write his name, & how to count.  He could dress himself, feed himself, drink out of a regular cup, he could color in a coloring book, draw, & write his entire name.  By the time Chancey started Kindergarten, he could read. 
     Should I compare my kids, no matter if they have special needs or not?  NO!  Everyone learns at their own pace.  Not every child is the same, period...Down syndrome or not.  Am I upset that Troy is just now learning his colors, how to count, & the alphabet?  No way!  I'm so very proud of him.  That's why I brag about him constantly.  Hey, he'll get there.  In his own time, he'll do those things.  I'm sincerely grateful to be given the opportunity to teach him.  I'm blessed to have him as my son.
     To tell someone to get over their child's diagnosis & move on?  Nope, I can't do that.  I'll never get over the fact that my son has Down syndrome, because it's not something that he'll get over.  He will never "get rid" of that extra copy of the 21st chromosome.  Don't get me wrong, I'm not bitter that my son has Down syndrome.  I've never had the "poor me" mentality.  I have never wished him or his something extra away.  I had the CVS test to determine if my son had Down syndrome to be prepared.  I accepted his diagnosis before I was even in my 2nd trimester!  So why should I stop trying to teach the world about that something extra & what it does to make him the same, yet different from everyone else?  If I did that, I'd be giving up, now wouldn't I?  I'm not going to give up on my son, EVER!
     I'm not doing this for me.  I'm not doing this for my family.  Honestly, I'm doing this...posting daily, blogging, wearing my DS attire (necklaces, ribbons, pins, shirts), walking in the Buddy Walk, etc. to help educate those who aren't aware of what Down syndrome is.  I didn't know what Down syndrome meant before I had my son.  Now, I did know that it's a chromosomal thing & I knew that people with Down syndrome had a certain "look."  But that was all.  I'm hoping that by doing this, that my friends (who don't have children with Down syndrome) will learn something & share it with their families.  I know that my Down syndrome community knows what it is & they know every thing I know, if not more.  I just thought they all knew the reasoning behind my efforts.  After all, I did warn folks that I'd be doing this.  And I love learning new things.  I have a good friend who has a son with Autism.  I know what Autism is & I know how it affects her son {to an extent}but I do not know what he goes through, what his family goes through...& I don't know all of the facts about Autism.  I would LOVE to, though.  I'd love to read daily posts about it in the month of April, during Autism Awareness Month.
     The lady who complained just struck a nerve with me.  Sure, she complained on her own wall.  I realize she has the right to write what she want to on her own wall.  But, I have the right to respond.  I did politely tell her the reasons why I was posting facts daily.  She said that she'd be hiding my newsfeed from her wall.  Why?  First of all, if you have a child with Down syndrome, you should be proud to know that I'm here advocating for your child.  Second, if you don't like that, don't hide my posts, delete me all together!  Just because you complain doesn't mean that I'm going to stop using my voice.  Nope, that will never happen.  Finally, don't keep me as friend if you aren't going to associate with me.  I'm not a number, I am a person.  So if my posts bother you, feel free to delete me.  I won't be offended at all.  If you don't want to do that, if you don't want to lose me as a number, let me know you're offended by my son...I'll gladly hit the unfriend button!

Sunday, October 7, 2012

Day 7

     As I am sure you know, our Buddy Walk was today.  We went in to celebrate our Troy & honor my sweet Princess, Iris.  We sported our Troy's Trekkers shirts with our DS awareness ribbons & purple ribbons along side them in memory of Iris.  Troy was having a ball!  He was chasing the pigeons & playing ball, playing on the slide, & eating like a little pig.  The DJ started to talk, welcoming every one, kicking off the event, the most beautiful butterfly came right up to us (during the singing of the national anthem).  She lingered around for a little while, making her presence known.  Tears filled my eyes, because I knew who that beautiful little butterfly was.  My heart immediately filled with joy.  :')  Thank you, Princess...that just made the whole team's day.  As long as we are here, your memory will always be alive.  We love you & I can't wait to see that gorgeous face one day.  
     Not 5 minutes after the appearance of our precious butterfly, we saw little Kylie Grace's family.  Yep, the tears flowed yet again.  I was so proud (as I am of Stephanie, Anne, & team Nugget) of them for coming.  As we went to line up for the walk, it was announced that her family would be leading this year's Walk.  Yeah, you guessed it...tears again.
     We want to thank everyone who came to the Buddy Walk to support our little T-boy.  It means the world to know that he's so loved!  We also want to thank everyone who wasn't able to make it to the walk, but still donated to Troy's Trekkers!  It was a fantastic year, as always.  We hope to make 2013 even better.

Saturday, October 6, 2012

Day 6

MYTH: People with Down syndrome are always happy.
TRUTH: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

In my nearly four years of experience, I've learned so many things about Down syndrome.  Not only does my son experience the same feelings as everyone else, but I've learned that he is VERY stubborn & impatient!  He wants what he wants, when he wants it.  It doesn't matter if you're going down the road & he wants "cookies in a bowl" or "cheese dip"...he wants THAT, NOW!  You can offer him better choices, but that's not going to do anything but cause a scene.  Because he is about to grunt & tell you FIRMLY what he wants AGAIN.  Nope, nothing is going to satisfy him until he gets what he wants.  If I try to push the healthy choice on him, not only will he not eat it, he will shut down, rejecting every thing.  So I do give him what he wants, when he wants it.  Call me what you want, but he's going to be happy.  He may want cookies or chips & cheese dip right now, & he will get it...BUT, he will also eat his vegetables & fruit a little later.

He is also very loving.  He forgives like we all should.  If you hurt him, he doesn't hold a grudge...he gets over it!  You can spank him for not listening & 2 minutes later, he's in your lap giving you kisses.  But along with that, he gets attached.  If you stop coming around, he notices & it breaks his little heart (which makes for one upset mama).

He is very smart!  I was folding laundry the other day & each piece that I brought up out of the basket he would say what it was & who it belongs to.  I had his brother's shirt & he said "Chancey's shirt!"  Then I was folding his daddy's shorts & he said "Daddy's britches!'  That boy never ceases to amaze me.

There are so many things that make my little boy so perfect, despite the fact that some people think he's flawed & imperfect.  But I honestly don't care if someone thinks that my son should've been aborted because he's "different."  We're all different, that's the way God intended it.  I love my Troy just the way he is.  You know, I believe there is pure awesomeness stored in his something extra...awesomeness created by God.

Friday, October 5, 2012

Day 5

The incidence of congenital heart disease in children with Down syndrome is some where between 40-60 percent.  While some heart defects can be left alone with careful monitoring, others require surgery to correct the problem.
Here are the common types of heart defects in children with Down syndrome:
  • Atrioventricular Septal Defects (AVSDs) – These are the most common in children with Down syndrome.  (This is what Troy had)
  • Ventricular Septal Defects (VSDs)
  • Atrial Septal Defects
  • Patent Ductus Arteriosus
  • Tetralogy of Fallot   

    Atrioventricular Septal Defects (AVSDs)

    These heart defects are defined by a hole in the wall between the top chambers (atria) and bottom chambers (ventricles) and one common valve between the two areas. In some cases, there might not be a hole between the bottom chambers. Or the valves may not be joined together, but either or both might leak. This is known as valve incompetence.
    Because of the high pressure in the left ventricle which is needed to pump the blood around the body, blood is forced through the holes in the central heart wall (septum) when the ventricle contracts. This increases the pressure in the right ventricle. This increased pressure (pulmonary hypertension) results in excess blood flow to the lungs.
    This is the type of CHD that Troy was born with.  He had a huge hole in the center of his heart, two smaller holes above & below the one big hole, & this mitral & tricuspid valves were fused together.  

    Symptoms

    Some of the early symptoms seen are difficulty in eating, weight gain, fast irregular breathing and a degree of cyanosis (blueness) particularly noticeable around the mouth, fingers and toes. Clinical examination may show an enlarged heart and liver, and a diagnosis of congestive heart failure (CHF) may be given. This term is used because of the flow of blood from one side to the other; the heart has to work harder than normal causing the heart to fail to work normally.
    Not all children will exhibit symptoms early in life, and those that do will not always show all of these.
    Troy had trouble eating.  We had to increase his caloric intake to help him gain weight & grow, even though he looked like a fat little baby (due to the retention of fluids caused by his CHD.  He struggled to take 2 oz per feeding.  Therefore, I fed him every 2-3 hours around the clock for the first 5 months of his life.

    Treatment

    Early treatment may involve the use of diuretics to control the fluid retention around the body and to reduce the volume of blood in the circulation, thus making the heart's workload easier. These may be used in conjunction with other drugs that increase the contraction of the heart muscle.
    Slow weight gain may indicate the need to use high-calorie formula increase calorie intake. Severe eating problems may warrant using a naso-gastric tube (through the nose and directly into the stomach) to help with proper nutrition.
    The majority of cases of AVSD usually require surgical intervention; this generally takes place within the first six months of life.  Troy had his repair just one day shy of turning 5 months old. 

    Ventricular Septal Defects (VSDs)

    In this defect there is a hole between the bottom chambers (pumping chambers or ventricles). Because of the higher pressure in the left side of the heart, this allows oxygenated blood to flow through the hole from the left to the right side of the heart, and back to the lungs, in addition to the normal flow.
    The amount of blood flow from the left to right ventricle depends on the size of the hole and on the pressure between the ventricles. In other words, the higher the rate of flow means more strain on the heart. The abnormal blood flow is responsible for the murmur that may be heard.

    Symptoms

    Generally patients with a small VSD will not exhibit symptoms (they are asymptomatic) and the problem may only be found when a murmur is detected upon routine examination. Patients with a moderate VSD may breathe quickly, exhibit poor weight gain, and be slower at eating. These children are also much more prone to chest infections. This tends to be more pronounced when the hole is large.

    Treatment

    As with ASVDs, patients with moderate or large holes usually require treatment with diuretics to control fluid retention and to reduce the volume of blood in the circulation may be used. Also, high-calorie formula or tube feedings might be necessary.
    Many VSDs will close spontaneously or get much smaller, so it is normal practice to leave a child with a small or moderate VSD and monitor their progress before deciding to operate. Surgery may be needed if there is failure to thrive despite medication, or concern about pulmonary hypertension. If a large VSD is present, surgery is almost always recommended. 

    Atrial Septal Defects (ASDs) 

    In this defect there is a hole between the top chambers (receiving chambers or atria). Because of the higher pressure in the left side of the heart, oxygenated blood flows through the hole from the left to the right side of the heart, and back to the lungs, in addition to the normal flow.
    There are three types of Atrial Septal Defect; the most common is when there is a hole in the middle of the central heart wall. Holes in the lower part of the septum, called the primum defect (partial atrioventricular septal defect), are often associated with a problem of the mitral valve that often results in a leak. Less common are sinus venosus defects or holes in the top of the septum. These are associated with an abnormality of the right upper lung vein.

    Symptoms

    Generally patients with an ASD defect will exhibit no symptoms and the problem is only found when a routine clinical examination detects a heart murmur. Occasionally children with this problem will exhibit poor weight gain and a failure to thrive, and if there is mitral valve leakage there may be early symptoms of breathlessness.

    Treatment

    Small holes which allow little blood flow from left to right generally cause no problems. If they are located in the middle portion of the central heart wall, they may even close on their own.
    However, moderate and large holes do not close, and the extra work over the years places a strain on the right side of the heart causing an enlargement of both pumping chambers. Therefore, treatment (surgery) is usually recommended in the first few years of life for larger holes, before excessive strain has been placed on the heart.

    Patent Ductus Arteriosus (PDA)

    This defect is the continuance of a direct connection between the aorta and the lung (pulmonary) artery, which normally closes shortly after birth.
    A baby in the womb is supplied oxygen by the placenta via the umbilical cord. The baby's lungs are not expanded and require only a small amount of blood for them to grow. The ductus is a blood vessel that allows blood to bypass the baby's lungs.
    Generally the ductus close within a few days of birth, and the connections between the two sides of the heart no longer exist. The resistance to blood flow quickly falls with the onset of breathing. In some babies with Down syndrome the ductus fails to close. This causes higher pressure in the left side of the heart and increases the amount of blood flowing into the lungs.

    Symptoms

    If the ductus has partially closed and only a narrow connection remains, the baby won’t show symptoms. If the connection is larger, the baby may be breathless and tired and show poor weight gain.

    Treatment

    If the ductus remains open for more than three months, it is unlikely to close on its own and surgical closure is recommended.

    Tetralogy of Fallot

    A small percentage of babies with Down syndrome have this complex heart condition which combines the most common defect associated with Down syndrome, AVSD, with Tetralogy of Fallot.
    This anomaly includes four different heart problems:
  • a hole between the top chambers and a hole between the bottom chambers
  • combined mitral and tricuspid valves (common atrioventricular valve)
  • narrowed pulmonary artery (from heart to lungs) or the area under or above the valve, or all three
  • thickening of the right bottom chamber (ventricle)

Symptoms

The combination of these defects early in life almost seems to balance out such that the child may be rather blue, but not too breathless. There can, of course, be too much blueness or too much breathlessness, depending on the severity of the different conditions.

Treatment

The type of surgery depends on the severity of the AVSD or the Fallots. Usually, the children are quite blue and require a BT shunt to increase the amount of blue going to the lungs. Then another operation is performed later – usually at 1-2 years of age – so that the holes can be closed, the valves repaired, and the way out to the lung artery widened.

Other Heart Related Problems in Down Syndrome

In addition to the heart defects associated with Down syndrome, high blood pressure in the lungs (pulmonary hypertension) is more common in people with Down syndrome. This high blood pressure may be a result of malformation of the lung tissue, but the exact cause is not known.
Higher blood pressure may limit the amount of blood flow to the lungs and therefore decrease the likelihood of symptoms of congestive heart failure seen in babies with complete AV canals or large ventricular septal defects. This then causes the problem of delaying a possible needed surgery to close holes in the heart. These babies must be watched carefully in order to determine the best time for surgery.

Tests to Diagnose Congenital Heart Disease in Babies with Down Syndrome

The majority of cardiologists agree that all babies diagnosed with Down syndrome should have a cardiology evaluation. This is because of the high incidence of associated congenital heart defects. A good history and physical examination should be performed by an experienced cardiologist to rule out any obvious heart defect.
An electrocardiogram should be performed. This can be very helpful in making the diagnosis of AV canal, even when physical symptoms are absent.
Some doctors also choose to perform at least one echocardiogram to rule out other subtle heart problems.
If the diagnosis of congenital heart disease is made, the cardiologist normally follows up with the child through routine office visits. Most patients can be watched clinically to determine if the child is having difficulty because of the heart defect.
Occasionally, a repeat electrocardiogram, chest X-ray, or echocardiogram is performed to further evaluate clinical changes. These tests are likely to be repeated before surgical repair is recommended.
Rarely, a cardiac catheterization is required for complete evaluation prior to corrective surgery, especially in children where elevated pressures in the lungs are a concern.
Parents of a child with Down syndrome need to work closely with their child’s doctor(s) to determine what route (surgical or medical) will best serve their child.