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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, April 27, 2011

Troy's journey..

     This entry is about Troy's heart journey thus far....it's a tad lengthy, but it's worth the read!  I'm posting it for those who do not know about his journey & to help encourage others.
     When the perninatalogist performed the ultrasound of Troy's heart to scan for heart defects, I was nervous.  A heart condition was serious, so I was prepared for anything.  Or so I thought.  I knew something was wrong when the nurse lingered over his tiny little heart.  I wasn't trained on how to read an ultrasound of the heart so I was in the dark for the first time.  Then she called the doctor in without telling us that everything was good, so I was really concerned.  I looked at my husband & told him that something was wrong.  He asked me what I saw, I told him that I couldn't tell, don't know anything about the heart.  Of all my medical training, background, & experience why in the world did it have to be something that I was clueless about?  Then the doctor did his own scan & he took an eternity studying Troy's little heart, too.  Then he told us that Troy has a heart defect that is common in kids with Down syndrome, complete AV canal defect.  Uh, what?  What in the world is that & how do we fix it?  First off, a CAVC (complete atrioventricular canal) is a large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation.  To fix it, he would need surgery...open heart surgery.  So, we were referred to a pediatric cardiologist who would follow Troy for his entire childhood & would refer him to the surgeon that would repair his heart.  She explained that this is the most common defect in children with Down syndrome & that they (& the surgeons) see this all of the time.  She said that he'd need open heart surgery around 6 months of age.  They wanted him to grow some, so he'd have a better chance of survival & his heart could grow.  She said that his tricuspid & mitral valves were fused together, so they'd have to make the one valve in to two separate valves, like they should be.  That eased my mind some, but when you're dealing with the heart, you can't help but worry.  As my due date drew near, Troy's cardiologist told me that he might not have enough blood flow to his lungs, so he may not cry.  He may have to have surgery immediately after birth.  Huh?  You tell me this, NOW?  I thought all was well, now you're saying that it might not be?!  I had to go in every other day to my OB/GYN for a non stress test to see if Troy was tolerating his environment.  Finally, Dr. Lake (LOVE him) said that he thinks I should be induced, so we scheduled my induction.  I couldn't wait to finally see & hold Troy, but I was so nervous about 'the something' that could go wrong...I just longed to hear him cry.  Because if he can cry, he can breathe & he won't require surgery yet.  Then the moment was here, he was born....he cried as soon as his little head popped out!  I began crying myself, tears of utter joy!  We all had a few minutes to see him before they whisked him to the NICU.  They did all of the tests, scans, etc. & he was great.  We could hold off until he was about 6 months old before he would need open heart surgery to repair the defect.  He was oxygenating well, his sats were continuously 93%, but we kept a close eye on him.
     Then he went into heart failure at 2 weeks old, but we were prepared for this.  The cardiologist put him on some medications to keep him alive & told me to increase his caloric intake.  He was slow to gain weight & I fed him every 2-3 hours around the clock.  The cardiologist decided that he needed to go ahead & have his surgery a month earlier than we expected.  His surgery was set for June 11th.  But at the last minute, he had to be pushed back due to an emergency case...so he was set for June 12, 2009, just one day shy of turning 5 months old.  The surgeon advised us that he had 3 holes in his heart.  He was missing the entire center of his heart & he had 2 smaller holes, one just above the big hole & one just below.  He said that the valves were the concern.  When you reconstruct the valves, they have a tendency to leak.  If they leak too much, he'd have to have another surgery down the road, but right now that leak was minimal.  He said that the surgery went well.  I was so proud of my handsome little warrior!  He had some set backs the next day, though.  His right lung collapsed, then the top of his left lobe collapsed, too.  He had to go on a feeding tube for the first time.  This meant more time in the CICU, but that was the least of my worries.  He had to have respiratory therapy several times a day & was on a cpap canula to keep his O2 sats up.  We spent a total of 9 days there.  He went home on a lot of new medications, but was weaned off them eventually.  At the time, I figured that June 12, 2009 would be the hardest day of my life.  I was wrong.
     Not even 2 months later, we found ourselves back at CHOA @ Egleston.  Something was wrong with Troy.  We arrived at Egleston, in fact I laid him on the trauma bed in the ER at 1:00 a.m. on 8/12/09.  His O2 sats were in the low 80s.  The cardiologist that was there did an echo cardiogram & said that he had a severe leak in his mitral valve.  He admitted him & said that he & Troy's surgeon would compare that echo to his previous ones & make a decision on what to do.  We got up to the room & hoped that Troy could get some rest...it was around 5:00 a.m.  Troy wouldn't stop crying & he wouldn't be still.  I asked the nurse to come look at Troy because he wasn't acting himself.  He usually lets me or his daddy rock him to sleep & he wouldn't.  He's usually a happy baby, the best baby.  So she gave him some medication to help him sleep.  But a few minutes later his spit up blood.  I pressed the nurse button, the tech came in, got the blanket with the blood on it, & put in in the soiled linen bin, then walked out.  I pressed the button again & asked for the nurse.  She came in & I told her what happened.  She said, "well, the medication I gave him is orange.  Maybe that's what he spit up."  I told her that it was blood.  She said she'd get the doctor.  He FINALLY came in & agreed that he was agitated.  He ordered a blood gas & asked me to lay Troy on the bed.  As soon as I laid him down, his O2 sats went from 73 to 50 to 37 to 0.  I looked at my husband, he looked as white as a ghost.  Then something happened that will convince the most devout atheist that there is a God.  His surgeon walked past Troy's door as they called the code.  He rushed in & took over.  They surrounded his bed & rushed him to the CICU.  All I knew was that my son was not breathing when he left that room.  I didn't know if they had revived him or if he had passed away.  I was numb.  We were told to wait right there & someone would update us as soon as they knew anything.  Mack & I sat there, speechless.  What do you say?  You don't say anything to anyone, because this was not something that I could fix, Mack could fix, or even those surgeons, doctors, or nurses could fix...this was in God's hands.  I began to pray.  "Dear Heavenly Father, thank You for this day.  Thank You for all of the blessings in my life.  Thank you for Troy & for the ability to know to bring him to this hospital & getting us here safe & sound.  Lord, I ask you to take over, use those doctors hands to save my son.  Help them to know how to heal his little heart & body.  He's a fighter & he will get through this if You give him the chance.  Please be with all of the children here & their families.  All this I ask in Jesus' name.  Amen."  The next few minutes seemed like an eternity.  I just had a feeling of numbness, disbelief at the entire situation.  I called my parents to tell them not to send Chancey (our oldest son) to school & to get down there ASAP.   Then a wonderful nurse came in the room.  She said that he had to be put on life support.  That his surgeon will perform emergency heart surgery as soon as he's stable enough...that could be in an hour or in a few days.  We weren't prepared for this.  Our oldest son was at his grandparents' house & it was his first week at school.  We didn't have any clothes or necessities, Mack was supposed to be at work.  Our dog was at home, alone.  But I couldn't focus on any of that.  All I could do was pray continuously.
     We couldn't see Troy until rounds were over at 10 a.m.  And in the mean time, we had so much to do.  We went over to the Ronald McDonald House to get a room for who knows how long...thank God for the RMH.  They would put us up, feed us, help us in any way, all just a mile away from our sweet baby.  We needed to get some clothes & necessities, but our house was 60+ miles away & I wasn't leaving that vicinity, PERIOD.  We handled everything at the RMH & headed back to the hospital to see Troy.
     Then Troy took a turn for the worse.  He was not oxygenating on the ventilator.  So they put him on an oscillator.  Instead of breathing for him, it inflated his lungs & vibrated the air around.  He couldn't have the life saving surgery until he was stable.  This did the trick & he was scheduled for emergency surgery the first thing the next morning.  My poor boy would have to hold on until the next morning...I begged him to hold on, just fight until he could get some help from the surgeon.  We had to leave the hospital.  See, at CHOA, you aren't allowed to stay with your child 24/7, at least not in the CICU.  You have to leave at night, you have to leave at 6 a.m. & can't return until 10 a.m., or when ever rounds are finally over, & again around 5:30 p.m. & you can't return until 8 p.m., & if there's an emergency or a new patient coming in, you have to leave.  So I told the nurse to call us if there was ANY change.
     The next morning, we were allowed in the CICU early because of Troy's early surgery, which was scheduled for 7 a.m.  We got there around 6 a.m. & prayed for him.  We watched as they prepared everything for his surgery, holding his hands, rubbing his little body, kissing his swollen face.  We were allowed to walk down the hall with Troy until we reached the OR doors.  I walked & watched the nurse as she squeezed the apparatus that was manually breathing for him.  I think I cried the entire walk.  We kissed our boy & put him in the hands of the surgeon once more.
     This time a calm didn't come across me.  I was on edge the entire time.  It felt like I had swallowed an elephant.  Finally, the surgery was over.  We waited to hear from Dr. Kogon's assistant, just like the last surgery.  But this time, the surgeon came into the waiting room.  My heart fell to the floor.  I looked at my husband & told him, "some thing's wrong."  Sure enough, I was right.  He told us that Troy had an infection that's known as infective endocarditis.  He went in to repair the mitral valve & it just fell apart.  The same thing happened when he went to check his tricuspid valve.  I'll never forget his words, "there wasn't enough tissue to reconstruct the valves,  I pieced them together as best I could.  But it doesn't look good.  Not good at all.  I don't expect him to survive."  I couldn't breathe.  I had to get out of that crowded, impersonal room.  My son had infective endocarditis?  How in the world did he get it?  How could he have that bad of an infection without a fever or any symptoms other than fussiness & vomiting?  How could I miss this?  What was I going to do without my son?  I began to pray & beg God.
     As I walked out of the room that I ran in to, guess who was getting off the elevator?  My pastor & our associate pastor!  Talk about God intervening!!  They prayed with us right there in the hall!  I could feel that God was listening to us.  Then a calm came over me, as if God was holding me in His mighty arms, whispering, "I am here.  Your son is going to be just fine."
     Then we were able to go see Troy.  He looked remarkably well to me.  Glory be to God, our boy was fighting.  He was beating the odds.  They did blood cultures, put in a PICC line, put him in isolation, & he was taking 3 of the strongest IV antibiotics around the clock.  The doctors suspected that he had MRSA, but the cultures came back negative.  We were on contact precaution anyway for a while...had to suit up head to toe before entering his isolation room.  
     Troy began responding to the antibiotics, although we didn't know what the infection was or what caused it.  That really didn't matter to me...I just wanted my son to fight, to survive.  And he was doing just that!
     Not only did he survive, but all of the holes in his valves closed up on their own.  His damaged heart was healing itself!  How, you ask?  God, that's how!  I bet you have chill bumps, don't you?!  God, our Father, was laying His hands on my son, healing his unhealable heart!
     Just months later, he was taken off all of his heart medication for the first time since he was 2 weeks old.  But we still didn't know how he contracted the infectious endocarditis.  We were told that he had MRSA, but the cultures were all negative.  Even the CDC couldn't find the culprit.  We were just told that he most likely contracted it when he had his first surgery.  So now they labelled it as culture negative endocarditis.
     Then mid December 2010, we found out that due to the scar tissue in his heart, he has tricuspid stenosis.  Which means that his tricuspid valve is more narrow than it should be.  He went into complete heart failure on December 16, 2010 & was rushed to CHOA @ Egleston.  We were told to be prepared to be there until after Christmas.  But his doctors performed surgery the next day.  He had what's known as valvuloplasty of this tricuspid valve.  They went in & put a balloon in the valve to try to open it up.  If it wasn't successful, he'd need to have an artificial valve to replace the tricuspid valve soon.  Dr. Kim came in & told us that the pressures in his valve went down remarkably after the surgery!  We'd have to keep an eye on it & him.  If he started having the same symptoms that we'd have to take another look, but that the surgery was a complete success.  So far, the valvuloplasty has kept Troy's heart stable.  I have to keep a close eye on Troy & if he begins to show signs of heart failure, I am to notify his cardiologist or take him to the ER at CHOA @ Egleston.  I've asked his cardiologist if it's possible that Troy would not require the valve replacement & he said, "it's possible, but not probable.  I've learned to never give any promises or say something is impossible."  At least we still have some hope.  We want the absolute best for Troy, so what ever he needs, we will provide.  But a valve replacement means that the artificial valve will have to be replaced every 2 years until he stops growing & then every 10 years after he reaches adulthood.  That's a lot of surgeries on his little heart.  However, it is possible that as Troy grows, & his heart grows, that his valve will even itself out.  So, please remember my Troy when you pray.  God has got him this far, I know He will come through for Troy again.
     July 11, 2012, Troy went for his routine check up.  I was nervous, as I usually am before these appointments.  The doctor ran all of the routine tests, listened to Troy's heart, checked his liver (because of the stenosis in his tricuspid valve, fluid backs up & makes his liver swell,  causing CHF...that's why he's on Lasix), & checked his growth.  Dr. Johnson said, with the BIGGEST smile on his face, "Troy is doing remarkable!  His valve is growing with him.  The murmur is the same, his heart has been unchanged in over a year & a half, so I think that the valve won't have to be replaced for another 5-10 years."   Tears welled up in my eyes!  Five to ten years...WOW!  We were expecting to have it replaced anytime now, & he's saying that we have 5-10 years!  I began to thank God immediately.  I mean, honestly, how else could this miracle be possible?  He told Troy to keep up the good work.  He wasn't concerned one bit with his growth, said he looked wonderful!  We aren't to go back for 6 months (which is fabulous because we are used to going every 3 months),
     Troy went for his semi-annual follow up with his Cardiologist on Friday, January 25, 2013.  Now, Troy wasn't happy during the BP check, the EKG, or the Echo cardiogram, but this mama left happier than ever!  Troy's heart sounded fine.  He's growing well, which means his heart is growing, too.  Pressure gradient is the same as it has been since his valvuloplasty!  His doctor said that he was too well to be sitting in his office!  Hallelujah!  Follow up in July.
     Troy's follow up appointments in July of 2013, in January 2014, & July 2014 were all the same. His heart is unchanged & the pressure gradient remains the same! No changes means no surgery!  His heart was doing so well that Troy was able to stretch out his cardiology visits to annually!  His visit in January 2015 revealed that his heart was growing, pressure gradient was good, liver looked well.  Continue Lasix once a day.  Next stop, January 2016.
Troy's annual cardiology appointment left Mack & me in tears.  We fought them back as we headed to the elevator.  Troy's heart looked so well that he is off his medication!  His valves are growing along with heart & the pressures are the best they have been!  If my son doesn't make you believe in God & in miracles, I don't know what will!
    So if you have prayed for my Troy, I can't thank you enough!  God is answering them.  He has a plan to use my son to spread His glory in this world.  Please continue to pray for him & our family. ♥

Tuesday, April 26, 2011

Will you take a stand?

     As I was watching True Hollywood Story:  Sarah Palin, I heard something that made my blood boil.  One of the women they were interviewing was talking about when Sarah found out that her son has Down syndrome.  She said "she was carrying a Down syndrome baby."  I gasped in disbelief!  What?  Did she just refer to Trigg as "a Down syndrome baby?"  Then she kept on digging herself a hole by referring to Trigg as if he weren't human.  I was floored.  How could she be so ignorant?  Trigg isn't "a Down syndrome baby,"  he's a child that happens to have Down syndrome!  I know, it seems so petty for me to get upset about that, but I can't help it.  I'm sure some other parents of kids with Down syndrome think the same way I do.  We are trying with all of our might to have our kids accepted in society.  We want people to view them the way we do, just like anyone else.  If people continue to label our children, how will they ever be accepted?  It's true, my son has Down syndrome, he has an extra chromosome.  Does that mean he is in another class of people?  No.  He is the same as you & me.  He does the same things we do.  I don't look at him & think that he's any different.  He has likes & dislikes just like everyone else.  He needs a little extra help with some things right now, but he's had 3 heart surgeries, he's going to be behind.  You know, when we look at him, we don't see "a Down syndrome baby."  We see Troy, our miracle.  And if someone approaches us in public, we don't say, "he's a Down syndrome baby."  In fact, we don't mention Down syndrome at all unless we are asked.  It's not that we're ashamed, because Lord knows we are not, but I feel like he deserves to be referred to as a boy, not labeled.  My son is a toddler, that just happens to have Down syndrome, Down syndrome doesn't have him!  Besides, you don't look at me & say that I am a caucasian female with chronic pancreatitis every time you refer to me, do you?  So why in the world do some people label people with Down syndrome?  Yep, we know they have the extra chromosome.  Does that make them less of a person?  Does that mean that they ARE Down syndrome?  Does that mean that I am chronic pancreatitis?  Or someone that has Lupus, or cancer is that as well?  We need to correct these people by making them aware of what they are doing.  Maybe they don't understand how ignorant they sound by using those terms.  We have to stand up for what we believe in.  If we don't stand for something, we'll fall for anything.  I am taking a stand for my son & for each & every person who finds this offensive.  Will you take a stand?

Monday, April 25, 2011

To sign or not to sign?

     Troy has been doing so well!  I feel like maybe I need to stop & pinch myself from time to time, that's how wonderful he's doing!  Over the past few weeks, he has just blossomed.  :)  He is talking so much more & I know he's meaning the things he's saying.  He's saying 2, sometimes 3 words at a time.  He did something yesterday morning & this morning that just warmed my heart & soul.  When he wakes up each morning, I can hear him rustling around & playing "pee-pie" with his monkey & giraffe.  But yesterday & today, he started saying "Mama" as soon as he woke up.  He doesn't get out of his bed yet, so he sits there until someone comes to get him, which is usually me.  When I get to him he raises his little arms & says "be", which means get me.  I had myself convinced that he was just saying "Mama" because he could or was asked to.  But now he will say "Mama" & look around for me.  He has been saying "Dada" & "Chancey" for well over a year now, & he knew who they were.  I worked with him daily, showing him their pictures & just talking to him.  I have a picture of myself as well & I show it to him & tell him that's Mama.  But he didn't seem to get that I was that person in the picture.  I guess I was wrong!  Because if my husband says, "tell Mama hi", he will look at me, wave, & say "hi!"  Once he even said, "Hi...Mama!" 
     I've been working so hard with him to get him where he is.  It may seem like a slow progress to some, but to me it's a HUGE accomplishment!  He's so attentive.  He seems so eager to learn.  In fact, if he so much as glances over & sees a book or his flash cards, he wants you to read it/quiz him over & over & over.  He thinks it's a game instead of work.  I am pleased that he likes it, but you can only read a book so many times in one sitting...
     He learned 2 more animal sounds over the past week.  So now he can tell you what sounds 16 animals make.  He's learning to use his words instead of whining, too.  The hardest thing about his whining is not the noise, it's not knowing what he wants.  I'm trying to get him to understand that & I think he's getting it.  For example, he is completely obsessed with water.  If he sees it, hears it, or thinks he can get in it, he wants it!  If you've ever seen 'Your Baby Can Read', then you know that in Volume 1 it shows a hippopotamus & the hippo is in the water.  He knows when that segment is coming & he'll rub his hands over his stomach & say "UUUNNHH."  I have tried to tell him that the hippo is in water.  I've tried telling him that the hippo is taking a bath.  I've even learned the sign for water (placing three fingers on your chin).  Nothing seemed to help.  So I decided that maybe I should rub my hands over my stomach & say "bath."  After doing that for a few days, he can now say bath.  He still rubs his hands over his stomach when he says it, but atleast he can say bath instead of just whining.  Wish I would've done that to begin with, but hey, hindsight is 20/20.  When the speech pathologist came, he said that maybe I should also try to teach him sign language just for the words he can't say.  So when I tried the sign for water, he was so confused.  He knows where his chin is, so when I would do the sign, he would point to his chin & say "chin."  He had no idea why I was showing him water & pointing to my chin.  Teaching him sign language may be confusing him, I really don't know.  The signs that I've tried teaching him have made him look at me with a puzzled look & it gets us no where.  I don't know.  I know kids younger than him that can sign, so I know he's not too young.  He's talking, we understand him, he's getting his point accross.  I want him to be able to talk & sign, but I don't want to confuse him.  So, to add sign language or not to, that is the question.
     He just amazes me every second of everyday.  I think he has taught me so much more than I can ever teach him.  God knew what He was doing when He gave me Troy.  He's such a blessing & I am continuously thanking God for him.  Words can never describe the love that I feel for my boys, BOTH of them!

Wednesday, April 20, 2011

Some facts can be misleading...

     When I found out that it was a possibility that my baby was going to be born with Down syndrome, I began researching it.  Here are the facts that I found.
Down syndrome is a genetic condition in which a person has 47 chromosomes instead of the usual 46.
In most cases, Down syndrome occurs when there is an extra copy of chromosome 21. This form of Down syndrome is called Trisomy 21. The extra chromosome causes problems with the way the body and brain develop.  Down syndrome is the most common single cause of human birth defects.

Symptoms

Down syndrome symptoms vary from person to person and can range from mild to severe. However, children with Down syndrome have a widely recognized appearance.  The head may be smaller than normal and abnormally shaped. For example, the head may be round with a flat area on the back. The inner corner of the eyes may be rounded instead of pointed.

Some of the common physical signs include:
  • Decreased muscle tone at birth
  • Excess skin at the nape of the neck
  • Flattened nose
  • Separated joints between the bones of the skull (sutures)
  • Single crease in the palm of the hand
  • Small ears
  • Small mouth
  • Upward slanting eyes
  • Wide, short hands with short fingers
  • White spots on the colored part of the eye (Brushfield spots)
Physical development is often slower than normal. Most children with Down syndrome never reach their average adult height.  Children may also have delayed mental and social development. Common problems may include:
  • Impulsive behavior
  • Poor judgment
  • Short attention span
  • Slow learning
As children with Down syndrome grow and become aware of their limitations, they may also feel frustration and anger.  Many different medical conditions are seen in people with Down syndrome, including:

Signs and tests

A doctor can often make an initial diagnosis of Down syndrome at birth based on how the baby looks. The doctor may hear a heart murmur when listening to the baby's chest with a stethoscope.
A blood test can be done to check for the extra chromosome and confirm the diagnosis. Other tests that may be done include:
  • Echocardiogram to check for heart defects (usually done soon after birth)
  • ECG
  • X-rays of the chest and gastrointestinal tract
Persons with Down syndrome need to be closely screened for certain medical conditions. They should have:
  • Eye exam every year during infancy
  • Hearing tests every 6 - 12 months, depending on age
  • Dental exams every 6 months
  • X-rays of the upper or cervical spine between ages 3 - 5 years
  • Thyroid testing every 12 months

Treatment

There is no specific treatment for Down syndrome. A child born with a gastrointestinal blockage may need major surgery immediately after birth. Certain heart defects may also require surgery.  Obesity can become a problem for older children and adults. Getting plenty of activity and avoiding high-calorie foods are important. Before beginning sports activities, the child's neck and hips should be examined.
Behavioral training can help people with Down syndrome and their families deal with the frustration, anger, and compulsive behavior that often occur. Parents and caregivers should learn to help a person with Down syndrome deal with frustration. At the same time, it is important to encourage independence.
Adolescent females and women with Down syndrome are usually able to get pregnant.
If the person has any heart defects or problems, check with the physician about the need for antibiotics to prevent heart infections called endocarditis.  Special education and training is offered in most communities for children with delays in mental development. Speech therapy may help improve language skills. Physical therapy may teach movement skills. Occupational therapy may help with feeding and performing tasks. Mental health care can help both parents and the child manage mood or behavior problems. Early intervention is key to allowing people with Down syndrome to reach their full potential.

Expectations (prognosis)
Persons with Down syndrome are living longer than ever before.  Although many children have physical and mental limitations, they can live independent and productive lives.  About half of children with Down syndrome are born with heart problems, including atrial septal defect, ventricular septal defect, and endocardial cushion defects. Persons with Down syndrome have an increased risk for certain types of leukemia.  The level of mental retardation varies from patient to patient, but is usually mild. With the proper care, people with Down syndrome can lead normal, happy lives.

Complications

  • Airway blockage during sleep
  • Compression injury of the spinal cord
  • Endocarditis
  • Eye problems
  • Frequent ear infections and increased risk of other infections
  • Hearing loss
  • Heart problems
  • Gastrointestinal blockage
  • Weakness of the back bones at the top of the neck
     That was taken straight off of a website.  Now that I am a mother of a child with Down syndrome, I have learned a great deal about this extra chromosome.  The little something extra doesn't take away from who my son is & will become, it adds to it.  It's true, my son does have some of the characteristics listed above.  For example, he has a heart condition.  He has the beautiful almond shaped eyes, small ears, flattened nose, & wide, short hands.  But if you look at a picture of my husband at the age Troy is, they look identical (with the exception that Troy has my blue eyes).  Troy is extremely intelligent, not dumb, contrary to what some people might think.  For example, we were at Chancey's ball game last night.  He made friends with 2 of the cutest little girls...they played ball together.  After they stopped playing ball, he saw one of the little girls running by.  He stood up & said "ball!"  I turned around & saw the little girl he was playing with, only she didn't have the ball.  But he remembered that she was the little girl he was playing ball with, & he wanted me to know that he knew that.  He may not have been able to out right tell me what he wanted to say, but I knew what he wanted to say.  So how can he be labelled as stupid, or dumb?  I know that one day, he'll be on the same page as kids without delays.  He's already saying some 2 & 3 word phrases & we work constantly on skills he's lacking.  But it frustrates me, & other parents of kids with Down syndrome, when other people put them in a catagory.  You shouldn't look at a person & judge them based on 'what you know.'  Because maybe, just maybe, you don't know the entire story.  Just because someone has the physical characteristics, doesn't mean that they are incapable.  You can see a typical person & they may have the highest IQ ever recorded, but how do you know that by looking at them...or they may be the most ignorant person ever, how do you know?  You can be the most beautiful person on the outside, but have the most unattractive personality, or vise versa.  You wouldn't want someone to look at you & judge you, so why would you judge someone else?  Get to know someone before you form an opinion. 
     Now, I challenge you.  Look at my son.  What do you see?  You see a little boy with Down syndrome.  Okay.  Now, what do you SEE?  Do you see that he loves with his entire heart?  Do you see that he has had 3 heart surgeries & has had to fight for his life more times than we'd like to even consider at the short age of two?  Do you see that he's trying to be as normal as possible & that he has more determination in his pinky than I have in my entire body?  Do you see that he he's very intelligent & has his own way of expressing himself?  Do you see that he loves water & would be in the bath tub or swimming pool 24/7/365?  Or that he loves music & to be sung to?  Do you see that he loves to be read to...that he loves popcorn & blackeyed peas...that he knows if I get my shoes on, we're going "bye bye?"  He'll wave & say "hi" to anyone & he'll even blow them kisses, but that person takes one step closer to him, he'll turn away & shake his head "no."  But if he knows you, he'll go straight to you & love on you.  He knows the people he loves & when he sees them, he'll say their name.  He is very picky & wants what he wants, when he wants it.  But who isn't?  So just because he has Down syndrome, doesn't mean that Down syndrome has him.  That doesn't mean that he can't think for himself, do for himself, or speak for himself.  Yes, he needs more assistance right now.  He's not at the level that kids without Down syndrome are, but he's getting there.  One day, he will be caught up & I know that the world is a better place with him in it...I know because he has made me a better person.  I have learned that God didn't put Troy here to be a student, He put him here to be a teacher.  So, please, let him teach you. 

Monday, April 18, 2011

My very own forever four leaf clover!

     When I look at Troy, I am reminded of a four leaf clover.  Picture in your mind a four leaf clover, then picture my son.  Do you see what I see?  Both are perfectly beautiful, yet rare.  They have just a little something extra that makes them unique.  Seeing them brings joy, excitement, & pride to our lives.  God put them both here to make our surroundings more spectacular & extraordinary!  The only difference is that many people DO see the beauty in a four leaf clover, but fail to see the same beauty in people with Down syndrome.  The extra leaf is a symbol of luck, while the extra chromosome is viewed as an imperfection & bad luck or as a curse.  Many people search for the four leaf clover & when they find it, they're showing it off & so proud of their finding.  But when we're blessed with that "something extra" in a person, we tend to look at it as something unwanted.  I'm proud of that extra chromosome that Troy was blessed with...it makes him who he is!  I see it like this:  God searched all over Heaven to create a flawless four leaf clover to give to me & I know that I'm the lucky one!  He gave me my very own forever four leaf clover!  So when you see someone with Down syndrome or a four leaf clover, remember that the something extra is what makes it completely perfect.  After all, God doesn't make mistakes! ♥

Sunday, April 17, 2011

SOAP BOX

     I have to get on my soap box once again.  I have come to realize that most people in this world are clueless about Down syndrome.  It breaks my heart knowing that so many people are uneducated.  People can be so harsh & quick to judge someone that they know nothing about.  A lot of things are stereotyped, Down syndrome is a prime example.  People THINK that just because someone has Down syndrome that they are stupid.  That they can't think for themselves, like instead of being born with a little something extra, they were born with out a brain.  I don't know every person with Down syndrome, but I know my son, & he's far from being stupid.  Just because people with Down syndrome learn differently & need a little extra help in the beginning, doesn't mean that they're stupid.  It's just wrong to judge a book by the cover.  So before you degrade someone because they are a little different, ask yourself this, "am I perfect?"    I can answer that question, "NO!"  However, I can guarantee you this, someone thinks they are.  I know that society puts a label on people that are slightly different.  I am well aware of this.  But you can help rip those labels off by learning the facts.  Not the ones in the books or on the websites, but by getting to know someone with Down syndrome.  Volunteer at the Atlanta Down Syndrome Association or Challenged Child.  Or better yet, want to see perfection at its best?  Come visit the Forrester house.  Troy will knock your socks off & you'll have a different perspective, I can assure you that.  You'll be be amazed.  Okay, getting off my soap box now.

Friday, April 15, 2011

Too blessed to be stressed!

     I've always heard the old adage, "things happen in threes."  I can think back throughout my life & remember times when that saying was true, but for bad things.  But over the past 24 hours that has been true for good things!  :)  My family has had our share of unfortunate happenings throughout our journey of life, but I wouldn't change a thing.  Our trials & triumphs have brought us here, to today, & I don't think we could possibly be any happier.  Nope, we haven't won the lottery.  Nah, didn't buy a new house or get a new car (yet).  Those material things aren't important to me.  It's like I've always told my husband.  "I don't care if we live in a cardboard box & ride bicycles, as long as we have each other & we're falling more & more in love with each other with every passing second & we have our kids by our side, I'm happy."  And that's the truth.  Everything else is just a bonus. 
     I know, I know.  You want to know the 3 good things, right?  Well, let me give you a little run down first.  If you've been following my blog, then you know that I struggle with knowing that I'm providing the best services for Troy.  With our insurance, the best therapists for him are out of network & my insurance company won't deny services so his secondary insurance can pick up any costs....therefore he can only receive one therapist right now.  We use Babies Can't Wait, which is the early intervention therapy company in our area.  They are paying, out of their pocket, for Troy's PT right now (And I learned yesterday that once he's considered to be a walker, he won't receive PT anymore...we have to choose if we want him to have OT or speech after that.).  I knew that once he turns three in January that our services with BCW will end & we either have to find our own therapists, put him in the public school system, or send him to Challenged Child.  I want what's best for Troy so I don't know which route to take.  His PT is the best & she gave me a few pointers & suggestions on what to do next.  She has worked with him since October of 2009 & she has watched him grow into who he is today.  I feel like I can openly talk to her & she'll honestly tell me her opinion.  So over the past few weeks I have told her that I really feel like Troy needs to have speech therapy.  But I don't want sign language shoved down my throat....been there done that.  (In May of last year, we found a local therapy service that would do OT & speech back to back twice a month.  So I took him there for about two months & instead of progressing, he was regressing...& they only did one hour, 30 minutes for each service.  It was AWFUL!  They didn't know how to work with a child with DS, they never had worked with one.)  She told me that she could get a speech pathologist to come out with her to do an evaluation/coaching visit.  So, yesterday during his PT session, the speech pathologist came out to evaluate Troy.  I was so excited to have him come & tell me how to teach Troy the correct way & give me a few pointers.  I wanted to know if I needed to be teaching him sign language.  I'm not against him learning it, but he's so verbal that I feel like he can talk vs. signing.  Anyway, he evaluated Troy & was amazed at how well he verbalized & listened.  He said that Troy had awesome tongue control & that was unusual.  So here's the good news.  He said that I was "doing an extraordinary job."  He said that Troy is the best listener, he's attentive, intelligent, & he is comprehending what we say.  Oh what a sigh of relief!  I was so afraid that he was behind because he has missed out on speech therapy.  He was astounded that Troy could say over 30 words, can point to most of his body parts, & knows the sounds of atleast 15 animals.  I told him that if Troy sees an animal, he makes the sound that animal makes instead of saying what the animal is, & that concerned me.  For example, if he sees the horses outside, instead of saying "horse" he'll make a horse sound "neigh."  He said that was remarkable & that is the first step, that he's learning concepts.  He said to keep on showing him the animals & repeating the sounds they make, he'll get it.  He said that it's great that instead of him just repeating the words that we say he actually knows what we're saying.  For example, if I say "where's Elmo" he'll look for Elmo & says "Elmo" vs. just saying the word Elmo.  He watched Troy follow commands & verbalize.  He said to keep up the good work!  Keep up the good work, not you're doing this wrong or do this instead...just keep up the good work!  He's coming back for two more visits to see his progress so he can give us the best speech therapist once PT is finished :(.
     Good thing #2:  During his PT/speech evaluation, Troy stood up & took 10 steps UNASSISTED!  He did it several times during his session.  After everyone had left, I closed the door & went down the hall to let the dog out of Chancey's room.  As soon as I got in the hall, I heard Troy say, "Mama."  Then the next thing I heard was my husband say, "Kelli...oh my goodness, you missed it!  When you walked in to the hall Troy let go, said, Mama, & walked all the way to me!"  (which had to be 12-15 steps)  How awesome is that?!  Maybe he'll be walking by Easter, like his PT said.
     Good thing #3:  My husband, Mack, applied for a first shift job last week.  He interviewed for that job yesterday morning after work.  He texted me last night around 11:30 & told me that HE GOT THE JOB!  Oh, my prayers have been answered!  And he won't be taking a pay cut...he won't get a raise, but no pay cut!  His supervisor told him that he could top out on pay where he is now (on 3rd) & make more than the first shift job will pay.  He knew that Mack wants to make the most $ since he's the only one working...hoping that would keep him on third.  But little does he know, I could care less about the pay.  I'd rather have my husband on first shift.  No one seems to understand where I'm coming from though.  Everyone says, "what's the difference, you see each other the same amount of time."  Uh, no, we don't!  If he works 6 days a week, which he has been for almost 9 months now, he comes home on Saturday morning at 7 a.m.  If he stays up all day, to be with us (which he usually does), he's dead tired & moody.  If I tell him to just go to bed & rest some, he won't.  Then he sleeps all night Saturday, gets up on Sunday to go to church with us, eats lunch, then it's time to sleep until supper.  Then he leaves at 9:30 p.m. to go to work again.  If he's on first shift & he has to work 6 days a week, then he'll be home at 3:30 p.m.  We get the rest of Saturday together & ALL day on Sunday together.  And he's more productive at home when he's on first....he helps me so much more vs. third shift. 
     Needless to say, I'm absolutely glowing & have been since yesterday afternoon!  It's encouraging to receive a pat on the back every now & then being as I'm constantly criticized.  It's a fact, I'm too blessed to be stressed!  :)

Wednesday, April 13, 2011

Watch what you say!

I’d like you to choose carefully, the words you might say
When you see my baby in the general day-to-day.  
He is a darling  baby boy who happens to have Down syndrome
The result of a small chemical accident and an extra chromosome.  
But don’t call him... ‘Downs Baby’, ‘A Downs’ or ‘Downs Boy’,
It makes him sound like a different breed, an animal or stuffed toy!  
And please don’t make judgements like a book by its cover,
Like all other children, he’s very different from any other,
Don’t offer some generalized statement that’s outdated and might go…
‘He’ll be so loving and cuddly’. How on earth do you know?!  
It might not be easy to say words that don’t offend,
So just be honest and considerate so together we can mend
Society’s choice of words – because we need to emphasize
That your words do make a difference to the way we feel inside.  
So let’s get it right.  He is a baby WITH Downs.
Not a ‘Downs baby’. Remember, other way round!!  
He’s a human, like you, with just a little bit more...
And if we were all the same, wouldn’t life be a bore?  
Do please share this poem with others that you know
So down the road to ‘thoughtful language’, we all can humbly go.  
And if you‘re a professional or involved in any way,
You’re the forefront of our campaign. Get it right.   WATCH WHAT YOU SAY!  
~Adele Rees 2006  

Friday, April 8, 2011

God's gift

You don't choose your children, they choose you.  They're God's gift to you.  Isn't it awesome to know that God trusts us enough to give us these precious souls?!  He has given me two of the most perfect boys ever made.  Chancey is growing up to be an awesome young man.  I am so proud of how mature he's becoming...it's hard to believe that he'll be starting high school in a few months.  He's doing well in school, playing baseball, & he's such a wonderful big brother.  He's completely the opposite of what I envisioned a teenage boy to be.  He's respectful, honest, trustworthy, intelligent, & a fantastic advocate for Down syndrome.  He's not jealous or selfish one bit...he's so amazing.  Troy is such a remarkable boy.  He is so loving, happy, smart, & just a ray of sunshine.  He's such a fabulous toddler that it's hard to believe that we're in the "terrible twos."  He's learning more & more with each passing day & some of the things he does just melts my heart.  They both love with their entire heart & have such a lovable personality.  They both strive to make everyone laugh....I have two comedians on my hands here!  They are so much alike, yet so different.  I feel so blessed that they chose me to be their mother.  I'm not going to ever make them feel any other way.  :)  I want them both to know that I love them with my entire heart & soul, FOREVER. 

Tuesday, April 5, 2011

Birds of a feather flock together

     It is said that "birds of a feather flock together" & I am learning just how true that is.  It's a sad fact that some people just want to live their lives in misery & harbor hate.  I know that I am supposed to forgive & forget, but it seems like everytime I do, something else happens & we're back to square one.  I have tried to be the better person & move on, but every single time I do, they let me down over & over again.  I try & try but if they aren't willing to let it go & move on, then how can we all get past it?  And how can you forgive someone that doesn't want to be forgiven or want to try to make things work?  I am so frustrated at the whole situation & I am so tired of letting them get to me...allowing the situation to rule my life.  I have been so aggrevated at them that I have allowed them to steal my joy & take out my frustrations on the people I love the most.  I think that now is the time to just let it go, let them go.  I have to wipe my hands of all of this drama, all of this negativity.  I can forgive them, but I just can't allow this evil in my life to run a muck.  I am a happy, grateful, blessed woman & I want my life to reflect that, not harbor hate, sin, & evil.  :)  As the saying goes:  There comes a time in life, when you walk away from all the drama and people who create it. You surround yourself with people who make you laugh, forget the bad, and focus on the good. So love the people who treat you right, pray for the ones who don't. Life is too short to be anything but happy. Falling down is a part of life, getting back up is living!  I am choosing to get up, dust myself off, & surround myself & my family with people who LOVE us.  If we're not a priority in your life, you will not be an option in ours!  Life is too short to be anything less than happy & I deserve to be just that, HAPPY!

Monday, April 4, 2011

Everything happens for a reason!

     When I found out that my baby had a slim chance of having Down syndrome, I began researching it constantly.  I wanted to be prepared in case he did have DS & I wanted the facts.  As I researched DS, all I could find were statistics.  I wanted to know what I needed to learn in order to give my child the best life possible.  But I couldn't find anything.  And the facts were scary & overwhelming.  Then I found out that he did, in fact, have DS & I was heartbroken.  I wasn't sad that he'd be different, I was heart broken for him.  I know all too well how people can react when they find out your child is different.  I know how cruel kids & even adults can be to other kids, much less a child with special needs.  I knew that my son would be called the "R" word, mocked, & teased...that's what hurt.  I realized that I needed to turn it over to God, because He would prepare me, He would be the one to help me be the best mother possible.  Just then, a calm came over me & I knew that I'd just know what to do when Troy came.  But none of the materials I read would prepare me for this.  I never thought for a minute about how typical he'd be.  I never realized that he'd but more like us than different.  As I looked at him for the first time, I didn't see the Down syndrome or his heart condition.  I saw a perfect baby boy that looked just his daddy.  I saw his beautiful black hair, perfectly shaped face, gorgeous
almond shaped blue eyes, chubby & kissable cheeks, pouty lips, tiny & remarkable ears, BIG feet, & crooked fingers just like his mama, brother, & Papaw.  Other than his heart, I didn't think about the DS.  He was hitting his milestones on target until his first heart surgery, then he slowed down.  But that was okay...it's fine by me that he's a little slower in hitting his milestones, that just means he'll be my baby for longer.  :)  None of the things I read told me how he'd fall asleep in a few seconds of you stroking his hair, just like his daddy & brother.  They didn't tell me that he'd be a picky eater, just like his daddy.  They didn't tell me that he would have this unexplainable, inseperable bond with his brother or that he'd suck his thumb.  I didn't know he'd love playing pee-pie with his daddy or grandpa's hat.  Nothing told me that he'd love to play with his daddy's facial hair or that he'd love Elmo.  No one told me that he'd love to play ball, be read to, swing, ride in his car, & to be sung to.  All of the books said that he'd be slow to learn, wrong!  He's so smart.  Many of the materials say that he may not talk, but he does.  They are right in one aspect, that he's slow to grow....I do wish he'd grow a bit, just so his heart would have a chance to grow...then maybe he wouldn't need a valve replacement.  I've been told that early intervention is the key.  He has to have physical therapy twice a month, & he really needs to have OT & speech as well, but we can't find one that has worked with kids with DS that's in network for our insurance.  I do work with him most of the day, every day to help him in all aspects.  I try to teach him everything I can, but he's the one teaching me each & every day!  He has taught me so much in his short little two years of life.  Being a mother, I have learned a lot from my children.  They have shown me how to be more patient, how to love unconditionally, & how to slow down & enjoy the moment.  They've taught me that material things mean nothing, & instinct means everything.  I've learned to see the beauty in everything & that everything happens for a reason.  They make me want to be a better person.  I can be having a horrible day & just seeing one of them smile will melt all the stress away.  They've taught me forgiveness, sacrifice, strength, happiness, compassion, & much, much more.  I look at them & see just how blessed I am.  I don't need a fancy house, expensive cars, tons of money, or any material things as long as I know I'm saved by the grace of God & have the love of my husband & our kids, that's all I need!  My life is perfect just the way it is.  I wouldn't change one thing.  Nope, I wouldn't take away Troy's extra chromosome...I would take away his heart condition, & that's it.  Troy is perfect the way he is.  Some people may see him as a burden or a curse, but I see him as a blessing sent straight from God.  I see it as God giving me a compliment, because this is the best job in the world.  He trusts me with two special, precious souls & I thank Him every second for trusting me with them.  I just wish that I could talk to others in the same situation I was in nearly three years ago...hearing that my son has DS.  I know that I could save the lives of some perfect kids by showing these expectant parents that this diagnosis is just an extra blessing from God.  If they spent 15 minutes with Troy, their minds & hearts would be changed.