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A Year Ago Today

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I’ve got butterflies in my stomach as I sit down to write this……A
year ago today, I sat in the same cozy chair that I’m in right now in
my living room and answered the phone. It was the nurse from my OBGYN
who called to let me know the results of my quad screen.

“1 in 1000 chance of neural tube defects, (Great!), 1 in 1000 chance
of spinabifida, (Wonderful)……{sigh over the phone}……and a 1 in
43 chance for Down Syndrome.”

“Ummm, what? Could you say that…did you mean…..what did you say
again?” {My heart was in my throat, beating faster than ever
before….}

“The quad screen tested a 1 in 43 chance for your baby to have Down
Syndrome….what we’re going to want to do now is get you in for an
ultrasound as soon as possible. Hold on while I call down to see when
we can work you in. Don’t worry, Emily. These tests are wrong 90% of
the time.”

Seth says there's nothing to fear

Fear. Panic. Crying. Sobbing. Weeping. I have to talk to Joel.
This is a mistake. This isn’t happening. This is crazy. Things like
this don’t happen to me- it happens to someone else. Why would God
let this happen? We serve in our church week after week. We’re good
people. We do all the right things and try to teach our daughter the
same. Our kids are supposed to grow up to really make an impact in
this world with their educations and willingness to serve God and love
others. This wasn’t in my plan- when I dreamed of how my life would
go, this wasn’t even a thought. How am I supposed to sleep until I
know for sure that my baby is okay? It’s okay- I just know this has
to be a mistake. Why did I even take that stupid test to begin with
when the results are so often wrong? Who can I call? I don’t know
anyone else who’s had this happen…..or do I and people just don’t
mention it? I need to talk to God- if I pray hard enough- if I beg
Him, this will go away. He always works things out for me, so He’ll
take this burden off us.

You know how it turned out. Seth.

Joy.  Laughter.  Peace.

We’ve got him. We’re living with Down Syndrome every day. And you know what? It’s not scary. It’s not bad. It wasn’t a curse for something we did wrong. It was God’s plan for our lives.

It was who God created Seth to be. We’re still
serving in our church week after week because God is faithful and
deserves our honor and praise. We’re teaching both Seth and Ella to
love God that way. Seth will grow up to make an impact on this world-
in fact, he already has. This wasn’t how I planned my life- it’s way
sweeter with Seth in it. I sleep great at night because we’re in the
middle of God’s plan for us. Seth wasn’t a mistake. I’m glad I took
the test because it forced me to rely on God a whole lot more than I
did before. I know a lot of people who are now walking this road with
me and their precious, perfect little children. And I still need to
talk to God- every day, every hour, every minute. If I pray hard
enough, He’ll continue to lead my heart. He always works things out
for me for the good, and Seth is proof of that.

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Weekend Update

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Garage sale all day Saturday morning and then Joel and I threw up fairly consistently from midnight to 6 am on Sunday morning.  We are thinking about sending a thank you note to Whataburger, as that’s the only thing we can trace it back to.  PTL, neither of the kids got sick and no one we know is sick…..so it had to be something we ate, right? UPDATE: ELLA IS NOW SICK. We think it was indeed a bug. Pray that Seth avoids it.

We are thankful when everyone is healthy

MUCHOS GRACIAS to Nana for coming to help with the babies, cleaning, laundry, etc.  It would have been so hard to make it through all of that without help.  The thought of buttering a waffle for Ella still makes my stomach turn flips and I just praise God that I didn’t have to do it.  Really and truly, I felt that bad.
Here are some ways we can praise the Lord through the weekend, though it ended poorly:
-Baby weight is offically gone, thanks to E. coli!
-The kids didn’t get sick.
-Nana took care of the kids so we could sleep.
-We made $168 at our garage sale on Saturday.
-All closets, drawers, the pantry and attic are cleaned out and ready to be moved.
The MOST important part of this post is to ask for your prayers for Seth on Tuesday morning at 8:15.  He’ll have a day surgery to have tubes placed in his ears.  As Nana says, “Seffy is getting new ears on Tuesday!”  Pray all goes well and that surgery is routine.  Pray they can find a vein for the IV with no problems (last surgery, he had been poked all over), and pray that he wakes up without pain and nausea.  Pray for the doctor who performs the surgery- he’ll also being scoping his lungs to check his air passages before we get into cold/flu season.  The reason is that DS kids often have smaller, more constricted air passages, and the scope will give the doc a better idea of his passages when they’re healthy, should he need to prescribe breathing treatments or something else for the fall.  Pray against anxiety for mom and dad.  Thank you, thank you for your prayers and concern for us.  It is so humbling and so encouraging to me and Joel that you care so much.  We’ll let you know about “new ears” tomorrow!
Let everything that has breath, praise the Lord!  Em
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Progress Report

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Just an update on Seth's progress- our little fella is doing so well!  Praise God for His continued blessing on us with healthy children.  It seems as though I have one or two appointments every week, but I continue to remind myself- Seth is healthy, much of it is proactive measures, things could be much worse!

Today is Seffy's 5-month old birthday.  He celebrated by getting his first drink of water out of mommy's cup.  It was cold and surprising to him, but I think he enjoyed the experience.  Ella, daddy and I got a kick out of it for sure!  Ella continues to tell us, "He can't eat that!  He's a BABY!  When he gets bigger and bigger and he has teeth and hair, then he can eat it!"  Thank you, Ella…  

Anyway, I took him to the pediatrician today for another quick check and vaccination.  We're spacing his vaccines out to one a month rather than bundling them to 3 and 4 at a time.  Sure, he may be 12 by time we're done with them, but Joel and I've read a lot of information about developmental side effects in giving multiple vaccines at once, so we are erring on the side of caution.  He did great- no tears and a sparkly silver bandaid that Ella kept her eye on all day.  Did I mention he's now 16 lbs?  And his sister was 18 lbs on her first birthday….looks like he'll have her beat!

Before our hurrication with Ike a couple of weeks ago, we'd decided to make an appointment for Seth with a pediatric ENT.  Our pediatrician recommended a group in the med center….I liked the office and our new doctor.  I was prompted to make an appointment when I learned through some research that kids with Downs can have fluid in the middle ear that may never turn into an ear infection, but could cause significant hearing loss. It would need to be checked regularly due to very small ear canals and poor drainage as a result (remember, his ear canals are about the width of a coffee straw).  

Not to my surprise, Seth did have fluid in both ears so we went to see an audiologist who performed a quick hearing test (amazing that they can do this on babies).  Sure thing, Seth failed the hearing tests in both ears; both the audiologist and ENT assured me that since Seth passed his newborn hearing screen, it is most likely that this is a temporary hearing loss that will be easily corrected with treatment.  

The ENT praised me for being a proactive parent in researching health issues and getting things checked out.  I then praised the Lord for leading me to that information.  He said he's had many toddlers with Downs in his office with the same problem who were not yet speaking because they've never been able to hear well.  We know that Seth has some hearing right now because we've seen him react to loud sounds and he is starting to mimic some sounds I make.  But, when it all comes down to it, the boy has got to hear well, so he'll be getting tubes put in on Oct 21.  This is something we'll probably keep doing with him as they fall out until he's about 4 or 5 and has grown out of it.  I just praise God that he's healthy and has had no ear infections and that our sweet boy will gain full hearing again in just a few weeks!

Seth's physical therapy is going well.  He's starting to raise up to a sitting position and is wanting to sit up much of the time if he's awake.  We're working on building stamina in his legs, neck and torso so that he will be ready to stand when the time comes!  We're also working on getting him to roll from back to tummy and he's almost there.  He loves the Bumbo chair and Ms. Linda (therapist) said he's making great strides and could be the model/demo baby at their next training because he is doing so well.  Just name the time and place, Ms. Linda, and I'll have him there…..

I'm thinking about checking out the local chapter of the National Down Syndrome Society.  Saw some pics online of cute kiddos and I know just talking to other parents could be a great learning experience for us.  These kids are a rarity and I wonder if there are any other babies his age that he might grow up with as a special buddy.  

I love him more and more and you were right mom, I could love my second child just as much as my first.  I'd take 10 just like him if I could……dr appointments and all.  I love this child and the questions about his future don't scare me anymore.  He's just mine.  My Seth.
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Video: Roll Over Day for Seth!

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This was the day that Seth mastered the roll over from tummy to back.  He did this multiple times.  I caught this one on film.  Rejoice with us!  He’s exceeding our expectations!

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Biggie Boy!!

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He can already stack blocks! 🙂

Seriously, could he be any cuter?  Seth had his 4 month check up today and he was 14 lb, 7 oz and 26 inches long.  He was 12 lb, 12 oz this time last month and grew an inch as well.  Looked back at Ella’s baby book and he’s the same size she was at 6 months!  He’s keeping in the 100% height and 75% weight on the DS charts.  Way to go Seth!

Dr. Shaffer said he was doing really, really well (I can’t hear it enough!).  He is unable to see inside his ears because his canals are so small (think the width of a coffee straw).  Joel and I’ve been reading up on the possibility of fluid standing in the ear drum that may never go to infection, but could impede their auditory learning, so we asked for a referral to an ENT.  The doctor gladly gave us the name of a group of pediatric ENTs at Texas Children’s.  I’ll be making that appointment soon to check him out and keep a look out for it.  We’ve just read so much about how important it is that they hear clearly in the first two years, as that makes a big difference in speech and word patterns with therapy.

We have an appointment with a pediatric cardiologist tomorrow at 1pm at Texas Children’s.  The doctor will read through his ecocardiogram from the NICU when he was born and explain things to us.  Shouldn’t involve testing.  Once again, there’s not been anything that would lead us to think something is wrong with his heart, but we’ve read and been told by our pediatrician that it would be wise to have a full work up done.  The report did name some “minor abnormalities” so we want to know what they are and if there are any long-term implications.  I feel a little anxious about it and will be glad to check that off the list.  

While we were in the waiting room at the pediatrician today, we met Cody- a little two-year-old boy with Downs.  He was PRECIOUS!  Cody was running all over the waiting room, doing typical toddler stuff.  I started talking to him and he immediately grabbed his cup of milk and ran to get in my lap where he hugged on me and Ella and sat with us to read books for quite a while.  He was with his dad and grandfather and I was able to compare notes with his dad on ECI work, therapies, etc.  Cody didn’t have many words yet, but they were doing sign language with him to communicate, which I plan to do with Seth.  He was a ray of sunshine and such an encouragement to me to see a very normal little boy running around in his high top Air Jordans, greeting people at the door with a toothy grin, sharing his toys with Ella, picking up things that dropped on the floor and trying to escape from his daddy!  Glad too that our pediatrician has him just two years ahead of Seth….along with several other DS kids from what Cody’s dad said (from what I’ve read, it is rare that a pediatrician would have more than one or two DS kids in a lifetime career).  

I was able to share with him how the Lord has used Seth in our lives.  Cody’s dad said they were surprised at birth with the DS diagnosis and from the way he talked, they would test on any subsequent pregnancies so they could “make a decision” if another child had it.  I told him that we had a pretty good idea he had it and there was never any decision for us- we were going to keep him because it was God’s plan.  “Oh really?!  Wow….that’s…..wow!” he exclaimed.  I shared with him the significance of Seth’s name- “chosen by God.”  I was blown away that this seemed to be new information to him- as if he’d never thought of it as a part of God’s plan.  I guess it’s so easy for people like me to be in my church bubble that I fail to remember that the majority of the world doesn’t think like Joel and me.  Anyway, Cody’s dad ended up agreeing that it was all part of God’s plan.  I knew the minute I saw Cody that the Lord made a divine appointment for us in the waiting room that morning….and sure enough, a seed was planted.  I just had that overwhelming feeling from the Holy Spirit that I needed to start a conversation with this family and I’m so glad that I did- everyone in the waiting room had the chance to hear that conversation too and I hope it spurred them on to think if anything else, about how precious these little lives are that the Lord has entrusted us with.  

So, now I’ve added sweet Cody and baby Trig to my prayer list…..a couple of Seth’s “brethren” as Joel says.  I just can’t tell you how excited I am that Trig Palin’s story has been making the news recently and we’re praying that the Lord uses it to provide more and more opportunities for people with DS and other disabilities.  I don’t think I would have given it a second thought this time last year…..my, how things can change so quickly.  Thank you, Lord…I wouldn’t go back for anything.

Be blessed and love God-  Em
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Seth is 2 Months Old!

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Can you believe it? Seth is already 2 months old! Time flies faster with the second child I think. We have enjoyed every minute with him- and I genuinely mean that. He just couldn’t be a better baby and everyone that’s spent any time around him says the same thing. He’s happy, content, smiley…..just all the things a mommy and daddy could ask for.

Nice lips Seth

We had a big day of appointments this week. Seth had a check up on July 1st and the doc said he looks great! He weighed 11 lb, 1 oz and was 23.75 inches long….a whopping 1/2 pound and 1/2 inch longer than his sister at this age. On the “normal” kid scale, he’s in the 50th percentile for weight and 75th percentile for height….but on the Down Syndrome scale, he’s in the 75th percentile for weight and 100th percentile for height! Translation: he’s a healthy, big boy! With Joel’s and my height, we’ve thought that if any DS kid has a chance at being taller than average, it could very well be our Seth! The doctor commented again and again on his good muscle tone and said that he looks right on track with other children his age right now. He was amazed that Seth had already rolled over and said the future seems to be very bright for our boy. You know, Joel and I just can’t hear that enough. I thought my proud heart was going to burst out of my chest!

Later that afternoon, we had our first IFSP (Individualized Family Service Plan) meeting with ECI (Early Childhood Intervention). ECI is a state-wide program provided to families with children under the age
of 3 who may have developmental delays. Two ladies came to the house- one was an occupational therapist and the other was a speech and developmental specialist. They took time to play with Seth and exercise him a little to assess his current development. The conclusion they came to was that Seth is right where he needs to be. Once again, Joel and I can’t hear that enough. They looked at the following areas of development: cognitive, gross motor, social, fine motor, language (expressive and receptive) and self-help. For example, because he coos and makes grunting sounds, he gets an “A” in language. He is an eager eater, so that’s another “A” in self-help. Cognitive skills have to do with tracking toys, interacting with people, etc. It is such a meticulous process, but we’re so thankful for the help, as we are on board with doing anything and everything we can to help him along. Ella liked the ladies that came and they were equally receptive to her curious interruptions. Our plan going forward will be a couple of appointments a month with the physical therapist to make sure his leg/hip/upper body muscles are growing and forming as they should be to prepare him for sitting up and crawling.

Overall, last Tuesday was mentally exhausting, but once again, Joel and I were praising God over and over to hear that Seth is absolutely thriving and doing well. My favorite thing about this little guy right now is all the smiles. He knows his momma like no other and I can actually see him light up once I’m in sight. His little eyes squint and turn into little rainbows when he smiles- and he gets little dimples around his mouth just before he breaks into a big, gummy smile. OH! I’m head over heels for him.

Thanks as always for all the prayers and words of encouragement. God is good and faithful to provide at all times.

Em

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Wow! Seth just rolled over!

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I’m not sure if this is a fluke, but Seth rolled over from his front to his back about two minutes ago!! Emily asked me why I flipped him over when she came back in the room, and I told her that I hadn’t moved from the chair while I was reading something.  We are amazed.  Not bad!  We are over here expecting some delays, and he’s doing this.

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I Am Strong in the Lord

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In the wee hours of the morning following Seth’s birth, I found myself alone and afraid in a cold, dark hospital room. Despite comforting words from nurses and doctors, and Joel being just a phone call away, I don’t think that I’ve ever felt so alienated. My only comfort came from clinging to God’s Word- and I mean that literally. I held my Bible against my chest while I tried to sleep, with fears, anxieties and stereotypes dancing through my head. At 4 am and with no chance of sleeping, all that I could think of was a song written by my sweet friend Star Smith that I clung to during dark days throughout our time of waiting- “I Am Strong in the Lord.” (If it’s not in your iTunes library, I highly recommend you download “I Am Strong in the Lord” by The Smith Band. It will bless your socks off.)

It's just the beginning for Seth and Ella

So, I pulled out my iPod and found the song. Turning it on and just opening the Word of God, I sobbed. I wept. I cried out to the Lord. “Why Seth? Why our son? Why does he have to have Downs? How am I supposed to do this? How can I give him what he needs when I feel like I haven’t even mastered mothering a perfectly normal toddler? How is this going to change Joel and me? How will people treat us? How will people treat him? I don’t want to do this, Lord. It’s going to be hard and it’s going to hurt.” I closed my eyes and with tears streaming I sang these words:

I am strong in the Lord and in the power of His might
I confess that my strength comes from Him.
On my own, I am weak, and I cannot see to fight
But my strength- it comes from the Lord.

I lift my eyes up, where does my help come from?
It comes from the Lord, the maker of heaven and maker of earth.
He is the fortress of salvation for His children as they cry
You are the Lord and you are the strength, the strength of my life.

You held out your hand and your healing power
Causing my eyes to see
You poured out your Word in my darkest hour
Teaching my heart to see

That I am strong in the Lord and in the power of His might
I confess that my strength comes from Him.
On my own, I am weak, and I cannot see to fight
But my strength- it comes from the Lord.

Once again, I felt His supernatural peace and healing wash over me- I felt His presence heavy upon me as I sat there in my bed and just worshipped Almighty God. How humbled I am that the God of all the universe is interested in helping me walk through this. I am not alone- I am not alienated. No, I am even more aware now of His help and His love for me and Seth. I furiously scribbled these words in the back of my Bible, knowing full well these words were from the Lord and were direction for me in how to walk through the unknown days ahead. I searched my concordance for the word “strong” and reflected on the following:

Deuteronomy 31:6- Be strong and courageous. Do not be afraid or terrified because of this, for the Lord your God goes with you. He will never leave you nor forsake you.

Proverbs 18:10- The name of the Lord is a strong tower; the righteous run to it and are safe.

1 Corinthians 16:13- Be on your guard; stand firm in the faith; be men of courage; be strong.

2 Corinthians 12:9-10- “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore, I will boast all the more gladly about my weaknesses so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Ephesians 6:10- Finally, be strong in the Lord and in his mighty power.

Praise you, Lord Jesus! You are my strength- and I don’t have to try to do it by myself. You are my fortress that I will run to every day. It’s neat how the Lord prepared Joel and I for this in the months, weeks and days leading up to Seth’s birth. I was studying in Ecclesiastes 3 the days before delivery- where Solomon talks about how there is a time for everything. A time to weep and a time to laugh stands out (vs 4), appropriately. Surely, the Lord promises us in Psalm 30:5, “weeping may remain for a night, but rejoicing comes in the morning.” With no physical strength to speak up, but certainly a renewal of my spirit by Jehovah Jireh- my provider- I buzzed the nurse and asked to be wheeled down to the NICU at 5 am….I had a very special little guy waiting for his mommy to come sing over him.

Still praising, Em

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What dad is thinking about

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Early days with my little guy

1. I’m grateful for Seth’s continued good health
2. I’m grateful for Emily’s tremendous outlook on the entire situation. She is definitely demonstrating godly character as she depends on the Holy Spirit for strength. She is living out what Paul says in Romans 5:13.

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”

3. I still have a feeling of loss when I think about the things Seth and I may not get to experience together due to some of his potential limitations. I can state it this way:

I have a pretty good idea of things that he and I will probably miss out on. I’ve looked forward to doing some of these things with my son years before I became a parent. However, I’m also sure I don’t yet fully understand what Seth and I WILL get to experience that we would not have otherwise. I confess that all of this thinking is quite selfish in some ways and reveals a lack of trust in God’s plan. So, when I get over feeling sorry for myself, I redirect my energy to praying that Seth would know Jesus and be a righteous man. What could be more fulfilling for a dad than this!

Proverbs 23:24
The father of a righteous man has great joy; he who has a wise son delights in him.

 

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After Seth’s Birth

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I still hold fast to what I wrote on December 16th.

For now, my prayer is that the Lord would give our family exactly what we need each day and that we would trust in Him completely.

Psalm 13:5-6 (New International Version)

5 But I trust in your unfailing love;
my heart rejoices in your salvation.

6 I will sing to the LORD,
for he has been good to me.

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