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Miracle Ear

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I took Seth in this morning for a routine follow-up to check his most recent tube placement from early December.  Along with seeing our ENT at this check up, we were also to meet with the audiologist to check Seth’s hearing.  Not uncommon at all that Seth would have a hearing test, however, I never expect much from these as he failed every hearing test he took last year.

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Seth’s walking practice

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Ella is funny

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“Nana, just calm down!  You’ve already shown me that before.”

“Seth, just hold my hand, baby.  In my hand….it’s nothing but LOVE!”

“I’m going to wear THIS dress for my birthday and I’m going to wear THIS dress when I marry daddy.”

“Can I have another peanut butter stomp?”  (Reese’s peanut butter cup)

“That’s kind of a widda bit skeedy!!!!”  (kind of a little bit scary)

Ella, did you know that a caterpillar turns into a butterfly?  “Yes, it’s called metamorphosis!”

“Get my daddy out of that bunkin booth!  He doesn’t want to be wet!”  (Joel was in the dunking booth at the church’s fall festival.)

Ella, have you ever heard mommy say the words “down syndrome” and what do you think it means?  “Yes, I know Down Syndrome!  I had a little bit of it when I was a baby too.”

“For my birthday I want a Sleeping Beauty cake.  And she will have on lipstick and lashes on her face.”

“My nose is a little bit snuffy.  But Jesus will take care of me.  He is the Healer.”  (From the lips of children and infants, you have ordained praise. Psalm 8:2)

Ella will have an audience for her humor for a long time to come

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School, Speech & Signing

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Seems my updates are not as often, but we’re on the move over here! I just look at Joel sometimes and say, “It’s these kids!!!!”

One sweet girl!

Ella girl started preschool this week. It was totally not a big deal for her–she’s a total sanguine and doesn’t seem to be bothered by new situations or new people. She met lots of new little friends, though we can only remember about 3 of their names, but I’m sure that will all change by the end of the month. We got to decorate a little paper doll to look like her that the teacher stuck up on the bulletin board. We also colored her “take home” bag (I’m new to all of this….) with paint pens. It’s a beautiful work of art for a 3-year-old! She got to take her beloved Banjo (a stuffed koala bear brought from our friends when they lived down under) for show and tell the first day. So far, all I’ve gotten from her is that she gets her arm stamped whenever she’s been a good singer in music class and that they walk to and from their classroom “like one big snake instead of a bunch of little worms runnin’ all over!” She’s having fun and learning things with a great curriculum- I’ve got great expectations for the Christmas program!!!

Enjoy the smile, excuse the crumbs

Seffy boy is changing so much, so quickly, as all babies do. He waves and says “HI!” to most everyone we pass at church, the grocery store, the parking lot….you name it. He loves to smile and say cheese whenever a camera is pointed in his face! This little guy is a social bug too, I guess. He’s really working on talking and we’ve now added a speech therapist to jump start the talking. I’m sure you’re thinking, “A speech therapist? What do they do with babies?” Well, I’ve got a pantry full of sticky james, jellies and marshmallow cremes to slather on his lips and inside his cheeks to encourage the tongue to “move independently of his jaw.” And I bought an electric toothbrush, a $40 whistle kit from a specialty Web site, stuff to make Seth’s own personal “look book,” and installed a full-length mirror in the playroom to encourage us to sit in front of it and make faces, sing, laugh, etc. Speech therapy has proven to be very involved, but very fun indeed! We’re taking pictures of all of Seth’s favorite objects, places, toys and foods to compile into a book where we’ll label each thing and start working on building his vocabulary. I’ve heard that if it takes a child like Ella 10 times to learn something new, it will take Seth 100 times to learn the same thing. Repetition is key, as are pictures of literal objects, rather than sketches or cartoons. SO! Off we go…..you can do it, Seffy! He’s signing a lot to Joel and I, which is so great to give him some way to tell us what he wants. What a smart cookie, that little one. We’re proud of them both.

Special news for our family: Joel is being ordained as a deacon this weekend in our church. It’s an honor for him to be selected as a “servant leader” within the body and he is humbled to serve God and the body of Christ in this way. I’m so proud of him and can think of no one who better fits the description of a gentle leader. He is bold in his faith, ready to defend the Truth, yet tender-hearted in the way he loves others and cares for their walk with the Lord. Joel is a man of integrity who does the right thing. He is not hasty in making decisions that may affect our family or even the lives of others. I’ve known him to be very deliberate and prayerful in his response toward others. He is sensitive to the Holy Spirit’s callings on his heart and moves forward in boldness with complete peace in the Lord’s will. I am so proud of him and blessed to serve under his leadership in our home. Ella and Seth wanted to chime in that he’s the best daddy ever…..His dad and brother will be praying over him during the service Sunday morning- and that means more to him than words can describe. As the Lord brings us to mind, pray for Joel that the Lord will guide and direct his steps as he serves in this way.
We’ve started back into a new year with the worship ministry. I’m directing our contemporary choir again this year and loving every moment that we get to come together to worship. The Lord is drawing new people to the ministry, which is so exciting and so welcomed. I still can’t believe sometimes that I’m part of something so big for God- so unique. I was just talking to my dad about it this weekend and said that if you’d asked me even 5 years ago if I’d ever be directing a choir, I would have QUICKLY said, “No way! I’m not qualified to do that!” I still feel inadequate in so many ways, but “His strength is made perfect in my weaknesses.” (2 Corinthians 12:9) People keep coming back, and I still feel called to it, so I know the Lord has plans in how He’s using us week-by-week in worship. Again, I must say how much worship has changed for me now that I’m a mother, but particularly since Seth’s arrival. I see the Lord’s plans as I continue to walk the path He’s laid ahead of me. People that I don’t know have mentioned that they know my testimonyour story with Seth- and they are blessed to see that I can joyfully serve, love, honor the Lord in my worship. My response to that is and always will be: His is my only hope. Apart from Him, I am nothing, I have nothing. I cannot place my hope in Joel, my children, my family, my community, my job, my ministry. None of those things will ever satisfy and every one of them may fail me yet. But my hope is in the Lord….I have a lot of reasons to praise Him.
“Rejoice in the Lord always! I will say it again, rejoice!’ Philippians 4:4

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One is better than none!

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We just found out for sure today that Seth can't hear out of his left ear.
 It is most likely something that he was born with.  Apparently, the newborn
screen for hearing doesn’t always catch hearing loss in one ear.  He had passed
that screen, but recently he had been failing hearing tests.  We thought it may
have been related to the ear infections he struggled with recently, but the ENT believes
the high degree of hearing loss was not consistent with the hearing loss that would result from a bad ear infection.  Thankfully, we know he has very good
hearing in his right ear, according to a more accurate and rigorous test.  

So,
now our job is to protect his right ear from any future damage and carefully
choose his seat when he goes anywhere. 🙂  Please p
ray that God would
restore Seth’s hearing in his left hear, if that be His will.  Whether He
chooses to do that or not, pray that Seth’s hearing results in an understanding
and love of the gospel and a life that brings Jesus
glory!

Romans 10:17 (English Standard Version)

17So faith comes from hearing, and hearing through the word of Christ.

Joel

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HOW MUCH LONGER?

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Day 5 and we are still at the hospital as of Tuesday morning. I see
how the Lord is using this to work empathy in my heart toward families
who have endured days, weeks and even months with their children
receiving care. We are weary and tired. We are so ready to see our
own beds, eat our own food- hec, I'm excited about cooking. The good
news is that Seth has picked up a few new "tricks" since he's been
here- he's saying, "Ba" for ball and has started throwing the ball to
us and even following some simple commands. It's amazing how new ears
make such a difference! He's waving to anyone that we pass by or
comes into the room and can now pull up on anything. He even started drinking through a straw….big boy.

Now the technical stuff- we're waiting on "sensitivities" to come back
on his ear culture to tell us what drug will exactly kill this
infection. We are PRAYING that it is something oral that doesn't
require IV so that we can go home AND because Seth has been through 2
IVs already and stuck more than 7 times. His little veins keep
collapsing because he moves so much and his veins are so, so small. 

Here's what you can pray for today: 
-that drug sensitivies come back today and an oral antibiotic is found. 
-that we can go home. 
-wisdom for Joel and I in making decisions for his best interest in
the event that we are asked to stay another night. 
-peace for Ella- she misses her mommy SO much and is starting to
struggle a little.
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We’re Still Here….

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Seth's doctor came by this morning and we're going to be in for
another day. He's waiting on a bacterial culture taken from his ear
(during surgery) to grow and then be tested against several types of
antibiotics to hopefully find one that can be taken orally (rather
than through IV), so we can go home and knock these ear infections out
once and for all. Seffy boy pulled out the IV on his left foot this
morning, so the "Vascular Access Team" (IV specialists….) just
came and left and finally found a vein in his right foot after
pricking both hands and blowing veins in each. He was hysterical
during this process, mostly because it took 3 adults to hold him
down. He is a tough little fella and strong as an ox- he proved that
just a few minutes ago! Daddy and I were borderline hysterical
ourselves…….Here's what I need you to pray for: 

-That an antibiotic is found to kill the culture tomorrow morning so
that we can…. 
-Be released from the hospital on Monday. 
-That Seth won't pull out this IV and that it will last through the
duration of our hospital stay. 
-That Seth's ear infections will be cleared after this entire process
and that his hearing remain good. 

Jehovah Rapha is the Great Healer- and I know He cares about veins and
ears just as much as anything else.
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Doing well after surgery

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Seth made it through surgery without any problems. We'll be with him
at the hospital all weekend, however. They are giving him an IV every
8 hours with a strong antibiotic to kill the infection that has stuck
with him for over a month now.

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Pray for Seth

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We took Seth to the ENT on Monday and an ear infection in his left ear hasn’t cleared up after months of drops and treatments. (It’s a”chronic” ear infection.) So, he’s going to get a new set of tubes on Friday morning at 9am- adenoids taken out also to help with his breathing and sleep apnea- and a weekend stay at the hospital where they’re going to keep him on an IV to run strong antibiotics through his system to try to clear the ear infection once and for all.  What’s more, the ENT said, “Do me a favor and keep him out of the church nursery for a while. We’ve got to keep him well.” So! That kind of changes the way we’ll be doing things at church (guess he’ll have to learn to take notes sooner than later).

He did great on his birthday given his condition.

Many children with Down Syndrome have compromised immune systems, and we’re finding that Seth is no different. When they catch a cold or virus, it stays in their bodies longer due to smaller airways and nasal passages. That seems to be the case for Seth- and now it is settling in his nose and ears, which will ultimately affect his hearing, speech, etc. What a reminder of how intricately the Lord has knit us together!  Joel and I keep saying that it could be so much worse- it’s just a season in life and we’d rather it be his ears than something even more complicated. However, I feel anxious about putting him in the hospital for the weekend (thinking about all the germs, flu, etc), but according to the doctor, we really have no choice with the ear thing.  Please just pray with me protection over him during anesthesia and surgery- a full recovery- complete healing and restoration of hearing in both ears- rest for us while we are in the hospital for however long it will be- fun and peace for Ella girl while we’re away for a while- and peace for a nervous/weary momma. I know the Lord is in full control~ how many times do I preach that to other people? And how many times will I continue to be tested in it?  It’s just so hard some times to keep that top of mind when you are literally walking through the trial! I’m reminded of this promise the Lord revealed to me when I was pregnant with him: “And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To Him be the power forever and ever. Amen!” ~1 Peter 5:10

I will be anxious for nothing- I will pray without ceasing- in everything, I will give thanks! Thanks for praying for us….we will keep the blog updated.

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Happy First Birthday, Seth!!

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Momma loves this little guy

Dear Seth,

We celebrated your first birthday this weekend with all of your family and a few friends.  More than just a birthday party, we celebrated your life.  You’ll never know what a blessing you are to us.  If only we’d known how good this year would be, there would have been no doubts, no fears, no worries.

I knew you were special the minute I laid eyes on you, and that was something I’d prayed and asked the Lord for.  Nobody had to say a word to me- I announced to everyone in the delivery room that I knew you were special and they all silently nodded.  My doctor said you were sent to the right parents for sure.  Everyone in the delivery room handled you like a china doll- and there wasn’t a dry eye in the room, but there were a lot of smiles too.   All your daddy could say was, “He’s a good boy.  He’s a good boy, momma.”  The doctors told us you were really strong and a healthy boy.  You had a good cry, just like Ella did when she arrived.  The next thing I said was that your name would be Seth Joel- which means chosen by God and our doctor said he could think of nothing more fitting.  Then I proclaimed the truth- “Blessed be the name of the Lord!” with tears streaming down my face and my chin quivering.

I’ll never forget the feeling I had when the nurse handed you to me, just minutes after you were born.  She told me that God had special plans for your life, and she was certainly right.  You were wrapped up so warm with a soft little hat on your head- those beautiful blue eyes of yours were wide open, taking everything in.  I held you so close and started to talk softly to you- telling you how beautiful you were and how excited we were to finally have you.  You cooed right to me- and immediately, I knew we were going to be okay.  You see, I fell in love with you in that moment….your daddy did too.  I sang to you a little bit, which you were already accustomed to and still love.  Then one by one, as we introduced you to your big sister Ella, your Mimi and Poppa, Nanna and Pappy and aunts and uncles, they fell in love with you too.

You are a special boy, Seth.  We love you just as much as we love our Ella girl- you are both our favorites.  Ella thinks you are pretty special too.  She calls you names like, “Baby Joy,” “Seffy-too-tiger” and “Wookey.”  She came to pick you up at the hospital when you were born and couldn’t wait to hold you…she still talks about that day.  She’s mommy’s big helper and she’s also your helper too, Seth.  We’ve talked about how she will always take care of you and teach you new things; sure, you may fuss at each other every now and then, but she loves you so tenderly and always will.  I can see how God made you both so differently and how you will help take care of her, too.  You help Ella to slow down her pace a little bit- she’s learning to be patient, and can’t wait for you to learn to say her name.

You’ve taught me how to love better.  I’m not afraid of things that are “different” like I used to be.  I find myself going out of my way to get in line at the grocery store with employees who are special too.  I am learning to cherish and appreciate the little things.  I am enjoying each day for what it brings more and more.  I see beauty in all kinds of faces, shapes, colors and smiles.  Your little arrival has softened me.  I am more compassionate and quicker to hold my tongue, less inclined to criticize.  I love your daddy more because you’re part of him, too.  He’s so proud of you, he could just pop sometimes.  You’re his first son, Seth…and I know that he wouldn’t trade you for all the boys in the world.

I love your smile and the way your eyes turn into little rainbows when you get excited to see me enter the room.  I love to hear you say, “Mama.”  I love how you get so tickled when we play “kissie-kissie” and I loved how you wave your arms when you get so excited about anything we’re doing together.  I love how you wrap your arms around my neck as tightly as possible and squeeze me with an “Mmmmmm” whenever we hug each other.  I loved it the first time you crawled, slowly but steadily, right into my lap because you just wanted to be with me.  I love that you need me because, Seth, I need you too.

Seth Joel- chosen by Jehovah God.  You are a joy and a love to all who know you.  I am so proud of you.

I’ll love you forever- I’ll like you for always- as long as I’m living, my baby you’ll be.

Love, Mommy

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