My Favorite Project

 

This is the gift I made for my mom and Jared’s mom.  I had so much fun making it, so I thought I’d share.

I love how it turned out, and now I think I’ll have to make one for me (but with a different saying than the one for grandmas)!

Daniel…8 months old

It looks like he’s shrinking!  I must have not tried hard enough to get the outfit up over his shoulders in the 6 month picture.  Or maybe he was just retaining a lot of fluid still.  I love his super flexi-feet (in the 8 month picture), and I love to see the changes in his face (and the lack of nasal cannula!) and how much his hair has grown!  This boy is just too darn cute!

Don’t you just want to nibble his neck and sit down for a long snuggle?!?!  I am the happiest mom ever because I get to do that whenever I want!  Don’t be jealous…he’s available for snuggles any day of the week!  But you’ll have to fight me for them!

Merry Christmas!

We had a very interesting day that included throwing up, Skyping, games, and lots of family time.  A memorable day for everyone!  We hope you all had a wonderful Christmas!

And now I’ll let the pictures speak for themselves!

 

(Who cares about what’s inside, I just want paper!!)

 

(She managed a smile even though she felt super crummy all day long.)

 

(A horrible picture, but there’s no mistaking he’s happy!)

 

 

 

 

 

(Everyone looking at the camera and smiling…a Christmas miracle!!)

It’s the Most Wonderful Time of the Year!

December always seems to bring an abundance of hustle and bustle, and this year is no exception!  It really is insane that we try to pack so much into a few short weeks!  Just getting all the gifts purchased and wrapped in time for Christmas is a gigantic endeavor.  Then add on all the extra stuff – gingerbread houses, concerts, church parties, decorations, work parties, family parties, drives to see the lights – and we’ve got one insanely busy month!  All I want for Christmas is to be able to spread it all out throughout the year!  (And a new lens for my camera would be fun too!)

Emily had her orchestra concert last week.  It was short, sweet, and perfect!  She did a great job and it was so much fun to watch her interact with her friends and see her play with her class.  She is growing up so fast!  I wish I could slow down time! 

 

And what would December be without a little illness to keep things exciting?!?  The poor thing just finished antibiotics for her second case of Strep in the last 6 weeks!  If she gets it one more time in the next 6 months she’ll have to get her tonsils removed.  We’re hoping we can avoid that route, and Emily has her fingers crossed tightly in hopes that her tonsils can stay put!

Rachel went to a fun princess-themed birthday party yesterday.  She was soooo excited about getting to dress up in her princess dress and to play with all her friends from preschool.

Caleb’s favorite thing to say lately is, “There’s nothing to do!”  Of course he uses his most whiny voice and practically flops himself onto the nearest surface as he says it.  He was offered a sucker by Jared’s uncle (who teaches at Emily’s school) the night of Emily’s concert.  I think he grabbed one for himself and a few more for all his friends!  I wish I could say that the suckers kept him quiet and still for the concert, but  I’d be a liar if a did.

Daniel has already had quite the busy month.  He had a trip to the ophthamologist in Salt Lake last week.  We were supposed to get his eyes checked by the time he was 6 months old, but with surgery and the doctor being booked for 2 months solid, we were a little slow to get it done.  His eyes look great, but he does have blocked tear ducts.  We’re hoping they take care of themselves in the next few months.

We had to run into the doctor’s office on Tuesday so he could be weighed before the pharmacy sent his RSV shot.  13 pounds, 7 ounces.  I’m starting to think he’ll be less than 14 pounds for the rest of his life!  He had his shot on Thursday afternoon, which made for our third trip to the same office in three days!  After another weight check – 13 pounds, 9 ounces – the nurse gave him the shot and we watched him for 15 minutes to make sure he didn’t show any signs of an allergic reaction.

(Feet, glorious feet!  They’re great for pulling and toes are perfect for sucking!)

(Mom…can you see a bit of baby Greg in that face?)

He had a routine appointment with the ENT on Friday – just a re-check of his hearing and a general exam.  This appointment was a definite tender mercy.  Both of Daniel’s ears were full of thick, icky fluid!  Aside from his almost constant congestion, he had no symptoms at all!  I felt so bad that we had no clue and he’s been living with a double ear infection for who-knows-how-long!  I’m so thankful I scheduled this appointment, as I wondered at the time if it was really necessary.

All that aside, Daniel has made some huge strides in his physical development.  Rolling has turned him into quite the traveling man.  This is a very common sight lately…

…little Mister several feet away from his blanket!  I guess we’re going to have to pull out the gate.

And lastly…Josh.  Josh, Josh, Josh.  He has a never-ending source of energy (except when it’s time to do his work) and a constant desire to play Wii.  Thankfully he has Legos to fall back on when he’s used up all his Wii time!

One Year Later

One year ago, we started the day blissfully unaware of what was waiting for us as Jared and I went to my routine mid-pregnancy ultrasound.  I was 19 weeks along in my pregnancy with Daniel.  I knew we were having a boy, and even told Jared, “Told ya!” when the ultrasound tech confirmed that the baby I was carrying was indeed a boy.

And then everything changed.  We went from the excitement of knowing we would be having another boy, to feeling devastated and broken.  A heart defect.  Enlarged brain ventricles.  Echogenic bowels.  With each new discovery, my stomach twisted and worry consumed me.  “I think your baby may have Down syndrome,” was the last thing I really remember.  Those words were like a clap of thunder in my soul.  My heart broke in that instant and a flood of tears poured from my eyes.  Suddenly, the baby I thought I was carrying was replaced by something else, someone else.  The hopes and dreams I had for this child were replaced by fear, disappointment, sorrow, anger.  I felt so completely overcome, as if someone had just thrown me into the depths of the raging sea, expecting me to swim back to shore.

But that was then.

 

And now, one year later, my heart has been healed.  Yes, I do worry about Daniel.  But I worry about my other four children as well.  I have moments of sadness…for every single one of my children.  I have hopes and dreams and expectations for Daniel…just as I do for each of my other children.  That sorrow and sadness has been replaced with an incredible love and happiness for this boy!  He has a very special hold on my heart and, dare I say, the hearts of everyone who know him.  Having a baby with Down syndrome is a great cure for a broken heart!

It has been a humbling blessing for me to be a part of Daniel’s life.  His strength is incredible, his determination enviable.  And the pure love that emanates from his is intoxicating.

To the me of one year ago, I wish I could say, “Just wait.  You won’t believe what an incredible blessing is coming to you.  You can’t begin to comprehend how amazing it will be.  You have no idea how lucky you are!”

One year later, life is good.  Really good.

It’s Beginning to Look a Lot Like Christmas!

 

Mantel…check!

 

Garland…check!

 

Front door…in progress.

 

Cuteness…check,

…and double check!!

Tree…check! (and re-decorated several times by 4 sneaky little elves)

Sunday Best

Daniel tried out the highchair for the first time this week.  It’s not his favorite place to be!

Focus…

…and frustration. (I love the cheek hanging over the edge of the tray!)

Accomplishment of the Week: Emily earned a place on the Honor Roll for her first quarter of middle school.  That’s my girl!  So proud of her hard work.

Best blog: I have fallen in love with The Blessing of Verity.  This blog is about a beautiful girl named Verity, who is the 10th child born to the Musser family.  The Mussers have just returned from Eastern Europe where they have adopted another beautiful girl – Katie - who has Down syndrome.  Grab a box of tissue…you’ll need it when you read about Katie and the horrors she has endured in her short 9 years.

Friday Fun

I figured out how to get the videos from our camcorder to the computer all by myself!  Wow…I’m getting to be such a techy!

As a result, Caleb and Daniel are in the spotlight today.

First, Caleb sings the Spiderman theme song.  (Watch for the web shooting and sound effects)

 

And now, Daniel is enjoying his reflection in a mirror this morning.  The very beginning is the best part, so don’t look away!

Daniel…unplugged

Today is a happy day.  A wonderful day.  A fabulous day.

And Daniel thinks so too!  (Would you look at those eyes?!?!  Dang they’re amazing!)

Notice anything different?  Anything missing?

The cannula is gone!  The stickers are gone!  Our boy is now tube free, and we are loving it (and him)!

Daniel saw the cardiologist today, and it was a great appointment.  The doc. proclaimed that the size of his heart on x-ray was “incredible!”  He has a very quiet murmur – probably valve regurgitation – that is almost too quiet to even hear.  And his oxygen was above 90 without any extra oxygen to keep it there.  Our boy is a rockstar!!  The next time we will get to see the cardiologist will be for a sedated echo in March or April, just to make sure everything looks as it should.  And as long as it does, our little cardiology get-togethers will be only once a year from then on out!

Today is also Daniel’s 7 month birthday.  7 MONTHS!!  Can you believe that?!?!

This boy can roll, and not just from back to belly like he’s been doing since before surgery.  Last week he figured out how to get from his belly to his back.  Before that he’d get stuck on his belly and be so darn mad!  He is all over the place, and loving it.  Life is just one big happy party now!

He has made huge strides in sitting and can tripod with a pillow on his lap for close to a minute.

He has become quite the eater, having sampled avocadoes, bananas, pears, sweet potatoes, squash and peas.  I think the squash may have been his favorite.  Bananas were not his favorite.

And look at this…a sleeping boy without a thumb (or several fingers) in his mouth!  (And no tube above his nose, off to the side of his nose, or in his mouth!)  LOVE!!

I love me some Daniel!  I am so thankful for him (and the rest of my kids) and the amazing love I feel for him. 

We Found One!

We did it!  We found a formula that doesn’t make Daniel sick!  Similac Alimentum has done the impossible.  He’s had it three times now and given us nothing in return.  This is truly an answer to prayer!

(Happy to not be throwing up!)

He’s getting used to the taste of it, so he drinks about half as much as usual.  I honestly didn’t think he would even drink it.  It smells AWFUL, so I can only imagine how it tastes!

Now we have to decide whether Daniel’s issues have truly been from a milk protein sensitivity.  After he’s had more success with the Alimentum, we’re going to try Similac’s soy formula.  If he’s successful with that, we may try just regular Similac.  All of Daniel’s puke fests have happened after drinking Enafmil, so it’s possible that Enfamil’s formulation just doesn’t agree with him.

Baby steps.  Baby steps.

Sunday Best

Quote of the week: This one comes from Rachel, who ALWAYS has something to tell you (even if it’s a simple, “I love you.”).  We were having lunch and, out of nowhere, she said,

“If you eat, it’s a eatover.  If you play, it’s a playover.  If you sleep, it’s a sleepover.  If you get into the cupboard, you get in trouble!” 

Well said, don’t you think?!?!

Accomplishment of the week: Daniel had physical therapy this week for the first time since July!  The PT was so happy to see him again, and to see how much bigger he is.  She was thrilled with his progress and declared that he has achieved head control!  D-man has been working so hard on neck and core strength and is getting close to being able to sit all. by. himself.

(This picture has nothing to do with neck strength, core strength or sitting.  But it has everything to do with cuteness!  Oh, and he happens to be wearing his Sunday best!)

 

Creativity at its finest: Those are glasses made completely out of Legos!  Look out, Elton John!!  Josh is becoming a Lego Ace and continually amazes me with his creativity and ability to put his ideas to work.  (A smile, it seems, is just too much to ask.)

 

And last but not least…

I know this is a “Sunday Best” post…you know, reserved for the best of the best.  But I had to throw this in, because it was the biggest disappointment of my week.  The weather forecasters got it right, for once, and I’m not too happy about it!

(I realize I have nothing to complain about, especially after the beating that our friends on the East Coast got last week.  And it was only about 3 inches.  But still…I was disappointed!)

Happy Halloween: The Costume Reveal

First of all, I DID IT!!  A blog every day for 31 days is huge.  (Look at the history on this blog if you don’t believe me!)

Most of my blogging hasn’t been about Down syndrome.  And that’s how life is.  It’s just life.  We eat, we play, we clean up messes, we go places, we have fun.  Life for us isn’t all about Down syndrome.  Not even close!

I hope that people who have visited our blog have been able to see that we’re an ordinary family.  And that we’re blessed and lucky beyond measure.  We have 5 awesome kids.  We love them all dearly.  We try to make life about our relationships, about love and service.

And when appropriate, we dress up in fun costumes and walk around the neighborhood begging people for candy!  We hope you all had a fun and spooky Halloween!

Emily as a Japanese lady, and Josh as Link (from the Legend of Zelda Nintendo game).

 

Caleb as a dragon and Rachel as a nice witch.  (The end of Caleb’s dragon tail has worn completely through to the stuffing from being dragged across the ground!)

 

And Daniel as the Frog Prince (notice he’s working on supported sitting…all by himself on the couch!)

We came home from trick-or-treating and the kids had a few pieces of candy. Then gave what was left to Jared in exchange for a Lego minifigure.

We had 12 trick-or-treaters come to our door…about an average Halloween for us.  And that means we’re left with LOTS of candy.  Good thing we bought the good stuff!

Thanks for coming along on our 31 for 21 challenge!  I hope there was at least one person out there who benefitted by reading.  Feel free to keep reading and following our story!

Sunday Best: Homecoming

Jared’s parents returned home on Tuesday after serving as missionaries in Scotland for the past 18 months.  That’s right – they were gone for 18 months, which means they had never met Daniel in person.  It was so wonderful to see them again and to watch as they met Daniel and got reacquainted with the rest of us (5 children, 5 spouses, and 11 grandchildren).  Family reunions are always fun, but this kind of reunion is even better.  I know our kids have a deeper love and appreciation for their grandparents after seeing them make such a sacrifice.  I am thankful for their strong testimonies and for their examples as they left their family and comforts behind to share the gospel.

Meeting Grandma for the first time: LOVE!

As if That Wasn’t Enough…

We had plenty of excitement in our house yesterday with all of Daniel’s throwing up.  PLENTY!

And now, Emily has strep.  As if cleaning up puke wasn’t enough fun!

At least Strep is an easy fix with a round of antibiotics and a little rest.

If only our formula struggles were that easy!

Formula: Another Try

Back in June, the cardiologist wanted us to fortify Daniel’s milk with formula.  We were supposed to add a scoop to every 3 ounces of milk.  We tried, and he puked.  Tried again, more puke.  After a few feedings, it became evident that the formula was directly related to the puking.  So we gave up, ‘cause puking everything back up is definitely counterproductive.  We thought it was probably something heart-related (reflux is associated with heart problems), or perhaps it was a little too thick for Daniel’s system.

Fast forward a few months.  Open heart surgery is a thing of the past.  But Daniel is still being slow in the weight-gain department.  I wonder if I’m producing enough milk, so we try formula again.  But this time it’s not powder added to breastmilk, so it’s not as thick.  Two hours later, the vomiting begins.  And it continues on and off for three hours.

Just a little sidenote: I have Crohn’s disease (Google it if you need to).  There are times that I have had to quit breastfeeding in order to get/keep my disease in control.  Which means formula has to be an option.

This frustrated mama talked to the pediatrician, who sent us home with a bag full of different kinds of special formulas (the ones that are like $25 per can!) to try.  I finally got the courage to try again today.  We tried Enfamil A.R. for spit up.

Two hours after the feeding, the vomiting began.  And, just like previous episodes, it continued on and off for three hours.  Every time we would sit Daniel up, he would puke.  And then he’d lay back down and go to sleep.  He seems just like a sick little baby with all his puking and tiredness.  And now I feel so bad for putting him through the whole cycle yet again.

Houston, we have a problem!  Being the overly paranoid mom, I’m starting to wonder if this is a physiological problem…something in the GI department.  But surely he’d have problems with breastmilk too if that were the case, right?  I surely don’t hope it’s “just” lactose intolerance…but I guess there could be worse things.  I just don’t think I can subject my poor baby to this anymore!

To any DS parents reading this, have you had any experiences like this?  Suggestions?  Words of wisdom?

11 Years Ago…

Eleven years ago, I became a mother!  (I can’t believe it has already been 11 years!!!)  That was one of the greatest days of my life.

Happy happy birthday to my beautiful girl!

I am so glad Emily got to be our first child.  She has taught me so much about how to be a mom.  She is such a great helper.  I couldn’t possibly do everything I do without her.  She is a great sister to her siblings, and a super friend.  She is a hard worker.  She is creative.  She likes boy toys, but she’s also a girly-girl who likes nail polish, lipstick and dressing up.

She is an awesome student and is doing so well in middle school.  She is the youngest in her grade (probably by close to 2 months) but she is right at the top with her grades.  She LOVES to read…sometimes a little too much!

We love you Emmy!  You are such an important part of our family.  We are thankful you belong to us, and I’m so thankful that you made me a mom!

Carving Pumpkins

Last night was pumpkin carving time at our house.  Jared was out of town, so it was me, four kids, a couple of knives, and lots of slime!  I dare you to find anything to top that!

Josh was a maniac with the knife.  I’m so amazed – and relieved – that he still has all of his fingers and all of his skin is intact! 

I did the cutting on the other three pumpkins, as I’m not up to handing over a knife to a 4- and 3-year-old, and Emily is rather paranoid.  I took directions from Rachel and Caleb as to how their pumpkins should be carved, and Emily had hers sketched onto the pumpkin.

I was thoroughly entertained hearing all four of them complaining about how disgusting all the pumpkin guts were.  Caleb was completely hilarious (I can say that NOW) flinging pumpkin guts off his hands with a grossed-out look on his face!

  

We ended up with four creepy-looking jack-o-lanterns, four cups of pumpkin seeds to roast and a great big, slimy mess on the table and floor.  How’s that for fun?!?

Thyroid {re}Check

Daniel got his thyroid re-checked yesterday.  Guidelines from the Down syndrome gurus say that he needs it checked every 6 months for the first year of his life, and then yearly after that.

I was not anticipating this…

At our local hospital, the phlebotomists seem to be really scared of drawing blood on babies.  So they go for the feet instead.  Really, are three pokes and 20 minutes (I kid you not!) of squeezing a tiny little foot any better for the baby than TRYING to get a vein?!??  I think not!!  All the while, the phlebotomist (who looked like he couldn’t have possibly been a day older than 15!!) was complaining about Daniel’s ability to bleed, making comments like, “OK mister, an 18-hour-old baby bleeds more than you do!”  I really felt like punching the guy, and I’m contemplating making a complaint to the higher-ups (whoever they may be).

The good news – and thankfully there is good news – is that Daniel’s thyroid function looks beautiful!  And that is what we wanted to hear.

Come April, if I see Mr. Teeny Bopper Phlebotomist around the lab, I’ll be grabbing Daniel and running as fast as I can for the nearest exit!

Day 24

Wow!  I can’t believe I have posted every day for the past 24 days!  That, my friends, is very much a miracle!  In all honesty, though…I’m running out of stuff to say!  Shocker, right?!?  Our lives are just so darn ordinary!  I have a really hard time making what we do seem exciting and thrilling, let alone something worth reading.  So, if you have any ideas about what you’d like me to post for the last 7 days, I’d love to hear them.

Daniel had his 6-month check-up on Saturday.  Who does that on a Saturday?!?  I felt a little disappointed, as he only gained 5 ounces in two-and-a-half weeks!  Seriously??  What happened to the crazy weight gain he was supposed to have once his heart was fixed?  Being 1) a mom, 2) a woman, and 3) the only source of his food, I have come to conclude that it’s all my fault and there must be something wrong with my milk, or the way I’m doing things, or all of the above!  The doctor felt like the weight gain was OK, and said gaining weight too easily after surgery signals a problem.  Fine.  I’ll take the 5 ounces and run.  So, the official stats were:

Weight: 13 pounds, 6 ounces

height: 25.25 inches

He’s hanging right at the 45th percentile for weight and height, right where he’s been most of his life.  So I guess I just need to chill and not internalize every (perceived) problem in the world, right?!!

He got a flu shot, as well as his 4-month vaccines.  He couldn’t have them on time because of surgery.  By the end of the day, he was feverish and extremely cranky on top of being super congested (which has been going on for the last couple of weeks).  Needless to say, it was a loooong night.

As far as milestones go…well who really knows?!?!  I can tell you that he is an awesome tracker, he talks a lot, he rolls from his back to his tummy (and occasionally from his tummy to his back), he is a voracious thumb-sucker, he’s getting to be pretty good at supported sitting, and he holds his head up pretty well (still a bit wobbly).  He loves his hands and feet, he loves books, and he loves his siblings.  He is the best sleeper of any of our kids…hands down.  It is truly a joy to watch him and experience the world with him.

Sunday Best

My favorite post of the week!!  This is turning out to be a lot of fun!  Without further ado…

Quote of the week: “Mom…Josh called me a tattletale!!”  (Caleb, who had been tattling for 15 minutes prior to proving himself as a tattletale.)

“That does not make any sense, Grandma!” is a close second. (Caleb, again.)

Best blog post I read this week: My Angry Down Syndrome Awareness Post at Mostly True Stuff.  Please take a minute to read this if you haven’t.  It’s definitely worth your time!

Photo of the week: Rachel climbed into bed with Caleb last night.  (I really don’t think there’s anything I love more than peeking in on my sleeping children.)

 

Sneaky Peeky

I spent the entire week getting Halloween costumes ready for our oldest four.  This is a HUGE thing for me.  Around here, costumes are usually something that get thrown together at the last minute.  I hate Halloween.  Yep…HATE it!  I hate spending money on silly costumes.  I hate dressing up.  (I even hated it as a kid, so this isn’t an adult-onset problem.)  I guess I am the world’s biggest party pooper!

I’m not sure why this year is different.  Maybe I’m loosening up a little??  Whatever the reason, I better get the “Nicest Mom of the Year” award after all the time and energy I put into these costumes!!  Really, though, the kids’ excitement is all I need.  It has been fun to get their input, and it has been equally enjoyable to see how much it torments them to have to try something on a few times!  (Maybe you weren’t aware that I lay awake at nights thinking of ways to torment them?  Hahaha!!!)

Here’s a little sneak peek at what they’ll be wearing this year…

I guess I can move on to Christmas now that I’m done worrying about costumes!