Proud

I have the 5 cutest kids, and don’t even try to argue with me about it!  From the tops of their heads to the tips of their toes, they’re all just adorable.  I never knew I could love anyone so fiercely.  That love can sometimes bring me to tears.  I’m so thankful that I get to be their mom!

                       

                                             

We had a crazy week – swimming lessons, baseball games, softball games, doctors appointments, housework, meetings, yardwork – and I came to realize even more just how precious my kids are to me.  They make all the craziness of life worth it!  It is so gratifying to see them learn new things and tackle big responsibilities.  To see those moments when they just “get it” brings a smile to my face and makes me want to throw my hands into the air while I do a little victory dance.  I treasure those proud mommy moments.

Cardiology Update

Daniel had another cardiology appointment yesterday…this time it was at our hospital.  We are lucky enough that a cardiologist comes up once a month.  It was nice to not have to give up an entire day for a doctor’s appointment!

Daniel is doing well.  He is showing some signs of heart failure, but they’re not severe or constant.  He breathes fast sometimes, he occasionally sweats when he eats, he has occasional episodes of cyanosis (blue around lips, hands, feet), he sleeps ALL. DAY. LONG. and he has had some trouble gaining weight (though that is drastically improved).  So back to the Lasix we go…that medicine that makes him pee like crazy, all in the name of keeping fluid out of his lungs.

The consensus is that surgery is coming soon!  And that is bittersweet for me.  I am so anxious to get past this hurdle, and at the same time, I am so anxious about the process of getting past this hurdle!  It’s that double-edged sword phenomenon.

We will meet with the cardiologist in SL next time, and Daniel will go through the whole gamut of tests, including a sedated echocardiogram.  YIKES!!  Adding “sedated” to procedures that involve my tiny little baby makes this momma a little nervous.  Breathe in.  Breathe out.  At that point, the doc. will put in a request for surgery.  So we’re looking at late August or the first part of September.

Wow.  This is real.

Trisomy Tuesday

Wow – it’s been a whirlwind of a week so far, and I think it’s only going to get windier (is that a word?)!!

I am by no means an expert on Down syndrome, so these little moments are just as much for me as they are for anyone who reads them.  Hopefully someone will gain something – even if it is more understanding – by reading.

Doctors can usually spot babies with Down syndrome right after birth because of differences in their face, neck, hands and feet, and muscle tone.  After the doctor’s examination, a chromosome study (karyotype) is ordered to confirm the diagnosis.  Daniel’s facial features are pretty subtle (at least to me).  He has lots of extra skin on the back of his neck and shorter fingers.  He also has the cutest curved pinkies!  Daniel also has the most flexible feet we’ve ever seen (most likely from different muscle tone)!  Take a look…

There are no “degrees” of Down syndrome.  Either a person has it or they don’t.  Just like people with 46 chromosomes, people with Down syndrome have varying levels of abilities and skills.  I have been asked a few times, “Do they know if he is mild or severe?”  (Don’t feel bad if you’re one of these people – I had the same thoughts when I found out!)  Just like any other child, Daniel will show us what he is capable of one day at a time.

Babies with Down syndrome develop at a slower rate and with some differences.  People with Down syndrome are so special that they get their own growth charts!  If you want to see them, go here: http://www.ndss.org/index.php?option=com_content&view=article&id=71&Itemid=91

Two Months Old

Weight: 9 lbs. 7.5 oz. (a gain of 8 oz. in one week, and more than 2 lbs. since birth!!)

Length: 22.25”  (3” longer than at birth)

 

Tummy Time Rockstar

My boy is rockin’ the tummy time!

Daniel used to hate being on his tummy.  He would just lay there and fuss while occasionally face-planting into the floor.  But Little Brother’s a tummy time rockstar now!  He can get that adorable face up almost 90 degrees and hold it there – albeit a wobbly hold – for several seconds.  He even turns it side to side before it just gets too heavy…

…and he just has to rest!

I’m so proud of this boy!  I can tell he has a huge spirit that is just determined to accomplish great things.  I hope he’ll let me tag along on his coat tails.

A Good Neighbor

Our next-door neighbor is one of the neatest people you’ll ever meet.  She serves in the Young Women Presidency with me, and I’m so glad I’ve been able to get to know her better.  {How sad for me that it took having a calling together to get to know my next-door neighbor!}  The young women just LOVE her, I think partly because she is so genuine.  She has an amazing testimony and is just an all-around awesome person.

She owns the horse pasture behind our yard, and the horse, Vader, that my kids love to feed and pester.  She also boards another horse and teaches riding lessons in her spare time.  She also owns two dogs, a couple of cats, and three pygmy goats that the kids are completely fascinated with.  She is so nice to let the kids help feed the goats and doesn’t seem to mind that they incessantly pester her horse!

Yesterday she offered to let the kids each have a ride on the pony that she boards.  The kids, being the wonderful people they are, happily obliged!  No dragging of feet, no whining, not a single complaint!

  Their enjoyment was obvious as they sat atop the beautiful pony named “Snickers.”  I think you could say they were in horsey heaven!  In fact, I probably could have secured commitments from them for just about anything – it was that good!

Tess was nice enough to give them a bit of a lesson, helping them learn how to sit balanced and use the reins to get the horse where they wanted it to go.  It was amazing to watch as even Rachel maintained her balance without even holding on to the saddle!

 

And she did all this out of the goodness of her heart, because that’s just the kind of person she is.  Maybe someday I’ll be a little more like her!

Blessed

Seven short weeks ago, a perfect gift came into our lives.  Perfect in every sense of the word.  And on Sunday we were blessed to be a part of a most special day, as Daniel was blessed by his Daddy.

I’ll not soon forget the feelings of the day.  Peace, comfort, happiness, joy, pride, adoration, humility.  Although the blessing was given to Daniel, I truly believe that we have received the greater blessing by having him come to our family.

And while it feels like we’ve been brought into our own little wilderness - an unfamiliar place that is, at times, difficult to navigate – little by little I can see the place where we really are. 

We’re in our own little land of Bountiful, and it is a rich land, with people and experiences prepared just for us to help us as we make our way.  We are truly blessed to be in such a wonderful place!

Trisomy Tuesday

I’m thinking I was feeling a little ambitious when I thought I could do this every week!  Maybe I can get to it every other week.  So, for today’s Down syndrome moment…

Amniocentesis and CVS (chorionic villus sampling) are the only ways to diagnose Down syndrome before a baby is born.  CVS is performed in early pregnancy (I think before 14 weeks) and amniocentesis can only be performed after 14 weeks.  When we found out about the possibility of Down syndrome in my pregnancy, I was 19 weeks along.  Because of the small risk of miscarriage associated with amniocentesis, and because a diagnosis wouldn’t change anything for us or for how my pregnancy was treated, we declined and waited until Daniel was born to know for sure that he has Down syndrome.

It is estimated that 80-90% of all Down syndrome pregnancies are terminated.  That means that 8 or 9 out of every 10 children like Daniel don’t even get to take their first breath.  My heart breaks every time I hear this statistic.

People with Down syndrome tend to have weaker immune systems than people without that extra chromosome.  Add a heart defect on top of that and you’ve got a kid who’s probably going to catch every bug on the planet and could be very sick with just the smallest cold.  Germ control is definitely a must!!

Birthday Boy

Caleb is the birthday boy…3 years old!!  How can that be?!?!  I remember the feeling I had upon finding out I was pregnant with him, wondering how on earth I could possibly do this again so soon.  And then, snuggling him in the hospital the day he was born, I wondered why in the world I had been so worried!

Can you believe he started out like this?!?

And now, he’s 3 years old…such a big boy!

 

Of all the words I could use to describe Caleb – curious, smart, energetic, funny, musical, outgoing, happy - BUSY is the only one that truly sums up who he is!  He goes and goes and goes, even when his needle is past empty.  He fuels his engine by sucking up all the juice that life has to offer.  And all the sweetness that oozes out of him makes up for those hang-wringing, exasperating moments.  Those great big eyes and super long eyelashes certainly help too!

Caleb loves Star Wars, Legos, Iron Man, Lightning McQueen..he’s all boy!  But he can feed and dress a baby doll just as good as any girl!  He’ll make a great dad some day.

He loves to eat, but likes to sound like his older siblings, so he frequently says, “Oh…disgusting!!” when I tell him what’s for dinner.

We are so lucky and blessed to have Caleb in our family.  He is such a little fire and definitely brightens up the dynamics in our family.

We love you Caleb!!