My First Birthday

I had my first birthday three weeks ago, and my mom hasn’t posted any pictures yet.  She says she’s been busy, and I even think she blames me for some of her lack of “free time.”

(I have some new teeth coming in, and I do want to be close to my Mommy every minute of the day, and I’m waking up more at night, too.)

I had a great birthday, and celebrated with my family and all of my grandparents.  Mommy made me a pink butterfly cake.

I especially liked picking off the M&Ms.  mmmmm!

Grandma and Grandpa gave me a baby doll, which I love!  I carry her around, hug her and pat her back, brush her teeth with my toothbrush, and wipe her face with a washcloth.  I’m pretty sure I’m ready to be a Mommy.

It wasn’t a big party, but it wore our my big brother, Matthew.  I adore him, and think he is so funny!  He makes me laugh all the time. 

I’ve been walking for almost two months now, so I think I can do everything my brothers do.  I love to climb things, especially the things that make my mom come running to grab me.  Even if she doesn’t realize it yet, I know that I am ready to take on the world!

I also love being outside.  There is so much to do and explore!  I love splashing in water (especially the toilet … that also makes Mommy come running!).  I also love to eat dirt.  When I’m near dirt, and Mommy starts running toward me, I shove it in my mouth as fast as I can, so she won’t be able to stop me.  mmmmm!  She says I should wait and taste the things that are going to grow in our garden, but I’d much prefer to just eat the garden right now.  I really don’t understand what the problem is!

I spend most of my days being happy and adorable, busy finding trouble, trying to keep up with my brothers, playing with them and laughing at their antics.  We hope you and your family are also doing well.

With Love,

Mikayla

11 month pictures and Easter

If I’m going to get Mikayla’s 11-month pictures posted before she turns ONE, I better hurry!

Kaylie: 11 months old

We had fun getting these pictures.  I held her up by our flowering plum trees, and Micah used my camera to snap the photos.  That was a special privilege for him, and he did a wonderful job!

Somewhere between 11-months and 12-months, my baby became a toddler.  She is walking with confidence now, and very proud of it!  She is such a happy and easy-going little lady, and even though she finds trouble to get into everywhere she goes, she still rewards us with the sweetest smiles and snuggly hugs.

This Easter was the first year we let all 3 boys dye eggs.  It was quite an adventure, but they had a lot of fun.    

Jesse is at a stage now where he refuses to smile for pictures.  If we want a smile, we have to capture a candid.  Our attempts at a family Easter photo were … well … you’ll see:

Jesse’s Eye: All-Clear!

Five months ago, Jesse had a 3rd surgery to clear his clogged tear duct.  The surgeon made an incision to clear out the blockage and scar tissue, and placed a stent that was supposed to stay in for six months.  The experience was traumatic for Jesse, the scar was ugly, the stent only lasted ten days, and we weren’t sure that the whole thing wasn’t a complete failure.

He has done very well since then, though.  His eye has seemed to be draining well, and he hasn’t had any eye infections since his surgery.  (Previously, eye infections seemed to hit him every 3-4 weeks.)

We saw our surgeon for a check-up yesterday, and he gave Jesse the all-clear!  His eye is healed, and we won’t be needing any more procedures.  Hooray!  Our doctor explained that the surgery portion of the procedure has an 85% success rate on its own, and the stent raises that success rate to 95%.  He said if we had tried to only place the stent, it wouldn’t have worked at all (since it didn’t stay in!).

Also, only five months later, his scar is invisible to anyone who doesn’t know it’s there.

We are so thankful.

World Down Syndrome Day 3/21/13

March 21st is World Down Syndrome Day.  It’s a day to celebrate everyone who has been blessed by an extra chromosome, and we will hold our sweet Matthew extra close today (and probably give him ice cream!).

However, I’m afraid my heart is heavy tonight as I post this, after reading two more cases of abuse this week – one in a classroom, and one in a theater, with the latter resulting in the death of the victim, Robert Saylor.  These cases break my heart.  They are not the first, nor will they be the last.  There was Bede Vanderhorst, a 16yo who was not allowed to sit in First Class on an airline, even though he had a first class ticket. And little 7 year old Angie who was suffocated by her own teachers!  Then you have the state of Florida warehousing children with Down syndrome.  And, perhaps worst of all, their own mother’s womb is still the most dangerous place in the world for children with Down syndrome.

And yet, 3/21 is a day set aside to let the world know that people with Down syndrome are, indeed, special.  Not “special” in the way the word has come to be used as an insult, but rather truly precious, valued and loved individuals.  Robert Saylor’s mother said in one of her interviews that abuse is only a symptom of a greater disease – of people viewing our children as something of a lesser being.  it’s time to move beyond “awareness,” and onto acceptance.  We need the world to accept the full humanity of our children with Down syndrome.

And so, it is fitting that the IDSC has chosen “Who I Am” for the theme for this year’s video.  Let’s show the world who we are!

Works for Me: Protecting the Kitchen Table

Our Kitchen Table

For us, it is so much more than a place to eat.  It is the only table, so it is the everything table!

So, when it was finally time to replace our old-but-who-cares-what-happens-to-it table with a nicer piece of furniture, we decided to protect it as much as possible.

After all, it’s an art studio,

It’s a baking and craft center,

It’s a school desk,

And, perhaps the messiest (but most fun) of all:  It’s a science lab!

I simply went to our local fabric store, and bought a sheet of heavy-duty vinyl big enough to cover the table.  It protects from spills, paints, pens, markers, and even Matthew’s fork and Jesse’s attempts to cut his food himself!  It cleans up with a dishcloth, or Windex and a paper towel if you really want it to look nice.  For special occasions, I can put decorations, place mats, or a table runner under the vinyl, and they stay looking nice, too!

When you have company, it rolls up nicely and tucks away in a closet.  Or, if you’re like us and most of your company has a passel of kids as well, it just stays on the table year-round.

For the especially messy projects, I still throw a dollar-store tablecloth over it, just to make clean-up even easier.  And yes, my kids paint wearing only their “wunderwear.” 

It works for me!

Annual Cardiology Check-Up 2013

This week, Matthew saw his cardiologists for his annual EKG, Echo, and consult.

The issues they check on are these:

-When the hole between his ventricles healed, it left a pin-hole opening that the surgeons decided NOT to fix.  The part that healed does not look smooth and “normal,” but rather rough, like scar tissue.  They don’t anticipate this will cause any problems, and both of these issues have been not changed over the past 4 years.  The only new recommendation this year was to give him antibiotics prior to any dental work, to avoid bacteria clinging to those rough areas.

-When the surgeons fixed the valves in the middle of his heart, they could not do a perfect job.  His mitral valve is leaky, and he lives with “mild to moderate” mitral regurgitation.  This, also, has not changed over the past 4 years.  Last year, however, they noticed an area of his mitral valve that was stiff and rigid, which if it progressed would eventually lead to the need for a valve replacement.  This year, they did not see any stiffness!  Hooray!

Overall, they said his heart looks great!  His heart, along with the valves and all the repairs seems to be growing with him.  There is still no need for any long-term medication.  Eventually, he may be on a low dose of a diuretic, just to preserve his valve function for as long as possible.

We continue to be amazed at the way God has healed, and continues to care for, this little guy’s heart.  God must have big plans for you, my Matthew!

So, now that that is over with … we can move on to the things that are really important:

GONZAGA IS NUMBER ONE!

GO ZAGS!

Brown Doggie Update

Thank you to everyone who expressed concern about Jesse and his Brown Doggie.  I am happy to report that he is o.k., thanks to a very kind and thoughtful big brother.

Micah heard me worrying about taking Brown Doggie on vacation with us, and asked if he could help by telling Jesse a made-up story.  He was a little worried about telling a story that was not true, but we reassured him that a pretend story about a pretend/stuffed animal would be o.k., just like a story book or bed-time story.

So, on night 4 of Jesse going to bed “all alone,” Micah told him a story that went something like this:

Once upon a time, in a kingdom far, far away, there was a boy named Jesse who had a very special brown doggie.  But one day, an evil witch put a spell on Brown Doggie, and all of Jesse’s other pets, too.  The spell made the animals fall into a deep, deep sleep.  Jesse thought his pets were dead, but they were just sleeping from the spell.  Jesse was very sad.  Then, Jesse got some special magic medicine to break the spell.  When he gave the animals the medicine, they all woke up and were as good as new!  Brown Doggie was so happy to see Jesse that he licked and licked his face, and Jesse was so happy to see Brown Doggie that he snuggled him all night long.  And, they lived happily ever after.

Then, we gave the animals medicine, and I had Brown Doggie bark and lick Jesse’s face.  The little guy grinned and squealed and hugged his Brown Doggie tight.  And, now things are back to normal.  Brown Doggie is on vacation with us, as real as ever.  Just this morning, Kaylie got in trouble for pulling on his fur and hurting him.

We are having a wonderful time at Great Wolf Lodge, and have met some really neat families through the IDSC.  I am so grateful for the amazing community we have!