New life has bloomed here…

For anyone who grew up in a church where this song follows the benediction, you just broke into song.  Haha!  While we’ll look into that later, this post is about new life, new beginnings, and… wait for it… normalcy.  Yahoo!

I know I haven’t posted in several months.  Part of me has just been busy… the other part of me wrestled with the progression of this blog.  We had a wonderful holiday season AT HOME and have had just minor bumps in the road this winter.  Ellie’s pretty much been a hermit most days.  We have taken her to church maybe twice in the past three months… she goes on grocery shopping trips when we don’t have a nurse at home… she went to a Valentine’s event for our local Down Syndrome Association… she even went to the zoo with us once.  But she’s really not been out much this season because there are just too many sick people out and about for me to risk it with her. 

Since many of you haven't seen her in person in a while... she is getting bigger 

and rocks some pretty cute curly pigtails sometimes.

While we always have plenty of updates for Ellie, we’re also at a point in our lives where we just have a lot going on with all of the kiddos and I struggle to focus on just her with this blog.  I also have so much of my heart that’s in a happy place with her and wanting to share that sunshine with other families.  I’m not exactly sure what that direction looks like yet or how to keep this blog focusing on Ellie when there’s so much else happening in our household.  This is why I’ve struggled lately with posting… it’s ridiculous, really… but something that my brain has been keeping me from doing for a while.  I guess I’ll just go with the flow and see where that takes me.  On to general updates:

Lance just turned six and is one smart little dude.  He’s reading well and is obsessed with science and nature.  He’s likely the child that we have the most focus on right now, though.  As a family, we’re working through his ADHD diagnosis and trying find the best course of action to help him thrive.  When I used to joke that I “was too ADD” for certain activities… I had no idea how real and difficult ADD or ADHD were.  It’s crazy, y’all.  Of course, it’s nothing life threatening, just something we have to help him navigate.  The part of me that hurts the most is my own frustration levels with it.  There are things he does that make my blood boil.  Sometimes it’s totally his fault, other times I wonder how much control he has.  So my job (our job) is to do everything in our power to help him feel a sense of control over his actions.  We can see his outbursts manifesting in his relationships with others, too.  When he’s the aggressive kid (even if he’s tiny), it impacts his ability to make friends and interact well in a social setting.  That part hurts me, too.  Academically, he’s a rockstar (in my humble opinion, of course).  He’s doing well there and usually makes easy work of his homework.  Half the time, I don’t even have to read the directions to him because he is reading them to himself.  I don’t remember being able to read that well in kindergarten.  He turns everything into a math or science problem… and then tells me how things work (like gravity, or what stars are made of).  I’m amazed.  Now if that would just carry over to the social aspect of his life, we’d be golden!

Blowing out candles on his birthday cake.

Kaleb… he’s a sweetheart, but a soft heart.  He’s obsessed with taking care of his babies (stuffed animals) and being a superhero.  When he’s in a crowd, he’s often a dinosaur that roars at others… weird, I know.  He’s only four and I think he’s solid with his schoolwork, but there is a huge difference in the rate of absorption between our two boys.  Lance would count and write and identify all of his letters.  Kaleb doesn’t seem to be as interested with school.  He gives me daily updates on who he played with and what his snack was.  I think that’s fair for four, right?  He is upstairs right now wearing a hard hat and having a sword fight with a race track.  He’s pretending the lengths of track are snakes that are trying to eat his stuffed animals and he’s the zookeeper defending them.  That’s Kaleb.  His imagination is wicked vivid.

Peeking out from the top of his fort in the livingroom this week.

As many of you saw on FB, our little Bug took her first steps on January 16^th.  What a celebration this was!  We’re just pushing her more each day to get her form correct and get her to walk further and such.  We’re still battling storming episodes, but only when she’s sick.  They’ve always been idiopathic, so we’re not 100% sure what’s causing them, but we’re pretty certain it’s a combination of congestion, physical stress, and sleep apnea. 

On Thursday, I was working later and Brandon was catching up on school work.  All of the kiddos were in the family room watching a movie.  I went over to check on them and then into our room to see if Ellie was maybe sleeping by Brandon while he worked.  Brandon thought Ellie was with me.  I asked the boys where she was.  Lance shrugged without looking away from the screen and Kaleb said, “She went upstairs”.  What?  Brandon and I raced up the steps to see if she had, indeed, climbed the wooden steps by herself with no supervision… she had.  She went into her bedroom, closed the door, and started emptying her medical supplies all over the floor.  What a turkey.  She was rather proud of herself.  I think we won some kind of parenting award for that one, right?

In other family news, we bought some chickens.  I know… this isn’t news… but hear me out.  We have had chickens every year for quite some time.  The boys loved them and I loved to have them for two reasons: they lay eggs (and we eat at least 3 dozen of those a week), and chickens have always been calming to me.  If you’ve never sat and watched chickens for a while, try it sometime.  It’s really quite serene.  Now, when Ellie was little and hospitalized so much, we had no way of caring for our girls and had to give them up.  For the next two years, we went without chickens because we never knew what one week would bring from the next.  We were too preoccupied with what was going on with Bug to chance starting our little barnyard again - until now.  We finally feel like we’re in a solid place to start expanding our little family (in the form of animals… no more small humans).  So chickens are it right now.  Hoping to also add bees soon… who knows from there.  I feel like if we live in a farmhouse, we ought to have at least a few farm animals, right?  Chickens are a good start… a small celebration of stability.

We ordered our chicks online and picked them up at the post office.  Kaleb wanted them to ride next to him the whole way home.  We so missed the sound of chirping that filled the van.

Day 1:  we have 16 of them... and they're much bigger now.

That also brings me to a little, insignificant phone call I got about two weeks ago that really caught me off guard.  It was from Dayton Children’s and the woman on the phone was asking if she could pre-register us for Ellie’s ENT appointment on 3/1.  Of course, she could… but I was really confused.  I said, “Have you changed your policy on this or something?  We’ve never gotten a call like this before… we always just go up to the counter when we arrive and let them know that none of her coverage has changed.”  The lady said that if we hadn’t been seen in over 30 days, then it’s their policy to give a courtesy call like this.  HOLD THE DOOR – we haven’t been seen in 30 days?  That’s amazing!  That’s not happened to us before… thirty days without stepping foot into a hospital – yahoo!  I’m sure it was nothing to her, but to me… that seemed like a huge accomplishment.  Not only has Ellie not had to be admitted due to illness, she is now more stable and doesn’t need to be seen by her specialists as often.  Cue the happy dance!

And as for that appointment with ENT… well, we were finally given some sort of timeline for decannulation… and it’s very exciting.  Early in April we will go in and Ellie will get another sedated airway evaluation in the OR.  That night, we’ll be admitted and she’ll undergo a capping trial at night (we do this on the regular at home, so it’s not something new).  She doesn’t like it, though.  The next day, her surgeon will remove her trach.  If all goes well that day, she’s scheduled to undergo a sleep study that night sans trach.  This is a big deal, y’all!!  Again, if all goes well, and she’s able to get through her sleep study without her trach… she will likely be going home without it.  We’ve spent the past 2.5 years living the trach life… so I’m not even sure I’ll know what to do with myself… but we’ll be celebrating, for sure!  We’ll have to think of some way for y’all to join us in this celebration.  

We’re hopeful that the timing laid out works as planned.  If it doesn’t, well… waiting is nothing new for us.  There are a lot of “if all goes well” in this plan.  But it’s the first time we’ve had a tangible plan with dates and scheduled appointments to move in that direction.  If y’all can lift some prayers that we can do this #decan business, we’d be ever so grateful.

So as my daffodils start to emerge along the sidewalks, we celebrate new life, we celebrate unexpected little mercies, we celebrate normalcy (or our own version of it), we celebrate having a plan (even though we know it’s all God’s timing, really).  Celebrate with us, will ya?  And for any of you wondering about the title of this post and the song that goes along with it, here are the lyrics.  Pretty fitting for the road we’re currently on in this crazy life:

New life has bloomed here

God’s love has warmed us

Now the world calls us

To spread that love

God’s peace go with you

May it sustain you

And bring us together

To praise God again.

More on the “Now the world calls us…” part in another post… coming soon ;)  Until next time, friends, here are some pictures of some of our shenanigans over the past several months.

 This is exactly how all of our pictures with Santa look this year.  Awesome, right?

Christmas morning at our house

 

This is seriously how he ate his ice cream cone... and yes, 

he bit a giant hole in the cone 1st... it did not end well.

 The addition to Amos Memorial Public Library in Sidney is AWESOME!!  The kids love it.

Just before Inspired By closed their doors last month, we took the kids there to paint pottery.  Kaleb did an amazing job of spilling his glaze all over himself.  It washed out just fine.

Lance picked out a tinsy tiny reindeer to paint.  It's about the size of an eraser... but it's cute!

And if you happened to miss my post on FB about this, Ellie was featured on 22 different rotating billboards in the Cincinnati area in early February.  Doing our part to raise awareness for CHDs!