Shriners, a New Hat, and Therapy

I'm afraid this post got written about December 20th.  Then I got distracted and didn't get it posted.  But it's still good, plus a fun, new development at the bottom.  Of course, this was all before he decided to get sick.  So our "talking" therapy has been suspended until he feels better and is more likely to keep breathing without help.  (Yeah, just a minor issue there.)  

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December 20th, 2012

Aaron has scoliosis.  Yep, his spine curves.  The good news is that while it's not straight by any means, it's not very bad, yet.  Because of his very low muscle tone, he has a hard time supporting himself, which leads to the curvature.  So we've been consulting with the great docs at Shriners and it's been decided to make a brace for him.  It will encircle his torso, but he'll only wear it when he's sitting or standing.  You know, when he needs that extra support.

Before making the mold

After, such a sad boy.  :(

He thought everything was kinda funny, until they started to wrap him to make the mold for his brace.  Can't say that I blame him.  He was lying on a wide strap  (about 3 inches wide), suspended above a table, and being held by me and another therapist so he couldn't fall off.  That was not great, but okay.  Then they started wrapping him up with some wet fiberglass.  That was NOT okay.



Poor baby was very upset.  In fact, it took me several minutes after it was all over to calm him down, and then he was exhausted.  As soon as he got in his car seat, he was out.

All tuckered out and on the way home.

And notice the really cute hat he's wearing!  A dear friend brought it for him.  He'll actually keep it on.  That may be because there's a strap that helps it stay on.  But since he won't wear a coat, the hat plus a blanket do a pretty good jobs of keeping him comfy.






One of his therapists brought some marker paints with her to see if he could/would want to make a picture.  He had so much fun that we've been doing it a lot since then.  I love that we've got a great INEXPENSIVE way to do therapy with him.  Several of his therapists bring iPads to work with him.  And they're great, and he loves them.  But yeah, when the 45 minutes are over and they leave, so does the iPad.  But markers and paper?  Yep, got those here already!

The picture I made in therapy!

 Playing with my brother.  Love my Michael!

Sleepy time.

In October, Aaron was given a speaking valve, or PMV.  It's a special valve that goes on the end of his trach when he's not on the ventilator that allows him to make noise with his vocal cords.  The challenge is that he has to learn how to breathe differently.  He has to breathe in through his throat, but then out through his mouth and nose, not his throat.  This valve has a one-way valve which allows him to breath in through it, but not out.  And it's new, weird, different, and HARD.

In October, when he tried it, he would only make it five to ten seconds before he would start to struggle.  And it was five seconds if he was awake and ten if he was asleep and it took that extra five seconds for him to realize that he wasn't happy!

Yesterday, I got it out again, just for gee whiz sake.  And he was doing it!  Granted, only for a few minutes at a time, but he got it!  And a few minutes up from five seconds is huge.  If you've got a little one, just take a look at them and imagine not being able to hear them make any sound.  Yeah, I know the crying and screaming can get on your nerves, but what about the coos and babbles?   And if those cries were silent, I know they would just break your heart.

Here he is, trying to figure out how to use his voice.

So yesterday was a red letter day around here!  His voice is kinda rusty, but yours would be, too, if it'd been over two years since you'd used your vocal cords.  He's not really sure yet how to make many sounds, but a couple times he'd make a different noise and then look so surprised, like, "what was that? Did I do that?"  Just tickled me pink!

Although the world is full of suffering, 

it is full also of the overcoming of it.  

~Helen Keller

Visions of Sugarplums, and Bikes and Luggage and...

Christmas Day has come and gone.  And it was a very good day.  A day we will all remember for quite a long time.  It started out kinda slow.  Especially for Aaron.  He tried to stay up and catch Santa, but the ol' man was just too tricky for him.  Even so, Aaron didn't go to sleep until 3:30 a.m.  Needless to say, he wasn't much for waking up to unwrap his presents when everyone else did.

Those visions of sugarplums
just won't let go.

It was a day full of games and laughter, and of course, lots of sugar and chocolate.  Christmas day is the one day where good-for-you food is definitely available and easy to get, but there are very few restrictions on what and when things are consumed.  Here are some shots from our wonderful day together.

Santa Really Came Through This Year.

The bikes here have been out of commission for quite some time.  Michael, Andrew, Joseph & Matthew are anxiously waiting for the snow to go away so they can try them out!   (Let me tell you, Santa and a couple of elves really had a time trying to wrap these things!)

Jonathan has been wanting a new
suit.  He looks GOOOOOD!
We'll have to get some pics before
he goes out this weekend.

 Think a couple of kids are planning to leave the nest soon?

Our resident artist is going to be set!

Someone worked extra hard to make some 

beaver fur throw pillows.  

The fur is really silky and I've never felt 

softer leather than the undersides.  

One of our kids commented that Mom & Dad
are being dragged into the 21st Century whether we like it or not.
I'm thinking we like it just fine!

Once he finally woke up, Aaron really got into the spirit of things.  Like a lot of toddlers, he had a blast with the paper.  But the looks on his face were so funny!  

"Wait, I worked hard to get that off.  What do you mean, you're taking it away from me.  Oh, hold on, I'll just grab another piece!"

I am so grateful that we had this day together.  Last night, I was remembering Thanksgiving morning, 2010.  I didn't realize how precarious Aaron was at the time (he was LifeFlighted from our home less than 24 hours later), but I did know that something wasn't good.  I remember standing over him and crying, and telling William that I just wanted to have one Christmas with him.  We've now had three, and I feel so inadequate to express my gratitude for these blessings.

So many struggle with family issues, with loss of one sort or another (because loss comes in many, many forms).  Our family isn't perfect, far from it.  But it's ours, and it's a good one.  As I watched my children yesterday, I remembered so many children who are spending Christmas in heaven, whose families decorated their graves with lights and trees and toys, instead of watching them play with them here.  They weigh heavy on my heart and I pray that they felt heaven watching over them, especially yesterday.

We had planned to leave today to spend the next week with my family in Arizona.  Because of various crazy schedules, we haven't all been down at the same time there for several years now.  But over the weekend, several in the home have come down with the coughs and sniffles.  Probably not a good idea to confine Aaron in a car with that for 14+ hours.

And then he decided to get in on the game, too.  So we're spending a quiet week at home.  And we'll be praying we get to STAY at home.  But I have to say, even when he's sick, Aaron is still happy and playful.  So for now, most of the time he's just fine, and when he has a rough patch, we work through it the best we can.  But Santa really came through for him, too.  Because if you remember, what Aaron wanted for Christmas was to be at home.  And he was.

Like snowflakes, my Christmas memories gather and dance - each beautiful, unique and too soon gone.  

~Deborah Whipp  

Mary's Birthday!

Twenty years ago, (plus 2 days, I get behind here) Mary was born.  She was the best Christmas present William and I could have!  She was born four days before Christmas and two weeks early, which was just fine by me.  

Three weeks later (Gramma Brown came and help the for the week before) Mary joined me in class at BYU.  She attended 18 credit hours of English with me that semester.  Maybe that's where she got her love of the English language and the written word.  It's now HER major at BYU, too. 

One day in my Elizabethan English class (only 15-20 students) the professor asked a question, which none of us were prepared to answer.  Mary babbled something and he remarked that obviously the baby knew the answer, now would someone like to translate? Since she was making noise, I took the opportunity to escape.




Mary is our princess, so she got a princess cake complete with a crown.  I wanted to make it a special one since next year she won't be with us.  She's getting really excited about her mission.  It will be interesting to see where she serves.  The Canada Vancouver mission takes in almost all of British Columbia, so she could see a wide range of climates.


She's also our resident lefty.  What fun she had coloring with Aaron.  Turns out he's a lefty, too!  She had put the marker he chose into his right hand, but he really didn't do much with it.  Then she switched to his left hand and watch out!  That little guy sure went to town!  

Choosing a color.

Right hand, ho hum.

Left hand, look at him go!!!

Two tired sisters.  That's one way to be able to rest.

Happy Birthday, Mary.  I'm so glad you came to our family.  I picked out your name, Mary Elizabeth, before your older sister was even a full day old.  Somehow I knew she would have a younger sister and was already praying for you.  Love you, kiddo.

A daughter is a little girl who grows up to be a friend.  

~Author Unknown    

Christmas Fun!

Everyone's home, relatively speaking.  At least, when they sleep, they're all sleeping under my roof.  Now, whether we're all actually IN the house at the same time is another story.  But whatever.  They're here!  The younger boys and I went down and moved David and Mary back on Saturday morning.  

Last year, we tried to make melted snowman cookies.  You can find my post about it here.  It was lots of fun, but as far as success in making wonderful, artistic cookies, well, maybe not so much.  This year, we decided to try something different.  Something that took a little less creative juice, but still a lot of fun:  Candy Sleds!

I'm not sure what was more fun:  making the sleds or racing them!  William's was a real work of art.  Matthew's resembled the grinch's sled after he raided Whoville.  I don't think another piece of candy could have fit on there, even with the help of the glue gun!

Candy sleds and races!  So much fun!

Christmas is the keeping-place for memories of our innocence.”
~ Joan Mills  

Teeter-totter

Remember the teeter-totter you played on as a child?  Up and down, up and down.  If you were lucky enough to have a partner who balanced you well, AND a really big board, your view could change dramatically as you played. 

This week has been somewhat of a similar ride.  If you read my last couple of posts, you'll know that, at least initially, the results of Aaron's heart cath were less than ideal.  And yes, we're once again we're begging God for yet another miracle.  He has answered our prayers so many times, and no, I don't believe when Aaron does pass away that it means that He has quit.  But so far, it seems that our prayers and requests have been in tune with His will.

So anyway, Monday morning, bright and early, our cardiologist calls. He wants my permission to take Aaron's case before the surgical board.  He feels that now is a good time to close his VSD and that while, yes, there are risks, it is better to do it now for a variety of reasons.  This man has been following Aaron since before his birth, through his bout with heart failure, and so forth.  He's a great advocate for Aaron and truly cares for him.  After speaking with him about risks, etc, I agreed that talking to the team would be a good idea.

Wednesday afternoon, he calls back again.  It seems that in looking closely at the results with the cardiologist who performed the procedure and in talking with the team, that it's not quite time yet to do the surgery.  The balance between doing the surgery and the risks is tipped when he's shunting more blood through his VSD and routing blood that already has oxygen back through his lungs. 

Those of us without that hole in the heart send 100% of the blood we're supposed to through the lungs to pick up oxygen.  It then returns back to our hearts to be sent out to the body.  Because the left side of the heart has to send the blood farther, it's stronger, about four times as strong as the right side, usually, that is. 

When Aaron was in heart failure, his right side pumped harder (not good) and his heart was moderately enlarged (also not good).  We had to make his heart not work as hard and work more efficiently. 

Now, his heart is slightly enlarged (better) and his right side doesn't work quite as hard (also better).  BUT because of his pulmonary hypertension, the right side is still stronger and working harder than it should have to.  Back to the percentage of blood that is pumped to his lungs.  When a child (baby?) is sending 200% of the blood that the pulmonary artery is supposed to handle, it is time to close off the VSD.  When Aaron is getting 100% oxygen, his blood flow is at 180%.  The extra oxygen attracts more blood into the lungs.  But we don't have him on 100%.  He's closer to 24-30% (room air is already 21%).  And at that rate, he only sends 120% through, or an additional 20% more than he's supposed to. 

And because he does have the pulmonary hypertension (think high blood pressure, but to the lungs, not through the whole body), it's better not to close off that hole too early.  So the long and short is, we're still waiting.  Most children with a VSD need it closed before their first birthday.  Aaron is, once again, writing his own story.  And we're still playing the waiting game.  But we're loving every minute we get with him. 

One of my favorite hymns is "Count Your Many Blessings."  It dawned on me the other day that the hymn starts, "When upon life's billows you are tempest tossed..."  It doesn't say, "when the sky is blue and the birds are singing."  It doesn't say, "when everything is perfect and rosy."  It says when you're struggling, when it looks like you're drowning, when it seems like everything is conspiring against you and there is no hope.  THAT'S when you need to count your blessings.  So we will. 

We have been blessed with nine beautiful children.  True, one is not "healthy" in the sense that most think of it.  But his spirit is more healthy than any I have ever known.  And our other children try so hard to make wise choices.  We have a warm home, plenty to eat.  Many friends and family members who uphold us with their love and prayers.  And so many, many more blessings. 

Last week, I was blessed to sing in a community Christmas concert.  Two songs in particular really impressed me.  In "Sussex Carol," we sing "Then why should men on earth be so sad, Since our Redeemer made us glad."  And in "Good Christian Men, Rejoice,"  "Now ye need not fear the grave, Peace! Peace! Jesus Christ was born to save."  And then just the carols we sing all the time, songs of our Savior's birth, the hope and peace and promise it brings.  I am so grateful for the chance to sing these prayers, grateful for the reminder when I felt so fragile, so broken and unsure.  Grateful for my Savior.

Glad To Be Home

We got home yesterday, put Aaron into his bed, and he promptly fell asleep, for a LONG time.  He woke up briefly a few hours later, played and smiled a little bit, and went back to sleep.  I think he likes his bed.  What do you think?

Anyway, last weekend, Aaron got to see Santa.  When he asked what Aaron wanted for Christmas, one of his brothers piped up, "Aaron wants to be home and not in the hospital for Christmas."  Santa said we could certainly work on that one.


And for those who have read the last post, yes, we're storming heaven's gate for yet another miracle.  Our God is a God of miracles.  We have seen many, many miracles in Aaron's life.  And yes, I know this live is not the ultimate goal.  None of us get out of here alive.  But my my mother's heart just isn't ready to let go yet.  I suspect it never will be.  So please, join us in praying for another miracle.  Please pray for our little man.

“I am realistic – I expect miracles.”

                                       Wayne W. Dyer

His Heart

December 7th, 8:00 p.m.

Aaron's heart cath is over.  He seems to have tolerated it well.  Now comes the big decisions.  It seems that in looking into the heart itself, things are much clearer, and different, than they've seemed with the echos.  Or it may be that it's recently changed.  Whatever it is, it's not the same (mostly) benign issue that we thought he had before.

Warning:
I'm still trying to figure this all out myself, and I'm liable to use terms without defining them.  This is mostly so I can try to figure out what's happening, and make a record of it.

This is what Aaron's heart looks like and what is now happening with it.  A normal heart doesn't have the hole where the red and blue blood mix.  And his echos have previously shown that the blood wasn't mixing much at all because the pressures between the two sides was fairly equal.  Now the game seems to have changed, drastically.

Aaron has a hole, or rather a few holes in his heart.  There is one moderate-sized one in his ventricular septal wall (VSD) and a few smaller ones in his atrial septal wall (ASD).  Frankly, I don't care much about his ASDs at all.  In "normal" people, ASDs don't cause issues until the 40's or 50's.  Given that the oldest full Trisomy 18 person was a girl who lived into her early 30's, they're not a concern to me.

But the VSD, yeah, that one's causing some problems, and it looks like they're pretty big problems, too.  See, he's shunting (sending blood) from the left side through to the right side, where it then circulates back into the lungs again.  This puts more stress and pressure on the pulmonary arteries, which causes them to become stiffer.  Stiff arteries are not good, not good at all.  Like, very, very bad.  And once they stiffen, they don't "unstiffen."

But if they've become too stiff already, closing off the VSD could also be fatal.  So there's some hard decisions to be faced.  Do we do a surgery or not?  Will they even offer it?  Or is it too late already?  And yeah, once again, I'm feeling kind of brittle and fragile.  Just yesterday, I was thinking that I had finally hit my stride again, almost three years after his diagnosis.  (That's a LONG time to recover from childbirth, in case anyone's wondering.)  I should have known better...

10 p.m.
The cardiologist came in and it looks a bit bleaker.  He said that once he ran the numbers, it became apparent that his arteries are already pretty stiff.  He did say that sometimes, sometimes, it gets better.  But at least for now, surgery is not an option.  He said there may be some other options, and that for those "normal" people who have a VSD that is missed until too late to repair surgically, they often live into their 20's and 30's.  That's still quite a ways off.  But then, before he was born, I remember thinking that if I could just have four months, that was a long time.  Now, 2 1/2 years isn't nearly long enough. 

Anyway, we'll have to wait and see what Aaron's cardiologist says.  And now, I'm going to bed.  It's been a long day, and I'm ready for it to be over.

When you are a mother, 

you are never really alone in your thoughts. 

A mother always has to think twice, 

once for herself and once for her child.

Sophia Loren

A Foot, or Two

There's a popular primary song where the kids sing, "I hope they call me on a mission, when I have grown a foot or two."  I think David started singing it when he was about three, and he would have been about three feet tall.  Not, only has he grown that foot or two, he grew three!  And his call has come! 

David will be entering the Missionary Training Center on January 30th and serving in the Oregon Portland mission speaking English.  He is sooooo excited.  I'm feeling like it's just right around the corner and trying to figure out how to get everything done.  His blog is linked over on the left-hand side, right under Mary's. 

I remember the little baby I held, and the toddler that couldn't speak.  Somehow the years have sped by and that little child has grown up into a young man with a love and desire to help others know what he knows.  It won't easy, but he'll do just fine.

Missionary:  Someone who leaves their family for a short time that others may be with their families forever.