PTSD and Elisha's heart surgery. All in the day of a life of the Allreds.

Tuesday at 4:00 pm. (after nearly 6 hours of waiting) I was at Sacred Heart Medical Center in Spokane, Washington entrusting the life of my oldest child to the cardiologist for heart surgery.  This was the second child I've had endure heart surgery.  I didn't like it any more the second time around than I did the first.

In fact, this entire experience has brought round a pretty good case of PTSD, and an enormous amount of retrospection over Jacob's life during the past 4 years - not to mention many prayers of thanks for Elisha's.

I couldn't help but remember the day I was at the OBGYN and he told me Jake would have Down syndrome and a pretty significant heart defect.  He asked me if I wanted to abort.  The answer was immediate and adamant.  "Absolutely Not!".

As I prepared for Elisha's surgery, I often wondered how many parents have aborted a fetus merely on the basis of a heart defect.  Their worry that the child would not have a normal life, that it would be riddled with pain, sickness, or inability to be like the other kids.  I know pain was my first thought with Jacob.  How much pain would he be in? Could I, as his mother, handle watching my child with an enormous hole in his heart, suffer as a child?  Would the operation hurt?  Would he survive. After all, it IS his heart.  It's not like they're fixing an ingrown toenail. What would his quality of life be?

Those first three months with Jacob were as bad as I had envisioned them to be.  He was soooo very sick. He spent nearly every night of his first three months of life in the hospital, and I would sleep with him on my chest so that he could be upright and breathe easier.  He was so sick and listless his therapists were afraid to touch him and refused to treat him until his heart was fixed.

What I can tell you though, and I'm sure you've deduced from past and recent posts, is that the moment he had his surgery, a light flicked on and he turned into this crazy-busy fantastic little boy who laughs and giggles until everyone else around him is laughing and giggling.  He's smart, and mischievous, and adorable, and stubborn, and everything I could have possibly hoped and dreamed for in a little boy.

Now I look at Elisha, who apparently has apparently spent her entire life with a rather large hole in her heart as well.  How the doctors never caught it, I'll never know.  The first cardiologist diagnosed her with a large PFO (Patent Foramen Ovale).  On a scale of 1 to 5 (5 being the largest), he was pretty sure she had a 4 or 5.  And when she bore down (flexed her stomach muscles), there was a massive amount of shunting from the left atrium to the right (upper two chambers), almost as if there was nothing there to hold the flow of the blood back.  A second opinion proved that she didn't have a PFO, but an ASD (Atrial Septal Defect), which means the wall of the atriums didn't fully close and there is a permanent hole in her heart that will never (obviously, because she's 19!) close on its own.

How did this hole affect her growing up?  Well, she had a few bouts of passing out, and she was constantly tired.  She had little or no stamina during sports.  But you know what else?

Elisha was also ASB president, All Conference Volleyball, 2-time state champion thrower for track, All-State/All-Northwest choir, went to state 3 times for choir, and is now a Division 1 track athlete.  Did the hole in her heart affect her.  Yeah.  It did.  If it didn't we wouldn't have been taking her to the doctors and found it in December.  But the things she was able to accomplish in spite of it, are amazing. You can check out ELISHA's webpage here.

I wonder how many families choose to abort their fetuses because of a heart defect and never realize what an amazing opportunity they're missing, and how normal a child's life can be in spite of a congenital heart defect.  I sit here and shake my head.  What a loss. And how lucky I am to have had faith and know that everything would be alright.

With two children having heart defects, I'm not sure if their connection is genetic or just really really bad luck.  But what I do know is that there was a lot to be learned from the eperience.  Not only for myself, but Elisha has learned and matured from it as well.  It puts life into perspective quickly.

We have several moments to pause and think hard in the last few days. Especially when her heart rate plummeted during the initial IV insertion from 78 beats per minute to 35 and the room went from 1 nurse to 4 in seconds.    And again when her doctor came to us after her surger and mentioned that her heart had stopped for four seconds before they'd even begun the procedure.  All the sudden even the most invincible person becomes mortal. And it scares you.  It definitely scared me.  And it prioritized my life quickly.

After much consideration, Elisha and I have decided to start a non-profit called Allred Hearts.  It's for families affected by congenital heart defects.  If you walk the halls of Sacred Heart, you see entire levels dedicated to people with heart issues.  And having two in our family with a CHD (Congenital Heart Defect) we are acutely aware of how it affects a family and how much help and support a family needs during the process.  The night before her surgery, Elisha helped me create the logo for Allred Hearts.

Our family has been through it all.  Open heart surgery, a baby with surgery, a college student with heart surgery, being denied by insurance, the uncertainty of life with a CHD, and the promise of life after heart surgery.  We've felt the pain, the stress, the hope, the love, and revelled in the little moments that such experiences help us to realize and appreciate.  We hope to share that with others.

Please, help us to help others.  Show your support to Elisha, Jacob, and our new endeavor, by clicking on the logo Elisha created, and helping us to create the non-profit.

Thank you, everyone, for your love, support, prayers, and help over these last few months (for Elisha) and years (for Jacob).  We could never have done it without the help of such a great community of friends, family, loved-ones, and KC's work, Avista.  It has been the thousands of acts of kindness that have helped us get through so many trials.

Many thanks,

KC, Susan, Elisha, Nathan, Courtney, and Jacob Allred.

It's that time again - IEP Review! How is Jacob's Progress?

The last day of school before Spring Break, it was time to meet with all of Jacob's Therapists to go over his latest progression.

I'd just finished Courtney's parent-teacher conference, which took a whopping ten minutes, so I figured Jake's might take about twenty.  I left the building an hour later.  Whoa.  How do I forget how in depth these things are?

In their defense, most of the stuff I either already knew, because I was dealing with it at home, or it was positive.  There's just a whole lot of ground to cover when you need to review Jake's progress with four people instead of one.

For occupational therapy, they discussed how he's learning to button things.  I politely informed her that this was a skill I would NOT be encouraging at home, because Jake's inability to unbutton his shirts are the only reason why he is clothed AT ALL at home.  They laughed.  I did too. But I was serious.  That kid is like Houdini with his clothes.  Shoes off on the bus, pants off the minute he gets inside the door, and if I'm stupid enough to put on a T-shirt, that thing is off in 5 minutes or less.  Then I spend the next 5 minutes running after a seriously FAST 4-year-old boy as his laughter echoes off the stairwell while he escapes my reach.

Jake's occupational therapy is working! Look at that circle!

Next, we talked about how Jake has gotten pretty doggoned good at drawing circles, but they're still working on the cross shape.  I agreed.  I informed the ladies that you know you're a parent with a special needs child when you look at the walls ready to scream, but stop when you see a perfect circle drawn on your wall in sharpie and marvel at how beautiful it is (thank goodness it was in the laundry room!).

The physical therapist told me how Jake is getting better at following directions.  When he first started with them, they'd go into the gym for PE and he'd stare off at the walls marveling at the giant mascots painted on the walls.  Now he will sit, participate, and pay attention.  I agreed.

 Picture courtesty of  Geri @ EACAP

Jake's ability to follow instruction (better, but not perfect) is the one aspect of his development I'd noticed the most in the past several months.  When we started at the school, we were expected to wait outside by the street for the bus to arrive, which wound up being 5-10 minutes of me either grabbing him to keep Jake from running into oncoming traffic, or holding his flailing body because he wanted to RUN!  Now, he and I will stand in the driveway and play.  He knows that the road is off limits and that he needs to stay on the driveway until the bus stops and the doors open.  It makes the bus portion of school so much easier on me now that he can follow instructions and knows some basic rules.

Picture courtesy of Geri @ EACAP

Speech therapy was the most entertaining, though.  It seems that Jake likes to pick his favorites and his least favorites.  With his least favorites, I swear he knowingly and willingly makes their lives miserable all day, every day.  At Children FIRST, it was poor Shawn, Jake's Physical Therapist.  I adored her, but for some reason, Jake was stubborn as stubborn can be.  She would often talk about Jake's Downsitude (Down syndrome attitude).  And it is TRUE.  That boy is stubborn beyond belief.  I know ultimately that stubbornness will enable him to persevere as an adult.  As a child, it's annoying as HECK.    Back to the story....Jake's speech therapist is his new focus of his "Downsitude".  He won't enunciate anything for her, or even make a sound.  I tell her about what he's doing at home, and her eyes get wide.  "He's not doing that here."  Figures.  Jake can be such a goober sometimes.

Picture courtesty of Geri @ EACAP

And, just to make his point, as we were leaving his meeting, I asked him to say "bye" to the ladies, so he turned around, waved his hand and said, "bye-bye", which was met with several squeals from the ladies as he walked out the hall and out the door to celebrate a 1-week spring vacation from school. :)

Update on Gemiini.org - It's been a long time coming!

What does a crab say?

Holy cow!  I did NOT intent to go six months before returning Jacob to the Gemiini Program. But, life, being life, threw us a curve ball and we've been knocked flat on our butts for the last four months dealing with test after test, blood work and doctors appointments for our oldest daughter (age 19) after it appears she had a TIA (a mini-stroke) at Christmas. 

Come to find out she has a hole in her heart and a macro adenoma (tumor) on her pituitary gland in her brain.  But....that's a story for another blog :)

During that same time, we discovered that Jake's T-tubes had fallen out.  How can that possibly be? Those buggers are sewn into the ear drum and don't fall out. They're surgically removed. 

Yeah, well.  This is Jake we're talking about.  If it can't be done, he will do it. 

So, in January, he had his second set of tubes put in, and the ENT said this ears had looked horrible when he did the surgery - pieces of flesh were removed, both ears were highly inflamed, lots of fluid behind the eardrum, etc.  Yeah, all sorts of nasty fun. 

But, when the surgery was done, he began to hear.  How do I know?  Well, he'd walk into the ENT's entryway, which was basically a stairwell, and yell to hear his echo.  It was adorable - in a cute sort of way.



What does a Lizard say?

We took him to an audiologist twice to make sure that he could hear and were told that he can hear down to 2 decibels (he's in the range of normal).  Wahoo!

Now, we begin playing the game of catch-up.  Still, at 4 1/2 years old, Jake is basically non-verbal.  Occasionally (as in once every 2 or 3 weeks) he will say a one or two word comment, which his hard to understand unless you're looking for it.  But other than that, life is all about a series of grunts, hand gestures, and pulling on my hand to show me what he wants.

Last week we were finally able to start Gemiini again - after nearly 7 months.  I figured we'd be starting all over again.  But you know what?  It wasn't like that at all. 

As soon as the videos came on, it was like he'd found his long lost friend.  Jake looked at me and his eyes lit up, then he began mimicking the animals and the sounds he'd learned previously.  It was like he'd never stopped!  I can' tell you how nice it was to know we hadn't lost all his hard work. 

We were able to get about 20 minutes in that morning.  And another 10 in during the afternoon. 

The big issue we're having right now is that I'm using the Ipad and he likes to play with the buttons - hitting play, then rewinding, then fast forward, etc.  I think it's a universal thing for kids his age.  I hear there's a way to lock the screen, which is my goal to figure out tonight. 

But I know that people were waiting on an update.  So this is the first.  I'll add a video of him watching Gemiini in a couple days so you can see where he's at in the process. Then I'll give you more updates as we progress.

Thanks for your patience!