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.

Visiting the Cardiologist

This week was heart week for Jacob!  It had been 18 months since he'd seen the cardiologist and they wanted to do a checkup to make sure his ticker was still working properly.

We had planed our echo cardiogram for 11:00 a.m and then were scheduled to see the cardiologist at 12:30.  I knew we were in for a loooong day - especially since it's a 30 minute drive to see the Doctor.  So, at 10:15 little Jake and I were off to see the doctor! I had a bag filled with books, treats, videos, and a mental list of things we can do at the hospital where the cardiologist is located (since we're so well acquainted with it from past years!)

We show up at the cardiologist and Jake hit full-blown flirt mode!  He made his rounds to each of the little girls in the waiting room, then started flirting with the ladies at the desk, poking his head around the monitors to grin at them and wave.

He was all giggles and smiles until he took one look at the echo room - the bed,the monitors, the machines.  He didn't even walk inside before he totally freaked out.

Now, I expected him to be less than thrilled about an echo, but it has been more than 3 years since his heart surgery, and he's only had 1 other weekend stint in the hospital since then.  A full on melt-down was not anticipated.  But he looked like he was have a serious case of PTSD or something.

I had to pick him up, wiggling and wailing, take of his shirt, lay down with him on the bed, and physically hold his arms, legs, head and body while the poor technician tried to echo his heart.  30 minutes later, the technician gives up, telling me she's gotten as much as she's gonna get on my son.

We leave the room, both Jake and I looking like we'd just run a marathon.  I wish I'd brought another change of clothes.  Gah!

We head out to the shocked faces of the ladies at the front desk and are informed that we have 1 hour before we can see the doctor.  Undaunted, I tell them I'll see 'em in an hour, and take my son out to roam the hospital.

We stop by the Ronald McDonald House so he can talk to Ronald and give him a hug, then we go to the fish hall to listen to the fish, and check out the city from the sky walk.  Then, we went and had lunch in the cafeteria - which was quite exciting because there was no high chair and Jake was still grumpy from his appointment.  So even the dessert wasn't interesting him that day.

Finally, an hour later, we find our way back to the Dr's office and are called back.  The poor nurse tries to check his heart but all of Jake's happiness is spent so he just keeps swatting her away and insists on climbing up giving himself googly eyes in the giant mirror next to the examination bed.  But the sweet woman takes it in strides and goes to find the Doctor.

He walks in all smiles and sass (have I mentioned I like this doctor?) and tells me he's been getting lots of comments about how Jacob is full of 'energy'.  Laughing, I agree that his description is the most politically correct way of saying he's crazy active today.

Jake was nice enough to let the doctor listen to his heart for a minute, but nothing else.


And the prognosis is:  He sounds GREAT!  There are no leaks or issues whatsoever!  We don't have to go back for THREE MORE YEARS!!


It was totally worth the 5 hours of hospital time to get the news.

Stretching the Limits

This week my son turns three.  THREE!!!  How can that be?  It seems as if just months ago we were in the hospital fighting for his life, trying desperately to get him to gain the few precious pounds he needed for his heart surgery.

Now, we're beginning to transition from our early-intervention program, which consists of 2 hours twice a week to pre-school through the school district, which is 4 hours four times per week.

This move entails testing to see how far he has progressed in the three years of early-intervention.  It also allows the school district an opportunity to see where he's at developmentally, and how far he must progress in order to reach the capabilities of 'normal' children his age.

When I arrived at my 'meet the staff' meeting where we would establish his IEP (Individualized Education Programs) for the next couple years, I came prepared to be told that my son, Jacob, needed more therapy to keep up developmentally with the 'normal' kids.  And, although these well-meaning individuals come equipped with degrees and years of experience working with children with disabilities, none of them had met Jacob.  All they knew about him was based on predispositions and what was written on paper.

When I sat down at the table for our meeting I was faced with six staff members who would be caring for my child in one capacity or another for the next 2-3 years.  Each of the ladies were wonderful, personable, and truly had a desire to better Jacob's life.

The first person to speak was Jacob's new Physical Therapist.  She took out his test results based on the Peabody system and proceeded to tell me that there were many things they'd be working on with my son to get him 'up to speed'.  Then she asked me,

      "The test says he walks forward and backward.  Does he run?"

     "Yes,  he was running in the hallways on the way into class.  And he's really quite fast.  I need to work to keep up with him."

     "Oh."  She flashes a confused look on her face, and writes something on her paper.  "Does he walk up stairs?"

     "Yes.  Yesterday he was walking up the stairs one foot per stair unassisted.  He walks down the stairs with the help of the railing, putting two feet on each step, before proceeding to the next."

     "Really?"  the therapist comments, before scribbling on her paper again. "How about jumping?"

     "Take him out to the parking lot and he'll jump all over the parking blocks without effort.  He gets more air than his 4 year old sister does when she jumps."

     "It says here that he can throw a ball 3 feet."

     "Actually, he throws it across the room.  I'm trying to keep him from breaking windows right now."

What this therapist had forgotten is that although Jacob has Down syndrome, he is also a boy...a child.  And like every other child in this world, he has a personality and his capabilities differ in some degree from every other child whether that child has Down syndrome or not.

In this case, he just didn't like his previous Physical Therapist.  Not that she was a bad person; their personalities just clashed, so he refused to test for her for nearly a year.

I had to explain to the new Physical Therapist that Jacob is strong as an ox.  He can do pull-ups on our kitchen table, opens doors, runs, jumps, and does all the things a normal little boy does. In fact I'd hazzard a guess that he can do more.

I had a discussion with the Occupational Therapist about the fact that Jacob tested within the limits of 'normal' in his progression.  The previous OT suggested NO OT for him. At ALL.  This is absolutely unheard of for a child with Downs because they typically have low muscle tone and have a hard time with fine motor skills.  I ultimately agreed with their suggestion that he continue OT because I'd noticed that he cannot work his fingers independently for sign language, and it would ensure he doesn't fall behind in the future.  Besides, can you really have too much therapy?

Even speech therapy came with a few surprises for the ladies.  Up until 2 months ago (that would have made Jake 34 months old - nearly 3), Jacob could not/would not say a single word.  Part of it was due to hearing difficulties - he's had 3 sets of tubes, finally the T-Tubes they put in 2 months ago have stayed and we're seeing progress - and part of it was out of sheer stubbornness.  Now, in the past 2 months, we've seen a massive break-through in speech.  He now knows more than 30 signs, and has voiced 12 words.  This week alone he's said three new words.  That revelation elicited gasps and ooh!'s from the staff. This is in addition to the fact that he points to anything he can't sign or say, shakes his head yes and no, and is perfectly capable of making his wants and needs known in one way or another.  The progression is coming fast and furious!

'So what is the moral of this story?' you ask.

It's simple.  These ladies came into our meeting expecting, based off of predispositions and the statements of others, to see a child who was completely different from the one I presented them.

I, on the other hand, have never had a child with disabilities before.  And I refuse to assume that because of an extra chromosome, he is destined to be an un-thinking, barely-functioning part of society whose role will never be any more important than bagging groceries at the local grocery store, or being the 'happy boy'.  For that reason, I do not give him limits.  In fact, I try to defy them any chance I get.

When they told me that the earliest a child with Downs had ever learned to walk in their program was 16 months, I worked with Jacob until he could walk at 14 months.  When he failed to progress with his PT evaluations at age 2, I went out and bought all the toys needed to help him reach his missed goals.  It was that day, after 2 hours of play time and watching him achieve each of his 'missed' goals that I realized he was just fine.  He was merely stubborn.  Just like all the rest of my children.

That's not to say that I expect Jacob to be the next Einstein, or a neurosurgeon, or an 8th grade English teacher.  But when there are people with Down syndrome in the world who are world-renowned musicians, mayors of cities, music teachers, and a bevy of other roles in society, I have hope.  I remember that my child, though different, is still important, and has a purpose here on this earth.  The range of abilities for people with Downs syndrome is just as broad as the range of abilities of those without an extra 21st chromosome.  Our job as parents, caretakers, and service providers, is to take those abilities or preconceived notions and to give our children a chance to defy them.

If we give our children an opportunity to defy their 'limits' we enable them the chance to experience a better life for themselves.  Society once thought those with developmental disabilities should be institutionalized.  I still believe we are limiting our DD population by not expecting more of them.  It is my hope that we will treat each person as an individual, challenge them to stretch and progress to the best of their abilities, and only then, be satisfied with the end result.

2 Year Anniversary! How Time Flies

I nearly fell out of my chair a couple weeks ago when my 17-year-old posted on Facebook that it was Jacob's 2-year anniversary for his heart surgery.

Had it already been 2 years?  Really?  I feels like it was just a few months ago. But then I began watching my little boy and all he can do, and realize that yes, indeed, our little boy is growing up!

Jacob is now 2 years, 4 months and 3 days old, but whose counting?

Aside from his heart surgery 2 years ago, he has only had two surgeries - twice putting tubes in his ears, one of those included removing his adenoids.  We've been pretty doggoned lucky with our little boy considering all the things that CAN go wrong, but haven't. 

After 2 solid months of crying, he finally took to his on-site therapies and is now pushing me out the door so he can play with his 'girlfriend'.  I'm told they spend much of their time giving each other hugs and playing with one another whenever the opportunity arises.

After months of agonizing about whether or not Jacob was going to communicate with us in ANY way, he has finally found the need to communicate via sign language about a month ago.  He now knows 12 signs and is FINALLY beginning to babble a little bit. 

Our physical therapist claims that he is lagging physically in things like throwing a ball, playing catch and walking backward.  Jake just looks at me and smiles because we both know he's an expert at basketball, soccer, and throwing tennis balls at his big brother's eye.  Likewise, if he finds my cellphone laying around, he's able to grab the phone, run backwards at break-neck speed to make sure I'm not following, then turn mid-stride to sprint forward to safety with phone in hand, giggling all the way in his mischievous little voice.  Yeah.  We're not too concerned about this one.

Don't let those big brown eyes fool you!  He's a crafty little one!!!  Stay tuned for new Jacob stories.  The little rugrat is on the loose - and giggling every step of the way!!

Love,

The Allreds

Jacob @ 23 Months

So Much has happened in the last several months.  It's hard to believe that it's already been 6 months since his 1 year anniversary for his heart surgery.  But what an exciting 6 months it has been.

Although life has not been without its ups and downs over the last several months, I'm finally beginning to get a grasp of what my new "normal" life is going to be.  It's a life filled with therapy visits, doctors appointments, sickness - big and small, giggles, celebrations of the little things in life, and absolute bliss as I enjoy watching my little boy learn and grow.  I am often amazed at how little his Down syndrome affects his personality, and how he truly is just a little boy - albeit a LITTLE little boy. 

In recent months, we've had two visits to the hospital emergency room.  The first, in June, was because he woke up rasping and wheezing for breath.  I called the Dr. and, in light of his medical history, they sent us directly to the Sacred Heart Medical Center's emergency room.  NOT the Valley Hospital emergency room, which was 1 mile away.  Nope.  We got Sacred Heart - a specialty hospital that was a 30 minute drive away.  Luckily, we got there and they quickly discovered that it was some phloem in his throat.  Nothing to worry about.  Go home.   Woohoo!!!!

Then, the week before Labor Day, Nathan was sick with stomach aches and lots of time in the bathroom.  Inevitably, Jacob got it.  However, it didn't just stop with stomach aches and diarrhea.  Soon the stool turned reddish brown (which resulted in a doctor's visit verifying there was, indeed, blood in his stool).  Then, by the next day, it was all mucous and blood - no stool.  THAT was another emergency room visit, which resulted in an ambulance visit, to Deaconess Hospital just down the street from Sacred Heart.  Originally they seemed to think that he had Inception, which is where the large and small intestines telescope into one another.  It's something that can be life threatening.  However, after 3 days in the hospital, a few visits from the specialists, and lots of cultures, it was determined that Jacob just (relatively speaking, of course!) had Salmonella. 

So, we were sent home with the instructions to keep him at home and away from people until he no longer had diarrhea.  Sadly, Courtney got it shortly after, and that set off an entire month of quarantine of the little ones from the rest of the world. 

Now, all is right medically, and Jacob is finally back into his therapy sessions and Courtney is back to loving her "Courtney Days" every time he goes to therapy.

We recently had his 6-month assessment with all of the therapists and it's not looking good.  Of course all the time he has spent sick and out of therapies has not helped much.  Rather than being 3 months behind developmentally, he tested as being 9-12 months behind.  So each of the therapists gave me a list of new goals for Jacob for the next 6 months, I immediately went out and bought a bunch of items to help him work on his goals at home, and by the end of the night, he'd already achieved four of his goals. 

I began to think that I was BRILLIANT!!!!  Look at all the progress I'd done with him in just one night.  Then I realized.  Um, nope.  The boy was just to stubborn to perform on command for the ladies.  He could do it all along.  He just didn't WANT to when they asked him to.  Doh!!!

Beyond life as a boy with disabilities, I've had such a pleasure enjoying Jacob as just A BOY.  He may be almost 2, but he still looks like he's only 1 because he's so small!  So I'm often underestimating him.  Not a day goes by when I'm amazed at how quickly he can run (and I mean RUN) from disaster area to disaster area, tearing things off the shelves, emptying the entire Tupperware drawer all over the kitchen and living room, climbing the couches to get to things that I thought were out of reach, grabbing the toilet paper and TP'ing the house 3 times over, finding where I'd 'hidden' my phone and dialing grandpa at 7 a.m. while he's still asleep, and so on and so forth. 

Occasionally I get tired of running after him and cleaning up his messes and just sit and watch the chaos unfold, or play games, or just cuddle with him and Courtney.  I'm sure KC comes home and wonders what the heck I've been doing all day to have the house end up in such a mess.  But having had so many close calls with Jacob has made me realize the importance of the little things.

Having lived the first three months of his life without a smile on his face, has made me revel in his giggles when he's tickled by his daddy.  Working so hard to get him walking at 14 months, helps me to marvel at his speed as he's running full speed away from me in an attempt to keep me from grabbing my phone back from him.  All those months of feeding tubes remind me that his constant choice to fling ALL his food onto the ground and then eat it off the ground instead of his plate is small compared to the achievement that comes with being able to EAT at all! 

I love to watch the devious gleam in his eye when he tries to play 'keep away' from me with his favorite ball.  I can't help but crack a tiny smile when he flings himself onto the floor in a temper tantrum, trying to express himself when he still cannot talk and has so few signs to use (but that's only because he's too stubborn to sign!).  He's such an expressive little boy who can communicate everything he wants to say with his facial expressions, pointing, and other nuances of communication.

Even at such a young age, I KNOW life with Jacob will never be dull.  It will never be mundane.  And it will never be a waste of time. 

Life with Jacob is pure, unadulterated joy!

Our 1 - Year Anniversary!!!

NOTE:  FINALLY found myself back on my blog and saw that I'd never finished and/or posted my latest entry.  It's from MARCH!  Ouch....I must do better.  There will be another one with much more upbeat news shortly.

On Friday, I called our heart doctor and scheduled an appointment for his 1-year echo cardiogram. That one single phone call set off an entire weekend filled with retrospect and reminiscing over what our lives have become in the last year.

With Jacob now 16 months-old, and 13 months after his heart surgery, time has flown and our little Jacob has grown by leaps and bounds!

It's hard to believe that just one year ago we were, in essence, watching our baby slowly die before our eyes, and what a tremendous feat it was just to get him to reach 10 lbs in weight.  The physical therapist wouldn't even touch him because he looked so sickly, and I just looked at him in awe at his calm, patient demeanor as he endured his own personal trials at such a young and tender age.

(Jacob immediately after heart surgery)

As we look at photos, it is easy to discern which photos were pre-surgery and post-surgery by the sadness and lethargy in his face.

(weigh in just before surgery)

But as soon as he had his heart repaired a light literally switched on.  He was taken off ALL of his medications before he left home.  He was taken off his feeding tube within a couple of days of his surgery.  No longer did he just lay limp and lifeless watching the world go on around him.  He began to engage, smile, move, and LIVE. 

At his 1-year review with the cardiologist, we were told that not only does his heart sound nearly perfect, but they won't even do much more than listen to it with a stethoscope next year.  Our little boy has gone from missing the center of his heart, to a complete recovery physically.

Now he runs around after his sister, giggling as she runs screaming from him terrified of his assault on her personal space.  He walks, runs, climbs, crawls, squats in a catcher's stance, and spends every waking minute making up for lost time, exploring the world around him and all that it holds for our sweet little boy.

For us, the future is bright, and our hopes for Jacob are high.  Rather than standing at idle, we are moving full speed ahead trying to keep up with our dynamic, happy, lively little boy.  Wish us luck!