Will He Ever Sleep Through the Night?

Today I am utterly exhausted.

I know, part of that is my fault. I stay up until midnight at the very least, often until one thirty in the morning, writing.  My personal time doesn't begin until after nine in the evening, and I use it to recharge in a variety of ways.

But I also stay up late because I know Jake will be up at least twice before midnight, and I don't like the idea of him roaming the house without anyone supervising him. 

We have a system right now.  I'll stay at my computer writing and he will get up at ten and midnight to get a drink, then I will put him back in his bed.  It doesn't matter if there's water in a cup (or twelve cups) right next to his bed within arm's reach.  He still gets up and searches for me.  I've tried ignoring him and letting him sleep on the couch, instructing him from my chair, tucking him in and singing a song, and getting angry.  None of it will keep him from getting out of bed. Sigh.

Recently, he's also taking a pit-stop in the bathroom, which is exciting for us who have been potty training him for like FOUR YEARS now.  He's becoming aware that he needs to pee in the middle of the night.  Baby steps.

Once I go to bed, I cross my fingers and hope he doesn't get up.  Locking him in his room is frowned upon. And I have a lock on our front door that is similar to the hotel locks at the top.  It's kept him inside thus far.

Usually, he'll come crawl into bed with me sometime between two and four in the morning, and I spend the rest of the night with his face pressed next to mine, and him breathing on my face.  Drives me crazy.  And I sleep horribly.  Most days I'm a walking zombie and I try to squeeze in an hour's sleep toward mid-day. 

But he's seven and a half now.  I'm getting tired of him sleeping in my bed (and so is my husband!). We've tried weighted blankets, different pajamas - and no pajamas.  Making his room cold, music, white noise, fans, and other things. 

Now, we've completed our third sleep study and are meeting with the neurologist to get him fitted for a c-pap machine for sleep apnea.  I have NO idea how I'm going to get him to sleep with the thing on, but I'm desperate!  I'm crossing my fingers and hoping it keeps him asleep.  Because I don't know how much longer I canzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Growth Spurt!

Oh my goodness!  My child is growing. 

Whomever said my child was going to be small because he has Down syndrome had no idea what they were talking about!

Jacob is 18 months younger than his sister, and already weighs more than her.  Okay, in her defense, she's still a foot taller than him, but Jake is a TANK.

You wouldn't know it if you saw him.  But the child is dense.  Somewhere underneath that belly of his, there's a six-pack. Maybe a 12-pack!

Since he finished school in June of last year, he has grown FOUR SIZES.  That's not a typo. Four sizes.  He finished school a 4T last year.  He is now outgrowing his 7's.  Well, sort of.  His waist is too big for the 7's, but the pant legs are about 3 inches too long.

When I put him in 6X's, the pants would be obscene if he weren't still in diapers, but the legs are just the right length.  But that's alright. They match perfectly with all his muscle shirts!

So this week, I'm buying him a whole new wardrobe (again), and breaking out the sewing machine to hem up all his pants.

I guess in the grand scheme of things, a growth spurt (or three) is a good thing, right?

Kicking, Biting and Spitting: What I'm Doing To Combat the Combatant

I've had difficulty the last several months with a new development.  Kicking, biting and spitting.  This has been so much of a struggle, that I've called in behavioral specialists, and DD Services has moved his respite care from 0 hours last year, to 58  hours/month this year (Jake was throwing the mother of all tantrums at the time of his assessment. I'm not sure if that's good, or bad).

This problem has escalated since he started kindergarten, which is a class consisting of seven other kids with developmental disabilities and three para-educators (assistants).  As best as I can tell, Jake is the youngest, and the others range into the 2nd or 3rd grades.

The teacher is new, and highly motivated (thank goodness!), but she is also inexperienced (bless her heart).  I like her. Her heart is in the right place. But there is much trial and error going on in the class.

I've shown up to get Jake for his therapies, and the poor woman is flushed and frazzled.  Once, I came in and the room was annihilated - someone had literally cleared the shelves all over the floors.

Sadly, Jake is beginning to pick up on some of these behaviors and bringing them home.

We contacted a behavioral therapist and had a (sort of) consultation.  However, he wanted the entire allotment of Jacob's DD money $1200 to be used for behavioral services.  Um, I'm sorry. There are BOOKS on behavioral therapy (of which I will be buying - I'll blog about that later, I'm sure). Plus, he approach to dealing with Jacob is to wait his tantrums out, or offer him something that he wants more.

Okay, let me make something clear. I have FOUR children. I am not willing to let Jacob rule my world and dictate when and where I will do things.  I have absolutely no problem taking the time to teach him to behave properly, or what acceptable behavior is, but ALLOWING him to continue with his tantrums, and making the rest of us revolve around him is not acceptable to me. And it does him no favors in the future. It only teaches him that tantrums are acceptable ways of expressing frustration.

So, we've been working with the OT, PT, Speech, and the teacher at school to figure out the best way to work with him.  I suspect that some of this is due to his frustration that he can't communicate his wants and needs properly, and it will go away once he can speak a little better.  Other things are learned from the older kids at school.  And still others are from his innate stubbornness.

For now, I'm doing the following, though I'm sure this will be tweaked as I figure out what works and what doesn't:

1)  Try to spend more quality time with him than I have in the past.  Primarily, this is so he understands that good behavior means he gets lots of attention.  Bad behavior means time outs in his room or on the couch, without the attention he craves.

2) When I'm with him, we try to unplug. From everything.  No cell phones, no TV, no music.  I limit the amount of sensory input he can get.

3) Lots of physical play. Jake seems to respond well to physical activity.  The teachers say he behaves better in school after PT and OT sessions. He starts swim lessons tonight, and we're actively working on getting him to the park and going outside to play.

4) Quiet time. He's beginning to sit still long enough for us to read books. So, I'm encouraging that too.

5) I'm working out. This kid is STRONG!  His behavior isn't going away anytime soon, so I'm taking action to be able to handle him better.  The moment he gets stronger than me, I've lost that battle.

6) Taking breaks (Respite). I'm totally utilizing the respite care.  Luckily, my oldest is 21 and wants to be an Occupational Therapy Assistant, so she'll be the respite care. But we've agreed to let him go over to her house twice a month on the weekends so that our family can have a break. We love Jake to death, but taking care of a child with Ds is hard. And it's important for the other kids to remember what life as a normal kid is like, and to enable us to give them their much-needed attention too.  

Wrist Wraps: The Unexpected Solution to Sensory Issues

So I went through a phase several months back when I was doing a lot of product testing.  Companies would send me their products, I test them out, then I'd blog, Tweet, or Instagram about whatever I was using.

For the most part, most everything was good.  Occasionally, I'd find something so wonderful I'd buy more when I ran out.
One  of those unexpected items were wrist wraps (If you go onto Amazon you can find the for under $10).  If you don't lift weights, you probably don't know what they are. But the concept is simple.  It's a thick elastic band, much like an ace bandage, that wraps around your wrists and Velcros at the end.  It's designed to strengthen your wrists when you're lifting heavy weights.  Since my kids are big into lifting because of sports, I decided to get a pair of wrist wraps.

Lo and behold, little Jacob got a hold of my wraps and LOVES them!  I think it's a sensory thing for him.  He'll put them on and take them off several times a day.  At first he needed my help, but now he can pretty much do it all by himself.  He wraps the elastic around his forearms as tight as he wants it, then runs around the house doing his thing until he decides he's done and takes them off.

I figured after a day or two he'd be tired of the novelty. But it's been nearly 6 months now, and he still pulls them out and wraps his arms.

I'm finding he also likes having the weight of my arm over him while he sleeps, and I've heard them talk about getting him a weighted lap blanked for school to see if that will help settle him down.

I guess the moral of this story is: As a parent of a special needs child, I must always think outside the box.  You never know what your child will find beneficial.

FINALLY....an Explosion in Speech!

For anyone who has followed me, or my journey with Jacob, you know that speech has been one of our biggest struggles.

Getting ready to go to speech therapy! 

Not only is he getting 30 minutes of speech at school each day, but he has another 30 minutes per week at a private agency.

Jacob's progress has been excruciatingly slow.  But there's been progress, nonetheless.  When he started at Youthful Horizons, he was essentially mute.  He didn't even grunt much.  We had him using Geminii system, but he got bored quickly.  And I think that's because the Geminii system is geared more towards people with Autism.  There was very little emotion in the programs, and it relied heavily on repetition.  All good things, don't get me wrong.  But he was bored. So we topped out on his progress pretty quickly, then backslid for a while. And, at $99/month for the program, we couldn't afford to keep using something that wasn't working.

About that time, we found Debbie at Youthful Horizons She and Jake have been an awesome fit.  She's mellow, nice, and she has all the best toys--at least Jacob seems to think so!

I've learned to appreciate the process of learning to talk.  First there is learning to push out air forcefully enough to make noise. Then you must learn to control your muscles enough to manipulate your lips enough to create specific sounds. And don't forget about placement of the tongue, jaw, and awareness of the cheeks, face, and other muscles.  All of these things had to be addressed in proper progression, while concurrently teaching him other means of communication via the PECS system and more sign language to enable communication RIGHT NOW.

Jacob is nearly 6 1/2 now.  Sign language is still his primary language, but now he's added a few words to his vocabulary.  He can say things like purple, bye, dad, mom (pronounced ba), Elisha (pronounced uheesa), he calls Courtney (seesa), bus, please (pronounced psss), blue (boo), there it is, that, dog, Craig (his PT), and occasionally, when he's in a good mood, I'll here his say Debbie.  13 words and 1 phrase. 

I'll TOTALLY take it!

And on those days when I'm frustrated that he still prefers to yell rather than use his words, I remind myself that we couldn't understand his older brother (who is normally functioning and actually quite smart) until he was 12! 

Patience, grasshopper.  Patience.

Kindergarten? Already?? Where Has Time Gone?

How can it possibly be a year since my last post?  I know life has been crazy busy around here, but seriously?  I sit here scratching my head wondering where time has flitted off to and I'm ashamed.  So many wonderful stories I could of shared, but I haven't.  So, let me glaze over some of the highlights of the past 12 months. 

Speech:  Jacob is making progress.  Not as quickly as I'd like, of course, but there is progress.  He's beginning to say words like bunny, ball, bubbles, peaches, there is it, this, dad, juice, etc.  He is attempting to say prayers at night, and speech has progressed from learning sounds, to emphasizing words.  Do Jake and I have conversations? No.  But I can see marked improvements since last year, and I'm happy with them.

Physical Therapy:  Jacob has spent months in the pool with Craig, our physical therapist.  Not necessarily because Jake needs to learn how to swim (although he does), but because he is so incredibly strong, that the water is the only place that Jake doesn't feel comfortable. Craig needed Jake to learn to trust him and follow instructions before he could teach him anything. After several months in the pool, Jake has finally graduated to "dry land" and is now learning how to follow instructions rather than flopping on the ground and trying to overpower us.   Jake has calmed considerably in the last several months.  And, although he isn't perfect, I don't have to worry about him running into traffic any more either.  This summer was the first summer I didn't have to follow around behind him in the backyard for fear he'd try to climb the fence and run for the streets.  Thank goodness!  He is finally beginning to calm down and be a boy who follows instructions...about 30% of the time now. 

Our family has been on many adventures to places like the park, Yellowstone, go-carting, and other stuff.  

 We were sure Yellowstone would involve lots of running after Jake, or making him wear some sort of harness or leash, but he was perfectly happy holding someone's hands, or on our shoulders discovering with the rest of us.  It was in-cred-i-ble!!!

Is he perfect? Nope.  There are still days when he flops.  Okay, he flops just about every day.  But it's not all day, every day.  Now it's once or twice a day.

His personality is beginning to blossom too.  He loves to laugh, and play, and discover.  His  brain is always absorbing and learning; processing.  One of the most enlightening things I experienced as a mom was when I let him run free with the hose.  I never knew something so simple as a hose with running water would be so remarkable to Jake, but he played with it for hours.  Not just filling the kiddie tub, but spraying the dirt, and seeing the cause & effect of the water stream, and how changing the flow of water changed what happened to the dirt, or  how hard the water was when it left the hose.  He discovered how to make mud, made puddles in the grass and jumped, and how pouring water into the air conditioning fan made all the water fling back up into the air like rain droplets.

Bubbles were a big thing this year too.  He's mastered the wand, how to adjust this blows to make big bubbles and small bubbles. Catching them on the wand, etc. Bubbles are one of his favorite things to do. Oh, how I love to watch him learn and grow. And to be a little boy.

He LOVES his big brother, and spends as much time as he can with him.  They play a hunting video game and Jake helps him find the Moose, or Nate adds a hunting dog to the game that runs around on screen while they're walking and Jake loves to watch the dog and point at him.

I love watching Nathan signing to Jake during church, or wrestling with him on the living room floor, or even when he falls asleep next to him at bedtime.

These boys make my heart swell!  I am one lucky mama.

Jacob has changed so much over the last year.  Much too much to describe in one blog.  But I can tell you this much:  Kindergarten will be the year of CHANGE.

Camping, Leashes, and Socialization.

Last week our family went on our much-anticipated family reunion trip to Montana.  This was more than 9-months in the works and was intended to celebrate the 60th wedding anniversary of my husband's parents.

Extended family drove as much as 20+ hours to be a part of the week-long event which took place in a massive KOA completed with log cabins, RV spaces, and tent sites.

KC and I had discussed, and fretted over how Jacob would react to being in the woods with so much family, away from his structured activities at home, and anything familiar.  I'd recently discovered that Jake was a runner, who doesn't look back and won't stop until something stops him, or he runs into a literal wall.  The thought of him roaming freely in nature without walls to stop him terrified me.

Despite my apprehension, we made it to Montana and pitched our tents.  On day 1, Jacob ran from me twice.  And I'm talking down the gravel road, up the hill, and nearly to the bathrooms before I caught up to him and drug him home.  It's a good thing there were no cars driving around.  Then, it was a matter of, "Jacob, don't touch."  "Jacob, give me the knife."  "Jacob, don't throw rocks at the cars."  "Jacob, don't turn the spigot on full-blast and splash everyone around you."  "Jacob, sticks aren't for poking people."....  You get the picture.

The fist few days were exhausting.  Then I got sick.  I was cramping something fierce, and they seemed to be getting worse with each passing day.  I was taking every chance I could get to lay down, hoping the pain would pass and leaving the stresses of Jacob to the rest of the family.

After one particular break, I re-emerged to be informed that Jake had gotten through the electric fence designed to keep the wildlife out of the KOA and one of our family members had to go under it to retrieve him.  Wow.  Just, Wow.

So, out came the leash.  I had already spent the last 4 1/2 years promising myself I wouldn't become that parent.  You know, the one who has their kid on a leash in public places like an animal or a pet.  I, surely, could find a way to keep Jacob safely within arms reach, right? Nope.  There comes a time when a person must accept the fact that she is wrong, and realize that sometimes it is better to keep your child from being electrocuted than worrying about whether or not they look like a dog on a leash.

Surprisingly, I discovered that Jake liked the harness too.  He'd bring it to me in the morning and have me put it on him.  Sometimes, I'd follow him around, and others I'd let it dangle like a tail trailing behind him.  That darned harness was a lifesaver.  I'm not going to lie.  I'd do it again.

The other epiphany I had while camping was realizing I haven't been socializing Jake as well as I should be.  How incredibly easy is it to just say, "Nope. Let's just stay home today." Or to have the older kids stay with Jake and Courtney while I go out and run errands.  But keeping Jake locked up in our home - whether intentional or not, isn't doing that little boy and favors.  How will he learn social boundaries, how not to touch everything around him, or even how to socialize properly with strangers if he never has opportunities to have those experiences?

We had chances throughout the week to explain to his cousins that he is different and why he is different.  It was an opportunity to educate, enlighten, and show them that though he is different, Jake is still very much the same and likes to play just like every other little kid.

In spite of being sick and having to eventually go to the emergency room, I feel as if the trip was a good one.  I learned a lot, and Jake (I hope) learned a lot and was able to enjoy the experience with his extended family and loved one.  It certainly was an adventure no matter how you look at it!

Sleep Apnea Sleep Study for Jake

At Jacob's last  check up with the pediatrician, she put in a request that he get a sleep study done because children with Down syndrome have a higher tendency to have issues with sleep apnea.

It took months for us to connect with the doctor, have our preliminary visit, then actually have the sleep study done.

I'd had no idea what to expect from the study, aside from the fact that Jake would be there all night long and they'd be monitoring his sleep patterns somehow.

We showed up at the hospital at 7 p.m. on a Tuesday night and met with the technician. She showed us to a room that looked very much like a hotel room complete with a queen sized bed, a couple night stands, and a chair in the corner.  There was a bathroom connected to the room, and a second room where I could sleep if I chose.  She pointed out the cameras that would be used to watch Jacob while he sleeps, then showed me all of the cables that would be attached to various parts of his body.

Jake was NOT impressed.  From the second she started trying to attach the cables to his body, he began fighting.  He'd kick, and scream, and yell, and push, and wiggle--anything he could do to keep them off his body.

We struggled for FOUR hours to get them on him, then to get him to lay down in bed, and to keep him from yanking the cables out of his hair and off his face.

FOUR HOURS.  I finally had to physically restrain him with both my arms and legs until he couldn't move, then wait for him to cry himself to sleep.  By the time he fell asleep at around 1:00 a.m. both he and I were a sweaty mess.

By morning, the technician verified that yes, he did have sleep apnea, and maybe I should get a sleep study done too.  Um, you'd sleep like a brick and snore too if you'd just fought Jacob for four hours.  That kid has stamina.  I'm just sayin...

I heard nothing for another six weeks, then finally hear from the pediatrician asking if we'd ever had the study.  I confirmed that we had and that we were waiting on results and were told it may take a few months to hear anything.  She was not impressed, so she made phone calls, and a referral to the ENT.

At his appointment this week, we were told that Jacob had obstructive sleep apnea and another form of apnea that affects his brain waves when he sleeps.  He will be getting his tonsils out shortly to help with the apnea since there is no way Jake will sleep with a CPAP machine.

The ENT said that once the tonsils were taken out, they normally do another sleep study.  I quickly informed him that there was NO WAY I was going to subject Jake to that study again. Not for a very long time.  He agreed when I told him the story and said that instead he'd do a follow-up with him after the surgery to make sure his airways are doing well.

Here's to hoping that will be enough, and we don't find ourselves in another all-night war of the wills!

Gemiini Update: Jacob's Speech is Progressing

This is my monthly post on Jacob's speech progression using Gemiini.

Admittedly, we haven't been using Gemiini as often as I'd like.  Jake's older sister had heart surgery three weeks ago, so our focus was on her for much of April.  However, whenever possible, I would sit down with Jake and go over the videos.  Plus, they have an app that we've downloaded that Jake can click on without requiring me to log into their system to watch the videos.  I've caught him several time with his Ipad watching those videos and making the sounds and signs to the words.

I've seen a lot of progression in Jake these last several weeks.  He's progressed from using signs and a series of grunts to babbling with consonants, and even trying to use words.  This last week he pointed to an object and said "there!" (which sounded more like 'dehyr', but whose complaining?), and last night he was doing the da-da-da thing.  What a leap from absolute silence. 4 1/2 YEARS we've been trying to get Jacob so say SOMETHING, and now it's happening.  Is it bad to say there are days I want to shed tears of joy at this development?

This morning we were on again.  He only managed to watch for 10 minutes, but he did all the signs, all of the sounds associated with the animals, and was attempting to say the words.  He'd either manage to say the beginning or the end, but not the entire word.  They're baby steps, but for me they are HUGE.  I have hope.  And there's nothing better in the world than having hope for your child and his ability to communicate.

We have an OFFICIAL logo!

Look at it.  Isn't it pretty?  My heart flutters and a tear forms in the corner of my eye when I gaze upon the fantastical wonderfulness that is...our official logo.  It's been four years in the making.  We've talked about DRL, and we've promised that it will actually come to fruition.  But today we scream from the rooftops: "We are alive!!"  Ok, maybe this is all a bit extreme to some.  But for me, it's a pretty big deal.  

I've talked about Down Right Living becoming a non-profit organization for so long, but have made no steps to do so.  Yeah, part of it is because Jake has had a few issues. Then Elisha and her  heart issues.  But in spite of it all, I've decided to push DRL to the top of my priority list and earnestly begin fundraising to make it happen.  I even have a business/marketing plan (gasp!)  I know, right?

Be afraid...be very afraid. 

Until then, if you'd like to help us reach our goal, we have a couple options for you.  

1) Donate outright through GoFund Me.  Donate to Down Right Living. Help us become a non-profit!

2)  Buy our T-shirts...or tank tops...or sweatshirts...(you get the picture) from us.  You can check out the options here: http://www.cafepress.com/sassysips2?nocache=yes

Every little bit would be appreciated.  None of it goes into our pockets. It goes directly into making DRL a non-profit and paying forward to those other families touched by Down Syndrome. 

Adoring Daddy

The last several months have brought about subtle, yet significant changes in Jacob.  I don't know if it's because he's actually changing, or if, because of all the things going on with Elisha, I've begun to notice and appreciate the little things in life.

The biggest thing, for me, has been how Jacob has changed from being completely self-involved, to slowly incorporate others into his list of concerns.  In the past, Jake would run from activity to activity, with me in his wake trying to keep up.

 But now, he tends to want me to be a part of his adventure, searching me out so that he can grab my hand, and pull me with him to discover the flowers growing outside, or to watch his favorite show, or to practice Gemiini together.

The other week, however, it truly hit home as our family went to play tennis for the first time this season.  K.C. piled me, Nathan, Courtney, and Jacob in the car and took us to the high school's tennis courts, which (thankfully) have a very high chain link fence with gates that latch closed.  This allowed me to not worry quite so much about Jacob and gave him the impression of freedom to run as he chose.

I very much expected him to run through all of the tennis courts, chasing after balls, gleefully playing and exploring by himself.  However, this night, he stayed pretty close to his daddy's side.

K.C. offered him a tennis racket, which Jacob wheeled with pride, teetering from side to side as he tried to compensate for the extra weight, and grinning from ear to ear.  He'd stand right next to his dad, trying to mimic his stance, looking up occasionally to make sure he had his legs and hands right, then swinging at any oncoming balls within 5 feet of him.

Nathan would toss a ball over the net, and Jacob would grin, run after it, swing-- usually missing, and run after the ball.  Once the ball was retrieved, he'd run back to his dad, hand it to him, and 'assume the position', taking great care to mimic KC's stance.

It was absolutely adorable!  What a heart-warming experience to see Jacob and KC playing together, and having fun.  In a life full of chaos and running to and fro, it's a tender moment, that makes me smile, even now, in retrospect.

Those are the moments worth living for.

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. :)