Dear Parents of Children with Down Syndrome...

I've always known I'd write a book about Jacob. 

I knew it the moment he was diagnosed with his disability.

I knew it before I knew I'd become a writer.

His story needed to be told.

This year is the year I will put this knowledge to action.  And, in true Allred fashion, I'm going overboard. 

I'm writing not one book (as blogged about before), but two. And I'm outlining a third book. This is in addition to the four nonfiction books about growing up in a family of ten that I'm re-releasing on Amazon, the six-book YA thriller series I'm self-publishing, 2 anthologies I'm participating in, and a YA urban fantasy I hope to pitch to a traditional publisher in June.

Am I insane?

Probably. Yes.

I've been putting off my "Jacob" books for years, telling myself I'd find time later.  But in light of all the abortions based off a Trisomy 21 diagnosis, and some countries even trying to eradicate Down syndrome completely, I can't put it off any longer. These books must be written NOW.

With that being said, I'm putting a call out to any and all parents of children who have Down syndrome.  I'd also like a select few people who don't have kiddos with Down syndrome but are closely affiliated with them - Special Education teachers, brothers and sisters, aunts and uncles, doctors and nurses, therapists, etc.  I'm looking for letters.

Why?

Because when Jacob was diagnosed, I was inundated with condolences. "I'm so sorry." "I don't know what to say." "What are you going to do?" Sometimes silence and shock.

Where were the congratulations and squeals of excitement I got with my other three children?

I aim to fix that with this book. This will not be a book filled with, "I was horrified and then I learned to love my baby."

This book will be, "Congratulations on having a new baby!  Your life is about to embark on a new adventure. And it will be amazing!"

 Am I going to candy-coat everything? Nope. But my emphasis will be on looking at the good rather than obsessing over the possibility of bad.  Embracing the similarities rather than freaking out about the differences.

If you're interested in being a part of this letter, I want to hear from you!!!

Starting Second Grade Already?

He's off! Jake just boarded his bus, bound for second grade, and I'm not gonna lie.  I'm doing the happy dance!  Today is the first day in MONTHS that I've had all to myself. I'm resisting the urge to go back to bed.  I have way too much to do to catch up after an entire summer with kids in tow.

This summer has been amazing though.  After an ENTIRE SCHOOL YEAR in which the teacher did nothing.  I kid you not. Nothing.  I'd walk into class and find kids standing on the table, others running around, shelves cleared, and no work being done; Despite countless meetings and discussions with principals and Directors of Special Education, therapists, and everyone I could talk to, Jacob digressed instead of progressed last school year.  There was no inclusion last year.  How could we when he had begun hitting and spitting again? When he was found in the middle of a five-lane road, within feet of an active railroad line, and at a school that borders a highway? I spent most of last year clawing my out of a pit created by a teacher who didn't care about the progress of the kids.

I may have cried when I found out he was getting a new teacher--one he'd had in preschool and is gung-ho about making sure the kiddos have the best education possible.

The second Jacob started Summer break, I went about the business of fixing everything that broke during school.  We went to a developmental neurologist who recommended a book, "1-2-3 Magic" By Dr. Thomas W. Phelan - Because it's 18 months later and we STILL didn't have an ABA provider for Jake. Two days into implementing the book, and we began to see results.  MAJOR results.

He went from flopping and throwing tantrums for thirty minutes at a time, kicking, screaming, spitting, and attempting to bite, to 10 seconds of showing displeasure, then complete compliance.  No drugs (he was diagnoses with ADHD and they wanted to put him on Ritalin). No spankings.  No arguing. No frustration.  He is now manageable. Hallelujah!

He's beginning to talk too.  When he gets made, he'll sign entire sentences to me, which I try not to laugh at. But it's so darn cute to see him scowling as his little hands are gesticulating wildly telling me why he's upset. I love it!  When he speak,s he signs and tries to speak the words at the same time.  Every day he gets a little bit closer to being understandable. And he's gone from saying one syllable of one word, to trying to say two or three words at a time.  It's glorious!

His independence is increasing too.  Last year he wanted me to dress him and make his food. Now he dresses himself, and is beginning to work the microwave to help me fix him simple meals too.  I expect he'll be making his own sandwiches and other foods by the end of the school year.

Plus, there haven't been any elopements in months.  My stress levels are dropping and I'm having opportunities to enjoy my son, rather than just manage him.

Life is good.  Change is good--as long as it's in the right direction.  My little boy is growing up.  Not only physically, but emotionally and cognitively.  I think I'm gonna just sit here on my first day of school and bask in that knowledge for a little while.  Yeah.  Life IS good.

My Son Has Low Muscle Tone, But He's Strong as an Ox!

When Jacob was born, I read a bunch of the literature on what to expect.  Most of it depressed me, quite frankly.  I didn't want to know that Jacob had a increased risk of this or that.  I wanted to know what to expect in terms of development, and what virtually every child of Down syndrome had in common.

I quickly discovered that, like typically developing children, those with Down syndrome develop and grow at different rates, have different difficulties, and varying types of cognitive abilities.  However, one attribute, which appears to be across

the board for children who have Down syndrome is their low muscle tone.

Originally, I thought that meant Jacob would be weaker than typically developing children.  BOY was I wrong.  In fact, it was the exact opposite.  How is it that a a child, with an un-correct AVSD heart condition needed THREE nurses to hold him down for IV's?  Then there's the walking.  That happened at 13 months.  Where's the delay in that? And aside from a slight delay to catch up from being immobile the first 3 months of his life, Jake quickly built up steam and now exceeds nearly all physical expectations for kids his age.

And now that Jacob is 6 1/2, I'm forced to begin weight training because he is just about stronger than me.  Scary, huh?

So, low muscle tone does NOT mean weak muscles.  Then what does it mean? For a more detailed explanation, you can go to Wikipedia. They're the most straight forward and comprehensive. Essentially it means hyper-flexibility, and (sometimes) weak muscles, or muscle resistance.  For Jacob, it's TOTALLY hyper-flexibility.

Jacob's preferred position to sleep is folded in half, laying on his legs, occasionally sucking (or biting on his toe nails). Sadly, I don't think I've ever cut his toenails (please don't gag. I've done enough of that for all of us).

On the bus, Jacob wears a harness that has 2 straps for his feet, a vest that goes over his shoulders, and zips in back.  He's managed to slide out of that thing too.

He's slid out of his 5-point harness on his car seat (don't get me started on that one!), out of my arms if he's throwing a tantrum, or wedge himself into a drawer or a tiny cupboard.  I can't tell you how many times I've run through the house frantically calling his name, to find him grinning from ear to ear because he'd successfully hid from me. Sigh.

My boy is Houdini.  He can get out of EVERYTHING. If he were in a straight jacket, he'd find a way.
Luckily, he spends a lot of time in PT and OT, learning to strengthen his joints and his core.  Heaven knows, the rest of his body doesn't need to be any stronger.

Needless to say, this little boy keeps  me, and the rest of our family, on our toes!  Good thing we learned fast that low muscle tone does not equate to weak muscles, or any excuse to treat our child any differently from the rest of the kids in our home.

If anything, Jake's low muscle tone gives him an advantage.  Sometimes it's like the kid has four arms - quite handy when he and his 17-year-old brother are wrestling in the living room.  Or his hands are full, and he needs a little extra leverage with something he's playing with.

Never a dull day with Jacob around.  Never.

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.

Jacob - A Little Brother in the Truest Form

I've been updating many of my blogs over the last several weeks, and it's given me an opportunity to walk down memory lane.  Some of those memories were filled with laughter.  Others with sadness and tears.  But the strongest vein of thought I felt throughout the months and years with Jacob thus far has been gratitude that Jacob is in our lives.

Yes,  my 4 1/2 year old is stubborn, devious, likes to dump things on the floors...or beds...or behind couches...you get the idea.  But he's also a lover, a giggler, a hugger, curious, sweet, devoted, and constantly trying to show love toward me.  He's wise beyond his years, and yet impulsive as a one-year-old.  And...Jacob is a little brother in the truest form of the term.

Jake is only 18 months younger than Courtney, but only half her size.  So, why is it, that every time she walks in the room, he either A) follows her around like a puppy dog   B) Tries (and usually succeeds)  to tackle her.  That little boy LOVES to hear his sister scream and/or squeal.  It's like his very existence depends on how loud Courtney yelps.

At times it's frustrating, and other times, I can't help but chuckle.  It's one of hundreds of little reminders for me that, although Jake has Down syndrome, he is more like the rest of us than he is different.

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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.

Happy New Year! Onward and Upward!

If you know me, you also know it's no big surprise that you didn't get a Christmas letter this year (sorry!).  So, in lieu of Christmas cards, I thought my blog would be a great way to give all our friends and loved ones a quick break down of 2011. 

This year KC has been our rock!  Normally I just call him a tree trunk, but this year he has been promoted to "rock" ;)  In February, he broke his leg, tore all his tendons, and the mesh of tendons that keep the tibia and fibia together.  It was a LONG recovery process, but he's finally back to work and has been working long long long hours to make up for lost time. He's now the Mormon Doctrine Teacher, which keeps him on his toes, but I think he's up for the challenge :)  What little spare time he has is spent hanging out with the kiddos and supporting us in all of our massive number of activities going on around here.

As mother, I seem to be the glue that holds the family together.  I'm busy running the kids to and from school, numerous therapies and doctors appointments, transporting Elisha to all of her athletic stuff, doing all the domestic stuff, helping my sister to run her business, helping my parents with their business, and a bazillion other projects that seem to pop-up when you have 6 active people at home. My goal for 2012 is to go to bed before 2 a.m. each night.  I had a moment of insanity towards the end of the year and told our bishop that I thought Jacob was healthy enough for me to take on a job at church.  Luckily they saw through my insanity and now I'm teaching Sunbeams (3-year-olds) with Jacob in tow terrorizing those poor little kids every step of the way. Church has never been so exciting.  Luckily I bring snacks :)

Elisha is in "Beast" mode.  This year she became a Sophomore, turned 16, started driving, started her 2nd year in Varsity Volleyball and broke her foot in the 3rd game.  But of course, being Elisha, she didn't let that stop her.  As her team was practicing each day for 2 hours, she was either in the weight room lifting or in a corner perfecting some of her skills preparing for the day she could play again.  She missed the season but gained massive amounts of strength and skill as well.  She's now playing club volleyball and the track coaches are salivating over her.  Last summer she qualified for Nationals in the Junior Olympics in discus, but we weren't able to go due to time (we had a week's notice) and finances (babies with holes in their heart are expensive!). This year she plans on going and competing.  And, based on the numbers put up from last year, she will be an earnest contender to win Nationals this year.  Needless to say, some of the local colleges (WSU, ISU, and EWU) have already begun to show interest.  So these next couple of years should be interesting with her.

Nathan turned 12 this year and immediately became a pre-teen.  He now passes the sacrament at church and looks very dapper in his first real suit.  He also looks like the spitting image of his FATHER!!  He took a year off of sports to nurse his foot after surgery to lengthen his Achilles tendon and re-construct the arch in his foot.  So, to fill the time he took up reading which he has devoured!!  He goes through about 3-4 books (big ones - 500 - 700 pages each!) per week, and we just can't keep him stocked with books!  He's already as tall as his mother and stands almost a full head above everyone in his grade.  He's hoping to be able to play on the Church Basketball team this winter, and test his skills at basketball and football next year.  I have a feeling the coaches will be very happy when they see HIM show up to practice!

Courtney is our little gladiator/roller-derby/princess. You will either see her twirling around in a pretty dress, buck naked, or in various stages of undress - and often all three of those several times over the course of an hour.  Like her older brother, she stands several inches taller than her 2-year-old counterparts.  She loves singing along to the radio, watching Beauty and the Beast, Megamind, or any number of movies, climbing things like chairs, tables, counters, shelving, etc.  and listening to her family gasp and scream as she teeters precariously over the edge.  She's definitely a daredevil and I have a feeling that 2012 will be no different.  She certainly keeps a day from being boring!  But with a smile like hers how can you not love  her?

As a whole, it looks like our family has successfully learned to navigate all of the crazy obstacles and potholes life could throw at us.  We're looking forward to 2012 and all of the adventures it will bring with it.

We love you all and have appreciated all of the support you have given us in thought, prayer, service, notes, and so much more!  We have truly been blessed with an amazing group of friends, family, co-workers, and support system.  We would never have been able to do it without all of you. 

We hope that last year was a good one for each of you and that this year brings you much peace and joy. 

Very sincerely,

The Allreds

So Many Things To Be Thankful For

NOTE:  This original post was written right around Thanksgiving, but I forgot to post it!  I hope you enjoy it anyway :)

I'm sitting here in another hospital room as my mother sleeps with nothing better to do than take stock of the past year.  From the outside looking in, a person could be horrified by all that we've been through.  Since that fateful day in April 2010 when we found out that our unborn child would have a heart defect and be born with Down syndrome, we've been slammed.  First Jacob, his birth, 3 weeks in the hospital for sepsis and meningitis, then time for his heart surgery, next time in the hospital for failure to thrive, and recovery.

The same week Jacob was finally given a clean bill of health, KC broke his leg in what is apparently the worst possible way you can break an ankle, including both bones, and all the tendons and cartilage in between them.  Now, 9 months later, he has FINALLY given a clean bill of health by HIS doctor.

 In June, the same week KC was allowed to begin working light duty, Nathan had surgery on HIS leg - lengthening his Achilles, and grafting bone to two places on his foot.  The SAME DAY that Nathan got a clean bill of health from his doctor, Elisha broke HER foot in a volleyball game and was out for 6-10 weeks.  Because we apparently didn't have enough to worry about,  there was Courtney's visit to the emergency room because she'd gotten into a bottle of Excedrin PM (luckily we discovered that I'd found her before she ingested any).

Within a week of Elisha's clean bill of health, we found out that Jacob has progressive hearing loss (we're not sure if it's temporary or permanent yet).  A week after that, his blood work came back hinky, and we had to re-test to rule out cancer.  And 3 days after that phone call, we found out that my mother has cancer (ultimately we found out that it is inoperable Stage 4 Pancreatic Cancer). In the last 18 months, we have had no more than 3 DAYS that have not been mired by illness or injury and I do not see and end in sight for a while.

With all that has gone on in the last 18 months, how can I POSSIBLY find anything good in it?  Well, I must admit that I have shed my share of tears, especially as of late with the knowledge of my mother's cancer.  But how can I not see the good in all of this? Dwelling on the bad would literally drive me crazy anyway - as if I need any help!!!

 First off, I have often said that kicking and screaming will do me no good.  It only wastes precious energy that must be used for more important things like caring for my family both physically and emotionally,  and making sure that they know that I love them.

I've been blessed with the opportunity to realize how important each and every one of my family is to me. And because of this, I am so much less likely to take them for granted. Especially with Jacob.  I know that I'll most likely regret it as he gets older, but I spend every chance I get just gazing into his beautiful blue/brown eyes marveling at his perpetual happiness, and resilience. I marvel at his strength of character and of body. I can't help but squeeze him tight whenever I pick him up, and often find myself breaking out into random grins as I watch him grow and progress.  At 13 months old, he is already standing on his own, and has even taken a step or two.  This is HUGE for a child with Downs.  They're supposed to be delayed. They are not supposed keeping up with the other kids their age.

With my mother's new diagnosis, I have the opportunity to tell her how much I love her, what an impact she has made on me in my life, and how she has made an impact on the lives of my children.  Cancer is a horrible thing. But it also enables our family to mend broken relationships, and become closer to one another  - something that would not have happened without such a life-altering event. And its something that my mother has always wanted in our family. I just happen to think this is an awfully extreme way of doing it, mom! :\

I have been blessed with patience.  There, I SAID IT.  I've acquired patience!!! (family joke - NEVER EVER pray for patience!  Things like the last year happen when you pray for patience!).  I've found that the little things don't bug me nearly as much as they used to.  I've learned not to sweat the things that I cannot control.  I can't control injuries or sickness.  I cannot control whether or not Jacob will be able to hear, or if he needs hearing aids in the future.  Therefore, I often find myself saying, "Whatever".  I take what I'm given and I deal with it.  I don't stress over what may or may not happen (OK, I did with Jacob's cancer scare - his blood work came back clean, by the way).  I just roll up my shirtsleeves and and get to work.

I am thankful for less grudges.  I have noticed as of late that those things that would have once hurt me or would have festered into resentment or hatred in the past, now roll off like water on a duck's back.  I don't have the time or energy to hold a grudge.  I say my piece and get on with it.  It's enabled me to hold onto relationships that, in the past, would have been discarded over petty disagreements, or being unintentionally offended. And it has enriched my life with people who touch it in so many good ways.

I look around my house and I see dirty dishes, toys on the floor, unfolded laundry, and a messy desk.  Yes, my house is messy. Every day.  Regardless of how hard, or how often I clean it.  It comes with the territory of  a family of 6.  4 children (1 of which is a human tornado), 2-3 therapy appts per week, doctor's appts, sports for the older kids, driving them to and from school, groceries, church, and working nights till 2 a.m. to name a few.  I could sit in a corner crying because my house is dirty, but why?  A little dirt never hurt anybody.  And I've got bigger battles to fight.  When I look at my dirty home, I know that my time was spent doing more important things: being a mom for my children and a wife for my husband.  We have food on the table, happy, relatively well-adjusted children, a roof over our heads, a job that KC LOVES to go to every day, friends & family who love us even more, and so much more.

Yes, I have so much to be thankful for.

I used to think that your health was the the ultimate.  It didn't matter what you went through so long as you have your health.  But it isn't until you no longer have health that you realize that this mentality is sooooo not true!  What matters most is that you have love, and laughter, an eternal perspective, and friendship.  What matters is that you keep plugging away at whatever life and God gives you, making the most out of every moment, because those moments, however many or few, are what matters - and what you do with them.

Never ever give up.  Ever. Never let life get you down.  Ever. We have been given these trials in our lives for a reason.  I'd surely like to find out what those reasons are so that I can learn from them and move on! But until then, I continue to be thankful.  For life, love, happiness, family, friends, my testimony of Jesus Christ and the life hereafter, forever families, and everything that has gone RIGHT in my life.

Thank you for letting me get up on my soap box.  I think I shall get off now....and get back to work! :)

Leaps and Bounds

People often ask me if I ever sleep.  And, quite frankly, I don't much.  Partly out of habit from the 10+ years I used to work nights running my online business. And partly because I've found that I can get so much more accomplished when the rest of the world is asleep and not distracting me from my long list of things to do. 

As the world quietly sleeps, I've been able to revel in the blessed silence of my home and reflect upon the many things that has occurred in it since my last post in July. Wow! What a busy life we've led!

In July, at 8 1/2 months, Jacob was rolling.  Soon afterward, his physical therapist told us we needed to buy him a toy that he could play with sitting up, so we chose the toy shown below: 

Little did we know what an impact this toy, and it's annoying little dancing teddy bear on top would have on Jacob's development. He fell in LOVE with his toy.  All of the sudden, we began to see progress in Jake so substantial, that the physical therapist would be taken aback.  One week he was rolling around, the next week he was frog-hopping, and doing one or two army crawls on his belly.

Soon, he was up on all-fours grabbing for that dumb dancing teddy bear.  Then, he'd crawl 1 or 2 steps to get better positioning, and before we knew it, he was sitting upright for minutes at a time...

crawling from object to object exploring every square inch of our home and everything in it.  Then he toyed with the idea of bear crawling - on his hands and feet, and was crawling the entire length of the house...FAST!!

Out came the high chairs because his back was finally strong enough for him to sit upright for several minutes at a time.  Out came the stair gates because he discovered the stairs...a couple of times.  Up went anything and everything that could possibly be thought of as small enough to fit in his mouth, etc.  Because if he could grab it, it was going in his mouth!

In spite of the fact that he still had no teeth, we began feeding him solids - and he LOVED it!!!  He'd just gnaw to his heart's contents on anything he could get his hands on. 

Jacob discovered that he needn't just let life pass him by.  He decided that he was going to grab that bull by its horns and ride it into submission!!!  He literally wakes up around 6:30 in the morning and go go go's constantly all day long, stopping just long enough for one or two 20 minute power-naps along the way.  Every other minute of the day, he explores, follows his big sister, Courtney (she fears him! - she runs screaming in the other direction whenever he gets close - I think he secretly likes this), and constantly continues to test the boundaries of his abilities.  Crawl faster, sit longer, and even climbing upward and the start of furniture walking. 

The physical therapist swears that she's never seen a child with Downs start walking before 17 months of age.  At this rate, we estimate he'll be about 14 months when he takes his first steps. 

But until then, we have speech therapy which will begin here in the next few weeks, and we just sit back and watch Jacob embrace life and all it holds for him. 

His infectious smile seems to draw everyone to him - even strangers. 

Tonight we went to a Gonzaga vs. BYU volleyball game and he caught the attention of one of the Gonzaga basketball players.  We spoke for a moment as he goo'd and gaa'd with Jacob and talked of how he missed his own niece on Oklahoma. And as the game ended, another stranger passed us by and told us how adorable he was and so much fun to watch.  This seems to be the norm every time we go out into public with Jacob.

Of course, Jacob is no fool.  When the smiles do not help him get his way, he has mastered his puppy-dog sad face which almost always gets him what he wants.  He IS the baby of the family, you know!

But right now, we are just happy to see him happy, healthy, and progressing like crazy! Including the fact that he FINALLY cut his first tooth tonight!!  Thank heaven for life's small miracles!  All is right in my world today !

How Can I Help?

I would be lying if I didn't say that this year has been incredibly taxing on our family physically, emotionally, financially, spiritually, etc.  But I'm a firm believer that we receive the trials in our lives

A) Because God knows us and knows what sort of adversity we need in order to progress and grow as individuals

B) To be mindful of our blessings and to be more appreciative of what we do have in life

This year has been full of growth and introspection. Among the other things that I've pondered over the year has been how incredibly blessed we HAVE been as a family.  Throughout it all, KC and I have had the strength of our friends, family, loved ones, church and faith, an incredibly supportive work environment, and even those who are strangers come to our rescue and lift us up when we were in need of help.  I have been humbled the the generosity, love and grace of others. 

It now appears (knock on wood) that we are finally through the worst of it.  Jacob has had his heart surgery and has been given a clean bill of health in virtually every aspect of his life.  Now all we have to worry about is making sure he has that little extra time needed to progress physically to his milestones.    KC is over the worst of his surgery and is now concentrating on physical therapy and working towards the ever-elusive 100% recovery mark.  Nathan looks well on his way to recovery and appears to actually ENJOY having his cast as an excuse to get out of doing the list of to-do's I create each day. 

Now that the storms have calmed, I've been wondering what I can do to give back and perpetuate all of the love and kindness our family has received - and to help those who may find themselves in a predicament similar to ours - but without the tremendous support system our family has had.  And I've come up with two things I thought I'd share.

First off, we're moving forward with Down Right Living.  It's going to be a non-profit organization designed to help those families touched by those with Down sydrome.  You can check out the website my daughter created at http://www.downrightliving.com

Secondly, I've found another non-profit that tries to find families for Children with disabilities in other countries.  What I love about it is that there's a grant system.  Finding families with the love and capacity to welcome a special needs child into their home is often difficult.  As soon as a family (regardless of singles, couples, old or young, large family, or no other children - it doesn't matter) commits to adopting a child, Reese's Rainbow starts raising funds to help pay the fees associated with adoption. 

I finally got on to their site to learn more about the children and was flabbergasted at how many children there were (most of the children are institutionalized once they reach the age of 4-6 years of age) who needed homes, and the range of care needed - some needed little or no care.  They just needed a home.

Even if you're not wanting to adopt, it's a great place to check out or donate - $5 makes a big difference to the lives of the child and the families trying to raise the $ needed to bring their babies home. http://reecesrainbow.org/ministry-video


UPDATE:  We've created a GoFundMe Link to help pay for the fees associated with starting up our non-profit.  Please please PLEASE! Donate if you can.