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.  

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!

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.

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.

Birthdays and Buddies

What a crazy busy week it's been!

Jake had is fourth birthday on Saturday (Wahoo!) and it was surprisingly low-key.  What I love about this age is that there are no real expectations from the little ones.  He didn't care that I bought him a cake.  He didn't care that the gifts never actually got wrapped - he liked playing with the bags for days afterwards.

He LOVED the car we bought him.  It had buttons for him to push that created sounds and flashing lights on the top of the hood, then the car moved forward - fast if he was on the linoleum.  The sounds drove the rest of the family crazy, but I think that was part of the mystique for Jake.

For quiet times, we bought him several small dump trucks, front loaders, bucket trucks, etc.  They're perfect for the palm of his hand and he can carry them anywhere, which is a bonus for him.

And, of course, a magic microphone to help encourage his speech.

Like I said: Low key, but nice.

Tuesday we dressed him up in his knight costume and the little ones went trunk or treating at our church.  He's been munching on candy all week.  I will be soooooooo happy when the candy is gone!












And yesterday, I got to see Josh, Jake's NICU buddy - also with Down syndrome, who was born the day after Jake.  Josh and his mom came to town and we got to spend a little over an hour catching up with one another as Josh had his monthly chemo and check-up.

I am so lucky to know Marla and Josh.  Not only because they're a great family, but how many people have the opportunity to have a child nearly the EXACT same age as your own to kind of guage things off of?  I can look at Josh and realize that he's a much better talker than Jake, but Jake is taller and bigger (probably due to genetics and the drugs from the cancer).  Both of us are going through potty training right now, and have discovered that both boys are doing it backwards from our other kids - mastering pooping in the toilet first, then peeing.  Who knew???

It's been a great reminder that we're all in the same boat, our kids do things a little differently, and sometimes slower than non Ds kids, but we're all getting it.  And, really, would you want it any other way?  Nope.  Not me.  I love Jake just the way he is.  He enriches my life in so many ways that I wouldn't have experienced if he didn't have Trisomy 21.  He makes me a better mother.  A better person.  And that's what it's all about, right?  Being the best person you can be.  Sigh.  Life is good. :)

Jacob's Annual IEP Meeting

This week was the annual IEP meeting where I sat down with all of Jakes therapists to discuss his progression over the past year and their goals for the next 12 months.

The Occupational Therapist informed me that Jake is at or beyond his age in this department, using his right hand 95%+ of the time, using forks and spoons, doing well with his signs, and using a 4-finger pincher grasp when coloring.  He is drawing, but his goal is to make the plus sign and a complete circle on his own - things that a normal 4 year-old would be attempting to do. She says he does pretty well with the scissors, and LOVES to cut things (so hide the scissors at home!), but he can't quite do a straight line all by himself yet. She said another goal was getting him to button and un-button things.  

The Physical Therapist reported that Jake is quite the runner (bahahahahaha! - ya think?? ) and has escaped from the playground area a few times.  But they're working on getting him to actually listen to instructions and follow them.  She said that he's stopped a couple of times when they called to him, which in my estimation is a HUGE improvement over the last 12 months.  She said that he's only used the toiled 1 time, so there is lots of improvement there.   I explained that Jake does quite well when he's buck nekkid, but the minute you put clothes on him, the reverts.  So, that will be another thing we will continue to work on. 

Speech Therapy was actually better than expected.  He's enunciating several of his vowels, signs several words, and is making slow progress.  I asked if they thought there were issues with his ears, and the ladies all agreed that he listens to instruction.  We decided that his issues are primarily due to stubbornness (go figure!)

Jake is now learning his colors in sign language, follows simple instructions, and they are working on giving him 2 sequential instructions to follow, which he does occasionally.  

He's extremely cognisant of the feelings of others, and will hug anyone who is sad, and try to care for anyone having fits or crying.  

The ladies seem to adore him, which is always a good thing from a mother's perspective. 

All in all, I'm thrilled with his results.  He's at, or above age in everything except for speech, and even in that area progress is occurring.  Yay, Jacob!!

A random story about Jacob

 *All names, locations and information was made up to protect the innocent*

Once upon a time there was this little boy named Jacob. 

He had 3 big brothers and sisters who always seemed to have fun.  Jacob wanted nothing better than to run and play with his brothers and sisters. 

But because he was so little, he was often left behind.  

Poor Jacob.  He was so sad.  Being little was nooooo fun. 

One day, little Jacob decided he wasn't going to stay home any more.  

So he filled his backpack with goodies, and decided to go on an adventure of his own. 

During his travels, he want to the botanical gardens,

National Forests,

And even the grasslands of Africa.

Every day was an adventure for this little fellow. 

After traveling the world, little Jacob decided it was time to go home.  

He packed up his bags, and made the long journey back to his family.

His big brothers and sisters greeted him with open arms and told him how important he was to the family.  They had missed him soooooooo much!  Jacob never realized how important he was to his family, and decided that he would save the rest of his travels for another time when he was much much older.  

The End!

P.S. ~ This was just an excuse to showcase some of my favorite Jacob pictures from the last couple of weeks :)