Four Surgeries Summer 2017

The last couple of months have been chaotic. But how is that different from any other day, week, or month we've had in the past 6 1/2 years?

Well, we had four surgeries this past summer.  Don't worry! None of them were life threatening. A few of them we anticipated.  Some we combined so he wouldn't have to be sedated four times. In total, he was put under three times in two months.

Ultimately, this is why I've been MIA for so long.  In addition to therapy three days per week (our normal schedule), we'd been doing doctors visits galore, verifying that Jacob was healthy enough to go under the knife. Then there was the juggling of appointments and getting all four doctors to communicate with one another (that did NOT go well), phone calls from the nurses, insurance, paperwork, pre-ops, post op visits, and recovery time.

Add in that I also had a procedure a week after Jake's last surgery, and my husband had been experiencing some physical issues during this time and discovered he will need a major surgery in December, and I can honestly say we're done with doctors for a while. Sigh. Except somewhere along the line, they forgot to do his annual blood work while he was put under, so I'll need to do that here shortly. And he needs an X-ray to check his spine for an issue that's common among kids with Down syndrome.  This, too, is something we've known about for years. We've tried a couple times to get the x-ray done, but he wiggled and fought too much. Our pediatrician doesn't want him doing any major sports until this has been verified though. And since Jake is nearly seven, I'd like to get him into sports. Lots of them.

But I digress...

We had four surgeries. One on his teeth. One on his ears (he had a perforated ear-drum on one ear, and the T-tube on the other had fallen out). One for a circumcision (he still wasn't potty trained and his stream was only a trickle). And one on his eye (to help with the crossing).

Teeth:  This was an annual thing.  Jake is only just beginning to let us put a toothbrush in his mouth, and usually for only a few seconds.  Which means that, at age 6 1/2, his teeth haven't been brushed. I know. Ick!  There are so many things wrong with this scenario. But, ya know what? We've been through open-heart surgery.  In the grand scheme of things, this is a walk in the park.  No, this is a NAP in the park.

Luckily, he has tough teeth (thank goodness).  He had one small cavity, they cleaned him up good, noted he's lost a couple baby teeth, and said he's looking healthy.  Come back next year.  Yay!!

Ears:  So, Jake never tells me when his ears hurt.  No sign language, rarely any ear itching/tugging, nothing.  If he hurts, he does nothing to indicate the pain.  I saw one itch and boom! I was calling the ENT.  Guess what? Ear infection. And a perforated ear drum. And the t-tube may or may not have come out on the other ear.  Surgery.

That's okay.  This was not our first...or the second...or the third time at this rodeo.  Plus, our ENT is uh-maz-ing!  We set up an appointment, Jake walked in (a week after his teeth), gabbed with the pre-op nurses, grinned, flirted, and walked right back with them when it was time for surgery.  He was a ROCK STAR!


I hung out in the lobby until they were done (about twenty minutes) and then they called me into recovery.  I knew Jake has a hard time waking up after anesthesia, so I expected a bit of time in the room with him.  He did not disappoint.  I think we were back there for a good forty-five minutes before he was awake enough for me to dress him. Not even grumpy. Thank heavens!  He got to ride out in a wheelchair, and we were home to snuggle and relax for the rest of the day.  No pain meds, and no grumpiness.  By the next morning, he was good as new.

Circumcision/Eyes: These procedures were done together.  For both, I was told he'd be sore for a day or two and then be back to normal.  Once we got to the hospital, I was told by the eye doctor there may be a little bit of bloody tears after surgery, but that was normal. He'll be good to go in a day or two.

Same sort of response from the Urologist.  No problem. I got this.

When Jake came out of surgery, he was in PAIN. Not discomfort. PAIN.  He moaned and cried, and insisted on a wet washcloth on his eyes while refusing to let anything near his penis. I'd never seen Jacob panic, but he was panicking if anyone came near his penis. I felt horrible for the little guy.

During the 2-3 hours we waited for him to wake and try to eat, the nurse mumbled about how all the doctors tell their patients the surgery doesn't hurt, but then after they get rolled into recovery, they realize how they'd been mislead.

She informed me past patients say the eye surgery is like having sand thrown in your eyes and not being able to do anything about it. And I'd heard from someone else how their husband had a circumcision as an adult and said it was one of the most painful weeks of his life afterward.  I tried very hard not to take my frustration with the doctors out on the nurses. And, of course, I didn't see the doctors again after I'd seen Jacob.  Besides, what were they going to do? Undo what had already been done? Yeah...nope.

After several hours, we managed to get about 15 goldfish crackers down Jacobs throat, and he drank 1/3 of an apple juice.  We managed to convince him to take a ride to my car in a wheelchair, but he refused to put anything over his penis, so we had to drape a blanket over the handles of the wheelchair and drape it over his knees so that he wasn't flashing the world en route to the car.

I gently sat him down in his car seat, and he drove home, free as a bird, panting. After walking from the car to the house, buck naked from the waist down, he laid down on the couch, happily took some liquid Hydro's, put a washcloth over his eyes, and laid there, stiff as a board.

Jacob didn't put a diaper on for three days.  On the fourth day, KC managed to get one on him while I was at work.  When I came home, I changed him before bed, and he had a panic attack, the pain was still so severe. He had panic attacks for weeks afterward.  He also had a stream that hit the wall now. Yeah, he had to re-learn how to pee. 

Jake's eyes looked like the blood vessels had ruptured for two weeks, and I nearly took him to the emergency room because he had some sort of tissue bulging from the corner of his eye for quite a while. But eventually, it calmed.  Now, more than a month later, his eyes still get red easily, and he is hyper-vigilant about his penis. 

Was it worth it to correct crossed eyes and increase his stream? I'm not entirely sure.  I certainly would have thought much longer and harder about the process if I'd know this would be the result. 

Next time, I won't be nearly as naive.

9 Reasons Why I'm Grateful My Son Has Down Syndrome

I am a member of several Down syndrome support groups. Because of my schedule, I don't get to meet with many other parents in person, so I choose to stay in touch online and offer support as needed via the Internet.

There are a surprising number of parents who find out about their child's Down syndrome diagnosis and then join support groups in a tissy because they are worried about how bad it will be to have a child with Trisomy 21.

Now that Jacob is nearly seven, I like to think I have a bit of experience. So, to all those parents who just found out their child has Down syndrome, let me congratulate you. You've won the lottery! You will now get to raise one of the most amazing children on the planet!!

Why do I think that? Let me give you nine reasons:

1. They love unconditionally. I thank my lucky stars each and every day for Jacob.  He is the kind of person who doesn't care what you look like, smell like, or think like.  He doesn't care if you're young (though he is partial to babies and children smaller than him), old, middle-aged, black, white, tan, green, or purple. He loves you. If you grump. He ignores it (for the most part).  If you grump at him, he gets over it pretty fast and loves you anyway.  Every day he teaches me to look beyond the cover, and see what's inside.  That's where a person's true value lies, and everyone is worth loving.

2. They give more than they take. Yes, children with Down syndrome require extra work, extra patience, and often extra care. But they seem to give back tenfold.  When ever I need to smile. Jacob gives me seven. And then he laughs until I'm giggling right next to him.  If I need a hug, he'll snuggle all day long if I want.  If I need some company, he's happy to tag along wherever I go, regardless of what I'm doing.  If I need love, he will smother me with kisses and adoration.  If I need space, he's happy to give me some of that too. The boy's a giver.

3. They are intuitive to other's needs. I am constantly amazed at how in tune Jacob is to the needs of others around him. Granted, sometimes he still says, "screw you!", but most of the time, he senses our moods and our needs and works extra hard to give them to us.  If I'm sick, that's the day he decides to hang around, watching Netflix while cocooning at my feet. Most days, I'm running after him screaming, "get back here!" If I'm angry and need space, he usually gives it to me. If  need a hug, all the sudden he's in my face cuddling.  He's that way with others - family and strangers alike.  It's interesting to see how many strangers he interacts with and they tell me how badly they needed that time and energy from him.

4.  They teach us to stop and smell the roses. Oh, this one he's taught me six ways, side ways and upside down.  Jake is a quick learner, and he is extremely capable for a child with Ds. But if he doesn't want to learn something, or he doesn't see the value of it, nothing I do or say will make it happen. Instead, I'm forced to move at half a snail's pace, learning to appreciate the blessings I do have, feel the energy of those around us, take time to appreciate the scenery, and literally learn the joys and mysteries of playing with sticks. And I highly recommend it to anyone who is reading this. I'm a person who finds a task or chooses a goal and puts on my blinders, moving a million miles per minute until I achieve it. Jacob has taught me that not all who wander are lost.

5. They teach us that the opinions of others do not matter. On those rare occasions when someone is mean or cruel based off of Jacob's disability, or if they say something out of ignorance, it is easy to become offended, hurt or angry.  Those are the moments when I observe Jacob and realize, he doesn't really care what others think of him. He's on this earth to love and enrich those around him.  If someone wants to be his friend, then great! Join the masses.  If not, no worries.  Haters are gonna hate and he's not concerned with their opinions.

6. They teach us what is truly important in life. Before Jake was born, I used to think that having one's health was the most important thing.  If we had nothing else, then we would be fine. Then I had Jacob. And he was NOT healthy.  I spent many nights in the hospital gazing at my sleeping son with mottled skin, and labored breathes, wondering what was truly important.  If not health, then what? Then it occurred to me that the truly important things are not things. They're love and relationships, not matter how fleeting.  Money runs dry, health deteriorates, friends move on, family can be conditional.  But love conquers all, and healthy relationships will help a person survive virtually anything.

7. They teach us to never give up. My child is not a quitter. Yeah, it may take him longer to learn something. It may not. But when he puts his mind to it, hell itself won't keep him from achieving his task. Fall down seven times, get up eight? Psht. Amateurs. Fall down 57 times, get up 58.

8. They help us learn to serve others. One of the hardest things I learned to do while Jake was in the hospital was to accept help. I'm the sort of person who can plan a seven course meal with the mayor, fix your sprinkler system, sew a dress, and build you a website. With nine siblings, our parents taught us to do just about everything. And if we didn't know how, by golly open up a book and learn!  So when I was no longer able to do everything, I had to ask for (and accept) help from others.  For a very long time.  I'm talking years.  But this experience helped me learn what it feels like to ask for help, receive help, and how important it is to offer and serve others with the right attitude. Oh what a difference is makes to walk a mile in another's shoes.

9. They are unfiltered. Jacob's inability to filter his reactions is one of my favorite things about him. I always know where I stand with him. Always.  If he's upset at me, I know it. If he's happy. I'll get the biggest grin on the planet. If he's feeling playful, be prepared for lots and lots of zerberts. If he's said, he'll let me know.  I don't have to second guess, or interpret him. For a non-verbal child, Jacob is incredibly expressive.

After seven years, heart surgeries, countless medical procedures, and all the issues we've had with speech, etc. I still wouldn't trade my Jacob for anything in the world.  If I was told before he was born what his childhood would be like, I still would have chosen to keep him. Because, from beginning to end, Jacob has been one of our greatest blessings.

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.  

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.