Saturday, September 30, 2017

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.  I 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.

Saturday, September 9, 2017

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

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.

Thursday, March 23, 2017

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?