Update on Gemiini.org - It's been a long time coming!

What does a crab say?

Holy cow!  I did NOT intent to go six months before returning Jacob to the Gemiini Program. But, life, being life, threw us a curve ball and we've been knocked flat on our butts for the last four months dealing with test after test, blood work and doctors appointments for our oldest daughter (age 19) after it appears she had a TIA (a mini-stroke) at Christmas. 

Come to find out she has a hole in her heart and a macro adenoma (tumor) on her pituitary gland in her brain.  But....that's a story for another blog :)

During that same time, we discovered that Jake's T-tubes had fallen out.  How can that possibly be? Those buggers are sewn into the ear drum and don't fall out. They're surgically removed. 

Yeah, well.  This is Jake we're talking about.  If it can't be done, he will do it. 

So, in January, he had his second set of tubes put in, and the ENT said this ears had looked horrible when he did the surgery - pieces of flesh were removed, both ears were highly inflamed, lots of fluid behind the eardrum, etc.  Yeah, all sorts of nasty fun. 

But, when the surgery was done, he began to hear.  How do I know?  Well, he'd walk into the ENT's entryway, which was basically a stairwell, and yell to hear his echo.  It was adorable - in a cute sort of way.



What does a Lizard say?

We took him to an audiologist twice to make sure that he could hear and were told that he can hear down to 2 decibels (he's in the range of normal).  Wahoo!

Now, we begin playing the game of catch-up.  Still, at 4 1/2 years old, Jake is basically non-verbal.  Occasionally (as in once every 2 or 3 weeks) he will say a one or two word comment, which his hard to understand unless you're looking for it.  But other than that, life is all about a series of grunts, hand gestures, and pulling on my hand to show me what he wants.

Last week we were finally able to start Gemiini again - after nearly 7 months.  I figured we'd be starting all over again.  But you know what?  It wasn't like that at all. 

As soon as the videos came on, it was like he'd found his long lost friend.  Jake looked at me and his eyes lit up, then he began mimicking the animals and the sounds he'd learned previously.  It was like he'd never stopped!  I can' tell you how nice it was to know we hadn't lost all his hard work. 

We were able to get about 20 minutes in that morning.  And another 10 in during the afternoon. 

The big issue we're having right now is that I'm using the Ipad and he likes to play with the buttons - hitting play, then rewinding, then fast forward, etc.  I think it's a universal thing for kids his age.  I hear there's a way to lock the screen, which is my goal to figure out tonight. 

But I know that people were waiting on an update.  So this is the first.  I'll add a video of him watching Gemiini in a couple days so you can see where he's at in the process. Then I'll give you more updates as we progress.

Thanks for your patience!

Love and Intuition - Jacob Style

I don't know what it is about my boys.  But I am truly blessed.  

My girls are pretty freakin' awesome too.  Elisha is uber talented in EVERYTHING she does.  It's kinda disgusting, actually.  And I'm her mother.  She plays Division 1 Track - 4 events, was offered college scholarships in music and volleyball as well, is a truly phenomenal artist, is beautiful, smart, funny, sweet, caring, and dynamic.

Her 5-year-old sister is her mini-me.  Her goal in life?  To rule the world by the time she's 10.  She may actually do it.

But with all the talents my girls have, my boys have in equal amounts of intuition and love.  I'm not saying that they're stupid or ugly.  Quite the opposite, in fact.  Nate has a near photographic memory. And you've seen the pictures in other posts.  My family was not hit with an ugly stick (thanks to their father's genetics). But the qualities I cherish most in my boys is their concern for others and their laid-back attitude.

My girls? Well you don't get to rule the rule by sitting back and doing nothing.  My girls are a bit high-strung  which is why they're over achievers.  It's go go go all the time.  Courtney never shuts up.  Ever.  It's question after question after question as her little mind absorbs as much information as is humanly possible for a 5-year old.  Elisha is working her butt off at college from 7 a.m. till 11pm most nights, and still finds time to come home on the weekend to be a big sister to the youngers (Jake and Courtney).

Nathan and Jake.  Well, they just know.  Nathan is a watcher.  He observes and absorbs.  Jacob explores and discovers.

Up until today, I just considered Jake inquisitive (that's a very nice word for 'the little boy gets into virtually everything in our house'. He takes it apart, tries to put it back together, gets frustrated, throws it on the floor and moves on to something new while I try to pick up after him - over and over and over again).

Today was not a good day for me.  I somehow pinched a nerve in my shoulder rendering one arm useless, then proceeded to get a nasty migraine that had me pretty much incapacitated for the entire day and well into the evening.  Throughout the day, as I was laying on the couch nursing the pain in my body, Jake would come hang out with me.  He'd bring his tablet and sit on me and quietly play.  If I managed to pull myself up to a sitting position, he'd sit on my lap.

By 6 pm I decided to try to sleep some of the headache away while the olders (Nate and KC) watched the youngers (Courtney and Jake).  I was in my pitch black room 5 minutes before Jake cracked open the door and snuck in, closing the door behind him.  He climbed up on my bed, laid down next to me, and cuddled quietly in the dark next to his sick mother, putting his hand on my face, then petting my hair, trying to comfort me.

It was the sweetest thing!  My adorable 4-year-old son was trying to take care of his sick mom.

He stayed in the pitch black room with me for another 20 or 30 minutes before he walked out, got my Iphone, came back in, and watched Madagascar next to me (still in the dark) and held my hand.  He stayed next to me until it was his bed time, which wound up being him cuddled up next to me until he fell asleep for the night.

After a night like tonight.  No one can tell me that having a child with Down syndrome is a trial.  No one.  Nuh uh.  Jacob is not lucky to have me as a mother.  I  am lucky to have Jacob as a son.

Savouring the Little Things

Yesterday my post was filled with negativity.  I am not a negative person.  I don't want negativity to eat up any more of my life than is absolutely necessary.

So, today, I choose to relish and share, but a mere moment of the blessing I call Jacob.

Two days ago it was spaghetti night.  Spaghetti is one of Jacob's favorite foods of all times.  Bar none.  It's always a treat to watch him eat spaghetti.  Not because he makes a ridiculous mess (because he does), or because he refuses to use a fork (which is also true), but by the sheer revelry he displays when savoring every last bite of his meal.

We're not talking a pile of spaghetti the size of an egg.  No way!  Jacob eats as much spaghetti as I, a full grown adult, eat.  I understand that lots of kids with Ds don't have an 'off' switch with food.  And we have yet to determine if Jake is that way yet - basically because all the rest of his siblings are athletes (and GIANT athletes at that - Elisha is 5'10" and Nathan is 6'2 - at age 15) and eat more than a football team combined when they're home.  So I have nothing to gauge his eating habits off of yet.

Anyway, I digress.  Back to Jake and his spaghetti fetish.

So we sat him down with his rather large serving of spaghetti.  As the rest of the family finished their meal, I looked over to watch Jake who had been unusually quiet.  He took one strand of spaghetti between his thumb and pointer finger (great fine motor skill practice, by the way!) and slowly pulled the noodle from the plate.  Pulling...pulling...pulling until the twelve inch string was lifted as high as his stubby little arm would go, dangling just above his mouth, enticing him to bite.

After a few seconds of watching the noodle wiggle in the air, he slowly lowered the very tip into his mouth and bit down with his lips - not his teeth.  Don't want to break the noodle, after all.  Then, he sucked, slowly drawing it into his mouth, until only a few inches remained.   As he sucked, his eyes rolled back into his skull in absolute bliss, then he closed his eyelids, half smiling at the taste of his favorite food. Then he pulled the noodle out again, sans the sauce.

Next, he repeated step 1, however, this time, he sucked harder, letting go of the noodle with his hand, and allowing the strand to flip and flop around his mouth as it got shorter and shorter, and disappeared.  Smack!  All gone.

He took a moment to chew the soft pasta and swallow, then looked at his plate and half smiled again before rooting around for another perfect noodle to repeat the process.

As I watched Jake eating his spaghetti, I was struck by how important the little things are - not only to him - but to all of us.  If we continue to get caught up in all the big stuff - then how can we appreciate the little things?

If I continue to worry about making sure all of the bills are paid on time, or keeping the house spotless (which it is NOT) how can I appreciate the fact that my husband works DANG HARD to make sure that I have the opportunity to stay at home with our little ones full time? I get to make sure they know their alphabet, hold them when they wake up from their nightmares crying, laugh with them when they run circles in the living room chasing one another, teach them to be kind to others and to take responsibility for their actions, and raise them to be productive parts of society.  This is especially true with Jake because he needs just a smidgen more time than his siblings.  And I'm blessed with the opportunity to be that kind of mom because my husband makes it so.


 I am blessed to be able to watch Jake savor his spaghetti, or run around pretending to be a robot from Megamind, or run in circles when the music comes on, or drive Courtney to school and pick her up, and volunteer at her school once a week.  I'm blessed to be there when Nathan gets home every day and to be able to ask him about his day, and tease him about girls.

Ah, what a tremendously blessed life I have.  Thank you, Jacob.  For showing me it's the little things in life worth enjoying.  All those little things begin to add up into one great big - giant even - epiphany of happiness.   Life is good.

Mommy Dearest

Now Jacob is no respecter of persons.  He doesn't care if you're Courtney, a 20-month-old toddler who has a propensity towards screaming at high pitches and doing a hard-core head banging dances to whatever music is on the radio (provided she doesn't jump on him).  He doesn't care if you're some stranger dropping by to say hello.  And he even wouldn't care if you were some big shot like the Pope or the Queen of England.  He treats everyone the same.  He quietly endures us all provided we don't do anything to hurt him or annoy him.

At least I thought this was the case with Jacob until this evening.  For the first time ever, Jacob showed a preference towards someone.  The boy doesn't even really smile yet - on purpose anyway.  He just goes about his business happy to be held by whomever chooses to pick him up and love on him for a few minutes or hours.  It's all good to him.

This evening after his evening round of medications and the standard gag/puke/gasping fit, Jacob was laying in KC's arms and I came over to check on him while he was in his fathers very-capable hands.  As I began speaking to KC, Jacob turned his head, looked at me, and proceeded to push off KC's arms and twist his body towards me almost twisting out of KC's hands.  For a little boy who doesn't even have the muscle strength to hold his own head up yet, Jacob seemed awfully determined to be in the arms of his mother.

Of course I was MORE than happy to comply with his wishes and we proceeded to have several minutes of mother-son bonding.  How could I not?  His wish is my command and that darned little boy has me wrapped tighter and tighter around his little finger each day he's alive! Ah yes! It's good to be mom!

Cuddlebugs and Other Horror Stories

Apparently, I am in my nesting phase.  In all my zeal to prepare for the baby, I decided that THIS WEEK was the week to completely revamp his room (insert eye-rolling from everyone in the household here). 

It's not enough that I want to re-paint the room from the nice generic yellows and greens that were used for Courtney into a nice calming smokey blue, creams, and whites. Nooooooo.  I decide that we need to replace the baseboard heater with a wall heater, replace the light with a ceiling fan, and, oh! while we're at it, let's just get rid of the popcorn ceiling too!  Of course, I'M the pregnant one.  So I get to dictate, but not actually do any of the work.  The poor souls who call themselves my family get the distinct opportunity to do my bidding.

So, yesterday, to my great delight, Elisha and Nathan set off to get rid of the popcorn on the baby's room ceiling.  Surprisingly (according to Elisha) it came off much easier than anticipated.  So, rather than being a several day project, they had that entire ceiling stripped by evening and even had time to go to the park for a couple hours after dinner!  Not-so-surprisingly, the entire process was a HUGE mess!  And, because it is still Courtney's room, they had all of her furniture to contend with during the process.

Finally, when it was time to put Courtney down for the night, we decide it was no use.  That room was not suitable for a 16-month child to sleep in.  The toddler was going to have to sleep with "mommy and daddy" tonight.  With great trepidation, I took my little toddler into my room for the night.  As soon as she discovered that she was NOT sleeping in her lonely crib for the night, but instead having a sleepover with her much-adored parents, Courtney began to giggle.  A HUGE grin spread over her face, she chose the biggest pillow right in the middle of our giant king size bed, and snuggled in for the night with her perma-grin on her face.  I began to think that this wouldn't be such a bad thing after all.  Courtney can stay on her side of the bed (the middle) and KC and I can sleep on our sides.  No need to even touch the whole night long, right?  WRONG.

2 1/2 hours later KC and I came to bed for the night only to discover that our sweet little angel had shifted and turned herself so that her tiny little body was stretched as far as it could possibly stretch in all directions from the very center of the bed.  KC gently maneuvered her back to her appropriate spot, we climbed into bed, and then....HELL began. 

Our jostling of the bed woke Courtney just enough to realize that her parents were in bed and she began to grin again.  Courtney began to twist and turn and squirm until she had her head touching my back and her feet in KC's side.  OK, that's not too terrible.  I can put up with that.  I rolled over onto my side and tried to make the best of an uncomfortable situation.  As soon as I moved, she decided that she wanted Mommy more and immediately snuggled her head into my back so that I couldn't move.  I was pinned between a little girl, trying not to crush her, and the very edge of the bed trying not to fall off.  And thus was the beginning of what was to be a VERRRRRRRY long night.  Every time I moved, she nestled closer.  Sometimes I'd wake up with a foot in my face...or her rump (her favorite position).  Occasionally I'd open my eyes only to see her tiny little cherubic face literally centimeters from mine, breatheing her hot breaths into my nose (for a pregnant lady, that's sheer torture!).  But the straw that broke the camels back came at 4:30 in the morning, after waking up for the umpteenth time only to discover that she, AGAIN, had her feet dug into my back, my arms, legs and very pregnant belly were hanging over the edge of the bed, and my entire body was tensed up trying not to fall out of bed. 

Enough is enough!  I drug myself out of bed, climbed onto the the living room couch and had the best 30 minutes sleep a person can have before having to wake up for another looooong day of preparing for baby.

This morning I woke up with a strong resolve to get Courtney's room cleaned, whatever the cost! Because I was NOT going to spend another sleepless night at the mercy of my little Cuddlebug!!