Showing posts with label Down Syndrome. Show all posts
Showing posts with label Down Syndrome. Show all posts

Tuesday, September 23, 2014

Mornings with Little Man

Effortlessly cool while mom tries too hard. 


Many changes happen when you become a parent. Dinner, going to the store, getting ready for bed, these activities take on new shapes and routines. My morning routine is wonky. I still haven't worked out all the kinks.

Pre-Little Man Morning:
Jump up at first alarm - I hate snooze
Run if there's time,
Start the coffee
Shower
Blow dry hair
Sip coffee while putting on make up
Take a moment to check mail, FB, instagram
Get dressed- probably change outfits once or twice
Prepare my over-priced flaxseed whole-grain waffle with almond butter
Load car,
Listen to NPR and feel smart and up-to-date while driving to work 
Get to work 10-15 mins early.

Simple. No fuss. No rush.


Little Man Morning:
Hear Little Man get up at 4:30,
Pretend that I don't hear him yet and try to sleep another 30 mins praying he too falls back asleep
I am desperate for a snooze button now
Hear Little Man getting even louder
5:15 find him sitting up in crib looking at me sooooo sweet
Change the fullest diaper ever- this kid can pee - A LOT.
Take the sheets off the crib and put in wash- he peed through the diaper
Make him a scrambled egg and extra-fatty-dietitian-ordered smoothie
A mix of feeding and very supervised self-feeding goes on at this point
Attempt to start a pot of coffee
Make his lunch. which stresses me out every day. I am so worried about not sending him enough or sending him something he will choke on
Clean him up - somehow there is egg in his hair and his diaper
Set him in front of Baby Einstein where I now have exactly 20 mins to get myself ready
Shower or rewet my hair
Pretend my hair is curly and try to scrunch it with assortment of miracle curl-making gels
Swipe some eyeliner and mascara on
Throw on first outfit I find in closet
Load car with lunch pail, back pack and undrank coffee
Dress him while he attempts to eat my hair
Help him hold the bottle of almond milk he is trying to guzzle down
Load car
On the road by 7:20 or traffic will win the war its rage against me
Put on Toddler Radio or Page CXVI lullabies (Don't even mention the phrase "Science Friday" to me right now, I miss Ira like I miss a dear friend)
Get stuck behind stalled vehicle
Sing Wheels on the Bus for 45 mins. He really like it when the people go Up and Down. 
Get to school and attempt to put shoes and glasses back on that were taken off and thrown during the drive causing a scene in the parking lot.
Disheveled, slobber in hair and snot on sleeves we enter the doors of  Rise School



These changes while sometimes frustrating can also be the BEST part of my day.  Little Man is a morning person. He greets me with the absolutely cutest grin and cuddles in between ripping the glasses of my face. When we sing together he reaches for my hands to bring them to his cheeks, excited that I am there and singing his favorite songs. And we all know how I feel about two piece pajamas…..

Why did I wait so long to get up and hang with him? 

These moments are so temporary. Soon I will be handing him a sippy cup and telling him to eat breakfast by himself, longing for the days where he needed me to help him more but proud of his growing independence. One of my friends wrote a birthday blog for her precious boy who turned one last week. One sentence stuck out as she tried to encourage other moms of children with special needs:

"….you will get to enjoy your baby a little longer. And when they do hit those milestones you will celebrate like you won the lottery."

In our case, enjoying our "baby"even longer has brought me such joy as we missed the first 8 months of his life. Each milestone that I get to be there with him for has been like winning the lottery. Soon…. he will be two. Our frustrations, challenges and morning routines will look different.  Hidden in those challenges and routines will be the best moments a mom could ask for if I take the time to be fully present for them.  As we enter the season of "1-year ago today" moments….. I know I will be bombarded with the memories of getting his referral picture, getting the call with travel dates, first meeting, first time he feel asleep in my arms, first smile, etc. In one year my world has changed so much. Overwhelmingly wonderfully different. What will our life look like next year?

Have I mentioned he is the CUTEST BABY IN THE WORLD? 

This is our new "kisses" face. He is puckering up his lips asking for a kiss.  I mean…. you cannot withhold smooches from that face!!!
He fell asleep in the store-brand diaper. This is no good. NO GOOD. This definitely means a change of sheets in the morning. AHHHH but that little boy is one precious sleeper.




Wednesday, September 3, 2014

Chew on this: Meet the cutest eater ever

Eating/Drinking has been quite the adventure for us. But even if he hasn't always done it well- he has alway done it oh-so-cute!
Feeding in U was so scary. He only got 1/3 of each feeding and was struggling with aspiration.

Many international calls to our on call Speech Path Aunt Courtney for help.

He is a champ at pureed food. And now he can even sign "more".

At around 14 months we finally got down the pincher grasp and starting picking up bites of food ourselves. We are slowly upgrading and are now chomping on bananas, itty bitty bits of chicken, yogurt melts, pasta bits and puffs. Strangely he loves plain Quinoa. I know this list is only going to get bigger and bigger.


 We still have not been able to figure out the sippy cup. The honey bear makes an appearance at every meal and we make some grand attempts which usually results in him spitting water everywhere.


Spoons are also an excellent teether. 

Either side does the trick.


He chews cute my friends. Old man face is one of my favorites.

Showing off how well he eats broccoli. Veggies are better than fruits to this guy. Still having to puree quite a bit but I have figured out some easy go to meals to help save time and money. Those food pouches are awesome but that add up with your kid is downing 12-16 oz each meal. The fridge is overflowing with steam-ready bags of frozen vegetables. Microwave those bad boys and toss in the magic bullet = instant meal. Then add quinoa as a side is; heaven to Little Man. He might be a vegetarian. I keep asking him about it but he has yet to give me answer for now. He probably just doesn't like labels you know. Allowing room for him to change his mind later if he wants :).


Chomping on my pizza crust at dinner. He would not let me take it out of his mouth and placed a death grip on my hand.

Every week I am amazed at his milestones. He loves food. Is crazy about it. OBSESSED. 

Thursday, June 12, 2014

How the D's do senses


Hearing-

When we first got home, new mama bear rushed quickly to get Little Man into every type of doctor/medical appointment possible. Let's get the party started.
We saw audiology after only being home 3 weeks. Little Man and I sat in a chair in the middle of a little room with black speaker boxes scattered across the wall and in the corners. Then the audiologist sitting outside the room used the microphone to play her voice at  certain tones or volumes through one of the speakers and evaluate the response. Will he look in the direction of the box the sound is coming from?  Little Man looks anywhere but the speakers. He mainly just stared at his hand the whole time. We stepped out of the sound room to receive the verdict that we have moderate to severe hearing loss. 

Really? 

At that point, he had only been out of an orphanage for 3 weeks where I am sure he had learned to tune out distractions. Noise and sound was not relevant to him there. It had no meaning. So when he doesn't turn to look where a sound comes from, can we know for sure he is not actually hearing it,  or does he just simply not care?

Congestion is a theme in this house. Each morning is greeted with thick snot and a junky cough until it has an hour to drain out.  I was not surprised when the tympanometry readings of Little Man's ears showed this little guy is full of fluid. Yeah, it pours out all over me every morning!

Last week we repeated our audiology appointment, now 5 months home. He still didn't look at very many of those speaker boxes. HMMMMMMM……...

Time for Eustachian Tubes.


Vision-

About 2 months ago, we started noticed that Little Man's eyes would cross several times a day. Ok to be honest, My mom vision never saw it. I just see cuteness every time I look at his face!  Walking into his one year well-child check up the first question I got-

 "How long has he been going cross eyed?"

 And now that I am aware of it I see it quite I bit. It has gotten worse. Our first opthamologist appointment (remember how I was over zealous mama bear?) was the first month home and we were told everything looked great. In fact, we were even told not to come back until pre-K or Kindergarten for another check up. However, that is not consistent with the recommended screening for children with DS, but who I am to argue with a TCH ophthalmologist. 

This time we went to the same ophthalmologist our pediatrician (who we simply adore by the way) uses for her daughter and got much different results. 

Time for Glasses.

We are on the road to enhancing our senses!  

Any recommendation of brands for glasses for a 14 month old? One who is trying to learn to crawl and likes to face plant frequently?

What do you guys think of Miraflex or Specs4Us?

Hubs likes how Miraflex looks better, but I have heard that they sit too close to the eyes. 


Specs4Us



I guess he is not a fan.

He was over the whole "enhance the senses" movement at this point. I did not even try to do a MiraFlex photoshoot. We will try again this weekend.