Good Karma...at Long Last

So. I'm kinda sorry about this post because it's gonna be a brain dump and me blabbing about day to day stuff that's happened in the last 30 days.  We've been holding steady ever since LJ's ear tube surgery earlier this month.  Been back to the doctor twice to be sure the ears aren't infected and the tubes looked good.  We're still running pretty low on sleep- so that much hasn't changed.  And we're changing Lewis Jack's name to Harvey Headbanger.  He has resorted to banging his head on the wall, either because it feels good, or to get our attention or because he has always sort of thrust his weight backwards due to his hyper-tonicity and since he's getting bigger maybe it's just his natural proclivity. 

We don't know what the answer is.  Not to make light of it either.  It has pretty much freaked me out.  Is it pain?  Is he frustrated because he cannot sleep? We've tried talking to him to get some feedback but but there's only so much we can uncover with yes and no answers or asking him to point to what's bothering him.  It's like the most difficult game of charades you've ever played....except someone is gonna get hurt if you can't figure it out.  I've tried meditation with him.  I've bought toddler-size sleep sacks (Amazon.com is the best) so when his covers come off in the middle of the night he doesn't get cold.  We've had to endure uncomfortable nights sleeping on the floor alongside his bed.  We've kept his nightstand lamp on throughout the night in case he's become afraid of the dark.  We've explained its ok if he cannot sleep but we can relax and lay in our bed quietly.  He has a recorded button that calls for Mommy or Daddy attached to his bed.  So why the headbanging, screaming and kicking?  We're talking several hours in the middle of the night. Ssshh! We've even tried melatonin....

Clearly, he is trying to tell us something and we just are too slow to figure it out!  This has to be the most upsetting thing in the world to me.  If only we could figure it out...to hold him close to us...to not let ourselves, his own parents, be one more person in the world that can't understand him.   So I called in for reinforcements on a solution to pad his walls so at least he doesn't end up with a brain hemorrhage!  Didi and Bop helped put together a makeshift "Sleep Safe" bed until we can determine whether or not this child needs to wear a soft helmet and whether Medicaid will cover us for realz with this mac-daddy Sleep Safe bed as a permanent solution.  Until then, we have protected him by using old memory foam stapled (staple guns are a great way to get out your frustrations with life) to leftover plywood and place against the walls surrounding his bed. Didi took some of my old curtain fabric and covered up the ugly foam to make it a little more attractive on the eye;) Thank you Didi and Bop!!

One sleep deprived day I took wheelchair matters into my own hands and tried to adjust it for LJ's growth.  Hindsight's twenty twenty cause I shoulda let the professionals tweak the chair.  Well, um, I ended up needing to go to urgent care for a coupla stitches in my finger.  Silly finger wouldn't stop bleeding.  I felt like such a wuss compared to how tough LJ is when he's in pain or has much bigger boo boos.  Stupid wheelchair- couldn't see straight and massive headache-can't wait to get rid of you!

In the DIY department, Bop crafted this beauty seen below for the bathroom.  LJ has a problem with most soap dispensers.  So Bop took a Chinese take out container, a regular soap dispenser, and poured concrete around it.  This gave it a sturdy base so that LJ wouldn't accidentally knock it over when he was trying to wash his hands.  And its reusable- when its empty we slide out the soap bottle and insert a fresh one.  Then he cut a circle out of wood to make the top a larger target for LJ's fine motor skills to be accommodated. Its got a metal bracket thingee to keep it in place so when you need to place it on a new bottle it swings out to release the top.  LJ's right hand is still tight and usually balled up in a fist, so he uses his left hand on the pump and squirts some soap onto his right fist and then he internally says his ABCs until his hands are clean.  (just kidding about that last part...I don't know what he's really saying.  Could be swearing for all we know)  Now, if I could just find some time to paint it or make it all matchy matchy with our bathroom decor we'll be all set!

LJ also has been completely obsessed with routines and schedules.  Its been a challenge. We can't get through a meal period without him repeatedly wanting to know twenty questions.  Who's coming? What's for breakfast?  What's the order I will eat that muffin, applesauce and cereal?  Will there be ice in my water?  Who's picking me up today?  What's tomorrow's school lunch? Who's picking me up tomorrow?  What therapies are after school?  When is Mommy teaching? Who is babysitting?

how ironic that I chose this routine given the first chapter of this blog post

We recently found this fabulous app for his iPad called Good Karma.  It has definitely improved the game.  We used to do this with small, square, velcro Boardmaker images but it was extremely labor intensive and took up a lot of storage space. This app is convenient to have on the iPad or your phone, and you can use stock pictures or upload personal photos from your gallery.  We've even had a little speech practice thrown in, involving LJ in the process.  For each activity we put on the schedule, we let him try to record the audio label.  He lights up when he hears himself.
When he starts getting anxious about his routine, we can access his Good Karma app, and all is good.

On a similar vein, our Cranio Sacral Massage (CST) therapist forwarded the link below.  It is the fobityy shiziitty BOMB!  Please check it out....it will surely become a valuable list of online vendors, research on typical SN topics from CVI, Communication and Equipment such as wheelchairs, gait trainers, etc.

Resources for Parents of Exceptional Children

Okay.  Thank you for sticking with me to the end of this rambling post.  I'm off to find out when the equipment people can come out to adjust LJ's hi-low chair (I'm not making the same mistake twice). They were supposed to call me back yesterday about setting up the appointment.  So now I go chase them down.  My work is never done.

Happy New Ears

All is well with LJ's ear tube surgery.  We started the day at 5:30am and we got home by 12pm!  My dear, sweet friends:  Thank you thank you thank you for all your good thoughts and energy.  They worked!!  I asked LJ if his ears felt much better and he emphatically signed "Y-E-S"!  And as always, thank you to the doctors and nurses who made it such a short and sweet procedure...for all your hard work, we are so appreciative!  Now I'm off to snuggle with a happy camper.

Cannot Wait For Surgery Tomorrow

Big Bro Starting a Snow Ball Fight on Christmas Day

Annie the Wonder Dog!

LJ and Didi Form the Perfect Snow Ball

Happy New Year! May this be your year!






 
For the last month, our peanut has completed two full courses of amoxicillin and one full course of augmentin.  The amount of disgustingness coming out LJ's ears is the most in the history of ever; I feel like we've been to the doctor every week!  We have had little benefit from any of these antibiotics.  You see, he's lost one ear tube and the other one is dislodged but its in the wrong spot and too deep to extract in an office visit. We tried to get the procedure to extract and place two new tubes scheduled for two weeks ago.  Unfortunately we didn't get medical clearance due to a respiratory infection that LJ had.  So here we are, two weeks later. Poor guy is ready for a decent night's sleep and some comfortable new ear tubes.

I never thought I'd say "I'm excited for surgery!"  But in this case I will be relieved tomorrow.  We've got some ongoing eye issues as well, but I'll save that for another post (that will be another surgery separate from tomorrow's).  I'm holding hands with fear and bravery nonetheless.  The unpredictable nature of anesthesia always scares me and there's nothing worse then seeing your baby taken back to the OR.  Maybe on second thought, there is something worse.  Getting taken back to the recovery room when you see your baby for the first time afterward all hooked up to IV's and beeping monitors.  Please send you healing, positive thoughts our way.

{photography with red portrait} capturing big brother

We're celebrating Nate today.  Another trip around the sun. My little baby is 7!  The awesome, amazing, thoughtful, patient, beautiful Anna took Nate's birthday photos last week when it was a good bit warmer than usual.  I cannot decide which one I like the best, as they are all so fantastic.  Thank you Anna!

Happy Birthday to my big, little man!  You are the best big brother Lewis could ever have.  You make your Dad and I so proud.  You are so thoughtful & sensitive and you have the sweetest soul.  Oh, how I love to watch you sleep, all cozy in the layers of pillows and blankets.  I love to listen to your laughter as you experience magic and joy.  There is something so delightful when you still allow me to gently hold your hand as we cross the street heading toward the bus stop.  I love when I'm doing the laundry I find all the little trinkets you've stashed away in your pockets.  I love how you always get a dab of cookie, milkshake, toothpaste or whatever, near the curl of your mouth when you eat with gusto.  I love how you can talk a mile a minute.  I love all of it and ten times more.

I wish for you that when you see yourself, you see all the beauty that those who love you see.  I wish that all your dreams come true.

Hippo Birfday Deer Mommy

It's my party and I'll cry if I want to.  The good kind of tears.  This morning I awoke to the best gifts my littles could have ever given me.  Nate brought me breakfast in bed.  He piled a sky high mound of raisins, sitting next to it was a banana and a glass of apple cider accompanied by his hand-made birthday cards.  He exclaimed, "Here's your breakfast mommy.  Gluten free!  Happy birthday!"

And then when I went in to get the big, little man up and ready for pre-school, he tried to say "Happy Birthday Mommy!"  Today is awesome!!

Hot Brown

from Spoon Fork Bacon

In the spirit of Thanksgiving...here's a recipe I pinned earlier in the month in anticipation for all that leftover turkey goodness;)  

LJ and Nate's grandparents, Nanny and Babu are coming for the holiday.  (other grandparents, Didi and Bop are also coming:)   We're all very excited.  Feeling grateful for having these special moments with my family.  Feeling thankful for all the hours my mom stood in the kitchen lovingly preparing our family's favorite dishes and holiday traditions.  Wish I could go back and hug my mom's younger self now that I have my own wee ones.  And since it's Thanksgiving, I'm grateful for all of you friends who have showered us with support over the years.  Who have sent encouraging words or ideas for new therapies or procedures or that just-right pick me up when I needed it.  Those of you who have followed the blog so that my stories can be shared. I'm thankful that all we're dealing with, health-wise this holiday, is Lew's ear infection (ear tubes fell out. boo!) and a potential urological procedure. I'm also thankful for not having to cook dinner tonight;) We're meeting friends and their family at a local Chinese restaurant for a traditional non-Thanksgiving pre-feast celebration:)

So far, I've made the mashed sweet potatoes using the last from our CSA farm share, a Butternut Squash Cheddar Bread Pudding (also the last from the farm share), a Pear Pie, and lastly a Dark Chocolate and Pumpkin Cheesecake ala Marcel Desaulniers for our Thanksgiving day feast. Seriously, the latter might change your life.  Josh has made the cornbread-sausage stuffing and is on deck for roasting the turkey and making the gravy.  Oh, and Herb and Cheese Popovers.  We're enjoying cooking.  And thinking about cooking.  Come on over those of you who need a place to celebrate!

Flaky-Pear-Pie Recipe from Food and Wine

Dark Chocolate and Pumpkin Cheesecake 

Planning a post-holiday walk-off with my cousins' Nazlee and James, their kiddos, and my Aunt J and Uncle H!  We're having lots of family togetherness over here.  Lots of good food.  Lots of good times. Lots of good conversations.

Thankful for so much this year.  Lots of little things that add up to a big difference.  Just last weekend, LJ's new gait trainer arrived and he spent two hours walking in it. He slept well that night;)  One of the other things I am so happy about is Lewis' increased communication.  Just this week he has started a new gesture/adapted sign. "I don't know".  Ask him if he knows what's for dinner tonight, and he'll sign I don't know.  The sign for "know" touches the side of his forehead with the tips of his fingers and shakes out the flat hand and away from his face and then palms face up toward the sky.  I don't know. Ask him what's for dinner tomorrow and he'll sign "turkey", the letter "g" sign touches underneath his neck for gobble, gobble, you-know-what.

This day, Thanksgiving, brings up so much for me. Especially my fears for LJ's well-being...that he not suffer, that he not face too many challenges, that he be accepted, that he not be alone.  Wishing that I had some control over the road that lay ahead.  And also, having spent so much time in hospitals and doctors' offices, knowing that there are so many kids that have to overcome so much adversity.  Give your loved ones a tight, tight hug.  Be thankful for their health.  For now, I am just trying my own advice to just breathe deeply.  Just stay in this moment right now.

May you all have a wonderful holiday.  May you savor more everyday moments.  May you all find, peace, happiness and acceptance.  May you dance like no one is watching! (Had to throw that last one in there, honoring my little Nate!  He's been coming up with some fabulous dance routines...one of which was only just recently discovered...recorded... on LJ's iPad...the new iPad...the one with a built-in camera...that Nate figured out how to take videos of himself with his song of choice playing on the older, work iPad in the background.  HILARIOUS. )

Hot Brown Sandwich
Makes 4

Ingredients:
mornay sauce:
2 tablespoons butter, unsalted
2 tablespoons all purpose flour
1 cup whole milk
1/2 cup medium cheddar cheese, shredded
1/2 cup sharp cheddar cheese, shredded
1/4 cup fontina cheese, shredded
1 teaspoon garlic powder
1/2 teaspoon dry mustard
salt and pepper to taste

4 slices sourdough bread, lightly toasted
1 lb roasted turkey breast, thinly sliced
6 rashers bacon, cooked and crumbled
black pepper to taste

1. Preheat broiler on high.
2. For mornay sauce: Place butter into a small sauce pan and melt over medium heat. Sprinkle flour over butter and whisk together. Continue to whisk for 2 to 3 minutes, to cook out the raw flour taste. While whisking add the milk until fully incorporated, ensuring no lumps have formed. Using a wooden spoon stir in the cheese until well blended followed be the remaining ingredients. Season with salt and pepper and cook for 1 minute. Remove from heat and set aside until ready to use.
3. Place sourdough slices onto a baking sheet and top each with 4 ounces of turkey.
4. Top each sandwich with a generous ladle of mornay sauce and top with a sprinkle of bacon (you can serve now if you wish). Place the baking sheet in the oven and broil each sandwich for 1-2 minutes. Top with freshly cracked black pepper and serve.

Potty Fairies Don't Exist

At least this time around.  Apologies in advance.  Feel free to skip this post if potty talk doesn't interest you.  When Nate was potty training, we tried to play a game, "aim for the Cheerio". (Yes, we were silly enough to have floating cheerios in our toilet bowl). Then we tried the M&M thing. A candy bribe for each time there was a success.  Neither game must have been enough incentive though.  One M&M for each time he produced? He was over it.  But then the Potty Fairy showed up on the scene. At almost 4.5 years old, he was fully potty trained.  The Potty Fairy was similar to a Tooth Fairy.  Instead of money Nate got a small prize, like a match box car or a board book.  Mostly whatever I could find from the dollar store since it was such a long process;)

Fun letter to Nate from one of the Potty Fairies....

We weren't sure whether LJ would have either the strength to hold himself up long enough or the muscle awareness/control to work on potty training.  (Let alone whether we needed to enlist the Potty Fairy).  Bring it on cerebral palsy!  I have it on good word the Potty Fairy would have gladly delivered treats as success demanded.  However, he did it!!  He is using a plain, regular ole potty seat with handles on it.  When he feels he needs to be taken, he uses his left hand to sign potty.  The sign is the letter "p" shaken from side to side.  We help him get on and off the seat and he waves us out of the bathroom to take care of business.  And the thing that gave him enough desire to use the potty?  This beautifully crafted stamp chart.  1 for Pee.  2 for Poo. (Thank you Anna!)  No glitter glue, no candy, no bells, no whistles.  Just the desire to be like his peers at school and his big brother.

LJ is potty trained for the most part!  We've had a few accidents here and there, but its usually if we haven't planned our outings well enough.  He still wears a pull-up at night, but I am just so proud of him.  He's been coming home dry from school for the past month now.  His teacher and Bop are now working together to engineer something for the bathroom at school to prop him up while at the same time using his only functional hand to pull up his pants independently.  There's a grab bar already, but the problem is LJ only can use one hand.  No small task when his tone frequently causes him to lose his balance and he can't stand on his own.  If anyone knows of something like this that already exists, it would be great to not have to re-invent the wheel.

I'm so ecstatic not to be lugging a million pull-ups along with me every time we go out.  Potty fairies, potty charts, and big-boy pants....we are now a diaper-free household.

{photography with red portrait} capturing the bday boy

There are probably 365 reasons (if not more) I'm grateful for all the love and support Anna shows our family.  Anna is our caregiver & she's affectionately called "Nona" around here.  Well, she and her business partners own Red Portrait, a photography studio in Alexandria.  Ever talented, so passionate and the most beautiful person inside and out.  Well, she gifted us a gift beyond measure by coming to work on LJ's actual birthday and taking him out to do a surprise birthday photo shoot!!!  Here are some of the moments she captured.  Just brilliant.  I am captivated.  Words cannot begin to thank you enough Anna!  You have been such a blessing to us and you have impacted LJ beyond measure.

Balance and Other Matters

Wow, I have to apologize for the long time since I've posted a blog entry.  Why wait to live life right?  We're living it now.  Let me reintroduce ourselves and give the LJ fan club a teeny, tiny update on the progress and challenges we've faced this past month. While I feel like I might be juggling most times, I have come to realize I am really, really juggling all of the time. Life is all about the art of a balancing act...

With the start of school for both boys..... new routines have taken shape (I can thankfully say this finally).  For me, I've also squeezed in some additional yoga teaching which I am still absolutely loving.  I have so much deep gratitude for all that this opportunity has afforded me- more awareness, appreciation, stillness, presence and reflection.  There is almost no end to the positive things. 

Still, some things remain frustrating.  We're still fighting with our insurance companies over one thing or another- from picking an occupational therapist that is not 15 miles from our home and also that is handicapped accessible...to payment for the power wheelchair which we finally got at the end of the last school year.  One thing after another.  { So side bar here, if you live in the metro area and take your child to Children's National Medical Center for therapy, one word of warning.  They can discharge your kiddo from therapy even if their goals have not been met; on account of their long, long wait list!  It's crazy to me.  Anywhoo, that's the reason for trying to find an acceptable alternative to the pediatric OT situation }  Doctor's appointments to therapy sessions to my own doctor's appointments followed by a rather large speeding ticket ($200=lead foot) in order to get there to said appointment on time in DC rush hour.  Ouch, that hurts!

The motorized chair is coming along.  Conflict enters the equation again though.  Are we doing the wrong thing when we promote LJ's use of the power chair?  We feel torn that we are not working harder on his gait trainer and walking abilities.  We sometimes feel that the incentives are not inline.  Nonetheless, LJ is enjoying the chair very much!  In typical toddler fashion he doesn't listen when we tell him to stop, danger might be looming.  He is a dare devil, often heading straight for the steps despite a ramp being several feet away.  His left hand is the dominant hand so the joystick to steer the chair is on the left side.  LJ also primarily signs to us with his left hand, so that makes for lots of stopping and starting.  We also got a new articulating arm extender gizmo that connects the iPad to the chair.  Suffice it to say there is a lot going on with the wheelchair and it takes a very long time just to get from the school exit to the car, with all the signing, and attempts to self-regulate the chair speed (LJ has learned how to use his pointer finger to switch the chair speed from low to high).  I will post a video soon but this teeny, tiny post is not so teeny, tiny.

Right arm/hand mobility:  We are still trying to resolve his right arm tension and since the DMO (dynamic movement orthotic) glove was not successful we've recently gotten a splint for his right elbow to stay extended.  We chose cast material over splint material since little Lew is a bit of Houdini and gets out of every splint that's ever been made for him.  He was given a color choice so he picked blue and promptly came home and had good friends Anna, Nate and Hannah sign his cast.  Still doesn't seem to do the trick at least from a therapeutic sense. Too much fisting is still going on with it ...he's supposed to wear it at night but its a full-on cast...don't see that happening in our future. 

Mobility/gait:  Rt foot is turning out onto the outside edge when he walks with assistance... we recently had his foot orthotics adjusted and he walks better if he wears them.  His hamstrings are very tight too.  Who knows, perhaps LJ had a growth spurt setting off the change in his weight bearing, but we're keeping a close eye on him.  We've submitted a letter of medical necessity to our insurance company appealing for a new walker.  Hopefully we should get it approved.  If so we'll be ordering LJ's new gait trainer, a "Mustang".  Why are all gait trainers named after animals?

Good fun:  We had a one night sleepover with Nanny and Babu so Josh and I could go to a wedding overnight in NYC.  I felt kind of guilty when I was away, thinking about how I shouldn't have left the kids on such a busy weekend...but it was so nice to relax with Josh on the train, take walks window shopping in the city and eating good eats.  Thank you so much to the extraordinary Anna and Caroline for alternating shifts during our absence to hold down the fort.  And as always to Didi and Bop for all their helpful assistance with pick ups and drop offs.  Here is one of the activities Nanny did with Play Food.  LJ and Anna's project are the eggplant penguins...Nate's is the the monster truck made from green peppers.

Communication program PQ2Go:  Oh! Somehow, very inexplicably, it was deleted on our weekend away.  No idea what happened to our back up copy...but long story short, LJ was frustrated about getting a thought across and I could not figure it out.  I tried to resort to PQ2Go only not so fast.  It was completely gone.  After much frustration trying to find it, contemplating perhaps rebuilding it, or maybe see if we could copy the school's PQ2Go version back onto ours.  Two days later, the lovely Bridgid from school was able to sync up the school's version of LJ's customized communication. AWESOME. 

And a major milestone- Lewis turned 4 today! We had a bowling party for his class friends and friends from outside of school.  Uncle Jon and MJ (Josh's uncle and aunt) were visiting from Massachusetts so they got to participate which was good fun.  I'm not sure who had a bigger blast.  The adults or the kids.  I got a strike but it was only on account of the bumper guards!

Nate's newfound love is fishing... Here's evidence in his latest art project (not for school.. but just hunkered down at his desk).

He's had lots of soccer games and birthday parties this month.  Yesterday I chaperoned his class field trip to the fire station.  It was awesome to see such inquisitive, polite kids.  One boy asked what the firemen used the ax for and the man replied, "if the fire's getting really hot, we chop a hole in the side of the house to let the heat escape." The boy responded with another question, "and then who puts the house back together?"  Hah, that's someone else's job.  All the adults had a good chuckle.  Oddly enough (or maybe not), Nate was most impressed by the ambulance.  He told us he liked the stretcher part that hooked onto the back of the ambulance and had a hydraulic lift to move it up and down.

Annie is adjusting well to living amidst the chaos.  Nate just adores her and I love watching the two play.  He gives her giant hugs when he gets home from school and Nate has also enjoyed playing tug of war with Annie and her rope toy.  Most often Nate follows Annie around the house trying to get her to obey his commands.  Or he winds up laughing so hard he falls over when Annie gets hyper after her walks and tears from one end of the house to another.  And that's the current news by us.  Hope you are all doing well. I'm going to sign off as the utility company is doing some work on the transformer box & I've just been informed that I will lose power for the next three hours.

Waiting for the Bus

Nate's first day of First Grade (he has a locker! when did he get so big?) and LJ's first day of preschool (that's his new power chair...which he showed the teachers how to put in drive!). No tears were shed.  It was a good first day for both of them!

We've Acquired a New (Furry) Family Member

All boys need a buddy and our house had been far too quiet these past few months.  This is Annie, Nate's new pup.  She's a one year old, Whippet, Terrior, Hound, Mix (a dog of diverse heritage, Josh says, not a mut). I'm falling in love with her as we all are.  She is a wiggle worm, goof ball and also a love bug. She comes to us via Texas where she was taken in by a friend's mom.  Our friend and her husband as fate would have it, own a new, local company called Dog Gone Tired and have been raising Annie in her adolescence for the past several months. For any Arlingtonians, they do dog obedience, dog walking and even dog grooming! If you have a dog, call them!

We're so excited for all the fun times to come.  In other good news, we're still working on getting LJ's service dog.  But that is in the works and will take about another year.  More pupdates to come!  Until then, I will try to articulate the bond and love that Nate seems to have instantly cultivated with Annie.  On their neighborhood walk tonight, Nate had the leash wrapped around his waist and Annie was right up next to his side.  They were several yards ahead of us and clearly were old, good friends.

Inspiring Me Today

Words don't come easily.  Lewis continues to work so hard in speech therapy.  A few weeks ago, he reduced me to tears when he approximated the words and I had wished and held out hope to hear someday. And it happened.  Out of the blue.  We were just hanging out at home playing with his toys.

"aaayyy. PAUSE. uuuhhh. PAUSE. ooooo"

I love you.

Sweet, sweet music to my ears. Three words and they brought tears to my eyes.  Still does each time he tries to perfect the sounds and vocalizations of "I love you." And he's been practicing every day.  My heart is so happy.

He's working hard at other words too, like "hi", "eat", "on", "up", "belly", "ear", "eye" and "arm".  But clearly the I love you's are the ones that make us feel so wonderful.

On Happiness at HHI