Be Still My Heart

I will never again take for granted the luxury of being able to speak easily and verbally what is on my mind.  It tears me apart that LJ cannot speak.  I tear up sometimes because I know that Noodles is frustrated beyond belief.  There is an eminent fear that he will be misunderstood and most of all unheard.  He has a definite opinion about what he wants to do, which food he wants to eat, which book to read or which clothes he wants to wear.  He is becoming more proficient with his iPad equipped with Proloquo2go but has not shown quick enough progress to ease the worry.  If something is too loud he expresses his displeasure by crying.  If I leave the room and he is upset, again, he voices his discontent by crying.  Noodles understands but he cannot respond.  Clearly, my achingly, beautiful child is a smart kiddo.  He's a hard worker yet his muscles give up and I love him and I ache for him.  And I feel guilty.  

Most of the time I can read his signs or movements pretty well.  Sometimes, though, he gets mad and can't muster a sound so he bucks backward and arches his back or throws himself forward in his wheelchair.  He can do some modified signs, but sometimes his lips move and there's no sound.  He watches our lips and tries to form the shape with his mouth only to come up empty-handed.  If we could just find a way to tap into his thoughts and desires...I listen with my heart and I am ashamed that I am inept at translating his cues but I still fantasize about how the words will sound.

That's where apraxia comes in.  It's entire diagnosis name is "childhood apraxia of speech" or CAS.  You can read the full NIH description for apraxia here.  But the short version is this: tell tale signs of apraxia are faulty speech motor planning and programming.  It is strongly based on neurological deficits or traumatic injury. LJ had major damage to his basal ganglia at birth, not that I know how to read the MRI's, but that's what the neurologist told us.  The basal ganglia is most notably the area in which people with Parkinson's disease lose the control of their bodily movements...just one of several neurological conditions that you may have heard about in celebrity news (read Michael J Fox and Mohammed Ali).  Unrelated to Parkinsons but no foreigner to medicine, Robert and Lynn Koegel are psychologists at UCSB (shout out to Uncle H!). They are distinguished clinicians and scientists who have done extensive research working with autistic children and are experts in helping children learn to speak. Five seems to be the magic age at which, if children will be able to speak, will have a much higher rate of success in the mainstream.  

Practice, practice and more practice.  We have two more years before we age out.  We are engaged in intensive speech therapy and have been since we began services through our early intervention program when LJ was 4 months old.  LJ has 4 hours per week of speech therapy with a PROMPT certified speech and language pathologist. He also has had countless hours of homework practiced in the home, at school, in other therapy sessions, in the grocery store and in everyday life.  I have sat on the other side of the two-way mirror while Lewis tries and tries as hard as he can to do what the SLP asks of him to no avail.  I have broken down in tears.

So as you can tell, I have been feeling a bit down.  But then today LJ's amazing speech therapist, Danielle, wrote me an email that quickly cheered me up."Also....last week...I forgot to tell you.  I was PROMPTing a word on him ...I think "up".  I did it several times to show him how.  He put his hand on my hand and pushed it away while nodding his head no.  Then spontaneously said "me".  Then he attempted to produce the word by himself. That was pretty cool!"

And that was indeed pretty cool.  In other news, the boys started camp on Monday.  Each are off to a great start- albeit exhausted by evening's onset.  Full days of water play, outdoors, sunshine, fresh air and making new friends.  While they're off gallivanting at camp, I've had a little free time on my hands to tackle some extra-curricular classes and feed my soul.  What is not to love?

Look Who's Cookin'

LJ is doing really well.  Markus, Jeni, Josh and I have all been doing the happy dance!  LJ gained weight from the last visit.  He's not quite gaining 5 grams a day as the nutritionist would like.  But he is up from 12.13 kg to 12.22 kg which roughly translates to 26.88 lbs.  On a regular growth chart this means he is in the 20%. We don't have to go back for six weeks.  In the meantime we will come up with a plan for further water reduction via gtube over the next week.

Big Blueberry Eyes_LJ Cookin' June 2011 from Jenn S on Vimeo.

Our Little CSA Harvest

School is out + our CSA farm share began a few weeks ago. This week's loot included blueberries, kale, scallions, scapes, broccoli, lettuce, cabbage, cucumbers, zucchini and squash. I've been using the Vitamix blender to get LJ's zucchini and squash all liquified so I can feed it to him.  Mikey likes it! I made some vinaigrette (same recipe as last year) for salads and marinades using the scapes. I've also made some pumpkin bread which LJ insists be dipped in applesauce but otherwise is able to eat it no problem.  I plan to make some blueberry muffins tomorrow!  I can't tell you what a tremendous emotion rushes over me when I realize LJ can experience and enjoy these summer nuances. Summer is fun now that he can have seasonal favorites like a popsicle, watermelon or lemonade.  Noodles loves to eat. That is a beautiful thing.

I'm loving every minute of it.  And guess what?  News flash:  LJ has learned to drink from a cup- its only about 1/2 ounce at each meal but it's a start.  He is only receiving 180 ml of water now via gtube to insure that he isn't dehydrated.  That's it, people, 180 ml.  That's down from 480 ml of water.  We've been most successful with water at this point, but we're slowly sneaking in some V8 Splash Fusion for extra kicks and giggles:) It's more challenging on the communication-front.  He grunts and makes some noise (and will not give up) until we realize that he wants a drink.

We play a fantastic game of charades at each meal time just to figure out what LJ prefers.  When he likes to eat, he automatically asks for more graham crackers and more applesauce...or cookies depending on his mood.  Drinks are so brand new that we are still trying to figure out which modified sign works best.  The sign for juice is fingers tapping the mouth gently or the letter "j" downward in the shape of a j.  LJ can sign "eat" no problem which is one hand placing the food in his mouth.  This is very, very close to the sign for water.  The sign for water is wiggling open fingers up and out from your mouth.  I've been trying to get LJ to use the sign for drink which is a simple. natural gesture for drink. His dystonia is too severe though, and he isn't able to complete these gestures even if it is trying with his functional, left hand and arm.

Hopefully he will be feeding & drinking 100% independently of his tube.  I'm in awe.

We have our weigh-in and check up at the GI office manana.  I'm a little nervous at the possible outcomes...but I am trying to remember something Jeni told me.  LJ is calling the shots- and it's important to remember that whatever weight he might be compared to...it is only the typical weight for his age and height.  LJ is far from typical; and he can't be pegged to a growth chart because it wasn't easy for him to jump over the tube weaning hurdle. We can't expect him to be his tube-fed weight; that just wasn't his norm...it was a consequence of being tube-fed whatever that allotted protocol prescribed. Oh, I really want things to go well so we can take out this button.  Think happy thoughts for us.

Still Climbin'

Mother to Son
Well, son, I'll tell you:
Life for me ain't been no crystal stair.
It's had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor—
Bare.
But all the time
I'se been a-climbin' on,
And reachin' landin's,
And turnin' corners,
And sometimes goin' in the dark
Where there ain't been no light.
So, boy, don't you turn back.
Don't you set down on the steps.
'Cause you finds it's kinder hard.
Don't you fall now—
For I'se still goin', honey,
I'se still climbin',
And life for me ain't been no crystal stair.

by Langston Hughes

Daddy-O

Dad-hood...well Josh gets all A's in our book. He practices CAYGO (Clean As You Go) when cooking, plays good and bad cop equally, tries to fix everything (with duct tape) and usually succeeds, is the most awesome teacher, loves Harry Potter as much as Nate, genuinely enjoys long car trips even with two whining toddlers, demonstrates a deep appreciation (well, almost) for his dear wife, never agrees to something without listening to what is being asked, says what he feels, can be humored with 5,000 piece Lego sets, laughs when we make a joke, makes life fun & is fiercely devoted.

Thank you Josh, you are a rock. Happy Father's Day!

Captain Personality

Pure Joy: Boat Pond in Central Park

Play with Your Food

Applesauce is no longer LJ's public enemy #1. He can't get enough of the stuff - as is the case with graham crackers. We're striving for this Bert and Ernie food creation. Isn't it awesome??

Reflections

Radhe radhe radhe bolo, radhe govinda bolo!

This is a sanskrit chant that talks about celebrating change, accepting that it will be awkward, and that something divine will result when the change is manifested. Life is busy especially now that it is the end of the school year for both boys and we head into summertime.

Nate had his camper orientation this weekend for a new day camp he's attending this summer. The pool has opened and while Nate still isn't ready to cannon ball off the high dive, he certainly has a new comfort level with swimming.   He and his friend visited their school where he will attend Kindergarten next year, and he got to see a Japanese anime movie with the big kids at a school event in the school's gym. Nate's soccer tournament is also this week.  His last tennis lesson is this week.  We're all kinds of excited for Nate's pre-K graduation this week. I never really thought I would be one of those people to put much stock into a preschool graduation.  Nate is ready for next year. He still holds my hand when we are in a busy parking lot. He allows me to be affectionate most of the time.  He's growing up fast, but he still lets me be mom.  But I am actually nervous that I may cry at the PK graduation.  I'm turning out to be lame.

Seriously though, I reflect back on how many things will and are changing for LJ too.  Megan, his PT, brought over two new posterior gait trainers for Noodle to try (see Vimeo below, please excuse my awful singing voice. You may want to mute it). Earlier last week he specifically requested Daddy to feed him- a much needed reprieve for Mama. It will also be LJ's last day at this preschool, the one Nate has gone to all along and the one most of LJ's classmates will still be attending next year. It's bittersweet.  As of September 1st, we will sadly say goodbye to many of the therapists we've had through early intervention since the week we got home from the NICU.  We will be going to a new school, making new friends, acclimating to new therapists and learning new things to help him achieve his milestones.  We have follow up appointments with LJ's Physiatrist, Ophthalmologist, Neurologist  & Pulmonologist as well.  His weight check and follow up with the Gastroenterologist is June 24th!  It would be nice if I could remember this "Radhe" chant when I forget to stop and enjoy the changes! I'd settle for things just to slow down for a little bit.

Encore Performance As Compared to August 2010 Show from Jenn S on Vimeo.

Two Little Pumpkins

Congratulations to Aunty J and Uncle J!!!  We couldn't be happier that Josh's sister and brother-in-law finally got to meet their twins today (after 48 hours of labor).  I wish we lived closer so I could lend a hand, clean the house and make some hot meals.  Can't wait to love on them too.  Sadly, they're not in the states which makes it a bit more challenging. Josh will be traveling soon to send our hugs and kisses.

There is still such a turbulence in me when babies are born- a yearning for the perfect birth story; a panic; funny minds that they are. My memory just cannot be erased and I reflect on the grief and terror of losing everything I had imagined for my boys. This insane, unknowable world still sheds tears twinkling behind my lids, tears of both sadness and joy. These babies are joined by a family that is so full of love, the foundation for any home, and we have all  been praying for their safe delivery ever since we found out about them. Happy birthday and welcome to the world.