Smiles n Spokes

It's here!  LJ's high-to-low chassis seat and frame for school arrived today.  There are still some missing pieces that were supposed to be ordered.  I'm waiting for their ETA but for now, the timing could not have been more perfect.  School starts in a week.  The school has a second frame so that when the actual wheelchair base arrives, LJ will eventually be able to take the entire fixture onto the school bus and they will have several different options for him. The wheelchair portion is compatible with the seat we just got, and  LJ will be able to work on self-propelling.

(Shh, don't tell Nate. )The first thing Noodles did when he sat in his new chair was saddle up to Nate's lego table and he gave it a good swipe!

Who Am I?

I believe this bears repeating...

Fair

Once upon a time, Emily and I took both boys to the fair.  We met with my brother and sister-in-law and their adorable baby, Parker.  We saw the baby piglets and baby cows in the 4-H building, we made turkey callers out of dixie cups and cocktail straws...but alas did not get the turkeys' attention and Nate had a mutant ninja turtle painted on his cheek.  Nate made a chia-head out of stockings and wheat grass seeds.  LJ had his hand painted with his on-again-off-again favorite, Elmo.  Parker promptly fell asleep in his stroller.

And then there were the rides.  Emily took Nate on a super fun ride.  She also took LJ on the aptly-named ride, Wiggle Wurm.  Emily is a such a wonderful caregiver.  She takes such good care of our family.  We have been blessed with her selfless acts of service, listening ear and she seems to always look outside her own needs to help out with the boys.  Case in point, promptly after the above ride with Nate, it was Emily who looked green and a little woozie; not Nate as we had expected.
 
And then there was the food.  Emily tried a giant turkey leg.  It could have fed a couple Vikings.  She walked around with it, brought the leftovers on the car ride and it still isn't finished as of today.  Nate cooled off with an Italian ice- sweetened with a most unnatural, artificially colored sugar water.  LJ got to try out a terriyaki chicken on a stick and some lemonade (one of his favorites!).  We narrowly avoided the fried butter, thank goodness.  Although I hear it is tasty. In hindsight maybe that would help LJ gain some much needed weight!

LJ getting Uncle Dan to escort/protect us through the fairgrounds

In lieu of cotton candy, Nate decided he wanted to play the ping-pong-in-a-fish-bowl game. No duck pond games for him. Lucky him!  We were guaranteed by the carnie that he would win something. Well, so no giant banana plush toy as a prize. It appeared to me that the lip of the bowl was too small to fit their ping pong balls, so we were the proud new owners of a consolation prize:  three betta fish.  Thank you very much (can you hear the sarcasm here).  And this is when it is not the story you think it is.  He fretted over them, naming each one Superman, Batman and Evil Robot.  He insisted that we needed to buy them a bigger tank other than the fish bowl we had. We settled for aquarium rainbow gravel.  He woke me up the first morning at 6am!@#$#$%% asking if it was time for him to feed them again.  Within the first 24 hours, two out of the three fish have gone on to better seas.  Nate was greatly saddened by this event & he may need therapy when he's older.

Hi Uncle Dan and Aunt Anne! We miss you and baby Parker.

City Slicker

LJ had therapeutic riding this morning.  He was not afraid to tell everyone how he'd rather be eating applesauce and graham crackers.  Ms. V, our therapist, had to review the schedule with him multiple times.   First ride Lee Roy the horse. Then snacktime. He got to feed this lovely 2,000 pound creature an apple at the end of his session.  Big horse, Lee Roy, was really a gentle giant though.  One of the exercises involved big yellow dice, that LJ would hold at midline with both hands and let drop to the ground.  Whatever number it landed on, was how many steps he and Lee Roy could advance farther. LJ had to practice some speech by trying to give Lee Roy the "walk on" command when it was time.  It really takes a lot of core strength, trunk control and neck control to keep from doing the head bob jello neck. His body, as you can see from the video, is trying to acclimate with each shift in weight from the horse's gait.  Interestingly enough, he can keep his balance when he wants to tell me the sign for "eat".  All 27 pounds of him...on a 2,000 pound animal.  It's incredible.

Back in the Saddle_LJ August 2011 from Jenn S on Vimeo.


City Slicker_LJ (almost 3) and Lee Roy August 2011 from Jenn S on Vimeo.
It's also been awhile since I checked in.  LJ had a weight check regarding his tube weaning.  Despite the feeling that he eats enthusiastically, he hasn't gained any weight in 6 weeks.  We're at a standstill at 12.22 kg and 91 cm.  It sort of makes sense, since he was always being force fed, I mean tube fed, whatever the prescribed bolus amount was whether or not he had a full-feeling.  I don't think he was ever at his natural weight. Another contributing factor is all his activity.  He is a squirmy worm.  He kicks a lot, he tries to wriggle out of my arms, he can fold himself over to touch his shoes, completely over his legs when seated in his wheelchair.  So zero weight gain leaves us needing to supplement his oral intake with 200 extra calories a day.  We've added extra butter, oil, protein powder, pediasure, avocadoes and the like to his list of preferred foods.  We'll have another weight check in 6 weeks.  We'll see.

We met with the neurologist.  The doctor feels like LJ's main focus should be therapy. No MRI at this point is going to yield any actionable information.  The area where LJ's brain suffered the most injury, is his basal ganglia.  Its hard to tell from it's location just how significant his body was impacted but there are so many signals going through this bundle that effect his nervous system.  We continue to intensify therapies and see whether he will have verbal output and the strength to walk or sit.  So, in a nutshell.  It wasn't a bad meeting.  Just wasn't the clarification I was hoping for.

We also met with a really awesome speech therapist/technology consultant.  She met LJ and I and worked with us on his iPad for communication.  We're trying to tap into helping him communicate easier and more effectively.  It was a productive meeting and she shared a lot of knowledge and cool cause and effect apps to work on with the lil man.  We're meeting again soon so I will devote an entire post to it later.

School starts soon.  We are still having meetings to discuss evaluations and do the early childhood intervention reviews before the transition to a new special needs program through the county. I'm trying to get a meeting to revise LJ's IEP for school.  We need to add things like oral feeding goals since at the time, he hadn't been weaned from the feeding tube.  Amongst many other things, we also need to allow for the assistive technology devices. I'm following up with the rehab equipment folks to check the status of the stander and chair we had fitted for LJ back in May.  And nope, it's still not in.  The orthotic body suit and glove to avoid another round of botox still isn't in either.  And so it goes, we wait.  We call.  We follow up.  We wait.  We are spent but we are fighters.  We are hopeful parents, grandparents, brothers and sisters, aunts, uncles and friends.  We are hopeful.

Words to Say What You Mean

Give sorrow words; the
grief that does not speak knits up the
over wrought heart
and bids it break.

:: William Shakespeare, Macbeth ::

Outtakes from Ithaca

We're playing catchup from an almost perfect weekend.  We had some sleep-aversions amongst the youngest family member & a bit more rainy weather than anticipated, but otherwise we all enjoyed spending quality time with our friends.  Here are some outtakes from the weekend's zip lines, happy hours, farmers market & lake fun.  LJ had a neurologist appointment today and I'll catch you up on that later- but in essence everything is going well.  Pictures for now.

It's That Time Again

It was just last week we were packing snacks and driving twelve hours straight through. Now we're packing and heading north, to the Finger Lakes. Another weekend with friends and family experiencing more summer fun. Sweet summer days filled with ripe, blueberry picking and hanging out by the bonfire roasting marshmallows. There is going to be a birthday party in the Children's Garden and a concert in Taughanock park and of course the want and need of some good chill time hanging by the lake. We'll also test all the eateries around Ithaca (LJ has to try the Lindsay and Shortstop- now that he is a fill-fledged eater it is wild to come back after a year of all that's happened.) & attempt to finish some crazy 1500 piece puzzle. That is happiness for ya. Strength is being gained in more areas then you could ever know.