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.
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