Home Sweet Home

We're home.  Ear tubes were successfully replaced!  Dr N said it was a good thing because there was a lot of fluid in both ears and he was even able to reuse one of the former openings instead of making a new incision. Not sure if that makes sense but I'm not really functioning on all cylinders right now. Thanks Didi for your help this morning- I know it was much too early for you.  Noodles is sleeping in his big-boy bed as I write this! I'm off to take a nap : )

Update: LJ has been doing great and seems very happy now that his "ears" were turned back on. Here's photographic proof:

Cherry Blossom Kite Festival

So it's been two years since we last visited the kite festival.  It is interesting to go back and look at my blog post from exactly two years ago today here.  Having LJ's wheelchair on the national mall today made for a much, much smoother solo adventure without any adult helpers.  My heart and back don't ache as much this time around!  It was a very chilly day today, but we enjoyed a nice hot chocolate down by the tidal basin.  Yum.  Both kiddos were happy campers...and the cherry blossoms were spectacular.

Quote of the Day

" I have learned that people will forget what you said,
   People will forget what you did,
   But people will never forget how you made them feel. "

                                :: Maya Angelou ::

Self-Serve

After the library today, we had an adventure to Toby's Ice Cream parlor.  LJ was smitten with the mango-orange sorbet! Happy weekend everyone.

If you want to make god laugh

"If you want to make God laugh, tell him about your plans."
woody allen

Spring

Our Dogwood is blooming as well as the Japanese Maple!  Don't ya just love allergy season?

Starting to Bloom

The trees and plants are all starting to bloom here.  I love the winter but I am also ready for Springtime!  Changes are a happening.  For one, Noodles has moved out of his crib and has a new big-boy bed.  I am happy to report that the first night sleeping in it only resulted in waking up once at 1am.  One of LJ's ear tubes also fell out, so we are scheduled to have that replaced on Tuesday.  It should be a relatively quick procedure...the only downside is that he will be having anesthesia yet again.  Ugh. And since Noodles got new digs, so did Nate!  Nate is now the super, proud big boy with a new-to-us bunk bed (Thanks D!).  He loves the top bunk. "The upstairs bed is his favorite part because it's bigger then the ceiling!"  More pictures to come.


Didi just finished a master sewing project. Megan ( LJ's physical therapist) dropped off a harness and was wondering if we could get Didi's help making something similar. Apparently this version is no longer available at retail in the US. It is used to help kiddos walk and it looks, more or less, like a reinforced onesie with long loops coming off each shoulder. It allows the parent to stand up straight and use the straps to help hold the kid upright. Its a much quicker get up than putting LJ into his gait trainer especially if its gonna be for just a short time.  Now we have one with adjustable straps for either Josh or me to use.  Plus now Megan has one!!

Didi did a fantastic job and Noodles got to try them out this weekend. He and his parentals are very pleased. I think Didi could go into business with the demand for these adapted-type solutions for everyday problems in the life of a special needs child.

And completely unrelated, here is a picture if LJ with Emily at Monkey Business.  Its a music and movement class with lots of typically developing kiddos around LJ's age.

Courage

" Courage is like- its a habitus, a habit, a virtue: You get it by courageous acts. Its like you learn to swim by swimming. You learn courage by couraging. "
                                                        Mary Daly

Grub

LJ at Hungry Hippos with friends, G and Tracy_March 11, 2011 (29 months) from Jenn S on Vimeo.

Food picnic at therapy today included strawberries, orange wedges, a peanut granola bar, veggie straws and goat cheese crumbles. Lew did great- he was ready to dive right in even before our friend, G, arrived.  It was bittersweet today, since we have to take a break from Hungry Hippos for a little while.  The reason is because the tube whisperer, Markus, is coming to help Jeni wean LJ from his feeding tube.  He'll be here April 7th for two weeks!

So Markus is coming. Why am I so scared? Propelled by an uneasy present, the future is once again storming in on me. Will our son ever eat (truly eat) pizza, mac n cheese, tater tots, french fries, hamburgers, chocolate chip cookies, dumplings, sushi or roasted chicken? I feel sad for the months and years he's missed sharing any of his brother's favorite foods and all those similar food experiences.  The cute little play "Food Face" plates I bought are missing all their facial hair, bad hairdos and eye patches!  To us, our kitchen and dining room are our home.  We're "foodies"- we like to cook and we love to eat almost anything (except red peppers) gourmand. And thus my dilemma. I'm really trying to reframe our story and have a positive attitude without being obsessed with food. It's obviously about the food....but its also about the fun...and the enjoyment.

and when you're up you're up and when you're down you're down
and when you're only half way up you're neither up nor down

That's why I'm scared. I have no control. I cannot force him to eat spaghetti, garlic bread, or hot dogs nor pancakes drenched in syrup nor can I force him to drink a juice box, hot chocolate or milk. These are such normal things that I cannot have, he cannot have. I want each morsel of food to go in his little mouth. I want to explain to him where the food came from. I want to say "three more bites, and then you can have ice cream."  Or when he gets sick, I want to be able to give him his children's Tylenol in that cute little plastic dosing cup (or better yet, homemade chicken noodle soup).  I want to hear him nagging me in the cereal aisle for just one box of Fruity Loops puhleeeeeze.  But I can't, not without a lot of hard work.  And I like hard work.  In fact, I like to work and I like a good challenge. You see, I have hope.  I'm just afraid that it might not work and what will happen then? Let Round Two Begin. We'll have to wait and see.

Down with O-T-T, OT

(Yeah, you know me...sing it in your head)

LJ with Emily at OT this week. He's using a trapeze to open up that right hand.

Dear Canyon Ranch,

I just returned from a girl's weekend with my sweet friend, Alicia.  This weekend was the first time I was ever away from my family since our baby Lewis was born.  I've had Nate dates and a trip to CA with just LJ, but never all by myself!  Alicia and I haven't laughed as hard as we did this weekend probably since we were traveling abroad during college.  I found it to be the most relaxing and rewarding way to recharge my batteries-sort of a detox of my body and mind. I loved it. I want to have a standing reservation please?

And in the process I have found a new love in life.  It's called Zumba.  Canyon Ranch describes it as a Latin-inspired international dance fitness class that is dynamic, exciting, fun and effective.  I was smiling so much during that class my cheeks just about fell off.  It didn't matter that my arms and legs were completely incapable of following the instructors' lead.  The music was awesome and you are having so much fun you never even realize you're actually working out! You have to have a sense of humor- that's the only prerequisite for the class. Like when the only brave male in the class got randomly dry-humped during the salsa by the instructor.  Oh and there's actually a move called "Jellyfish Arms". I went two days in a row and was bummed I'd have to miss the third in order to catch my flight.  I am going to be practicing my dance moves as soon as my Zumba cd arrives home!

We relaxed by the fire, ate many fun meals, took Vinyasa Flow yoga, Restorative yoga, played tennis, took a Rock n Bosu class (my quads and hamstrings are still sore) , had facials, acupuncture and a hot stone massage. I napped without any knees in my back and never had to get up out of bed to walk the dog.  Alicia and I had many a conversation about this or that going on with our families- always with a listening ear.  While I was waiting to have my acupuncture I ran across a lovely quote that I wanted to share:

Hope is the companion of power and the 
mother of success for those of us 
who hope strongest have within us a gift of miracles.  Sydney Bremer

True friendship is beautiful and inspiring. I have learned to be more flexible this trip.  I have learned ways to reduce stress and exhaustion this trip.  I give myself permission to do things for me.
DO LESS
REST MORE
STOP PUSHING

I am happy to report that my family all survived their "Man Weekend" without the Queen of the House and were none the worse for wear.