Out and About This Morning

It took Josh over 7 hours to get home last night.  You can read more fun disaster stories from our area here. Did anyone else get trapped in gridlock?

Snow Day!!

No school or therapy today!!  Unfortunately nobody slept in. It's mostly just been sleeting. But we're expecting 5 - 10 inches in the DC area tonight so maybe we will get to have a lazy morning tomorrow.  Sleds? Check. Ice melt? Check. Shovel? Check. Snowbibs? Check.

We went to our ENT appointment earlier this week- Lew's ears are all better!  And he is definitely a lot less fussy. Luckily his ear tubes were both in the correct spot and doing their job.  Let's hope they stay that way!

Botox is next up for LJ.  Two weeks and counting.  Here's part of my worry: muscle atrophy. That and the actual anesthesia.  But here's some commentary from a physiatrist on the topic which reassured me some.
"I'll take a look. But on the surface it makes sense. Block some of the nerve signals to the muscle and it will get smaller. Obviously in general the goal is to improve strength and function. However, if one muscle is so tight (ie. hamstrings, calves) you never get the opportunity to strengthen the opposing muscle (ie. tibialis anterior, or quads). So you do end up sacrificing a little strength in the dominant muscle to hopefully get access to the weaker ones. And yes, it makes sense that research might be able to demonstrate atrophy. What that means exactly, who knows? Our goal is functional improvement, and if evening out opposing forces can't be done just by strengthening the weaker muscles, then "weakening" (and perhaps
atrophying) the stronger muscle is part of the strategy too."
How does one make the decision? It is a tough one.  I guess in the end we do the best we can with what information we have.  Time will tell.

Note: It's been no fun for Josh.  He left work at 5pm tonight and he still hasn't made it home.  Who knows what the deal is but he and the rest of the folks in the bar that gave up at 9:00 pm have made a pact to wait until things clear up.  Then hopefully everyone makes it home safe and sound.

Crunch Chomp Cheerios

Today we had a great food play session- including Nate as he was making soup with all the same ingredients in the sink just beside us. LJ didn't mind the texture of cheerios and he signed several times that he wanted more. He didn't swallow much but he tolerated it. He gagged once as you will see here in the video, but where that would have set him way back several months ago, he carried on and self-regulated right thru it. Today's menu involved crumbled goat cheese (very gourmet), strawberry jam, buttered noodles, Banilla yogurt ("banana-vanilla"...not his best friend), bread and vanilla soy milk (better than unflavored). Cheerios too.  He still doesn't have a pincer grasp, so I have to feed everything to him.


Chompin Cheerios_January 23, 2011 from Jenn S on Vimeo.

In other news, LJ's ears have been acting up. We went to the doctor on January 7th for lots of ear goop. There was so much discharge the doctor could only see one of his ear tubes. The doctor prescribed an antibiotic drop to put in his affected ear. It didn't work so we visited our pediatrician this past week and he got put on an oral antibiotic. Doctor Pediatrician couldn't see either ear tube. The med seems to have cleared up all the discharge but I don't know if the infection is cleared up yet. Lew is still super fussy and only wants to be held/carried around. No sitting will do. We have a follow up with the ENT tomorrow and they'll be able to look with a microscope to see if the tubes are in the proper place and perhaps they will also be able to get all the discharge sucked up.

Swagger Wagon

Life Rolls On

My little pumpkin's right hand is doing a lot better.  He is now able to open it on command more frequently. So we're still moving ahead with his botox injections- for his right hand, fingers, bicep, shoulder and calf.  We've been a little hesitant since it is essentially injecting a poison into his little body but I don't like the idea of withholding something that could potentially benefit him greatly.  Parents have seen varied results- sometimes it is a huge help and others haven't helped at all.  He's scheduled to have that procedure on February 9th.  Our hope is that with increased aqua therapy sessions and OT post-botox injections we may be able to help him learn to use those released muscles so he can function better, manipulate and hold things longer.  It is expected to wear off after 3-6 months so we'll have to re-assess at that point whether the progress is worth the risk of putting him under anesthesia that frequently.  Here's a short clip from his OT session this week (he's even sitting unassisted for about a minute before he collapses back).


LJ's New Frontiers_January 17, 2011 from Jenn S on Vimeo.

Great Grandma's Birthday

A beautiful woman and her handsome hubby, William, on their wedding 
day in Brooklyn December 3, 1938

It's my husband's grandma's birthday.  It's a huge milestone- she is 95!!!  Here's the cake I baked for her party this weekend. She has grand-kids that came from Winnipeg, nephews that came from NYC, friends from Vermont (who's daughter is a doctor in South Africa right now and you can read about it here) and relatives' well-wishes from all over.


















Even at her ripe young age, she has the will power to keep Kosher and watch what she eats.  She had a fish meal prepared for her so that she would be able to eat the dairy cake that she requested for her birthday bash (note: same one had by Nate on his 5th birthday)! She is also partial to black licorice, not red, and shares this preference with Nate : D

We are so, so grateful that our sons have the privilege of knowing her.  She has had a rich, rich life.  And she is the epitome of strength and determination.  Always one to ask how LJ's therapies are going, as well as the type of woman who listens to Nate's long-winded, crazy stories about his toys or school escapades, she also never lets her appearances rest.  She has been known to apply a coat of lipstick and get dressed in her best even if it was just the four of us coming over for dinner. But boy does she listen.  And if you sit with her long enough she will start to tell stories about growing up on a farm, how she met her husband and things her daughters did growing up.  Man is she passionate too- steadfast in her love for the Yankees even getting a big screen TV in her sitting room complete with the Deluxe ESPN baseball channel.

We are beyond lucky that we we have had this amazing woman in our lives.

Yet, as I sit here my heart aches for the Smith family and the Agin family.  I feel so sad and helpless.  Why is it so hard?  Why does my heart have to ponder the question why a 6 month old and a 5 year old never get to experience so many of life's joys? Will everything always be tainted with little tiny pieces of devastation?  There's just no explanation.  It has been a roller coaster for me to spend this weekend celebrating the long, awe-inspiring journey of a 95-year old AND the courageous girls' lives who battled their illnesses valiantly; their weary bodies here with us shorter than anyone would expect.  They were an inspiration to all.  And as we celebrate and are encouraged by such a wonderfully long life I will have attended two girls' funerals; please pray for these two families that need our love, support, and thoughts to strengthen them in their doubting as they grieve the immeasurable loss of losing their child. Life is imprinted on us forever. May they be surrounded by courage and love.

What I'm Loving Right Now

Weekend Goings On

Stacks at School

LJ adores school.  When we dropped Nate off at school yesterday LJ cried because he didn't get to go too. LJ's sweet teacher sent these pix (they speak for themselves) from school today.  He loves the game where Emily stacks blocks on top of another creating a tower and then he knocks them down. He's clearly surprised by the loud noise in that last shot. Sounds like a crowdpleaser to me!! Add to it a little throwing toys action and LJ's sweet teachers probably won't think he's so cute anymore....but to be serious folks, school has really been so good for him.

Ring Around the Nosy

This is a shot from PT with Megan today.  It is a cute game that you wear an elephant mask and try to scoop up your rings using your trunk.  LJ enjoyed himself!

1 :: 1 :: 11

Wishing you all a Happy New Year that brings lots of happy& healthy times for you and your family.  We are feeling refreshed after a relaxing week, albeit cold for Florida standards, of absolutely no obligations. The boys missed their daddy, but it was a beautiful thing to watch their eyes light up when he finally arrived in time for the holiday.  We rang in the new year last night with my parents and board games. Lots of wine, caviar and blini, good stone crabs, coconut cake and great fun but very low key. It was very relaxed and it couldn't have been more perfect.

Last year was full of amazing highs and lows.  Taking stock in what we've accomplished this year I am proud of not sweating the small stuff. Some of my hopes for 2010 have been realized and you never know where 2011 will take us. One of the wildest memories beyond my dreams was hearing LJ for the first time start to say "Ma-ma-ma" these past few weeks.  And watching Nate concentrate for hours to successfully put his Lego's together forming some Lego battleship masterpiece or another.  It melts my heart.  The big tube wean is going to be a real struggle at times.  There is nothing harder then standing by and watching your child who you love, hurt so bad or be frustrated beyond expression, while you stand around feeling helpless.  Yet we are remaining open to all the possibilities in the coming year- one in which we will find new rhythms and new successes to celebrate. I have even greater hope for what's to come. Thank you to everyone who has been so generous to us, and for all your support and inspiration.