The State of the Lewis

LJ has been much more interested in food lately.  He isn't really eating, per se, but he's gumming and sucking on a wide variety of things.  Lew has shown interest in Tostito's Hint of Lime Chips, Gerber Graduate's Apple Wagon Wheels, fig newtons, Milano cookies, pretzel crisps dipped in hummus, clementines, chocolate pudding, almond butter, pizza, french fries, dried strawberries and bananas, yogurt, goat cheese crumbles, cream cheese, marshmallows, Fontina cheese cubes, bread of any kind, frosted cookies, asparagus, sweet potatoes and even sushi (and our fair share of Cheerios).  Food picnics have been so much more laid back and productive (and very slobbery and messy :). He's also been sucking his thumb and eating his toes.

The botox injections have had mixed results. Noodles is now opening his right hand when you flex his wrist.  That pretty much rules out casting at this time. The splint is staying on for longer and longer periods of time...not sure if that's just because Noodles is resigned to it by now.  Another highlight this week: Kool-Aid play dough. We made orange-flavored play dough and used this activity as a therapy session- his right shoulder is looser now due to the botox and we were able to help him raise his arm and pour ingredients into the mixing bowl.  Our OT is also going to make LJ a weight bearing splint this coming Monday. It will hold his right hand open to assist with weight bearing- both stretching and strengthening the right hand muscles.


LJ had his preschool evaluation with the school developmental team for next year.  He completely surprised everyone when he was able to answers questions with his iPad and Proloquo2Go program.  Nothing too complicated but nonetheless when the team asked him to identify the picture of Daddy he answered with the picture of Josh.  He is accurately isolating his pointer finger and pointing out people like Nate, Tango and Emily.


Nate is doing well, like any five-year old, in turns endearing and exasperating. At times ignoring Josh and I; he goes ahead choosing what he will.  Though this morning was delicious.  He held Lewis up in a tripod sitting position, in the middle of the kitchen, making sure he didn't buck backward, and entertained him while I prepared the morning coffee and the boys' breakfast.  He was so proud of himself that his baby brother didn't cry on his watch and also that he was strong enough to handle LJ.

Tango is holding his own.  We are giving him IV fluids at home every other day and administering about 4 medications to help keep his creatinine levels under control.  He is anemic and still shakes, but his appetite has returned and for the most part he is behaving like his old, excitable self.  Hopefully this will last awhile. 

PQ2GO in the News

Empowerment...an Incredible Speaker

Some Shaving Cream...Hold the Mess

Things just keep on getting busier around here.  We might have to get Noodles right wrist and right hand casted. Serial casting has been found to provide patients with effective stretching when other methods do not post-botox.  You can read a Kennedy Krieger Institute article about it here. The botox doesn't seem to have helped- it may have made things worse. Noodles is really guarding his right arm and he is clenching his fist tighter than before. The OT at Children's made him a "resting splint" to wear when he is relaxing or sleeping. He didn't nap today as he was too busy working his way out of the splint!

Things should have opened up and we should have been seeing positive results after day 4; Its a mixed bag really.  The botox has at least helped his leg.  He has been enjoying practicing in his walker so much so that he even chose that activity over playing in a giant multi-purpose playroom at school on Tuesday.

Here's a photo of LJ at OT with the Children's therapist this week.  He's playing with shaving cream on a mirror (note how fisted the right hand still is). Yeah, he got messy. But at least he smelled nice and clean! We've increased all therapies in an effort to help maximize his progress. Twice a week OT, PT, ST, feeding therapy and aqua therapy (which Emily, who is kick-a$$, did all on her own today since I was over-committed).  Plus preschool, Hungry Hippos and Music Therapy and oh yeah, doggy fluid treatments involving needles and IV's (its TRUE love).  Four hours a day of therapy for the little nugget is too much. Fun fun fun! Does anyone wanna have group therapy with us soon?

My Heart Is Pinned to My Sleeve

I'm a romantic at heart.  I also wear my heart on my sleeve.  I'm a quick study.  It's easy to recognize the mood I'm in but I've learned something.  None of this matters.  I'm struck by the revelation that "I'm the lucky one." I grew up healthy and able-bodied.  I've traveled and made many friends along the way.  I gave birth to two sons.  These boys can't wait until I wake up each morning and they can press their noses to my neck and hug me. I've loved others and live for the delight of laughter and humility.  I'm smart and kind and loving. I've gotten cranky and pouted. I have heard my heart singing. I have laughed until I wet my pants. I love to be playful and optimistic. I've lived in the madness of hope and wonder. I've been stressed waiting for test results and I sit and watch and notice things...about my worry..I've taken chances and lost and won some.   Brenda Solomon (co-founder of a respite house here in VA) said about it being a crisis with no end in sight. It is one thing to deal with a crisis that you KNOW is only temporary but it is a completely different thing when there is NO light at the end of the tunnel because this is your life. I've learned to let go and come to terms with the journey of life. I'm learning.

My heart and world have been expanded beyond anything I ever thought or imagined.  Hope you are spending time with those you care about!

All Set

We're all set.  We had a long day but everyone is home and resting comfortably! Here's Emily with her "other boyfriend".  LJ did really well- he didn't need any versed (sedative) when he woke up.  It's too soon to tell how it is working but we get to start stretching him tomorrow. Thanks for all the well wishes.

Botox Day

We are trying to stay calm and not let worry get the best of us.  Botox. Anesthesia. Shots. LJ is scheduled for botox injections tomororw morning in his right pectoralis major, right biceps, right flexor carpi ulnaris, right flexor digitorum superficialis, right adductor pollicis brevis and right gastrocenemius muscles.  In layman's terms, that is a whole lot of botulism poison being shot into my son's pecs, biceps, muscles that bend the fingers, wrist, thumb and calf muscles. We found out while we were at water therapy today this one of his friends is also having this procedure done by the same surgeon right after LJ's tomorrow!  Waiting is the hardest part (oh yea...and also not being able to feed him anything after midnight tonight), but at least we we'll have a friend there to while away the time.

For those of you that never realized, botox has more noble causes then reducing wrinkle lines and de-sweating armpit glands.  It's used for cerebral palsy as well.  There are varying degrees of tone with cerebral palsy, commonly referred to as hypertonia and hypotonia. I heard Noodles' referred to as dystonia for the first time last week. Hypertonia means lots of extension and stiffening of the arms and legs (spasticity is usually associated with this).  Hypotonia means really weak, almost to the point of being floppy and not being able to hold ones head up.  Dystonia means that when your child focuses real hard on x task, those muscles go into extension and it takes a while for the child to break out of it.  Heartbreaking really.... as I have watched LJ become more easily frustrated these days when he is not able to complete a task or get his wants, needs and desires across because of his motor and communication difficulties.

Tone never fully goes away.  But we're hopeful parents wishing that this intervention can bring a little relief to our brave lil guy (and avoid future surgery or medication). Thankfully he won't remember the procedure!

Tango

It's kidney failure.  Tango is comfortably resting at the animal hospital right now.  We found out on Tuesday that he has kidney failure.  We knew something wasn't right when he was trembling, vomiting and had no appetite. So we called the vet, who came to our house, and she drew up the lab work and hauled it off.  She called the next day and came to the house again, this time bringing an IV bag of subcutaneous fluids, vitamin B drops and Pepcid. We gave Tango extra cuddles and let him sleep on our bed that night only to be awakened two or three times when he got sick.  We don't know what the cause is yet, its possible that its due to an infectious agent or a toxin and we're hopeful its one of those.  Anything else and it will be fatal.  Feeling sad right now.  I know I know.  It's just a dog thank goodness. I cannot help but worry.  I am heartbroken at the thought that my kids might not have their fierce protector for much longer or their goofy, sidekick to be a part of their life. And it felt so empty today when the doorbell rang and Tango wasn't there to bark at the visitor.

Update: Tango came home from the hospital this weekend!  The blood tests all came back and unfortunately it is chronic kidney failure. His blood levels are all elevated, the most tell-tale sign being the creatinine and blood urea nitrogen levels.  We have a crude dialysis thingy set up- I swear I should get an honorary nursing degree.  I learned how to insert the needle and get him some much needed fluids flowing from the IV bag which is also loaded with vitamin B to help replenish what he has lost from the renal failure. Along with fluids, he is eating three small meals a day of prescription dog food.  We are administering about 6 different medications throughout the day to help with the anemia and his nausea and we will have a follow-up blood test repeated on Thursday.  LJ's wonderful caregiver, Emily, spoiled him rotten today.  I returned home after LJ's therapy at Children's today to find that she bathed him and warmed him up in this sweater get up.

I think he looks cozy, don't you?

Wholeness

"Whatever wholeness we achieve requires enormous work, which is the effort of life;

and that work is never complete. "

----- Gary Saul Morson Prosaics: An Approach to the humanities

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.