Food Diary, Day 10 Post Wean

LJ’s Food Diary 4/27/2011 to 5/2/11 to date (in chronological order)

Wednesday 4/27

• 180ML water, ¼ cap Miralax, 1 ml Polyvisol, ½  tsp Kids DHA Omega 3, Udo’s Choice Children’s Probiotic (different bullet signals tube feed)

Ø      2 Packets of  Quaker instant oatmeal mixed with 2% Milk (40% loss in LJ’s bib)

Ø      Sips of water by straw

Ø      3 New Morning Organic honey graham crackers with homemade Strawberry, Blueberry, Pear Smoothie (Fage plain Greek yogurt base)

Ø      ¼ Organic Banana

Ø      some Garden veggie straws

• 120ML water

Ø      ¼ avocado

Ø      ¼ packet Sprout Organic sweet peas (stage 1)

Ø      Taste of Egg Salad Sandwich

Ø      Sips of water

Ø      ¼ Banana

Ø      ½ Stonyfield YoBaby yogurt (portion is 4 oz) - strawberry

Ø      Taste of Pirates Booty

• 120 ML water

Ø      ¼ Organic Banana

Ø      1 tsp Sweet Potato Puree

Ø      1 tsp Pureed Avocado mixed with 1 tsp Mayonnaise

Ø      2 Tbsp Jif Creamy Peanut Butter

Ø      Strawberry, Blueberry, Pear Smoothie (Fage plain Greek yogurt base)

Ø      1 oz 2% Milk from Avent Bottle

Thursday 4/28

• 120ML water with ¼ cap Miralax, 1 ml Polyvisol, ½  tsp Kids DHA Omega 3, Udo’s Choice Children’s Probiotic

Ø      2 Packets of  Quaker instant oatmeal mixed with 2% Milk (40% loss in LJ’s bib)

Ø      3 New Morning Organic honey graham crackers with homemade Mango Banana Smoothie (Fage plain Greek yogurt base)

Ø      ½ piece Challah toast

• 120 ML water

Ø      1 To Go Packet of Jif Creamy Peanut Butter

Ø      2 Apple Slices

Ø      1 Nabisco Chocolate Covered Graham Cracker to Go Snack

Ø      2 Homemade Gingersnap Cookies

Ø      4 tsps Nutella on Bisco’s sugar wafers

Ø      2 Tbsps Jif Creamy Peanut Butter on ½ Banana

Ø      Apple juice sips

• 120ML water

Ø      2 tsps Sprout Organic Sweet Peas (stage 1)

Ø      2 tsps Sprout Organic Sweet Potatoes

Ø      4 New Morning Organic honey graham crackers with ½ Stonyfield YoBaby yogurt (portion is 4 oz) - peach

• 120 ML water

Friday 4/29

• 180ML water with ¼ cap Miralax, 1 tablet Centrum Kids Chewable Multivitamin, ½  tsp Kids DHA Omega 3, Udo’s Choice Children’s Probiotic

Ø      2 Packets of  Quaker instant oatmeal mixed with 2% Milk (30% loss in LJ’s bib)

Ø      ½ Organic Banana

Ø      4 New Morning Organic honey graham crackers with Homemade Fruit Smoothie

Ø      ½ Sandwich on Whole Wheat Bread- Jif Peanut Butter, Marshmallow Fluff and Organic Banana

Ø      2 oz Annie’s All Stars Pasta in Tomato Cheese Sauce mixed with finely diced white meat chicken

• 120 ML water

Ø      6 Tbsp peanut butter on New Morning honey graham crackers

Ø      1 Rice Krispie Treat

Ø      ½ Organic Banana

Ø      Small portion whipped cream

Ø      1 oz 2% Chocolate Milk from Avent Bottle

• 120-ML water

Saturday 4/30

• 180 ML water with ¼ cap Miralax, 1 tablet Centrum Kids Chewable Multivitamin, ½  tsp Kids DHA Omega 3, Udo’s Choice Children’s Probiotic

Ø      3 Stonewall Kitchen Cinnamon Apple Pancakes with Syrup

Ø      ½ Organic Banana

Ø      ½ Nature’s Valley Sweet/Salty Granola Bar

Ø      2 tsps Organic Unsweetened Mott’s Applesauce

Ø      6 tbsp Jif Creamy Peanut Butter on hoagie roll

Ø      ½ cup Chocolate Milkshake

Ø      2 Bisco Sugar Cookie Wafers

Ø      1 cup Pirate’s Booty

Ø      ½ cup Peanut butter play dough (edible playdough made with formula base)

• 180ML water

Ø      2 Homemade Ginger snap cookies

Ø      1 Meatball

Ø      2 tsps Sprout Organic Sweet Peas

Ø      1 tsps Sprout Ogranic Sweet Potatoes

Ø      2 Tbsps Homemade Strawberry, Blueberry Smoothie (Fage plain Greek yogurt )

Ø      1.5 tsps Haagen Daasz Vanilla Ice Cream

Ø      3 oz 2% Organic Chocolate Milk from Avent bottle

• 120ML water

Sunday 5/1

• 180 ML water with ¼ cap Miralax, 1 tablet Centrum Kids Chewable Multivitamin, ½  tsp Kids DHA Omega 3, Udo’s Choice Children’s Probiotic

Ø      2 Packets of  Quaker instant oatmeal mixed with 2% Milk (30% loss in LJ’s bib)

Ø      ½ Banana

Ø      2 Tbsps Jif Creamy Peanut Butter

Ø      ½ Stonyfield YoBaby yogurt (portion is 4 oz)- blueberry

Ø      1 Rice Krispie Treat

• 120 ML water

Ø      1 tsp Salmon Salad 9(made with Lemonaise)on Slice of Whole Wheat Toast

Ø      1 tsp Sprout Organic Carrots

Ø      1 tsp Sprout Organic Sweet Peas

Ø      ½ Organic Banana

• 120ML water

Ø      3 tsps Nutella with 6 Bisco Sugar Cookie Wafers

Ø      Sips of Apple Juice

Ø      1 tsp Stonyfield Yo Baby Yogurt- blueberry

Ø      3 tsps Nutella with 6 Bisco Sugar Cookie Wafers

Ø      Most of a Banana Baby frozen treat

Ø      1 Organic Whole Fruit Frozen Push Pop

• 120ML water
• 120 ML Pediasure

Monday 5/2

• 180 ML water with ¼ cap Miralax, 1 tablet Centrum Kids Chewable Multivitamin, ½  tsp Kids DHA Omega 3, Udo’s Choice Children’s Probiotic

Ø      1 Packet of  Quaker instant oatmeal mixed with 2% Milk and ½  Packet of Plum Organics Baby Food Blueberry Pear & Purple Carrot (30% loss in LJ’s bib)

Ø      2 oz Stonyfield Yo Baby Yogurt- blueberry

Ø      4 New Horizon Honey Graham Crackers

• 120 ML water

Ø      1 Sandwich on Whole Wheat Bread- Jif Peanut Butter, Marshmallow Fluff and Organic Banana and Sweet Potato

• 90 ML Pediasure

Ø      2 Homemade Chocolate Chip Cookies

Ø      ¼ Banana

Ø      1 oz 2% Milk

Everything is Better with Butter

Lately I haven't been able to post because LJ is a full-fledged eating machine, cookie monster, "peanut butter maniac" as Markus calls him.  All we do is wake up and eat. And lots and lots of laundry. I am lucky if I am able to shower to get all the food debris out of my hair.   As it is LJ takes about two bathes a day. 

Eating, Eating and More Eating at Liberty Tavern

 






















Despite LJ eating 24::7, he managed to lose 8 oz last week so we are trying to figure out how to maintain his wait.  Last night he wanted to drink from a bottle- he actually consumed 3 oz of milk!  Though it doesn't help that he has come down with a cold or allergies or something tonight, we don't know which. It's no fun trying to eat when you can't breathe out your nose! LJ is still interested in food he is just super finicky and only eating half of what he is given.  I hope we can get over it soon and continue the good work!  We have another weight check this Thursday so we will see how things go.  More soon.

Therapeutic Horse Riding

LJ started therapeutic horse riding today at Lift Me Up!

The flavor of the month for us is Therapeutic Horse Riding (also called Hippotherapy).

There are all sorts of clients at Lift Me Up! from wounded soldiers to people with Multiple Sclerosis.  See information about what it is touted to do for kiddos with cerebral palsy at this link NIH article here. LJ is kind of on the younger spectrum for their clients.  The goal for LJ is really just to encourage him to have fun with different kinds of therapy (plus its pretty empowering to be so high up on such a powerful, beautiful animal).  However, a huge perk of the therapy would be things like better core strength and balance, better rotation of his ankles and knees, utilizing both hands to grab hold of the handles, improved pelvic positioning and improved head control.

LJ got up twice on a gentle, old pony called Dakota.  His poor, sweet therapist Miss V got the crying treatment from LJ both times.  Though he was fine when he was just making friends with him, he did identify Dakota's ears, mouth and nose and he even tried to stroke his mane, the only thing on LJ's mind is food. He got up on Dakota two times but started to go into extension and the rest consisted of LJ telling anyone and everyone that he wanted to "go" and "eat" using his sign language. Meanwhile, Nate was terrorizing the poor barn kitties.  I think Noodles will start enjoying it more as the weeks go on and he gets more used to it.

So that's pretty much what we did this afternoon.  LJ's favorite food is peanut butter.  The below picture illustrates what will happen when you leave the 5 year old, bigger brother in charge for two seconds.  Nate's idea of feeding Noodles was not well conceived - hhmm, let LJ dip his whole hand into the sticky jar of peanut butter so that big brother didn't have to get his hands dirty dealing with a spoon.  I think I should go start the laundry now...and dismantle and clean the wheelchair...and give a bath to said baby brother. Oh yeah, after I change LJ's poopy dipe! Happy trails.

The Power of Choice

Silly Daddy, That's my Bib!

We can't believe Noodle's tube wean has come to an end. It has been an amazing achievement. With Markus and Jeni's help, we gleaned from their insight and gave LJ the chance to experience hunger and the choice to decide whether food was his public enemy number 1. He made the choice to join the eaters of the world! Thank you for teaching us that there is a power of choice. For without this lesson, we would have thought we were teaching LJ to eat. But no, no, that's not the case.

We continue to work with LJ to gain confidence in food, enjoy the tastes and hopefully he'll also learn how to drink water. Baby steps.  LJ is no longer getting any food through his gtube. He's already packed the lb's back on- weighing in at 28 lbs 1 oz yesterday. Since he still drools quite a bit, he can't get enough water to prevent dehydration so we are supplementing him with additional water in his tube. We don't know how long the gtube will be kept in (if all goes well we hope it can be removed in 3-6 months once we are sure how LJ handles these big changes). For now, it's just bling. To insure that LJ remains as healthy as possible, we will also keep a food log in the short term and possibly do some blood lab work done in the long term. We'll also have weekly weight checks at the doctor's office for the time being.

Thank you Markus and Jeni for your dedication, patience, spirit, humor, gentleness and knowledge. We are grateful. There aren't enough words to thank you for such a gift. I feel so lucky to simply have had the opportunity to wash LJ's disgusting, food-encrusted, car seat cover for the very first time in his little 2.5 year lifespan. Wait.  Then he drank milk (albeit chocolate) from a bottle for the first time last night - 1 oz!!!  Feeling even luckier that Jeni doesn't have to travel around the world to continue helping us shape LJ's eating decisions.  Plus we've had two, consecutive, successful days of solid sleeping through the night.

Our hearts and plates are so full! You are both brilliant and inspiring! Markus, have a safe journey home. We'll miss you but look forward to seeing you the next time you are visiting Washington, DC.  Can't wait to have a picnic with you. Happy weekend everyone!

Because It's All We Need....LOVE

Who doesn't need it? Happy Anniversary Josh, I love you!

photo by Sharon Montrose

Love. It is the greatest feeling one can ever feel.  I feel so lucky. And happy.

Lil Bites

LJ is an Eater Now!_Tube Wean April 19, 2011 from Jenn S on Vimeo.

So Sleepy

Sunday night LJ woke up at 4am-for good that day. He never went back to bed and we only could get him to nap for 30 minutes. Last night he woke up at 3:00am. By 4am he had fallen asleep on my shoulder but as soon as I transferred him to his big boy bed, he started screaming. He's been up ever since.

On to some good news, LJ had his weight checked yesterday. We are on an upward trend. To give you some idea, his initial baseline weight was 27.2 lbs. He dropped to 25.8 lbs on 4/12/11 and as of now he is up to 26.45 lbs.

We're just tired. Tired of feeling like we spend our entire day hand-feeding LJ in the hope that we hit the spot with that one food. Tired of worrying about the calories and whether its alright for cookies and crackers to be his main food source. Who needs protein anyway?

Throw in the towel or push harder? I know we'll get through this just like all the other challenges we've faced. It's not that difficult given all LJ's been through. And this is precisely what we had been told how it would be. Giving up is not an option. We wouldn't give up on him. Luckily, we will have Markus and Jeni helping us through the end of this week. I think I shall cry when I have to take Markus to the airport.

Peanut Butter!

I like peanut butter, creamy peanut butter, chunky peanut butter, too! LJ had 2 granola bars dipped in whipped cream for breakfast this morning.  He tried some egg salad too.  Then for lunch he polished off about 6 tablespoons of Jif creamy peanut butter on sugar wafer cookies.  Since he still isn't quite able to manage drinking and the peanut butter was so sticky, we give him drops of water from a straw in between bites. 

Peanut, Peanut Butter_Tube Wean April 15, 2011 from Jenn S on Vimeo.

LJ gets 4 ounces of blenderized food flushed with 4 ounces of water at bedtime just so he can get a good night's sleep (us too!).  The night-time tube feeding will not have any effect on our progress since he will be happier and better-rested when we start working the next morning.  Its also safer for him not be too dehydrated. Markus and Jeni also believe that if we let him get too far zoned out he may get sick which would obviously not help the tube wean.  With each day, it is getting better and better.  LJ is doing an awesome job.

Happy Hour with Daddy and Markus :: Popsicles and Chicken Nuggets

You Are My I Love You

You are my I love you
by Maryann K. Cusimano

I am your parent;
you are my child.
I am your quiet place;
you are my wild.

I am your calm face;
you are my giggle.
I am your wait;
you are my wiggle.

I am your carriage ride;
you are my king.
I am your push;
you are my swing.

I am your audience;
you are my clown.
I am your London Bridge;
you are my falling down.

I am your carrot sticks;
you are my licorice.
I am your dandelion;
you are my first wish.

I am your water wings;
you are my deep.
I am your open arms;
you are my running leap.

I am your way home;
you are my new path.
I am your dry towel;
you are my wet bath.

I am your dinner;
you are my chocolate cake.
I am your bedtime;
you are my wide awake.

I am your finish line;
you are my race.
I am your praying hands;
you are my saying grace.

I am your favorite book;
you are my new lines.
I am your night-light;
you are my starshine.

I am your lullaby;
you are my peekaboo.
I am your goodnight kiss;
you are my I love you.

Not Feeling So Hot

Since we're not feeling so hot (eg pretty cranky McCrankerson with periods of crying, confusion and overall pitifullness), and are a bit sleep-deprived (eg big black circles around the eyes), we decided to take our meal in the bath! (Why are we doing this? Oh yeah, to help LJ enjoy food!) We're doing everything we can to keep LJ comfortable and hydrated (eg water-dense foods like melon and cantaloupe and we're watching for good soaked dipes). His little body is getting acclimated to new sensations, foods and oral motor skills, so if the boy says he wants lunch in the bath... then that's just what the boy will get. Nope, it doesn't matter how many bathes he has had today.

It goes without saying, this tube weaning process is very scary and intimidating.


Popsicle Party in the Tub_Emily and LJ Aril 13, 2011 from Jenn S on Vimeo.

Breaking Up Is Hard to Do

LJ was lacking in energy today and didn't feel like eating as much.  Clearly, fatigue is starting to set in.  On the statistical front, Lewis has lost about 1.5 pounds.  Not alarming when you consider the facts.  Nonetheless, if LJ comes close to hitting the 10% mark for some reason (he's at 7-8%), we will not stop the wean, but supplement with small amounts of bolus feeding to carry LJ through (before eliminating again) and consult with the GI doc if that does not do the trick.  So we're keeping an eye on him, but the experts assure us he's on the right track.  He's certainly interested in eating, that's for sure.

Markus, LJ and me at the Doc's office

Markus entertained us all with his party tricks whilst at the doctors office this morning.  Meanwhile, Jeni got LJ to suck a lollipop in the waiting room.  The team is in a good place, making much progress and everyone is very supportive.  Noodles is pulling the pieces together though and he has started associating food with hunger.  He does things, for instance, pulling his shirt up to gesture toward his gtube button.

Markus entertaining us at the weigh in

LJ is really proud of himself.  Every few minutes he signs "go" and "eat" to anyone who'll pay attention.  He is trying to narrate to everyone that he is an eater now.  He gets a big smile when you confirm that he is a big eater...and ask him whether he just ate some mac 'n' cheese or what not?  Though he wasn't much interested in lunch, dinner was an awesome two hour spread that started with french fries and stretched out to apple breakfast sausage and then to good old watermelon.  He even insisted on snacking in the waiting room at the Doc's office.

Nate helping Markus take a Lego break...

Our Day in Review

Hungry Noodles:

Thirsty Noodles:

Markus Feeding LJ some Watermelon_Tube Wean 2011 from Jenn S on Vimeo.

Don't Stop 'Til You Get Enough

Jeni Berry Feeding LJ Ice Cream and Nutella_April 10, 2011 from Jenn S on Vimeo.

We have cut 70% nutrition via Gtube. Lew has been a real trooper despite not having anything by gtube so far today.  All of a sudden, food is fun! Noodles constantly signs that he wants more food. LJ has been subsisting on Nutella, Honeycombs, Gerber's lil crunchers (thanks Addie for introducing these!) ice cream, popsicles and whipped cream for the most part.  This morning Markus fed him lots of maple syrup with a side of pancakes. 

Everyday magic is all around us now. I think the saying is really true. Sometimes you have to wait for the good things to happen. Although I think perseverance has a lot to do with it too. What I mean is that sometimes you have to actively seek things out.  Other times they just find you.  It's insane and beautiful and amazing all at once.

Sleep is not so good. So far though, LJ is staying well-hydrated.  He's not interested in drinking....only eating. We've concentrated on things that are naturally full of water to combat this issue.  I have also been using my Vitamix to make homemade fruit smoothies which LJ has been enjoying on graham crackers. But we have a new nutrition plan to hopefully help us all get some must needed rest tonight!

The people and moments captured these past few days are like no other & we're closer to home for sure. Tuesday morning we will go for a weight check. The boys are having so much fun playing with Jeni and Markus.  Tango has been enjoying all the fruits of our labor too.  We all speak a universal language of understanding- follow Noodle's lead. We are over the moon happy!

Guten Tag Markus!

Hello to Markus! Love him-we think he and Jeni Berry are the recipe for Gtube weaning success.  LJ's Big Wean is upon us and Markus has arrived from Germany to help guide us on the journey and we hope of course, he'll tell us every little thing is gonna be alright.  The calorie reduction has commenced- by tomorrow we will have cut his gtube feedings by 25% and by Monday he should only be receiving 50%. By the 6th day, he should be receiving little to no nutrition or fluids by gtube.  That's when the intensive phase begins!  We're all so excited- well LJ hasn't told us so...but Mom, Dad, big brother and all our friends and family sure are. Let the crankiness begin!

We'll have our hands full this week so please excuse the silence for a few days, but we will take lots of videos and pictures and update the blog as soon as possible. That's it for now, I'm off to await my instructions! Many thanks to the gifted and inspiring Jeni Berry and Markus Wilken in advance for their compassion and tireless hours helping kiddos learn to love food. You have given so many children a safe place to explore food.  And also for making something for those kiddos' parents which had been so frustrating and so painful, into something so, so different. Most importantly though, for seeing LJ as a person, not a disability.  No matter what the outcome, these kids are an inspiration. Wait and wonder with us.  Over and out.

Nerves

How I'm feeling right now! We are all nervous this week. The big Tube Wean is almost here...The rest of our lives may forever be changed.

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.

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