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.