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.