Only Hugs and Smiles Allowed

Brief update regarding LJ's weight check and doc appointment last week. His weight is up from the last visit- he's 12.13 kg which converts to 26.75 lbs.  The nutritionist suggested he should be gaining 5 grams a day. We're pretty much on track if you reflect on his baseline weight pre-wean. We've made some kale smoothies and some zucchini bread and surprisingly been successful at having him enjoy eating those veggies. Noodles has also downed a few steamed pork buns & some homemade meatballs a la Emily- exploring other animal proteins and adding some variety to the repertoire.  Noodles also went to his first fair, and his favorite treats were funnel cake and lemonade! He's also been consistently taking a bottle of chocolate milk each night pre-bedtime... as long as it's from Mommy.

The nurse and nutritionist both feel comfortable with how well things are going (knock on wood it stays this way).  Consequently we don't have to go in for weekly weight checks anymore.  Next weigh-in is scheduled for mid-June.  The other thing we're tweaking is a reduction in volume of water via Gtube. Since Lew is getting fluids orally, we don't need to supplement as much through his tube.

Totally unrelated but a mantra that I try to live by:

Hooves on the Horse Go Clop, Clop, Clop

With everything LJ has been going through concerning the tube wean, there hasn't been much time or energy to progress in other areas.  After all, you can't put the cart before the horse! However that all changed this morning while he was at the barn visiting Dakota.  He actually rode the horse. The. Entire. Time.  He's been going for the last month on a routine basis and he has refused to stay on Dakota for any length of time.

Lew looked like a professional jockey.  He was awesome today; actually enjoyed himself at hippotherapy.  No tears or tantrums...just singing songs like the Hooves on the Horse ( sing it to the tune of Wheels on the Bus, and you get the idea ).  The only time he got uncomfortable is when the singing stopped and he lifted his hands to sign for "more" songs.  He immediately started grabbing for the handlebar. The barn has a mirror where he can see himself riding on top of Dakota.  He got a kick out of that too.  Here are some photos.

Only Thing Missin' is the Crepe

Nate Feeding LJ a Banana with Nutella! He is a proud big brother.

Don't Worry, Be Happy

Recap of recent events:  LJ has maintained his weight since the tube wean despite having an ear infection and feeling uncomfortable.  He has the worst sweet tooth known to man. He has become completely averse to anyone besides me, myself and I feeding him (though Emily more luck than anyone else).  This makes for challenging mealtimes.  We cannot keep this up for the long haul so we are working on helping him bring his own hand to his mouth so he can be self-sufficient with finger foods.  We have been strategizing non-stop to figure out how to stop the two-year old tantrums when he doesn't get his peanut butter, graham crackers, popsicles, cookies or other favorite foods. 

It turns out every child does in fact need to have some green veggies and different varieties of protein.  We continue to search for the magical item(s) that might be accepted into LJ's repertoire of food. This week I bought some tofu, Barilla Plus pasta and some whey protein powder suplement.  I was successful at getting LJ to try the tofu, some basil pesto and also some Spanikopita all in a weeks work....as long as it was all washed down with some Nutella or peanut butter (what crazy combinations!).  All the while we are keeping our fingers crossed that he is eating enough and will not lose any weight at his next weight check, this coming week. 

Lew's right hand has been tight this week and is also causing added concern.  His therapists and I are all having a great deal of difficulty prying it open.  It can stay fisted like this all day, and at points he has blisters and skin peeling off his palm when I finally do get it to open up.  We've been going to our therapist at Children's who has made several different, custom hand splints to try to offer his hand some relief. She has also used joint compression and brushing techniques to further resolve the situation all to no avail.  We are meeting with the Psyiatrist to discuss the post-Botox aftermath the first week in June.  It's not clear to us what our options are.  It seems to me that his hand was better off before the Botox (though I can't prove it). The Botox was effective loosening LJ's right pec and right bicep, but that's worn off and  but his hand is quite useless to him right now. One thing that has been brought up by the doc and LJ's PT and OT in the past was the use of a medication called Artane. I hate to give my wee one a medication that he will need for the remainder of his life, especially when there are side effects.  It would be so great if there were some alternative treatments!

------------

An incident in the grocery store earlier this week has stayed on my mind. An older gentleman asked me what was wrong with LJ's hand.  LJ was riding in the grocery cart, sporting his "resting hand splint". I explained about LJ's cerebral palsy and that due to his tone the splint gave that hand and arm some much needed relief. But of course, the root of my discomfort lies in the fact that we are stuck in no-man's land and don't know whether or how we can help LJ's hand

The guy in the store was quite nice.  I don't and can't expect everyone in the world to be as sensitive to these adversities especially when they are just kids.  We all have our different trials and challenges in life.  LJ has just been working so hard and he is so empowered by his eating since the tube wean.  I just can't let a minute go by without trying to make the world a little easier for LJ, whether that's researching alternative medicine or signing up for a new therapy. People (kids especially) can't see that he didn't ask for things to be this way.  While they aren't intentionally being mean, it still hurts.

Perhaps I was already at my breaking point for the week; perhaps all the little moments this week just made me weak.  Who really knows why we have such strength some of the time and crumble during others.  in any case, I read a beautiful, moving post that brought me to tears to complete the week. On Following Elias the Boy that Could, here's a link to the post that made me turn to the Kleenex.  I think no matter who you are and what you have gone through or are going through in life, it will hit a chord. We all just want to be worry-free.

I Love My (Grand)Mom

The name 'Mommy' means smiles,

and makes a light inside of you.

~Nate (10/ 2009)

I love my mother as the trees love water and sunshine – she helps me grow, prosper, and reach great heights.

~Terri Guillemets

IronMom

Some of you may remember the yellow "Pony" gait trainer that Noodles received in the earlier days of his mobility.  Well, that used to be Max's (of Love That Max blog fame) gait trainer. He's come quite far on the mobility-front  and so he passed it on to LJ!

We've stayed in touch over the years and we even got to meet our blog-land friend in person last year (when we were temporarily living in their 'hood for Feeding Bootcamp at St Joseph's).  If you are a mom, not just any mom (or might someday be a mom), you will enjoy the Top List of Reasons which Max's mom posted earlier today.  Perfect for putting a smile (Ellen has a great sense of humor!) on your face as we get ready to celebrate Mother's Day this weekend.

20 MORE REASONS MOMS OF KIDS WITH SPECIAL NEEDS ROCK

1. Because we are geniuses at talking our way into whatever it is that will make our children's lives easier—at restaurants, amusement parks, school, wherever.
2. Because we help people see the amazing kid behind the special needs. Put that pity away, please.
3. Because we have learned the language of disability and medical conditions, so much so that sometimes people ask if we ourselves are medical professionals. Too bad we have nobody to bill.
4. Because we are so over "typical."
5. Because we work through those not-doing-enough-for-my-child guilt trips...and move right along to feeling guilty about something else. Next!

6. Because we have endless determination, dedication and energy.*

(*This motherhood brought to you by caffeine.)

7. Because we have cried more tears than we ever thought humanly possible, but never let our kids see the sadness.
8. Because we still have a healthy sense of humor. And no cellulite! Or we do but we have no time to care!
9. Because we know that the timeline for when our kids do stuff doesn't matter. Even when our hope is running low, they somehow surprise us.

10. Because we always put ourselves last, although we know that mani-pedis are our God-given right.

11. Because we do not let our kids' habit of banging their knees rhythmically under the table or their obsession with all things purple or whatever quirk drive us crazy...usually.

12. Because we have extreme endurance—we're talking Ironwoman endurance—when it comes to dealing with the insurance company. Press 3 if you'd like to tell off a representative!

13. Because we listen to other mothers complain about the small hardships of their lives and we don't say "You think you've got it hard, sister?!" We just think it.

14. Because we keep our composure amidst all the frolicking tots at the playground, birthday parties and playdates, no matter how painful it may be.

15. Because we also keep our composure when people stare. OK, maybe we don't. HEL-LO, DIDN'T YOUR MOTHER TELL YOU THAT IT'S RUDE TO STARE?

16. Because when our children accidentally roll over our feet with their walkers or poke us in the eye when they are flailing their arms or almost knock out one of our kidneys, we smile through our pain and we do not sue them.

17. Because we spend countless hours filling out forms and doing paperwork. Where's the app for that?

18. Because just when we think our heart can't take any more, it takes more.
19. Because we will do anything in our power to make the world a safer, saner, kinder, happier, more accepting place for our kids.
20. Because, well, you tell me.

Arts and Disability

The Kennedy Center has an annual week-long festival called the "International VSA Festival" spotlighting disabled performers and artists. The MIL (otherwise known as Didi) and I went to see a performance with Gregg Mozgala called "Diagnosis of a Faun" at the Kennedy Center last June, and I was so impressed and inspired by it; but obviously life got in the way of me recapping it for you all.  Amy over at A Life Less Ordinary summed up the performance perfectly so I am not gonna even try. I've taken an excerpt from her blog post with her permission- see below.

Of course the entire time I sat stunned at how awesome this dancer was with CP!! I couldn't help but wonder how my child with the same diagnosis would eventually learn to live with his own set of challenges.  Would LJ walk with forearm crutches or would he be in a wheelchair let alone be able to balance for long enough to pirouette?   I remembered the grim diagnosis that a doctor had given us when LJ was in the NICU those first few months of his life. Where these two people's circumstances drastically different?  I cried tears of pain and joy as I thought my child isn't even able to sit or eat without assistance all wrapped up with Gregg Mozgala's profound performance which gave me hope and optimism.  At any rate, here's the synopsis as told by A Life Less Ordinary:

" Created by Tamar Rogoff, this piece investigates healing through science and art. Set (more or less) in present day, the play begins in the forest home of the Faun. A Ballerina enters the forest, capturing the Faun's attention--but during her dance, she falls and tears her tendon. The rest of the piece is set in and around a hospital, with doctors trying to heal the Ballerina. The Faun is also studied by the doctors as an example of how modern medicine would address his alignment/gait. The actors explore the juxtaposition between reality/fantasy, doctor/patient, human/beast, love/loss, empathy of looking at the whole person/stoicism of treating an acute injury. Or, something like that.


There are four players in this piece; Gregg stands out for many reasons--wearing only a loincloth, and being the only mythical creature being two obvious ones. Maybe the other theatergoers were watching the actors equally--but my focus was on Gregg and his movements. He started the play on a rock structure, at least three feet off the ground, with staggered rock steps leading up to the uneven platform. He moved all around the space; running, jumping, leaping, starting, stopping, getting up from the floor and back down again, forwards, backwards. His gait is imperfect; he has an obvious CP gait. His knees buckle in slightly; he appears to have tibial and femoral anteversion, like E. Several times during the piece I see his legs pulsing, either from fatigue or clonus. He can put both feet flat on the floor--but it seems that he has to think to do it--every time. He stands frequently with his weight on one leg, flat; the other, toes curled under, dragging slightly behind. So familiar.


I also saw a man. A grown man, independent and brave; a powerful, masculine, sexy, talented, strong man. A man, who went through the aches, pains, failures, successes, and mistakes that every person goes through while becoming a dancer. An individual who had to develop trust with a partner. Just...a guy, a performer, an artist, who happens to have CP.


My father and I got the opportunity to talk to him after the show. I hoped that we would...I wasn't really sure what to say, but it related to how he was able to move like he did. To me, he never stopped moving like a guy who had CP; but he moved wonderfully, and in a way that I hope and pray E will one day. He mentioned that growing up, all this therapists, teachers, doctors--everyone--was trying to get him to move like other people. And, why not; that's the best way to move for proper body alignment--and that was his only example. All the focus was therapy, exercise, repetition, try harder, relax, etc. He said the big breakthrough for him (in the beginning of his dance training, he said just thinking about stepping made him fall "all the time--ALL THE TIME") was putting the focus on the chest, the midline, the breath. He studied Alexander Technique, Yoga (I think), and through dance--found a way to better connect with how he moved his body. I said that sounded like a very mature concept--which he agreed. "

I think I should go see the piece again because I really have reached the point of acceptance. LJ has accomplished so much and there are so many opportunities for the future.  At that time last June, it seemed unreal to me that LJ would learn the joys of things like junk food, preschool and the circus. There was still so much pain and heartbreak.  I was not alright with the world.  I could benefit from watching the performance again- this time from a different perspective. It moved me to take that next step, put one foot in front of the other.  If the ballet is ever in your area you should go see it...you will be in awe too!

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 ::