Food for The Soul

I've heard from the Arlington County school system & LJ is eligible for Reed Elementary School- they have a special education program for preschoolers with special needs.  We had to go through some eligibility meetings back in March and then we finalized his IEP (short for Individualized Education Program) in April. The IEP is crucial for Noodles since these are all his goals set forth for the coming year as well as assistive technology to help him learn how to "learn". You can find out more here about the Reed Integration Station here. I'm thrilled with his placement, ecstatic that it will be a five day a week program, relieved that the school is 100% wheelchair accessible and I am so hopeful for all the good things to come. I'm a proud momma!

His new team will be meeting prior to September for an AsTech meeting which will consider and evaluate his current use of ProloQuo2Go on the iPad as well as make recommendations for new technology or devices.  But in a nutshell, Noodles will be receiving some PT, OT and ST during the school day which makes things much, much easier for life on the homefront.  (I'm still planning to privately supplement the therapy because he wouldn't otherwise get as much therapy as he's currently receiving) Additionally, the special education teacher is awesome! Everyone so far throughout this process has been so helpful and knowledgeable.  Ms Julia has had years of experience with every type of kiddo in the world and even was able to give her design input when the school underwent a huge renovation in 2009 (she lobbied for much more square footage in their classroom and she got it done! as well as a side room with an in-ground, sensory ball pit). I was a complete buyer though, when I learned there were several mainstream students integrated into the class and that they will mutually benefit from the experience of being exemplary role models (if not Ms. Julia fires them! kidding) and learning how to help those with disabilities all at once. We will be so, so sad to leave our caring, supportive nursery school family behind after a wonderful year of many, many firsts.

All that said, we were contacted by the physical therapist to come in for an equipment fitting to insure that if stuff needed to be ordered for LJ for the classroom next year, it would arrive in time for the big day.  Here are some snapshots of that equipment fitting.  The rehab equipment representative was awesome and even gave me some good leads on LJ's iPad stuff etc. 

LJ signed "want" while glancing in the direction of all the standers as soon as we got to the PT gym.  We spent a good, solid hour trying out different equipment.  Fingers crossed, between our insurance company and the school grants, we will be getting LJ this incredible hybrid mobility stander called the Otto Bock Squiggles Mobility Stander.  The whole kit and caboodle also fits into this stroller/wheelchair base too http://www.ottobock.com/cps/rde/xchg/ob_us_en/hs.xsl/5164.html.  It's on a chassis that allows one to adjust the height and tilt, so LJ will be enabled to move from snacktime or art activities at a lower worktable to standing and possibly maneuvering it himself once manual wheels are attached-he'll hopefully learn to self-propel from one area to another within the classroom environment. In the last picture, Noodles impressed the girls with his iPad! He has the cutest girl joining his class next year, S, who was going to be getting her own iPad for communication really soon.  She really enjoyed checking out LJ's iPad.  These kids are so high tech:-)

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!

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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.