The Greatest Show On Earth!

Lewis has mad skills.  Last night he removed his night brace and threw it to the floor in the wee early hours of the morning.  I've got to tell his OT what a great job he did with his fine motor skills! Still amazes me.  Learning. Growing. Knowing.

Here's a video from his recent OT session this week:


Trapeze Lewie! from Jenn S on Vimeo.

The Art & Science of Building Resilience

To navigate the complex world of special-needs (or super-powers) parenting, we need to be resilient- to learn, adapt and grow even stronger given whatever life's circumstances come our way.  An integral part of strengthening resilience is sharing our story, our feedback, our imperfections in a connected, grounded way.

We have a choice.  We get to choose. We can cultivate calm, non-reactive presence and sit with whatever is. This practice is like mountain with no top; ever-expanding. There is no top.  I am constantly learning by trial and error.

Sit with it.  Sit with the idea that Lewis has been eating (by mouth) for the last 3.5 years. Is it still disorganized? Hell to the yes!  But his whole life revolves around food now.  He is completely desensitized from the trauma of the intrusive medical intervention he received in the hospital after he was born lifeless. Considering he has only truly been eating and drinking for the last 3.5 years he is making continual progress. He loves food!

Fast forward to the last two months at school.  As much as we love school, it's a lot of new people in our lives who sometimes don't really understand us. Even though we have a team who supports LJ, it somehow can feel lonely.  Quite possibly my fear, anxiety and defensiveness enter into the mix.  But here's the thing, his team is nervous about feeding him.  After the long road we've been on to develop Lew's eating skills, I do not want to entertain the notion of a setback.  So I am aware that my reaction is completely founded.

My impression is that the school SLP (speech therapist) and lead teacher don't really want to feed him/feel comfortable feeding him.  They've been pressing us to have a dysphagia team observe Lewbug eating at lunch time so that they can offer an action plan.  Josh and I finally consented under the impression it would not limit LJ's food intake but rather give constructive feedback about increasing his efficiency and helping those people that are feeding him. Since there isn't really a lot one can recommend, their knee-jerk-go-to solution is to suggest another swallow study.

Here's my strong conviction on the swallow study.  It's not gonna change what we are currently doing.  It might confirm what we already know...that there is a delay with Lewis' swallow.  But if you don't rush him, give him plenty of time to swallow, and make sure he's cleared his throat before receiving his next bite, he's eating.  He's not going to stop eating.  When he drinks water from his camel bak with bite valve, he has a compensatory body positioning.  He's weak on his right side (he has right-side-hemi-paresis).  The result: Lewis has figured out he needs to gain momentum to swing the bottle upward slightly using only his left hand, and tilt his head slightly back to get the water to flow.  The school team is concerned that all of the above makes him high risk for aspiration.

On January 5th, the schools dysphagia team came and observed a very chaotic "lunch party" with a bunch of LJ's classmates.  They were observing LJ.  There hadn't been any consult with Josh and I prior to the "lunch party".  Questions about LJ's physical abilities weren't addressed until their very first meeting with LJ.  Information about our past attempts at the month-long boot camp in NJ at St Joseph's hadn't been explained.  Nor had the team been apprised of our tube weaning with Dr. Markus Wilken. And of course our on-going efforts at private speech/feeding therapy at home also weren't previously brought up.  It was very frustrating for me to sit and watch them analyze my courageous, beautiful, vulnerable, happy, complicated, unconventional eating boy.  Twenty minutes in, the SLP from the DT asked if we had "ever considered doing another swallow study because he's really got an open airway and that's cause for concern".

My gut reaction was this: "No.  He's already passed the swallow study in 2010.  He doesn't aspirate.  We're not concerned.  His doctors are not concerned.  He hasn't choked, or gotten any respiratory infections.  He's never had pneumonia except once in the NICU.  He's not even followed by a pulmonologist anymore."

Sure, somedays I feel like all I want to do is hide under a rock for a few days.  When I feel depleted of energy for this battle- recognizing this.  Having this awareness that I feel spent, overwhelmed and sometimes furious informs my decision that I need to take all-too precious time to myself to nurture and recharge. And then I regroup my thoughts.  It comes to this- anxiety and frustration is happening but ordeal is a choice.  The choice is how I get to hold the experience.  My choice right now is to thank them for watching my little boy, making their recommendations on their little report and moving along.  Nothing's changed.  There's no new medical crisis or diagnosis over his eating. He's adapted to life's circumstances. The only thing that's different is a school with new people involved with feeding LJ at lunch time. We'll get through this.  It just takes time.  The choice is mine.

Olaf

Horse Sh!ft

I got to take LJ to hippotherapy today. When do boys lose their fascination with poop? I've attached the video from today's trail ride. The whole time we tagged along, Nate couldn't stop talking about the horse poop. LJ did great despite insistent pleas to remove his helmet (it was 90 degrees +). He was a total trooper and I just enjoyed being in the moment and appreciate all he is able to do these days. We've come a long way! happy trails and hope you all have a great weekend.
Horse Sh!ft from Jenn S on Vimeo.

Nate befriended Freddy the cat! the feline version of Annie the Wonder Dog

Cranio what what?

Pizza Chef Lewie, who prefers a little hat with twirlie thing on his dome instead of a chef's hat; 
LJ is also now able to independently sit without falling over for extended periods. See above photo;)

Cranio what?  Are you scratching your head?  We've started Lewis on craniosacral therapy (CST) this summer.  As if we didn't have enough therapies we're involved with, I thought it might help relieve some of LJ's muscle tightness so we've scheduled Saturday appointments for the summer.  First off, I really like the therapist's quote on her business card so much I though I had to share it.

Regardless of age, innate wisdom exists.

I don't think this needs more introduction.  It definitely gets me thinking and hope it does the same for you.

As for the deets on craniosacral therapy:  Craniosacral therapy is a holistic integrative approach to an individual's symptoms getting better, be it from a chronic illness/disease, pain or something as minor as ear infections and colic.  CST is used to effectively manage sensory processing disorders and communication difficulties through the use of whispering fingertips.  The therapist feels for abnormalities in the craniosacral pulse (completely different from a heartbeat or breathing rate) that belongs to the fluid and membranes surrounding the brain and spinal cord.  CST also works on the hydraulic-like fluid of the nervous system.  The premise is that it helps realign things and calm the nervous system.  Our therapist, Ms. N, uses a feather-light touch and then cradles LJ's head, face or chest as I play with him (aka distract him) or he lays back in her lap.

Last week Ms. N worked on the lymphatic system to try to ease some of LJ's chronic chest congestion...one side effect he had was a runny nose for the next few hours afterward.  One can only assume this was due to everything draining more effectively.  His hearing was also quite sensitive.  He insisted in signing to me that I needed to use the otoscope to look in his ears.  He emphatically pointed and tugged on his ears...but I didn't see any redness, nor were his tubes missing.  Then Nate was curious so everyone had a turn looking in each others' ears. Not sure if there's some other explanation but I'm sticking with sensitivities since the ears are no longer bothering him.  NIH describes the lymph system as a major component of the body's immune system.  Nonetheless, we're quite hopeful for the effects CST will have for LJ.

Some other benefits of CST are improved blood flow, promotes relaxation and reduces muscle tension and pain.  I'm not surprised the American Academy of Pediatrics has no official policy on craniosacral therapy but they confirm it is non-invasive.  Since we've been willing to try alternative therapies such as hyperbaric oxygen treatments (which btw we were happy with), a holistic wellness route seems like a no-brainer...excuse the pun if you will!  Still, if it can't hurt what's to lose except the weekly out-of-pocket session fee (it's so not covered by our insurance policy!)?

He's been so relaxed that he asks for a nap three quarters through each session.  Then he comes home and takes an even longer nap. The therapy also completely relaxes his digestive system too!  Sorry for tmi.  Everything is more relaxed.  Perhaps he feels blissed out?  Fun stuff either way.  I've been researching this therapy since November and can't believe it took me this long to get therapy underway.  I think it is fair to say we are following every lead we can.

What's Going On?

I've been trying to find a way to get an update posted.  So what's been happening? Everything is really status quo.  We continue with LJ's chaotic schedule of rigorous therapies even contemplating how we will schedule another round of HBOT.  He was pretending to go to sleep last week at speech therapy, and he strung three words together using his signs.  He told Ms. D "go, turn light off" and he vocalized "off" simultaneously.  Very exciting stuff.  LJ has also been more consistent with regard to moving from his tummy to a seated position and maintaining a sitting position for longer stretches when he has a preferred toy in front of him. I start teaching my very first yoga class on Monday.  I started an LLC so that I can also teach private sessions or corporate sessions.  We're applying for a service dog through 4 Paws for Ability for LJ.  More on that in another post (but the net of it is that it will take a while, about 11 months to train us with the dog).

The boys spent the morning of their President's holiday at the dentist.  Nate got a good report.   LJ however needs to lay off the applesauce.  He's got two cavities that need fillings, boo.  I'd much rather have him eating independently from the gtube so I really have no regrets.  Bop had hip surgery- he is recovering beautifully and is disciplined with his PT.  Thank you for all your well wishes.  Babu is on the docket next week for back surgery so keep up the happy thoughts.  Josh has been keeping the bread chronicles alive with several loaves of challah this week.  {Note to file, making challah with whole wheat flour doesn't turn out quite right.}  So yummy to wake up and have freshly baked bread with butter and jelly. And the weather is stunning today - sunny and sixty degrees in February.  Counting down for the tube removal on March 29th!!!  What can I say?  Hope you are all well.

Happy {Chilly} Trails

We had a lovely time at hippotherapy in the 28 degree whether this past week.  Siblings and all.  Don't know if I mentioned that Lee Roy (the loving, old horse LJ used to ride) moved out of state with his owners so we've been riding a new horse named "Bo".



Bo is pretty quirky.  Although perhaps the experience was due to the chilly temps and the fact we had LJ wear his ski hat underneath a larger size riding helmet which sort of came down over his eyes a few times. And maybe also because thirty minutes of freezing your bottom off in a horse barn riding horses probably doesn't loosen up the muscles so well, LJ kept asking to "be all done". That and his hands were so frozen he could barely hold on to the balance bar on Bo's saddle.  His hands were like popsicles when we got back to the car.  His face did brighten up at the end though, when we got to feed "Bo" a special "cookie" that Kristen boasted was supposed to taste just like an apple.  Next time I will remedy the situation and have some mittens with extra grip on the palms for him to wear.  And a real apple.  But all in all, he did an awesome job this week!

Can't Seem to Call it Black Friday

Here's a snippet from LJ's OT session this afternoon! Wonderful.

City Slicker

LJ had therapeutic riding this morning.  He was not afraid to tell everyone how he'd rather be eating applesauce and graham crackers.  Ms. V, our therapist, had to review the schedule with him multiple times.   First ride Lee Roy the horse. Then snacktime. He got to feed this lovely 2,000 pound creature an apple at the end of his session.  Big horse, Lee Roy, was really a gentle giant though.  One of the exercises involved big yellow dice, that LJ would hold at midline with both hands and let drop to the ground.  Whatever number it landed on, was how many steps he and Lee Roy could advance farther. LJ had to practice some speech by trying to give Lee Roy the "walk on" command when it was time.  It really takes a lot of core strength, trunk control and neck control to keep from doing the head bob jello neck. His body, as you can see from the video, is trying to acclimate with each shift in weight from the horse's gait.  Interestingly enough, he can keep his balance when he wants to tell me the sign for "eat".  All 27 pounds of him...on a 2,000 pound animal.  It's incredible.

Back in the Saddle_LJ August 2011 from Jenn S on Vimeo.


City Slicker_LJ (almost 3) and Lee Roy August 2011 from Jenn S on Vimeo.
It's also been awhile since I checked in.  LJ had a weight check regarding his tube weaning.  Despite the feeling that he eats enthusiastically, he hasn't gained any weight in 6 weeks.  We're at a standstill at 12.22 kg and 91 cm.  It sort of makes sense, since he was always being force fed, I mean tube fed, whatever the prescribed bolus amount was whether or not he had a full-feeling.  I don't think he was ever at his natural weight. Another contributing factor is all his activity.  He is a squirmy worm.  He kicks a lot, he tries to wriggle out of my arms, he can fold himself over to touch his shoes, completely over his legs when seated in his wheelchair.  So zero weight gain leaves us needing to supplement his oral intake with 200 extra calories a day.  We've added extra butter, oil, protein powder, pediasure, avocadoes and the like to his list of preferred foods.  We'll have another weight check in 6 weeks.  We'll see.

We met with the neurologist.  The doctor feels like LJ's main focus should be therapy. No MRI at this point is going to yield any actionable information.  The area where LJ's brain suffered the most injury, is his basal ganglia.  Its hard to tell from it's location just how significant his body was impacted but there are so many signals going through this bundle that effect his nervous system.  We continue to intensify therapies and see whether he will have verbal output and the strength to walk or sit.  So, in a nutshell.  It wasn't a bad meeting.  Just wasn't the clarification I was hoping for.

We also met with a really awesome speech therapist/technology consultant.  She met LJ and I and worked with us on his iPad for communication.  We're trying to tap into helping him communicate easier and more effectively.  It was a productive meeting and she shared a lot of knowledge and cool cause and effect apps to work on with the lil man.  We're meeting again soon so I will devote an entire post to it later.

School starts soon.  We are still having meetings to discuss evaluations and do the early childhood intervention reviews before the transition to a new special needs program through the county. I'm trying to get a meeting to revise LJ's IEP for school.  We need to add things like oral feeding goals since at the time, he hadn't been weaned from the feeding tube.  Amongst many other things, we also need to allow for the assistive technology devices. I'm following up with the rehab equipment folks to check the status of the stander and chair we had fitted for LJ back in May.  And nope, it's still not in.  The orthotic body suit and glove to avoid another round of botox still isn't in either.  And so it goes, we wait.  We call.  We follow up.  We wait.  We are spent but we are fighters.  We are hopeful parents, grandparents, brothers and sisters, aunts, uncles and friends.  We are hopeful.

Be Still My Heart

I will never again take for granted the luxury of being able to speak easily and verbally what is on my mind.  It tears me apart that LJ cannot speak.  I tear up sometimes because I know that Noodles is frustrated beyond belief.  There is an eminent fear that he will be misunderstood and most of all unheard.  He has a definite opinion about what he wants to do, which food he wants to eat, which book to read or which clothes he wants to wear.  He is becoming more proficient with his iPad equipped with Proloquo2go but has not shown quick enough progress to ease the worry.  If something is too loud he expresses his displeasure by crying.  If I leave the room and he is upset, again, he voices his discontent by crying.  Noodles understands but he cannot respond.  Clearly, my achingly, beautiful child is a smart kiddo.  He's a hard worker yet his muscles give up and I love him and I ache for him.  And I feel guilty.  

Most of the time I can read his signs or movements pretty well.  Sometimes, though, he gets mad and can't muster a sound so he bucks backward and arches his back or throws himself forward in his wheelchair.  He can do some modified signs, but sometimes his lips move and there's no sound.  He watches our lips and tries to form the shape with his mouth only to come up empty-handed.  If we could just find a way to tap into his thoughts and desires...I listen with my heart and I am ashamed that I am inept at translating his cues but I still fantasize about how the words will sound.

That's where apraxia comes in.  It's entire diagnosis name is "childhood apraxia of speech" or CAS.  You can read the full NIH description for apraxia here.  But the short version is this: tell tale signs of apraxia are faulty speech motor planning and programming.  It is strongly based on neurological deficits or traumatic injury. LJ had major damage to his basal ganglia at birth, not that I know how to read the MRI's, but that's what the neurologist told us.  The basal ganglia is most notably the area in which people with Parkinson's disease lose the control of their bodily movements...just one of several neurological conditions that you may have heard about in celebrity news (read Michael J Fox and Mohammed Ali).  Unrelated to Parkinsons but no foreigner to medicine, Robert and Lynn Koegel are psychologists at UCSB (shout out to Uncle H!). They are distinguished clinicians and scientists who have done extensive research working with autistic children and are experts in helping children learn to speak. Five seems to be the magic age at which, if children will be able to speak, will have a much higher rate of success in the mainstream.  

Practice, practice and more practice.  We have two more years before we age out.  We are engaged in intensive speech therapy and have been since we began services through our early intervention program when LJ was 4 months old.  LJ has 4 hours per week of speech therapy with a PROMPT certified speech and language pathologist. He also has had countless hours of homework practiced in the home, at school, in other therapy sessions, in the grocery store and in everyday life.  I have sat on the other side of the two-way mirror while Lewis tries and tries as hard as he can to do what the SLP asks of him to no avail.  I have broken down in tears.

So as you can tell, I have been feeling a bit down.  But then today LJ's amazing speech therapist, Danielle, wrote me an email that quickly cheered me up."Also....last week...I forgot to tell you.  I was PROMPTing a word on him ...I think "up".  I did it several times to show him how.  He put his hand on my hand and pushed it away while nodding his head no.  Then spontaneously said "me".  Then he attempted to produce the word by himself. That was pretty cool!"

And that was indeed pretty cool.  In other news, the boys started camp on Monday.  Each are off to a great start- albeit exhausted by evening's onset.  Full days of water play, outdoors, sunshine, fresh air and making new friends.  While they're off gallivanting at camp, I've had a little free time on my hands to tackle some extra-curricular classes and feed my soul.  What is not to love?

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.

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.

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.

Some Shaving Cream...Hold the Mess

Things just keep on getting busier around here.  We might have to get Noodles right wrist and right hand casted. Serial casting has been found to provide patients with effective stretching when other methods do not post-botox.  You can read a Kennedy Krieger Institute article about it here. The botox doesn't seem to have helped- it may have made things worse. Noodles is really guarding his right arm and he is clenching his fist tighter than before. The OT at Children's made him a "resting splint" to wear when he is relaxing or sleeping. He didn't nap today as he was too busy working his way out of the splint!

Things should have opened up and we should have been seeing positive results after day 4; Its a mixed bag really.  The botox has at least helped his leg.  He has been enjoying practicing in his walker so much so that he even chose that activity over playing in a giant multi-purpose playroom at school on Tuesday.

Here's a photo of LJ at OT with the Children's therapist this week.  He's playing with shaving cream on a mirror (note how fisted the right hand still is). Yeah, he got messy. But at least he smelled nice and clean! We've increased all therapies in an effort to help maximize his progress. Twice a week OT, PT, ST, feeding therapy and aqua therapy (which Emily, who is kick-a$$, did all on her own today since I was over-committed).  Plus preschool, Hungry Hippos and Music Therapy and oh yeah, doggy fluid treatments involving needles and IV's (its TRUE love).  Four hours a day of therapy for the little nugget is too much. Fun fun fun! Does anyone wanna have group therapy with us soon?

Ring Around the Nosy

This is a shot from PT with Megan today.  It is a cute game that you wear an elephant mask and try to scoop up your rings using your trunk.  LJ enjoyed himself!

LJ Headshots

LJ meets cream cheese and chip soup. Anyone had chip soup? Nope, not tortilla soup. Chip soup. Hands down, it's brilliant. When the cream cheese got wet, it looked like he had modeled for the Got Milk? ads.  I had to do a double-take because its a sight I've never seen with LJ.  Jeni is so awesome; she makes it look so easy.

Seriously.  Isn't he the cutest though? 

The rocket ship around his Mic-Key button is called a "Tummy Tunnel".  An entrepreneurial mom of a tube-fed kid came up with the idea for a home-based business because there was a need to access the button for bolus feeding. Onesies or footed pajamas just don't cut it. As a general rule, I do not iron. Ever. I bought 6 of the iron-on patches and made an exception. I turned several of LJ's onesies and pajamas into wearable pieces of clothing. Finally some of Nate's hand-me-downs are being used! If you're interested in learning more, visit her website here. But hopefully, we will not be having to live with his g-tube too much longer.

Keeping Pace

We've adjusted the lovable Noodles' diet.  He's now getting 100% homemade blended food through his G-tube button.  We slowly phased out the Elecare formula from his nutritional intake over the course of the last few weeks.  He is tolerating it folks and his retching episodes seems to have decreased! His poop is real, human poop and lots of it- especially when we are in a very inconvenient place.  Timing is everything!

We've had many consultations with our nurses and nutritionists, and I bought this great "cookbook" called Homemade Blended Formula Handbook.  We're armed with a crockpot and  this new snazzy, uber-powerful Vita-Mix 5200 (it's a commercial-grade blender) to help our little cutie patootie pack on the weight and get ample protein, vitamins and minerals without being too much of a time suck for the family.  His stomach has gone through the "normalizing" period and we seem to be well on the road to a stronger, happier, more talkative kiddo without all that formula sloshing around in his belly aggravating his reflux.

He's been in a great mood.  Here he is shooting hoops with Cathy, our OT, earlier this week and mastering the Up and Go gait trainer.


Superstar LJ_Oct 2010 (2 years old) from Jenn S on Vimeo.

When Life Gives You Lemons

When life gives you lemons, our new motto is drink lemonade. In this video you can see LJ's face pucker when he tastes the lemonade. But obviously he likes the flavor, because he kept going back to his sippy cup for more.


Banana Phone, Lemonade and Gingersnaps_10.16.10 from Jenn S on Vimeo.

LJ now thinks he's a moviestar!

Retching then Food Fight

The tube weaning Whisperer (aka Dr Markus Wilken) is coming!!! He'll be here before Thanksgiving. We're thrilled to meet him and introduce him to lil LJ. And looking to the future when we may finally have an eater... We're practicing being around food a lot. Until the much anticipated visit, these videos of Oscar and LJ at Hungry Hippos will have to suffice.

Food Fight at Hungry Hippos_Oct 15 2010 from Jenn S on Vimeo.

Lewie the Lip

Well.  LJ's bottom lip could have practically taken up the whole room!  See video for proof....right around the 11 or 12th minute.  The Hungry Hippos was different from all the others right off the bat.  For starters, Oscar wasn't there due to illness.  The intimate nature of the session was less-than-appreciated by Mr. Noodles.  The other thing that might have influenced his willingess to try oral feeding was his starting location.  Usually LJ is in his bumbo seat.  This time he tried sitting in his wheelchair with the tray attachment.  As you will begin to see, these did not bode well.


Lewie the Lip_Hungry Hippos on 10.8.10 from Jenn S on Vimeo.

On the other hand, Lewis did attempt to pucker his lips to blow bubbles in a straw.  He clearly had a lot more saliva production- probably because he was smacking his lips and moving his tongue in and out.  The variety of foods we tried to get him interested in were orange slices (he liked these at school snack one day last week), mango slices, crunchy cheese soy crisps, wheat thins and water.  He got the biggest kick out of pretending to wipe his mouth clean!  I'm not sure what that says about the finality of him being "All Done!" but he was into it so we rolled with it.

Earlier in the week we had speech therapy.  Danielle uses a method known in the speech world as the PROMPT Conceptual Framework. PROMPT stands for "Prompts for Restructuring Oral Muscular Phonetic Targets".  This is a hands-on approach and thus the therapist uses her hands to cue and stimulate articulatory movement, at the same time helping LJ to limit unnecessary movements.  This philosophy embodies that the therapist must always choose goals that will help the client achieve functional language and intelligible speech so that social, emotional and academic interactions with the world are possible.  There is more information about how environmental factors, cognitive linguistic factors, physical-sensory, communication, social-emotional and behavioral outcomes all impact the child's success.