Happy Happy Joy Joy

Noodles tried a piece of cold, leftover cheese pizza today!!!  It makes me smile so hard I think the corners will crack! He wasn't skeptical of it, he didn't gag or anything. He signed that he wanted some (yes, he initiated it folks), and when we gave it to him he just started gumming it. Coincidentally, an episode of Barney was on in the background and there were several kids learning to make a pizza with Barney at a pizzeria.  

As for me, I'm still sick but I've been takin' it easy and the meds are starting to do their thing.  I'm low on energy & I have a repeat chest xray next week to see if the pneumonia is still there. And as my wise Uncle Jon suggested, maybe your body just needed you to slow down.  Or maybe you should tell your body to shut up!?*@! Time will tell.

But I digress, back to the man of the hour.  I caught myself saying out load, this is amazing.  This is the first time he's ever had pizza!!  What a "normal" rite of passage for most toddlers - its just part of living.  But I actually cried because the joy is so different.  Everything is so much harder for Lewis that I've felt this shame and inadequacy with respect to eating encounters- you know, we're the elephant in the room kinda thing.  I am so encouraged and excited for more practice at eating as we hustle to get ready for Markus' next visit in the Spring.  Today, I feel a lot less anxious as we slog our way through :)

Pizza Pizza_Lew's New Fave_12.7.2010 from Jenn S on Vimeo.

Finding Inspiration

Egads

Pneumonia.  My fever won't leave me.  My ribs feel like they're cracked.  My lips are indeed cracked.  How am I supposed to stay hydrated when all I want to do is sleep. If I drink water I'll have to get up to go to the bathroom? Saturday night through Monday night I woke up in pools of sweat.  I didn't sign up for this. It just reminds me that I am getting old. On the flip side, I did need to drop a few pounds after the Tgiving revelry; haven't had a sip of anything except soup (Josh is a good hubby- he made me turkey noodle soup from the leftovers), Gatorade, water and lemon-ginger tea.

The first antibiotic didn't work and the Tylenol with Codeine wasn't helping me sleep-I was still coughing up a lung. I'm on a new antibiotic as of this afternoon and got some fancy cough supressant called Tessalon pearls. I've had to cancel so many fun "dates" this week.  Woe is me, I know, I'm just havin' a hard week. I just needed to "unthunk my glunk" as Dr. Seuss would say. I'm on the mend. Alright. I've got to go to bed now.

The Dream

Sometimes a dream lands so hard
it flattens you.

I liked it better before, you moan,
waving my dream like a silk handkerchief,
light and soundless above my head.

It could have been anything,
a kite, a bird, a large balloon
with three passengers.

Instead, it landed in your lap,
you asked for it,

 

secretly you had been reeling it in for months
like a trapped fish.

Too big for the net--
it loves you more than you love it.
It wants to stay here forever, smiling and cuddling in the bosom of your days.

    
              ~ Naomi Shihab Nye, from Words Under The Words

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.

The Latest

Four weeks.  The feeding pump has been stowed away in the depths of some closet somewhere for the last four weeks.  It has been exactly one month since Noodles has been on the blenderized diet.  And life is so much easier.  Here's a sample daily intake (the only change is that we've added some salt, 1 tsp of Cod Liver Oil and reduced the Canola Oil to 2 tsps). The cod liver oil is for Vitamin D:

















Retching episodes are a thing of the past and I have to think its because of the new diet.  Emily has been a tremendous help figuring out what works and what doesn't.  Together, we've found a system that works.  We laminated the Homemade Blended Formula Worksheets, one for each day of the week, and came up with a menu plan for the week.  We use a china marker to adjust the food items from time to time and recalculate the total calories accordingly. It keeps us organized and each night we place all the ingredients for the next day in a container.  We add liquid the next morning and blend it up in the Vitamix. Voila.  The food is made for the day and we draw it up into syringes and plunge it into LJ's belly several times throughout the day. (he got turkey, potatoes, peas and apples for Thanksgiving yesterday O)

As of Wednesday morning, Lew is the proud new owner of yet another hand splint.  His right side, still the weaker side, doesn't ever seem to relax.  LJ always holds his right arm close to his chest and right hand fisting still persists. The old hand splint was too small and had disappeared anyway so our OT at Children's Hospital made him a new splint.  We have been working our way up to wearing it all day.  So far Noodles only tolerates it for about 20 minutes and he has figured out how to un-velcro the straps using his functioning hand! He's quick like that.

LJ prefers to communicate with sign language over his iPad (but we're still working with him on it).  He's producing more sounds when he signs, oftentimes making an "mmm" sound when he signs "more" or "ma". Lately he's also started making the "ba" sound.  The cerebral palsy makes it hard for him to control how his hands and arms move.  And it also makes it difficult for him to close his lips when he wants to create a sound.  Sometimes he uses his fist to help guide his jaw upward in order to produce a sound.  Still, I continue to be awed by him and he probably uses 20-25 baby signs/day.  Here's the rundown:
water ::  eat ::  yes  ::  no  ::  mom  ::  dad  ::  please  ::  thank you  ::  more  ::  all done/finished  ::  diaper change  ::  movie  ::  bath  ::  night night/sleep  ::  car/drive  ::  play  ::  ball  ::  light  ::  phone  ::  love  ::  want  ::  shampoo  ::  stars  ::  book  ::  hurt  ::  stop  ::  home  :: dance  ::  socks  ::  shoes  ::  wash hands  ::  hi  ::  bye

Gobble gobble...

Oh, the togetherness! Wherever you are and whatever you are doing, I hope you have a wonderful holiday.  May your preparations go smoothly and may there be ample smells of cinnamon, cloves, cardamom, baked apples and pumpkin spices-oh yeah, and turkey of course.  We've had a lot of time these last few years to think about the many things we have to be thankful for.  The courage, compassion and connection in our community are just a few of them.  I know how incredibly lucky we are.

~ "May gratitude continue to take over your heart -- crowding out worry, fear, jealousy, envy, hate and the litany of other useless emotions."

Tuesday Night

Among the Giants

So cool- every adaptive thing made in this video is constructed of cardboard.  Warning though, the video is long.  Who knows, Nanny is a Designer specializing in accessible design and Bop is an engineer?  I think we may just come up with a few "Noodle" projects for the grandparents!  Such simple stuff can turn a hard life around. Very inspiring! Speaking of adaptive equipment, we are going to get Noodles fitted today for the Up n Go Gait Trainer you've seen Cathy Fox, our OT, working with.  It's a dynamic, weight-bearing walker which hopefully will improve his posture and alignment, control & endurance.  We're also in the market for a new bath chair.  LJ has outgrown his old baby bathtub (read, his legs hang over the edge) so we will try out a few bath chairs like this.


Among The Giants from Adaptive Design on Vimeo.

Bravery

A Little Slice of Life

LJ's Play Picnic with Markus, Jeni & Josh_Nov 10, 2010 from Jenn S on Vimeo.

We're all a little sad that Markus had to go home.  Come back soon.  We loved having you here. We promise to have meatballs, spinach and Nutella on the ready for you. (Not all together;)

Seeing the Everyday

ANNA QUINDLEN : Life is made of moments, small pieces of silver amidst long stretches of tedium. It would be wonderful if they came to us unsummoned, but particularly in lives as busy as the ones most of us lead now, that won't happen. We have to teach ourselves now to live, really live…to love the journey, not the destination.

 

In Good Company

We've welcomed Markus to our town. Kicked off the weekend with his first-ever 5k race (we walked so slow I am convinced we came in last place), then he gave a lecture at Walter Reed, then another lecture at Arlington Parent Early Intervention (this link will be posted to YoutTube soon in case you're interested).  We've learned a great deal of how tube weaning works and about Markus- he's quite tall, likes to surf, drinks a lot of coffee, won't let us call him doctor, doesn't like mountains, he has a pension for Chuck Taylors and he has a wonderful sense of humor.  LJ and Nate have made fast friends with the whisperer. And it is clear Markus loves kids.

I made a lasagna dinner last night.  Markus commented that LJ will be a challenge on the tube-weaning-front (he's seen kiddos like this)...and that Josh and I should plan a vacation between now and April because we should be prepared for a lot of tears from EVERYONE during the wean. He asked us to promise that we will make a big celebration when this part of the journey is completed and we finally have an eater.  You bet we will have a proper fete to mark the occasion and Markus and LJ's team will certainly be a big part of it!

Today we entertained our friend Max; the lil guys explored a hard-boiled egg, cantaloupe, veggie sticks, banana and cookies.  Then Markus and I capped off the afternoon with a private tour of the Pentagon. Tonight, Josh will take Markus to Georgetown to have some "guy time" over a beer or two!  To sum it up, its been busy, busy, busy. We're on cloud 9.


Good Company_Markus, Emily, Jeni, Tracy, Max, Nate from Jenn S on Vimeo.

Turning Over a New Leaf

Oral feeding progress has been slower than we'd like. But we're turning over a new leaf. Markus (the tube whisperer) is here- from half-way around the world!!!  Rah Rah Rah...Small world story: aside from the Institute in Berlin, he also has a clinic in Darmstadt, Germany.  Darmstadt is where my father (Babu) was stationed in the army and he worked as a surgeon for the base dispensary. Back to the present, we couldn't find any fairy godmother's for hire, so Markus is bringing his magic wand and I have been quite preoccupied anticipating his visit this week. This visit will be focused on Dr. Markus and LJ getting to know one another and on LJ's team learning what we need to know to prepare him for a tube wean in a few months' time.

Markus Wilken is a child psychologist specializing in the diagnosis, treatment and evaluation of feeding disorders and feeding tube weaning.  Markus holds an M.A. in Psychology and a Ph.D in Pscyhology, both from the University of Osnabrueck, Germany.  He is currently the Co-Director of the Institute for Psychology & Psychosomatics of Early Childhood in Germany.  Markus received specialized training in tube weaning and treatment of early onset feeding disorders at the University Hospital for Children in Graz, Austria.  During his career he has performed extensive scientific research and clinical study in the area of early childhood feeding development.  Markus believes in a team approach to treating weaning tube fed children; this passion has led him to train therapy teams and families (we're blessed to be one of these families) around the globe in his unique methods.

This passion is also what drives him to spend hours on skype with our OT Jeni, or on the phone with me talking about LJ's feeding issues...even when it is 9pm his time, he's worked a full day, and has a family of his own. Markus is truly an inspiration.  We are beyond excited, grateful and ready to learn as much as we can all week long. He gives us much hope and valuable insight that we will one day soon have an oral eater & be able to wean LJ from his feeding tube!

The video is totally unrelated.  But I like it.

Perfect Protest

I just ordered this book:

• Bye-bye perfect, hello_______.
• I am too _______ to be perfect.

embracing imperfection & going with the flow celebrate your everyday life + make sure you are capturing stories that are meaningful to you today connect with other people who care deeply about collecting + celebrating the stories of their lives

Possible :: Impossible :: Miracles

Where Are the Parents?

This poem makes me want to cry.
 
By Sue Stuyvesant, Parent


Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

Sue passed away in October 2003.

So Much Hope and Magic

Night Carpentry: Josh just built this fabulous ramp for LJ after work each night this week!

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!

What You Are Is Special

I saw this Will.i.am song "What I Am" on Sesame Street.  Yes, I get all my new music from Sesame Street.  Go ahead. Watch this and then you can make fun of me if you are not tickled.

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.

LJ + Parties = Smiles

LJ had a nice birthday - the highlight was LJ asking for everyone to sing happy birthday to him again and again. He put in his order for an Elmo party and since I can't say N-O to him I pretty much caved (incidentally Nate put in his order for a Star Wars Lego theme and his birthday isn't even til December!).  The grandparents were all here.  Nanny & Babu came up from Florida, and Didi & Bop, friends and family didn't have an easy task convincing Mr. Noodles that sweet birthday treats are good for the body.  Chalk art, balloons, sandboxes, a new buggy car and gorgeous weather were all a good distraction though.

Mrs. G at school today also had a little celebration for LJ.  We had those homemade pretzel rods dipped in chocolate and LJ tried to stick it in his ear! He had an amazingly good time doing the spider swing with his teacher today, and he also tried crawling over mulch through tunnels on the playground.  Later in the day, Nate joined us to have the birthday snack and help me read one of LJ's favorite stories to the class.

 

Now for the gratitude. I can't believe I have an almost 5-year old and a 2 year old.  Thank you thank you to everyone who emailed and sent well wishes for my little man. You totally rock. It was a good birthday weekend - hope your weekend was fun too!

24 Months of LJ

"There is no chance, no destiny, no fate, that can hinder or control the firm resolve of a determined soul." ~Ella Wheeler Wilcox

It has been a doozie of a year, but Noodles is 2. Every year is different because every year I am at a different place in my life, but I will never forget the day he was born. I am finding new ways to let go of past issues, fear and worry and breathe more fully as me now.  I admire LJ so much for his resilience and determination.  I love him for his sheer joy of little things like music therapy and stacking boxes and blowing kisses. I am in awe of how strong he is and how far he has come. Life has surely challenged his little complex body and I am incredibly proud of the discoveries he's made.  I am so grateful for this next adventure in our bumpy little journey. The world is a better place with you in it!

Happy Birthday cutie boy! I love you.

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.

Take My Hand

It's Not a Box

 

 

Finger Lickin' Good

LJ exchanged food and cooking utensils with his new friend Oscar today!  Not only did he interact with fig newtons again, he explored watermelon and dried apricots for the first time. Get this. He tried to lick, that's right, lick the apricot.  This new excitement has me food shopping thinking about all the possibilities to come! Warning, the video is super long- thirty minutes to be exact. I fully expect any of you out there to fast forward to the good parts.  Happy Friday!

Giddy Up Horsie: LJ's New Ride

LJ's new wheelchair arrived at long last (well, its actually an adapted stroller). It's got all the bells and whistles. Just missing the flames! (Feel free to send us any applicable decals you think his wheels might need) Here's a link to the manufacturer:

Kids F-A-S-T Chair

Noodles was fitted for it back in July and it was ordered early August, and voila. It finally arrived. 26 pounds was getting to be a lot for my poor back to carry. It had also gotten to be too much for the grandparents to hold him. The umbrella stroller we used when running errands and going to doctor appointments just wasn't cutting it for his proper pelvic positioning and support.

We tried out a Kimba and a Kid Kart at the recommendation of our physical and occupational therapists. I liked that they both had high/low bases that could additional bases could be purchased and the wheelchair base kept at home and one for the car.  The base didn't collapse very well and in the end I needed something that would be easier to fold up and put in the car & was slightly less bulky.

The F.A.S.T seat has dynamic shocks so that when LJ goes into his extension, it can move with him, allowing him to return to neutral position when he relaxes his body. The harness is all business and means I can be confident when he is riding around that he won't be leaning forward and tipping the chair over. The chair is one of the smaller bases on the market so it should be fairly easy for me to load and unload into the car. The other benefit is the handlebar can easily be adjusted to different heights depending on who will be pushing LJ. Here's to good seating!

Share With the Class....

So just a brief, little progress report.  I successfully switched out Noodle's ugly Hollister contraption on Sunday all BY MYSELF.  He was a perfect little gentleman and stayed relatively cooperative (ergo he didn't roll over onto his belly during the process!). His hole had closed up beautifully and the skin area around the tube has healed nicely.  I thought we weren't going to be friends again after I ripped the duoderm (a wound dressing that adhered to the skin) pad off his torso.  There really weren't any other options since soaking didn't help and considering I'm the only Mommy he's got.  I replaced it with the new version Mickey button and it has mostly worked out fine. We're still friends.

We had PT, OT and Feeding therapy today.  He totally had a ball at all of them. Below is a video of feeding with Jeni.  He was diggin' on a crumbled up fig newton! So was Tango, incidentally. At one point, LJ even brought the wooden spoon dipped in fig crumbs up to his mouth.  His gag reflex never kicked in.  Total awesomeness!  LJ's food picnic group, Hungry Hippos, resumed last week.  He quickly made a new, curly-headed friend, Oscar.  It was the perfect arrangement- Oscar loved, LOVED loved him some veggie straws so LJ pawned them off on him.  And what Oscar didn't like, Noodles surprisingly did. Such as wet, cold apple slices. Who knew? Mostly he just gummed them.

Stir It Up from Jenn S on Vimeo.

Below is also a snapshot of Cathy working her magic with him at Children's. He worked his tooshie off, but also seemed to be having fun.  The gait trainer she had him working in today is called an Up and Go.  It was a lot more challenging for him than his Pony because it requires him to get his "nose over his toes".  Whenever his center of gravity shifted, the gait trainer would shift his trunk support proportionately.  He dropped to the floor a couple of times to a seated position. He'll get the hang of it after a few more sessions.

Needless to say, he didn't complain about naptime as soon as we got home!!  Me either.  Nate's another story all together....

We're off to school tomorrow and then music therapy.  Fun times, fun times- of course that means that there are so many things it's hard to keep up with it all!!!

Good for My Health

The New MD

"Doctor Noodle"_Keeping Entertained with a Stethoscope While Waiting for another Doctor's Visit

the new get up

We had our second opinion appointment today.  Long day.  We had our appointment at 2pm at Children's Hospital but didn't get seen until 3pm.  There must have been an emergency or something because the medical professionals kept getting interrupted- we didn't leave the hospital until 5:30pm.  On the bright side, the doctor and nurse couldn't have been lovelier.  They determined that increasing the size button or changing the brands really wouldn't change the pickle we're in.  But we've got this dandy new thing referred to as a Hollister clamp (read more information than you care to know about the good, bad and the ugly) and vertical drain tube device that's supposed to help LJ's tube hole get smaller which in turn will get the leaking under control.

The real obvious downside is how unattractive this contraption is.  I'm not sure the ladies are gonna find it quite so "come-hither".  Luckily, it works the same as the button we're used to and we're supposed to be able to switch back in as early as a couple of days.  Until then, we'll keep a mesh wrap around LJ's middle so he doesn't mess with it.

The other bummer is that they used to do a lot of tube weans back when this doc was director of the department.  Unfortunately, they don't do that, since they no longer have an in-patient feeding-based program.

I'm sure there's more I'm forgetting to tell you, but to end on a bright note, the Doc was very open to working with an interdisciplinary team in order to get LJ tube weaned within the next year or so...:)

PS: LJ used his iPad in the lobby waiting room to tell everyone, "Hi. My name is LJ. I need some hugs and kisses." Ridiculously funny!!

Feeling Safe

“Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keep what is worth keeping, and with a breath of kindness blow the rest away.”

- Dinah Craik (1826-1887), English poet and novelist

First Day of School Pictures!

It's a Whole New World for LJ!!!

Emily and LJ at School

Nate and LJ at School (Take Note of LJ's Rockin' New Backpack:)

Nate's 1st Day at Pre-K

Teepee Picnic

Noodles NEEDED to have therapy in the teepee corner today.  So Nate's flashlight and random legos aside, Jeni and I moved in the new bumbo seat for LJ and had a food picnic right inside. I have no idea what's wrong with my camera, but again, I apologize for the poor image quality (and the screaming 5-year-old in the background).


Teepee Party (LJ Almost 2!)_9.13.2010 from Jenn S on Vimeo.

Hello?

An Open Letter to Special Needs Professionals

borrowed from:  www.thecrackandthelight.com

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello...

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well ... you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see ... a confident parent ... or an angry parent ... or a happy-go-lucky parent...

You might think that I understand everything ... or nothing ... or that I have all the experience in the world because I have done this before ... or that I know the rules ... or that I don’t know the rules and that is for the best...

You might believe ... that I am high maintenance ... or overreacting ... or maybe neurotic ... or disengaged and uninterested ... or that I don’t really care ... or maybe I care too much...

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Noggin News + Odds n Ends

We had a follow up visit today with the Neurosurgeon at Children's. All is well and Noodle's noggin is healing well. The displaced fracture will still take some time to heal, or fuse back together depending how you look at it, but as long as we don't see any increased eye tracking problems, vomiting or unusual sleepiness then we are good to go.  His hematoma is completely gone and that part of his head feels normal now. So no more Cat-scans or X-rays for quite a while I hope!

We are still trying to figure out what to do about the leaking Gtube button.  We spoke with one of our doctors who suggested that we shouldn't need to be treated as an inpatient to resolve it.  We're grateful for some creative, new ideas she gave us to discuss with the GI doctor so that we can hopefully shrink the hole and get the Mickey button to fit much more snug.  One is to put a smaller, temporary tube in place of the Mickey button, send us on our way, and let the hole shrink up. Once it gets smaller, we can insert a slightly larger Mickey and then it should be snug as a bug. The other option is entirely change out the brand on the button fitting to something called a CORFLO Cubby button. So we've made a doctor's appointment for later this week to sort that all out and we still have our second opinion appointment for two weeks from now.

In other news, we bought LJ a Child Rite seat. It's like a bumbo seat except it is made with a high back and wrap around support specifically for children with special needs (oh and he shouldn't outgrow it for at least 2 more years).

It allows him to sit on the floor and play independently without his extensor muscles forcing him to arch completely out of it. Noodle's trunk and neck are getting much, much stronger though and it is exciting to see him start to gain better control. Here are the before and afters of him trying to prop-sit on his own.

Toned Noodle

Nate and I had an adventure to Lake Tahoe ("Lake Taco" in Nate's jargon) this weekend. It was for a family celebration and Josh and Noodle held down the fort with Tango.  We had gorgeous weather and all went reasonably well.   The flight out there wasn't particularly easy- we had a six hour delay on our connecting flight. But when we finally arrived at our hotel, Nate was buzzing about the bear-crossing sign AND shooting star he had seen along the drive. And then of course his eyes lit up with excitement at the sight and sounds of the slot machines at our hotel's casino : ) Lots of fun was had by all.  The lake was beautiful but unfortunately I forgot my camera, so I apologize for the poor picture quality I captured on the cell phone.

Nanny and Nate at brunch

Nate and Cousin Asher on the Heavenly Mountain gondola

Preschool starts next week! LJ is going to go to the same preschool as Nate. It'll only be for three hours twice a week, but we're thrilled about the friends and experiences (and new music content D ) he'll gain.  It's LJ's first time in a social setting like this, he'll be the only child with special needs in his class, and we are all beaming in anticipation. He'll use his gait trainer to get to and from music, the bathroom and playground etc and the new child rite seat for circle time and free play. Either his caregiver, Emily, or I will accompany him throughout the year. Despite how hard it may be for me at times (it's hard to not make those comparisons when there are other able-bodied wee ones in the same room), it will be SO fun for Noodle. But in the meantime I've been preparing myself before going in. Can't wait to get into something that resembles a routine!!