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