Twenty 10

Hope you all had a fantastic 2009 and fingers crossed that 2010 brings lots more good memories. Wishing you laughter and cheer all through the new year from our home to your home!

If....

If there was a therapy of the week club, we would be sure to join it. Did I mention that this post might be all over the place? We've just scheduled Noodles for his first HBOT session. Hyperbaric oxygen therapy is a pressurized chamber where LJ will sit while pure oxgygen is administered.

All our research concludes that there may be significant upside, even though that's based on anecdotal evidence (it's also hard to trust people when there are so many people scheming against parents who are just looking to heal their child). The downside, even according to skeptics, seems to be that we may be flushing our time and money. No different than the downside of any other therapy, when you get down to it. Since the cost and time commitment are not (terribly) prohibitive, the anecdotal evidence is compelling and the consensus seems to be that we will at least do no harm, we've decided to go for it. Perhaps in the near future there will be proof that it works.

The chamber looks like this except I'll be able to hold Lewis during the treatments and have to drive him back and forth to Rockville for 40 sessions. We are beginning on January 12th.......

I know that we can't waste time thinking about the future. But I feel so much better knowing that we are doing everything we can to give Lew a better life. If this works it might mean he doesn't need a wheelchair. Or it might mean that he won't have speech problems. Or it might mean that he won't ever need eye surgery again. We're not overly optimistic but we feel it can't hurt to try what's out there. We'll post again with pictures and updates when we've started. As you can imagine we are very anxious and nervous but at the the same time we're pretty excited about the what-ifs.

We've also hired on a musical therapist who will help us reinforce the speech therapy goals through melody and the occupational fine motor goals through the use of instruments. I can't carry a tune, and though it's nice that our friend Bubbe offered to skype with us and sing showtunes (her favorite not mine), we thought we would try a licensed music therapist. It will hopefully be a lot of fun and not seem like therapy to him. His determination and courage amazes me, but some of this therapy has got to be fun. Music therapy has even been shown to reduce pain- so at the very least we can help LJ get through retching through the use of music. Who knows, Nate might be joining in the jam session with us once we get familiar with everything. You can check out musictherapy.org for more information.

And Lewis has still been trying to flip and roll from his back to stomach alot. He's also trying to walk with assistance. So we "test-drove" a gait trainer and we are trying to work the system again so that he can get one through early intervention. It will help him learn to distribute his weight more effectively so he can start exploring things and gaining independence. Here's the ferrari version our therapist hopes we get because it has more of a cause-effect relationship with weight suspension. Up and Go Gait Trainer There is also a possibility of getting a hand-me-down version of this one depending on what the PT thinks...and obviously this would be the most feasible version http://www.adaptivemall.com/ponysize0.html Its nice to think about the little boy who used to need this- he no longer needs it as able to walk independently. I dream about those days.

What therapy is next? Anat Baniel Therapy also known as ABT? One never knows!

Nor'easter

We had a family trip to Florida last week. We were pretty lucky to get stuck there because of the blizzard in Virginia and DC-our flight was canceled the previous day. We busted out some boardgames with the cousins, had a sleepover too, spent lots of good time eating yummy food and fit in trips to the beach, aquarium and playground.

When we were coming home through the airport yesterday the security lady asked Nate what his name was. He replied correctly. Then she asked him what his little brother's name was. She examined the ticket as he responded "Noodles". We had to prompt him to proclaim his real name. As you can tell, they let us on board. The kids did great on the airplanes. When we got to Dulles Airport, there was a plane that got stuck on the runway because of the snow. We had to wait a very, very long time to get to the gate. And then we had to wait even longer to get our luggage- needless to say the airports were a zoo. Nate wanted to go immediately back to Florida. LJ finally had passed out from exhaustion in the Ergo carrier!

The punk lovin' the shades

Such a sweet moment with Nanny

I'm in complete love.

getting some awesome quality time in with cousin L

How to make homemade sugar scrub:)

If you close your eyes and pretend that you're back at the beach, you'll actually be there!

and this is what a blizzard looks like around here....

Babu Helps LJ Roll With It_December 18, 2009 from Jenn S on Vimeo.

"Party Tricks" video taken by Uncle Ryan because every time I would be near him

LJ got performance anxiety

my entire family

Thanks Mom and Dad for having us all!

Big Gulp...Testing

So what's causing Lew to not be able to eat? They did the modified swallow study, upper GI and button test yesterday so we could see how LJ's mouth, throat and esophagus behaved while eating and whether the Nissen was still intact. Didi and I went with LJ while M, the nurse aide took Nate to school and Bop did pick up since it was sure to take more than three hours. I am also so glad our speech therapist offered to join us as well because I had been so anxious about getting Noodles to swallow enough to get any results from the test. (LJ previously had a lower GI test back in May so we knew already his intestines and stomach empty normally). However this GI test proved that the Nissen is still holding up well. Through the modified swallow study he was next able to sit in a feeding chair, sit and eat pureed avocado that I brought ("honey" thicker consistency and "nectar" thick consistency) mixed with barium. It was not a pleasant experience for any of us… lots of coughing, gagging, and crying (screaming). He did okay for the first three bites but either through fatigue etc just brokedown afterwards. Luckily they never subjected him to loose, wet liquids. Unfortunately, he did aspirate, which means he has mild dysphagia (food-sticking) and he is at risk for aspirational pneumonia.

There was a lot of medical speak that came out this x-ray, but what we took away from it is that Lew's swallow pattern is abnormal though the actual anatomy of his mouth and throat is normal. In the end, his anatomy just doesn't work the way it should. They showed that his esophageal flap wasn't protecting his airway and the barium mixture just pooled in his throat until he essentially must feel like he has a foreign body in his throat. There isn’t any obstruction or any foreign body hindering his eating so the consensus is that this is probably a neurological function (specifically, the pharyngeal phase of swallowing.) At least we now know to be extremely careful with oral feeding attempts because he could get really sick. It also indicates to our therapists that they need to adopt some cold therapy (a tiny laryngeal mirror that is similar to what dental hygienists use) to help sensitize the back of his throat in order to become better aware there is something there and in the end, organize his swallowing and protect his airway. We also have to use thickener such as rice cereal or "SimplyThick" food thickeners so that he has time to react.

So what do we do now? I suppose that's a question for another day.

Lots more practice which we hope will be at the Kennedy-Krieger soon! The Kennedy-Krieger recommended he come on a weekly basis as an outpatient for oral-motor and behavior therapy. There is a three-month wait list for that. So it's hurry up and wait, but at least I feel glad they didn't outright say he wasn't a candidate. The nutritionists, nurses and staff were all very professional and I feel like they really got a good glimpse at our feeding routine. The drive isn't fabulous but the facility is nice and at least we won't have to uproot the family for too long unnecessarily. He's just got to wait 6 more months before he might be admitted into the intensive 4-6 week-long inpatient feeding program. They want to maximize his potential by working on basic skills before we go full throttle...even more so now that we have the information back from the swallow study.

This Boy

"Noodles wants to make sure nobody forgets about him!" So incredibly true. But this also made me realize there is another little boy who lives here, who scrambles to keep himself heard above his retching, wails and feeds.

He has his moments, but most of the time he's such a good boy. He loves legos, cars, police, firemen, dragons, knights and c-h-o-c-o-l-a-t-e. He has a huge soft spot for "words", Curious George rainboots and of course his life partners (Giraffe and Backup Giraffe). He's at a great age; he's old enough to be really excited about learning and life (he asked me the other day when he was 18 if I would let him drive my car! When I replied of course, he responded 'well then, I will have to get my own car), and yet not old enough to not be excited about these things (to which I responded 'well then, you'll just have to get a job'. Of course I want to give him the world:). Do you know what I mean?

No matter what or who he becomes, where he ends up, somehow in some way he is sure to put a smile on your face. That's just what he does for me. Happy birthday big guy! We love you.

Desperately Seeking Sanity

Trying and get LJ ready for the feeding evaluation at Kennedy Krieger Institute tomorrow we stripped him down and spooned out some yummy chocolate pudding on the high chair tray. We were curious if he was not being forced to eat it, and it if we could make it his own idea, perhaps the chocolate would go from his hand to his mouth to his stomach. Tragic turn of events as you see here, that's not the case; he doesn't even want to eat if it is chocolate being offered. He was upset from the moment he touched the cold, wet pudding. Luckily this was Nate's idea of heaven and he finished off LJ's chocolate pudding straight from the tray no spoon required...he's a serial chocolate eater! And then they both got hosed down shortly thereafter.

Wonderful Wintery Weather

It always seems to snow on December 5th. It didn't fail this year - and it was wonderful. We loved every second of this cozy weekend. Now we're gearing up for our hectic week of Kennedy Krieger feeding evaluations, GI studies, gtube placement checks & swallow studies. Oh what fun! Well, at least the light at the end of the tunnel will be Nate's bday.

King Lewie

Noodles' New Throne from Jenn S on Vimeo.

So this is some pretty big assistive equipment for our little king. He's enjoying the new posture system and hopefully it will give him better pelvic support so he can start learning to move the right muscles. We somehow managed to get his new throne paid for entirely by Arlington County's Parent Infant Education program- go Mama!!! And it's a good thing since it was more than 1k.

Giant Steps

Songwriter, Craig Bickhardt, who's written for Ray Charles and Johnny Cash, has a little boy, Jake, with Cerebral Palsy. He wrote a song for him called "Giant Steps," and it's beautiful. Here's one part:

Taking giant steps, giant steps
A leap and a bound barely touching the ground
Time to stretch those wings, try new things
Learning to reach for your best
Taking giant steps

Soon the day will come when you’ll run ahead of me
Certain of yourself and what you’re gonna be
But whenever you stumble and lose your stride
May you never lose the boy down inside
Taking giant steps

You can download it free here.