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.

Many Thanks

we are thankful. lewis seems to be doing better- that and he slept through the night last night. finally. thank you.

nate is giving thanks that mommy was distracted while baking their cake for the holiday;) josh is giving thanks that lj let go of his death-grip on daddy's curls. everybody is doing better. we are thankful for all our family and friends for helping us get through this past year. we are so thankful.

Talking Turkey!

Here we go again! Noodles is on a different antibiotic. The sensitivities came back and there was a third bacteria resistant to augmentim. We'll be spending the holiday with Josh's side of the family. Good times. One year ago Lew spent this holiday in the NICU; I think it's fair to say he has NOT had any withdrawal symptoms. We just hope we stay far away from any hospitals this holiday! May your turkey be moist, your mashed potatoes lumpy, and your belts loose.

We feel grateful

Update

Just a quick update as many of you are wondering how the little man is doing. He is in such pain and has cried so much that his little voice is hoarse. It is so unnerving that I have to hold my baby in my arms, forcing the feed into his belly and I'm completely helpless to make him more comfortable.

The culture came back positive for a strep & E. coli infection. It makes sense, since his button leaks so much and the gastric juices have pretty much kept the area of skin around the button moist since the first case of cellulitis reared it's ugly head. As if we haven't waited long enough, we are still waiting for the sensitivities results before we can treat it effectively. In the interim, we have started a dose of Augmentin (a form of amoxicillin) and he's back on Carafate (coats the stomach lining to heal gastritis). If the lab tells us the sensitivity results and this strain of E. Coli and/or strep are resistant to Augmentin we will have to get him on a different antibiotic stat. He's still taking his usual prevacid (for reflux) and of course the round of Tamiflu that was started this weekend. We've been treating his fever with alternating Tylenol and Motrin. It's just a pharmacy here in Arlington!

There is a possibility if the cellulitis cannot be controlled that he will need to be admitted to the hospital for I.V. antibiotic treatment. We're hoping to avoid any hospital visits this Turkey Day. However, if it becomes the worst case scenario at least it can probably be a one day thing. We are also taking him to the surgeon next week to see whether the actual hole for the button needs to be surgically revised....since it's been causing so many problems. Think healing thoughts for Noodles.

Bumpy Road

we've been busy with an over-scheduled week. we keep pushing on but it gets so overwhelming sometimes when life on a daily basis becomes so exhausting. everyday this week, noodles had three doctors/therapy appointments. yikes! meanwhile, nate's teachers had some conferences so there wasn't any school for two of those days. luckily bop took nate to the playground one of the afternoons so he could run all his silliness out. and the other day some friends of his had a playdate and then he want over to "camp didi/bops". and i've been campaigning to get the state program to order and pay for some therapy equipment for lj (before they all leave on vacay for the holiday next week). it was prescribed by Children's hospital and the other therapists who work with us also think it would be highly beneficial to have this equipment assist us at home. but it's really expensive, about $1,000, so hopefully we can get it covered by the assistive technology fund. a minor victory i did manage to forge ahead with the bread chronicles and make this yummy brioche recipe.

i got conflicting news about noodle's GI issues this week from the folks at CNMC in DC. they don't think he is a candidate for the feeding program at Kennedy Krieger up in John's Hopkins. who knows if this is just chalked up to being competitive hospitals or if there's merit in their opinion. but CNMC thinks Kennedy Krieger puts all the emphasis on desensitizing children to oral feeding so that they can increase the volume of feeding nutrition. this is not helpful in the long-term because they think kids like noodles will still have feeding disorders due to the fact that it doesn't teach them to enjoy food. we'll still go to the evaluation at kennedy krieger for the evaluation in a few weeks to hear what they have to say.

yesterday brought about more health worries for lewis. we thought lj's cellulitis was gone but since friday night it has gotten a lot worse and he's done with the keflex. he has had an on-again-off-again fever (usually around 99.5) but yesterday he spiked a 102.5 fever and he had diarrhea. the skin around his g-tube button was bleeding enough to saturate the dressing, go through his shirt, and then stain my shirt. all of this has made him extremely fussy. he also hasn't slept well in a few nights and we can't seem to make him comfortable. he and i headed into the urgent care center around 3pm yesterday so that we could be certain there was no ear infection or strep infection. the on-call doctor took a skin culture so we won't know for sure whether the skin infection was a strain resistant to the Keflex or what not. and due to the high fever and the fact that he didn't have his H1N1 shot yet, he was prescribed Tamiflu. It's really quite foreboding.

we'll see what tomorrow brings. hopefully it's not anything to be worried about and a different antibiotic won't be resistant this time & lj's fever/stomach thing will be just a fluke. but this week promises to be another bumpy ride. we have an appointment with the eye surgeon to see how his eyes are doing & a follow up appointment with the neurologist. we are going to the GI clinic to check on the current cellulitis situation and discuss his nutrition with the dietitian. we're waiting to hear the results from the skin culture any day now. and if he is up to it, he will go to CNMC for his weekly feeding therapy. thinking of the yummy food at our Thanksgiving feast & relaxing with family will definitely bolster my ability to focus and get through these trying times.

Scenes from the Un-Scheduled Weekend

Cellulitis update: Lewis finally seems to be feeling better. After running out to pick up a steroid cream Thursday night (which didn't seem to help) I insisted the doctor needed to take another look at him on Friday morning. I'm so glad we did because he gave us two good suggestions which seem to be helping it heal. The first, to add 2 ml of water to the balloon holding the gtube button in place. The second, to absorb the leaking bile with an I.V. drain sponge loaded (looks like this:
with the steroid cream and calmoseptine cream and secured around his gtube either with tape or this white, webbing stuff that fits around his torso. Nate asked what the webbing was- we told him his brother was spider man:)
General announcement: After getting pretty banged up a the bowling alley this week, Nate had developed close ties with Motrin and Tylenol + the portable DVD player! Long story short, Nate was crying over his spilled lemonade when he threw a monster tantrum leaving the building. He lost his footing and fell down the steps- bashing the back of his head on the pavement. There was an instant goose egg and a little blood and a whole lot of crying. Luckily our doctor's office is only two blocks from the Bowl America and off we went to make sure he didn't have a concussion. At the end of the day, we were all emotionally and physically exhausted. He's now healthy and looking forward to going back to school Monday morning.

Fussy McFusserson

So Noodles has been quite the fussy boy as of late. I changed his button all by myself last Friday (go me!) but was worried that his skin around the button was looking a bit irritated by late that night. All weekend long I applied bacitracin to try and get it to heal. He was also running a low-grade fever of 99.3-99.7.....so i wasn't shocked when the pediatrician wouldn't give him his RSV shot yesterday (since LJ can get pneumonia easily we've gotten approved to have the RSV shot each month during the winter season so this was a routine schedule appointment). In fact, she confirmed that he had cellulitis. If we gave him the shot, his body was trying to fight off something and the respiratory vaccine would most likely be ineffective. So off we went to the GI doctor to confirm our fear.

For me the highlight of the description linked above is "left untreated, the spreading bacterial infection may rapidly turn into a life-threatening condition."

I guess now's not the time to get all hippie health food with the homemade carafate paste and hot compresses. My initial response is always just to let things run their course, but when running its course = death, I have only the mommy worry to thank for the motivation. Thank goodness for heavy-duty antibiotics like Keflex! At least we got the go-ahead to give Noodles probiotics in his formula everyday. Hopefully that will help balance out his digestive system with 10 days of antibiotics. And we've deferred the RSV shot until next week.

On A Roll

Roll 'em, roll 'em from Jenn S on Vimeo.

Trick or Treat

Better late than never, right? Our fun neighbors had a block party. Besides the rain, we all had fun (especially me raiding Nate's loot: lemon heads are too spicey for nate the grape!). Oh yeah, and the travelers whilst trick or treating:) Sugar high? Yes. Glad it's over? Yes. Sunday was mellow and the kids cooperated.

Lew was an elephant and Nate was a wizard a la Harry Potter.I like peanuts!

I like lollipops!

Checking In

Here's a video of Lewis standing tall-WITH SUPPORT. He really prefers to be upright. His legs are quite strong; now if we could transfer some of that love to his abdomen maybe we could get him to sit independently:) That giant blue band aid on his tummy is Kinesio tape.

Hot Stepper from Jenn S on Vimeo.

Here's another shot of the cutie patootie completely exhausted after a session with the feeding specialist at Children's Hospital. She made a comment to me that has really stuck in my brain. And that is that Lewis is a smart child. "The hardest part will be to strike that fine balance of focusing on his physical limitations and keeping up with him intellectually." As if I don't have enough to worry about! She doesn't think his hand splints (Beniks) are doing anything (actually only impeding his ability to hold things)...not even wearing them at night... so she tried to Kinesio tape his right hand for comparison next week. It is less bulky- I'll give her that.

I can't bear to see him get frustrated because he is unable to do things because of his body. It was kind of a tough blow even though I fully understand and believe that our prayers were answered. Yet these prayers are so different from last year. I realize that we didn't expect (though we did pray) for a complete miracle cure a year ago, but we hoped and wished for LJ to have a good cognitive outlook. We told ourselves we would figure things out with a physical disability. We've done our happy dance since things look to be good and now we want more. You are never really satisfied I guess.

On a lighter note, I don't have much more to report. We did have a positive visit with the GI doc who said Noodles needs a larger button. It might help him feel more comfortable in a seated position too. I will be putting in the new tube all by myself once it arrives...go me! And another minor victory!! I got the doc to write us a Rx for silver nitrate sticks. These are what the nurse uses to clean the granulation tissue around the feeding tube. We had to go into the office on a weekly basis to have this done- so now we will save ourselves a lot of time and hopefully keep the germs at bay!!

Baby Steps

This morning during speech therapy we did a sweet potato "tasting". The sweet potatoes are the last from our organic farm share (unfortunately they do not do a winter crop) and I melted some butter with them to give 'em added umph! He recovered very quickly from his gagging impulses. Two very sweet pictures are below. Lately, he's also been a stinkpot- knocking the bowl of food onto the floor which makes a really big BANG that seems to delight him. It's as if he's saying take that, food!
Have a happy weekend!

Just a Little Bit More

So far this has been an exciting week and a half. Noodles had some shots stuck in each leg last week & three vials of blood drawn and quite literally never stopped crying the rest of the appointment from it. This was the first time I got a glimpse of what it would be like to have a baby in my life that cries non-stop. I needed to be nursed back to life because my nerves were frazzled and I was just emotionally drained by the time I buckled Lew into his carseat. Two technicians tried to get the blood work drawn up, collapsed the vein on his right arm and finally moved to the left arm. We should all be rewarded with bottomless glasses of wine, undisturbed naps and massages at our every desire because baby screams pack the nuclear punch.

Our little guy has also finally decided to allow his teeth to come in ... TEETH ... not tooth! Last night and this morning we endured the rather painful process of 2 teeth as they made their debut. Hello drool soaked everything. We have been awakened in the middle of the night for several consecutive days now. Tonight is a little better for him, but we are not out of the woods just yet!

He's also adding to the daily repertoire of things he can do, more rolling onto his back, tons of bringing hands to mid-line, dropping all his toys from his highchair tray onto the ground, a lot of weight bearing on his forearms, making new sounds and definitely vocalizing his objections. Lew is still really delayed so I am cautiously optimistic. The new feeding specialist at Children's Hospital put Kenesio Tape on his abdomen and back (first she shaved his back fuzz to spare him any pain when it finally gets taken off. He's his father's son, just kidding. Considerate of her, right though?). Basically, since his trunk is so weak and LJ tends to also hyper-extend his back when he is uncomfortable the therapeutic tape acts as a cue to his musculature. It's incredibly fascinating stuff and he looks like a big blue "X" marks the spot on his tummy. Guess it coulda been worse...what if the tape only came in the color pink? It's water-resistant tape so we went to Aqua Therapy the next day and drew quite the looks. wink. wink.

Oh yeah, and the GI folks have changed his Rx formula yet again....I am pretty sure this is change #5. Now we are giving Elecare a whirl. It is for children with "serious feeding issues" according to the "label". But we HAVE noticed a decrease in retching so we'll take what we can get. We've increased his tastings to include four foods: homemade pureed sweet potatoes with butter, avocado, banana and yogurt. I've also been able to thin those out significantly so we can squirt them through his feeding tube and his digestive system will get all the added benefits. Feeding is still a battle that we haven't won yet, so we've applied to the program at Kennedy Krieger. We got an appointment for an evaluation in December. That's all I can think of for now.

the best part.

I think he really enjoyed that cupcake.
In fact, some icing may have made it into LJ's mouth before it made it on to his cute outfit.

LJ even got to visit with NICU nurses Bridget and Kira.
Bridget escaped the camera too quickly but he swears he didn't cheat on you! And here's Nate manning the "ball pit".