Life Is Good...but SO Full

LJ's New Shades

We're here.  It has been a busy April.  Nothin' major to report.  Just the usual with the two kids, therapy, doctor appointments, after school activities, IEP meetings, traveling etc...

Lewie is gettin' good at driving his power chair.  No more banging his head.  He sleeps thru the night every couple nights or so.  The trick was a combo of 3 mg extended release melatonin & a regular 3 mg tab of melatonin at bedtime.  But...it could also be due to the addition of a new medicine LJ has started taking which has a drowsiness side effect.

We met with a new Pediatric Neurologist at the beginning of the month.  And she gave us lots of nuggets of information.  She recommended we try Baclofen for LJ's fluctuating tone and muscle discomfort.  NIH says Baclofen can be used to act on spinal cord nerves and reduce the severity of muscle spasms.  Dr E also referred to his particular type of CP as "Choreoathetotic".  We'd heard he was dystonic but this was a new term to us.  I googled it and the definition I pulled up was "a form of cerebral palsy characterized by choreiform (jerky, ticlike twitching) and athetoid (slow, writhing) movements."  Sounds sorta accurate but its just a label and I've dropped those. 

The Phsyiatrist we see for his physical medicine/rehab wants to try another Botox procedure (for LJ's right wrist flexor, right pec major, and right calve) but the neuro thought we might have longer term progress with the oral medication. So rather than put him under anesthesia again, we will see if the Baclofen helps. He is on a low dose and we may consider increasing the dose with time.  In the meantime another side effect is seizure, so we are closely monitoring him.

The dentist reported that LJ has no cavities! The Developmental Pediatrician was also a good visit.  We discussed LJ's sleep issues. He prescribed a sleeping medication if things get particularly bad and the melatonin doesn't help enough.  But we really have tried not to use it.  It's called Clonidine and it's typically used to treat high blood pressure but drowsiness is a side effect. The Developmental Ped also said another medication to consider down the road might be to treat anxiety.  He could see that LJ has lots of worry and given his overall picture it might help reduce his anxiety.  Rather than Ativan though he would like to see him on Intuniv for antianxiety/antidepression.  When he's a little older we may explore a play-based psychiatrist for LJ have therapy and determine what is the right route. 

Ophthalmologist says Lewis' eyes look healthy, nothing wrong with the integrity of the actual eyeballs.  However, I had sent her a video because his right eye was overactive and floating up a lot. She had us come in for an exam.  She says it's not uncommon with kiddos who have had strabismus early on.  She calls it "Dissociated Vertical Deviation" or DVD.  Here is an interesting article outlining how DVD has eluded explanation for over a century!  The doc advised that this is really more of an aesthetic thing and that while surgery would indeed correct it, the problem never goes away and would need to be re-operated on in the future.  When given the old "What would you do if this was your child?" she responded that she wouldn't operate until it was cosmetically necessary or LJ had formed an opinion on it.

In other news, the lil is farsighted!  He needs glasses.  He has trouble seeing things close up- which starts to make sense regarding his iPad and inaccuracy clicking buttons in PQ2GO. He chose his own glasses and very much enjoyed shopping for them.  It was between round blue ones or squoval (squarish-oval) green ones.  At one point he got so excited he knocked my bottled water all over the display.  Fun times.  At least it was only water.

I had a getaway to NYC for a night to celebrate Nanny's birthday.  Josh manned the fort.  I had the most amazing time eating good eats, laughing lots, celebrating my mom, sleeping in late, a nice little massage, and a play off Broadway.  The kids were all adorable when I got home.  The whole fam damily went home to Florida for my nephew's bar mitzvah this past weekend.  He did so amazing.  Didi and Bop came along for the fun.  We had lots of bribing going on to get big brother to wear his jacket and tie for the festivities.  First it was a choice between wearing his jacket or his tie.  But then just to get him to wear one, we negotiated for Nate not to have to wear his dress socks.  In the end, the boys looked like little mini men and we had such a wonderful time with old friends and family.  But trips are always lots of work.

On one final note, we have some bittersweet news.  We have decided to sell our house and look for one that is more handicap accessible or can be made more accessible.  We've chosen the end of the school year to put our house on the market so that we can use the summer to find a place that works for us, hopefully very close to where we are now.  But its been crazy, crazy, crazy busy trying to get the house ready to go on the market.  I hope you all are not as pooped as I feel after reading all of this.  That's my story and I'm sticking to it.

Balance and Other Matters

Wow, I have to apologize for the long time since I've posted a blog entry.  Why wait to live life right?  We're living it now.  Let me reintroduce ourselves and give the LJ fan club a teeny, tiny update on the progress and challenges we've faced this past month. While I feel like I might be juggling most times, I have come to realize I am really, really juggling all of the time. Life is all about the art of a balancing act...

With the start of school for both boys..... new routines have taken shape (I can thankfully say this finally).  For me, I've also squeezed in some additional yoga teaching which I am still absolutely loving.  I have so much deep gratitude for all that this opportunity has afforded me- more awareness, appreciation, stillness, presence and reflection.  There is almost no end to the positive things. 

Still, some things remain frustrating.  We're still fighting with our insurance companies over one thing or another- from picking an occupational therapist that is not 15 miles from our home and also that is handicapped accessible...to payment for the power wheelchair which we finally got at the end of the last school year.  One thing after another.  { So side bar here, if you live in the metro area and take your child to Children's National Medical Center for therapy, one word of warning.  They can discharge your kiddo from therapy even if their goals have not been met; on account of their long, long wait list!  It's crazy to me.  Anywhoo, that's the reason for trying to find an acceptable alternative to the pediatric OT situation }  Doctor's appointments to therapy sessions to my own doctor's appointments followed by a rather large speeding ticket ($200=lead foot) in order to get there to said appointment on time in DC rush hour.  Ouch, that hurts!

The motorized chair is coming along.  Conflict enters the equation again though.  Are we doing the wrong thing when we promote LJ's use of the power chair?  We feel torn that we are not working harder on his gait trainer and walking abilities.  We sometimes feel that the incentives are not inline.  Nonetheless, LJ is enjoying the chair very much!  In typical toddler fashion he doesn't listen when we tell him to stop, danger might be looming.  He is a dare devil, often heading straight for the steps despite a ramp being several feet away.  His left hand is the dominant hand so the joystick to steer the chair is on the left side.  LJ also primarily signs to us with his left hand, so that makes for lots of stopping and starting.  We also got a new articulating arm extender gizmo that connects the iPad to the chair.  Suffice it to say there is a lot going on with the wheelchair and it takes a very long time just to get from the school exit to the car, with all the signing, and attempts to self-regulate the chair speed (LJ has learned how to use his pointer finger to switch the chair speed from low to high).  I will post a video soon but this teeny, tiny post is not so teeny, tiny.

Right arm/hand mobility:  We are still trying to resolve his right arm tension and since the DMO (dynamic movement orthotic) glove was not successful we've recently gotten a splint for his right elbow to stay extended.  We chose cast material over splint material since little Lew is a bit of Houdini and gets out of every splint that's ever been made for him.  He was given a color choice so he picked blue and promptly came home and had good friends Anna, Nate and Hannah sign his cast.  Still doesn't seem to do the trick at least from a therapeutic sense. Too much fisting is still going on with it ...he's supposed to wear it at night but its a full-on cast...don't see that happening in our future. 

Mobility/gait:  Rt foot is turning out onto the outside edge when he walks with assistance... we recently had his foot orthotics adjusted and he walks better if he wears them.  His hamstrings are very tight too.  Who knows, perhaps LJ had a growth spurt setting off the change in his weight bearing, but we're keeping a close eye on him.  We've submitted a letter of medical necessity to our insurance company appealing for a new walker.  Hopefully we should get it approved.  If so we'll be ordering LJ's new gait trainer, a "Mustang".  Why are all gait trainers named after animals?

Good fun:  We had a one night sleepover with Nanny and Babu so Josh and I could go to a wedding overnight in NYC.  I felt kind of guilty when I was away, thinking about how I shouldn't have left the kids on such a busy weekend...but it was so nice to relax with Josh on the train, take walks window shopping in the city and eating good eats.  Thank you so much to the extraordinary Anna and Caroline for alternating shifts during our absence to hold down the fort.  And as always to Didi and Bop for all their helpful assistance with pick ups and drop offs.  Here is one of the activities Nanny did with Play Food.  LJ and Anna's project are the eggplant penguins...Nate's is the the monster truck made from green peppers.

Communication program PQ2Go:  Oh! Somehow, very inexplicably, it was deleted on our weekend away.  No idea what happened to our back up copy...but long story short, LJ was frustrated about getting a thought across and I could not figure it out.  I tried to resort to PQ2Go only not so fast.  It was completely gone.  After much frustration trying to find it, contemplating perhaps rebuilding it, or maybe see if we could copy the school's PQ2Go version back onto ours.  Two days later, the lovely Bridgid from school was able to sync up the school's version of LJ's customized communication. AWESOME. 

And a major milestone- Lewis turned 4 today! We had a bowling party for his class friends and friends from outside of school.  Uncle Jon and MJ (Josh's uncle and aunt) were visiting from Massachusetts so they got to participate which was good fun.  I'm not sure who had a bigger blast.  The adults or the kids.  I got a strike but it was only on account of the bumper guards!

Nate's newfound love is fishing... Here's evidence in his latest art project (not for school.. but just hunkered down at his desk).

He's had lots of soccer games and birthday parties this month.  Yesterday I chaperoned his class field trip to the fire station.  It was awesome to see such inquisitive, polite kids.  One boy asked what the firemen used the ax for and the man replied, "if the fire's getting really hot, we chop a hole in the side of the house to let the heat escape." The boy responded with another question, "and then who puts the house back together?"  Hah, that's someone else's job.  All the adults had a good chuckle.  Oddly enough (or maybe not), Nate was most impressed by the ambulance.  He told us he liked the stretcher part that hooked onto the back of the ambulance and had a hydraulic lift to move it up and down.

Annie is adjusting well to living amidst the chaos.  Nate just adores her and I love watching the two play.  He gives her giant hugs when he gets home from school and Nate has also enjoyed playing tug of war with Annie and her rope toy.  Most often Nate follows Annie around the house trying to get her to obey his commands.  Or he winds up laughing so hard he falls over when Annie gets hyper after her walks and tears from one end of the house to another.  And that's the current news by us.  Hope you are all doing well. I'm going to sign off as the utility company is doing some work on the transformer box & I've just been informed that I will lose power for the next three hours.

Hospital Hopping!

Last week, Noodles had oral surgery at Children's Hospital.  This week we stayed on our side of the Potomac River - which did at least allow for a more pleasant wake up time.  It was also much easier to get him home smoothly without any snafus.  LJ had successful stomach surgery this morning at Fairfax INOVA Hospital to surgically close up his stoma on his belly.  I think its fair to say no one in our family likes hospitals very much.  One can tire of trips to the hospital- for us they seem like flies on vinegar, and recently have been occurring far too regularly.  Although these places are filled with smart, caring, helpful doctors and nurses, the nervousness and germs surrounding hospital stays are never enjoyable.

Surgeon A had to detach LJ's stomach from the abdominal wall. In medical terms this was what is known as a gastric fistula.  Its also pretty common in people who've had gtubes for extended periods of time.  So there are some stitches that will dissolve on his stomach and abdomen.  There are steri strips on the prior incision which the doc was able to reuse and then they had to use actual stitches on the stoma from the gtube on the exterior of his tummy.  Those exterior stitches will need to be removed at the doc's office in two weeks.  He got a dose of morphine at the hospital before we were discharged and we are filling a prescription for Tylenol with Codeine as I type this.

No baths for three days- which is NOT gonna go over so well with LJ. We'll cross that bridge when we get there. Funny thing from the whole experience today, we learned that Lewis is a stern task master when it comes to his song selection in the recovery room.  His playlist did not deviate from Wheels on the Bus, Itsy Bitsy Spider, Twinkle Twinkle Litter Star and Happy Birthday.  Adult music was utterly unacceptable.  With all due haste, we are ready for life to turn back to normal and a speedy recovery.

Suffice it to say, when LJ is feeling up to it, it's All-You-Can-Eat-Sauce Day!  Applesauce for breakfast.  Applesauce for lunch, snack and dinner.  Whatever my little man wants.

We Survived the Dental Work

Earlier today, we arrived at Children's Hospital in DC for LJ's dental work.  Dental, of the teeth variety...not trim.  General anesthesia worked like a charm:  X-rays, 7 cavities and 1 sealant (all the other back teeth weren't healthy enough for sealants) later, we are all home and recuperating.  Luckily, the dentist didn't have to extract his eye tooth or even do a root canal to it.  They did use a white filling, however, so it won't show. That's not so say he's in the clear...in the future he may need the root canal before his adult teeth come in.  They also warned us that now that LJ is eating we have to watch out for cavities in between his teeth now that his teeth are all touching.  But hurray no more teeth pain! Lewis has even flashed me his toothy little grin a few times today so I can vouch for him!  Next up, surgery this coming Tuesday to close his stomach properly since it's leaking still.  And in case you are wondering, no the surgeons couldn't operate at the same time....different hospitals, surgeon's privileges, cross contamination or some such!  Oh, the fun never stops ;-)

Behold the Power of a Motorized Chair

Hi all.  LJ's dental surgery is now on April 18th.  He has to see the GI surgeon this Wednesday because his tummy looks a little angry at us, and because it's still leaking.  In the midst of all the family visits and surgery scheduling, we also finally got LJ's Power Chair yesterday!!! While its a long time before LJ will be cruising in it on his own, he is one proud 3-year-old dude.

He will get the hang of the joystick in no time- a 2 1/2 year has mastered the art of driving one of these bad boys so LJ will definitely be able to within time.  He gets a little bit of an evil Knievel streak in him - one of the first times he was in the power chair he was pushing the joy stick backwards and it kept going backward and sort of jossled LJ around in it once backed up to the wall as far as he could go.  LJ giggled, seemingly enjoying his joy ride, and continued enthusiastically pushing the joy stick backward ignoring our encouragement to press it forward.  We're supposed to be getting a remote control "kill switch" which will undoubtedly come in handy. Oh that, and also having the power set on the lowest possible setting (it can go pretty fast!).

But for now, our walls are serving as bumpers:) I cannot wait to see him be able to drive himself up to the front doors at school one day in the near future.

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.

Playing Hooky This Week

All in all, a good week was had by all.  We paid a visit to the physiatrist earlier this week.  She checked LJ's DMO suit, foot orthotics, splints and overall functionality of the muscle tone.  We're proud to report that we are not needing to do botox for the muscle tightness right now.  She feels the DMO suit is working & wants to see how things progress naturally!  Lewis is able to sit in a propped position for quite a little while before falling backward.  The thought is that once his Gtube is permanently removed in the Spring he will gain even more core strength.  No botox = really good news.

The other great news is that a new, local Hyperbaric Oxygen Therapy clinic has started seeing young patients with CP and also autism. I toured the facility on Friday and was impressed with what I saw.  The last time we did HBOT treatments we really saw an overall improvement in LJ.  Sadly they were a mobile unit and moved to Wisconsin for awhile.  That was in February 2010.  So since we are a no-go for the botox, I think we are going to try to find a way to do 20 sessions at this new HBOT place. 

And the last bit of fun news is that Nate and I are off to join my dad, brother and nephew in Park City for a little skiing and tail end of the Sundance film festival.  Nate is so thrilled to see snow.  (They got a foot of snow last week.) Whereas we had a couple inches here in NOVA which promptly melted overnight and turned our front yard into an icy mess.  That didn't matter; Nate still wanted to wear his snow boots and play outside...making crunching noise on the ground and picking up ice blocks and launching them at stationary objects.  Magic carpet ride here we come!!!  {Checking out the adaptive ski program for LJ for the next time we're there too}.

Where We Are Now

Just a quick update regarding LJ's pulmonology appointment. His lungs sound better! Yay. He doesn't need a follow-up til February unless it is a tough virus-causing winter. We have one more day on the antibiotic and his secretions have lessened. We do, however, need to follow up with the ENT. LJ's left ear is clogged. Though the ear tubes are in place, this could be cause for many an ear infection this winter. That's not good. On another front, I am happy to report that he is up to a whopping 13.9 kg. This is approximately 30.5 pounds!! By last Thanksgiving we had just begun a whole foods, blenderized diet. I can't believe its also been a year since LJ discovered his new love in life, pizza. We've come a long way baby! LJ has been completely weaned of his g-tube since August 1st, 2011 (meaning, no water or food has been supplemented using his feeding tube). We got the "all clear" from the GI folks for the g-tube Mic-Key button to be removed PERMANENTLY in March if all goes well through the winter! Hasta la vista gtube. It's been real. But we're ready to see you go ba-bye.

A List of Gratitude

It hasn't been a great week so far. Both boys are sick. They're on antibiotics now (Thank you Dr L!). Nate is home from school playing legos. They are both coughing and LJ will needs to visit the Pulmonologist because he has tracheomalacia and when he gets sick his chest sounds all crackly and not so healthy.  Some appointments that were supposed to happen for LJ had to be postponed due to bureaucratic paperwork with insurance. And so we wait and see when the referral will get denied or if we can reschedule the appointment.  Off to schedule the pulmonologist! I'm worn out and hope everyone sleeps better tonight...or at least affords me a nap today.

Thanksgiving is next week. Next week? It's crazy.  I am trying to plan our menu for our holiday meal and make the grocery list.  So I also made a list of things that I'm thankful for. (Alternately, it can be looked at as a list of things that makes me happy). It's times like these that it's good to reflect on how much progress we've made and how big our hearts have grown.

 1. My family
 2. My friends
 3. My home
 4. Snuggles
 5. Kindness
 6. The beach- the surf, the sand, the smell of coconuts..everything about 'em
 7. Sunshine
 8. My yoga practice
 9. Walks 
10. Sunsets
11. Wine
12. Coffee
13. Good books
14. Belly laughs
15. Weekends
16. Guacamole (chips optional)
17. DVR
18. Blueberries
19. Long, hot showers
20. LJ's iPad
21. Learning new things
22. Watching LJ pull to sit up
23. Tickle monster
24. Child's pose
25. Savasana
26. Making goofy faces
27. Playing in the sand
28. Yummy smelling candles
29. Pumpkin muffins
30. Looking through photo albums
31. Peace and quiet
32. A good night's rest
33. Jar of funny Nate quotes
34. Chair lift conversations
35. The sound of skis carving into the snow
36. Hot chocolate
37. Fires
38. Playing boardgames
39. Addicting puzzles

Outtakes from Ithaca

We're playing catchup from an almost perfect weekend.  We had some sleep-aversions amongst the youngest family member & a bit more rainy weather than anticipated, but otherwise we all enjoyed spending quality time with our friends.  Here are some outtakes from the weekend's zip lines, happy hours, farmers market & lake fun.  LJ had a neurologist appointment today and I'll catch you up on that later- but in essence everything is going well.  Pictures for now.

Only Hugs and Smiles Allowed

Brief update regarding LJ's weight check and doc appointment last week. His weight is up from the last visit- he's 12.13 kg which converts to 26.75 lbs.  The nutritionist suggested he should be gaining 5 grams a day. We're pretty much on track if you reflect on his baseline weight pre-wean. We've made some kale smoothies and some zucchini bread and surprisingly been successful at having him enjoy eating those veggies. Noodles has also downed a few steamed pork buns & some homemade meatballs a la Emily- exploring other animal proteins and adding some variety to the repertoire.  Noodles also went to his first fair, and his favorite treats were funnel cake and lemonade! He's also been consistently taking a bottle of chocolate milk each night pre-bedtime... as long as it's from Mommy.

The nurse and nutritionist both feel comfortable with how well things are going (knock on wood it stays this way).  Consequently we don't have to go in for weekly weight checks anymore.  Next weigh-in is scheduled for mid-June.  The other thing we're tweaking is a reduction in volume of water via Gtube. Since Lew is getting fluids orally, we don't need to supplement as much through his tube.

Totally unrelated but a mantra that I try to live by:

Don't Worry, Be Happy

Recap of recent events:  LJ has maintained his weight since the tube wean despite having an ear infection and feeling uncomfortable.  He has the worst sweet tooth known to man. He has become completely averse to anyone besides me, myself and I feeding him (though Emily more luck than anyone else).  This makes for challenging mealtimes.  We cannot keep this up for the long haul so we are working on helping him bring his own hand to his mouth so he can be self-sufficient with finger foods.  We have been strategizing non-stop to figure out how to stop the two-year old tantrums when he doesn't get his peanut butter, graham crackers, popsicles, cookies or other favorite foods. 

It turns out every child does in fact need to have some green veggies and different varieties of protein.  We continue to search for the magical item(s) that might be accepted into LJ's repertoire of food. This week I bought some tofu, Barilla Plus pasta and some whey protein powder suplement.  I was successful at getting LJ to try the tofu, some basil pesto and also some Spanikopita all in a weeks work....as long as it was all washed down with some Nutella or peanut butter (what crazy combinations!).  All the while we are keeping our fingers crossed that he is eating enough and will not lose any weight at his next weight check, this coming week. 

Lew's right hand has been tight this week and is also causing added concern.  His therapists and I are all having a great deal of difficulty prying it open.  It can stay fisted like this all day, and at points he has blisters and skin peeling off his palm when I finally do get it to open up.  We've been going to our therapist at Children's who has made several different, custom hand splints to try to offer his hand some relief. She has also used joint compression and brushing techniques to further resolve the situation all to no avail.  We are meeting with the Psyiatrist to discuss the post-Botox aftermath the first week in June.  It's not clear to us what our options are.  It seems to me that his hand was better off before the Botox (though I can't prove it). The Botox was effective loosening LJ's right pec and right bicep, but that's worn off and  but his hand is quite useless to him right now. One thing that has been brought up by the doc and LJ's PT and OT in the past was the use of a medication called Artane. I hate to give my wee one a medication that he will need for the remainder of his life, especially when there are side effects.  It would be so great if there were some alternative treatments!

------------

An incident in the grocery store earlier this week has stayed on my mind. An older gentleman asked me what was wrong with LJ's hand.  LJ was riding in the grocery cart, sporting his "resting hand splint". I explained about LJ's cerebral palsy and that due to his tone the splint gave that hand and arm some much needed relief. But of course, the root of my discomfort lies in the fact that we are stuck in no-man's land and don't know whether or how we can help LJ's hand

The guy in the store was quite nice.  I don't and can't expect everyone in the world to be as sensitive to these adversities especially when they are just kids.  We all have our different trials and challenges in life.  LJ has just been working so hard and he is so empowered by his eating since the tube wean.  I just can't let a minute go by without trying to make the world a little easier for LJ, whether that's researching alternative medicine or signing up for a new therapy. People (kids especially) can't see that he didn't ask for things to be this way.  While they aren't intentionally being mean, it still hurts.

Perhaps I was already at my breaking point for the week; perhaps all the little moments this week just made me weak.  Who really knows why we have such strength some of the time and crumble during others.  in any case, I read a beautiful, moving post that brought me to tears to complete the week. On Following Elias the Boy that Could, here's a link to the post that made me turn to the Kleenex.  I think no matter who you are and what you have gone through or are going through in life, it will hit a chord. We all just want to be worry-free.

Breaking Up Is Hard to Do

LJ was lacking in energy today and didn't feel like eating as much.  Clearly, fatigue is starting to set in.  On the statistical front, Lewis has lost about 1.5 pounds.  Not alarming when you consider the facts.  Nonetheless, if LJ comes close to hitting the 10% mark for some reason (he's at 7-8%), we will not stop the wean, but supplement with small amounts of bolus feeding to carry LJ through (before eliminating again) and consult with the GI doc if that does not do the trick.  So we're keeping an eye on him, but the experts assure us he's on the right track.  He's certainly interested in eating, that's for sure.

Markus, LJ and me at the Doc's office

Markus entertained us all with his party tricks whilst at the doctors office this morning.  Meanwhile, Jeni got LJ to suck a lollipop in the waiting room.  The team is in a good place, making much progress and everyone is very supportive.  Noodles is pulling the pieces together though and he has started associating food with hunger.  He does things, for instance, pulling his shirt up to gesture toward his gtube button.

Markus entertaining us at the weigh in

LJ is really proud of himself.  Every few minutes he signs "go" and "eat" to anyone who'll pay attention.  He is trying to narrate to everyone that he is an eater now.  He gets a big smile when you confirm that he is a big eater...and ask him whether he just ate some mac 'n' cheese or what not?  Though he wasn't much interested in lunch, dinner was an awesome two hour spread that started with french fries and stretched out to apple breakfast sausage and then to good old watermelon.  He even insisted on snacking in the waiting room at the Doc's office.

Nate helping Markus take a Lego break...

Botox Day

We are trying to stay calm and not let worry get the best of us.  Botox. Anesthesia. Shots. LJ is scheduled for botox injections tomororw morning in his right pectoralis major, right biceps, right flexor carpi ulnaris, right flexor digitorum superficialis, right adductor pollicis brevis and right gastrocenemius muscles.  In layman's terms, that is a whole lot of botulism poison being shot into my son's pecs, biceps, muscles that bend the fingers, wrist, thumb and calf muscles. We found out while we were at water therapy today this one of his friends is also having this procedure done by the same surgeon right after LJ's tomorrow!  Waiting is the hardest part (oh yea...and also not being able to feed him anything after midnight tonight), but at least we we'll have a friend there to while away the time.

For those of you that never realized, botox has more noble causes then reducing wrinkle lines and de-sweating armpit glands.  It's used for cerebral palsy as well.  There are varying degrees of tone with cerebral palsy, commonly referred to as hypertonia and hypotonia. I heard Noodles' referred to as dystonia for the first time last week. Hypertonia means lots of extension and stiffening of the arms and legs (spasticity is usually associated with this).  Hypotonia means really weak, almost to the point of being floppy and not being able to hold ones head up.  Dystonia means that when your child focuses real hard on x task, those muscles go into extension and it takes a while for the child to break out of it.  Heartbreaking really.... as I have watched LJ become more easily frustrated these days when he is not able to complete a task or get his wants, needs and desires across because of his motor and communication difficulties.

Tone never fully goes away.  But we're hopeful parents wishing that this intervention can bring a little relief to our brave lil guy (and avoid future surgery or medication). Thankfully he won't remember the procedure!

Snow Day!!

No school or therapy today!!  Unfortunately nobody slept in. It's mostly just been sleeting. But we're expecting 5 - 10 inches in the DC area tonight so maybe we will get to have a lazy morning tomorrow.  Sleds? Check. Ice melt? Check. Shovel? Check. Snowbibs? Check.

We went to our ENT appointment earlier this week- Lew's ears are all better!  And he is definitely a lot less fussy. Luckily his ear tubes were both in the correct spot and doing their job.  Let's hope they stay that way!

Botox is next up for LJ.  Two weeks and counting.  Here's part of my worry: muscle atrophy. That and the actual anesthesia.  But here's some commentary from a physiatrist on the topic which reassured me some.
"I'll take a look. But on the surface it makes sense. Block some of the nerve signals to the muscle and it will get smaller. Obviously in general the goal is to improve strength and function. However, if one muscle is so tight (ie. hamstrings, calves) you never get the opportunity to strengthen the opposing muscle (ie. tibialis anterior, or quads). So you do end up sacrificing a little strength in the dominant muscle to hopefully get access to the weaker ones. And yes, it makes sense that research might be able to demonstrate atrophy. What that means exactly, who knows? Our goal is functional improvement, and if evening out opposing forces can't be done just by strengthening the weaker muscles, then "weakening" (and perhaps
atrophying) the stronger muscle is part of the strategy too."
How does one make the decision? It is a tough one.  I guess in the end we do the best we can with what information we have.  Time will tell.

Note: It's been no fun for Josh.  He left work at 5pm tonight and he still hasn't made it home.  Who knows what the deal is but he and the rest of the folks in the bar that gave up at 9:00 pm have made a pact to wait until things clear up.  Then hopefully everyone makes it home safe and sound.

Crunch Chomp Cheerios

Today we had a great food play session- including Nate as he was making soup with all the same ingredients in the sink just beside us. LJ didn't mind the texture of cheerios and he signed several times that he wanted more. He didn't swallow much but he tolerated it. He gagged once as you will see here in the video, but where that would have set him way back several months ago, he carried on and self-regulated right thru it. Today's menu involved crumbled goat cheese (very gourmet), strawberry jam, buttered noodles, Banilla yogurt ("banana-vanilla"...not his best friend), bread and vanilla soy milk (better than unflavored). Cheerios too.  He still doesn't have a pincer grasp, so I have to feed everything to him.


Chompin Cheerios_January 23, 2011 from Jenn S on Vimeo.

In other news, LJ's ears have been acting up. We went to the doctor on January 7th for lots of ear goop. There was so much discharge the doctor could only see one of his ear tubes. The doctor prescribed an antibiotic drop to put in his affected ear. It didn't work so we visited our pediatrician this past week and he got put on an oral antibiotic. Doctor Pediatrician couldn't see either ear tube. The med seems to have cleared up all the discharge but I don't know if the infection is cleared up yet. Lew is still super fussy and only wants to be held/carried around. No sitting will do. We have a follow up with the ENT tomorrow and they'll be able to look with a microscope to see if the tubes are in the proper place and perhaps they will also be able to get all the discharge sucked up.

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!!

Feeding "Camp" Update

Well, we're six days into feeding camp.  Its been a battle but LJ was a complete rockstar this week at St. Joseph's.  We all know what a slow process this has been.  But this week seemed particularly slow-and we always seem to regress in order to make any progress.  I think food camp should be nicknamed the slow food movement!  Either that or food boot camp (when you think about all the retching and gagging)!  Some might even liken the process to sitting down and actually waiting to watch a rose bloom! We have had to stop using purees for the time being and start back with a dry spoon.  We have been given the expectation of 1 oz of pureed food at each feeding by the time we graduate the program in four more weeks! We have had to re-learn all the patience we had while in the NICU that first time. We've had to go back to our least favorite place in the world-a hospital! We've had to figure out how to handle the goals and manage the meetings with doctors, therapists and hospital administration. I wasn't expecting to be so emotional about everything. LJ has had to deal with lots of new people touching + messing with his face.  I have had to find the strength to stand back and basically watch my baby be force-fed and cry (sometimes behind a two-way glass mirror).  But the point is- I'm so proud. Noodles is such an incredibly persistent and determined cutey. Deep down I know that practice does make perfect.  And I am learning a lot.  Fingers crossed that by the end of next month he will be closer to weaning from his g-tube and eating more and more each day (cherry on top would be drinking from a cup + learning to use utensils but we won't complain if not! Oh and maybe table etiquette too)!  We're praying this will work so Noodles can gain some oral feeding independence (and surprise all of his therapists) and we feel so much gratitude for all the wonderful doctors, loving family and friends' support.  They've really kept us going forward on the long road ahead...we have hope and believe in LJ and this process...and promise we'll give more of a synopsis of the day-to-day therapies (I know you're all wondering:) when we've had a little more downtime and when things get a little more routine.

Audiological Torture

Noodles went in for a fancy hearing test today....also known as parental torture.  The Auditory Brainstem Response Test (otherwise known in the field as the BAER test) tests hearing from the inner ear to the brainstem.  Noodles had this test in the NICU before he was discharged and his hearing was normal, but he has been having problems with fluid in his ear + his speech has been slow to develop (I think the non-fuzzy clinical term is "Non-Verbal").  So, the ENT doctor thought it was necessary to see if he had any hearing loss. 

don't let this smiley lil guy fool ya!  he didn't have fun...just trained to smile at the camera!

The test requires that the child be sleeping.  LJ had this test today at 1:00pm and it was a challenge to get him to stay calm.  I got a call at 11:00am saying we would need to engage in a little sleep deprivation this morning beforehand because we were going to attempt the test au naturel (meaning no sedation!). Even though LJ was tired, we didn't complete a read on his left ear until 3:00pm.  This was mostly because he was so squirmy and partially because the "CuraSilk" cloth tape used to adhere the electrodes on his ears and forehead wouldn't stay affixed (As I'm typing I just found some of this tape on my neck...and my jeans thank you very much).

Didi really helped me stay (moderately) calm and still keep the the technician inline- I wish they could have just given us all a Versed.  It would have been much more tolerable. It was very disappointing that this procedure wasn't better suited for an 18-month-old.

If we can determine how much hearing loss LJ has in the conversational range, (between 2,000-4,000 hertz range + 0-20 decibel range is normal hearing) it will  help determine how much intervention Lewis needs to properly develop language and speech.  (Normal hearing tests don't test this specific frequency).  Survey Says? Fail.  He failed the test in his left ear.  The docs will have to sedate LJ to do the ABR at another time.

The technician put his left ear hearing at the 55 -60 decibel range.  The audiologist said that means he doesn't hear vowels very well.  She thought that he probably didn't hear unless we were shouting....and she thinks one of the contributing factors to his hearing loss is the fluid in his ears since she still couldn't get any OAEs (sound waves in the inner ear) either.  We got no results at all on the right ear. LJ woke up as soon as the gear was attached to his right ear and he gave us a run for our money.  Since the equipment is not smart enough to work while toddlers are trying to pull off all the wires we'll have to schedule the sedated ABR test which will probably be in the next few weeks...but everyone has taken a chill pill for now, and is relaxing at home quietly:)

The unfortunate thing is that we'll have to do a repeat BAER as an inpatient at the hospital (preferably Children's).

Hopefully he'll pass the test on the right ear, or maybe we'll find that there was something wrong with this test (it didn't go very smoothly and we were using the second string equipment, the modern tester was broken).  We would of course cheer for joy big time! If he passes in one ear we might forgo the PE Tubes surgery.  Otherwise, that's coming sooner, rather than later...

For public record....he hears Tango barking at our mailman just fine! This makes us all very cranky at naptime. And if you ask him to "honk" your nose, he will reach out and honk honk honk your nose.  Go Noodles go!!! More later.

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.