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.

Waiting for the Bus

Nate's first day of First Grade (he has a locker! when did he get so big?) and LJ's first day of preschool (that's his new power chair...which he showed the teachers how to put in drive!). No tears were shed.  It was a good first day for both of them!

We've Acquired a New (Furry) Family Member

All boys need a buddy and our house had been far too quiet these past few months.  This is Annie, Nate's new pup.  She's a one year old, Whippet, Terrior, Hound, Mix (a dog of diverse heritage, Josh says, not a mut). I'm falling in love with her as we all are.  She is a wiggle worm, goof ball and also a love bug. She comes to us via Texas where she was taken in by a friend's mom.  Our friend and her husband as fate would have it, own a new, local company called Dog Gone Tired and have been raising Annie in her adolescence for the past several months. For any Arlingtonians, they do dog obedience, dog walking and even dog grooming! If you have a dog, call them!

We're so excited for all the fun times to come.  In other good news, we're still working on getting LJ's service dog.  But that is in the works and will take about another year.  More pupdates to come!  Until then, I will try to articulate the bond and love that Nate seems to have instantly cultivated with Annie.  On their neighborhood walk tonight, Nate had the leash wrapped around his waist and Annie was right up next to his side.  They were several yards ahead of us and clearly were old, good friends.

Inspiring Me Today

Words don't come easily.  Lewis continues to work so hard in speech therapy.  A few weeks ago, he reduced me to tears when he approximated the words and I had wished and held out hope to hear someday. And it happened.  Out of the blue.  We were just hanging out at home playing with his toys.

"aaayyy. PAUSE. uuuhhh. PAUSE. ooooo"

I love you.

Sweet, sweet music to my ears. Three words and they brought tears to my eyes.  Still does each time he tries to perfect the sounds and vocalizations of "I love you." And he's been practicing every day.  My heart is so happy.

He's working hard at other words too, like "hi", "eat", "on", "up", "belly", "ear", "eye" and "arm".  But clearly the I love you's are the ones that make us feel so wonderful.

On Happiness at HHI

Travel to the Sea

We're off to the sea.  It is beyond satisfying to be returning back to our week-long, annual family beach trip!  It's familiarity year after year and my appreciation of getting to know my aunt and uncle plus cousins' family history and stories.  They are becoming our stories now too. My mom and dad will be there too!  We all can't wait to reconnect with the cousins and enjoy each other's company.  Onward we go to Hilton Head Island- sunsets, walks on the beach, early morning yoga, the smell of the ocean and big family meals together. Before long we will be ensconced in our refuge, relaxation and frolic.

I'll catch you all on the flip side.  Until then, happy days to you!!

Cranio what what?

Pizza Chef Lewie, who prefers a little hat with twirlie thing on his dome instead of a chef's hat; 
LJ is also now able to independently sit without falling over for extended periods. See above photo;)

Cranio what?  Are you scratching your head?  We've started Lewis on craniosacral therapy (CST) this summer.  As if we didn't have enough therapies we're involved with, I thought it might help relieve some of LJ's muscle tightness so we've scheduled Saturday appointments for the summer.  First off, I really like the therapist's quote on her business card so much I though I had to share it.

Regardless of age, innate wisdom exists.

I don't think this needs more introduction.  It definitely gets me thinking and hope it does the same for you.

As for the deets on craniosacral therapy:  Craniosacral therapy is a holistic integrative approach to an individual's symptoms getting better, be it from a chronic illness/disease, pain or something as minor as ear infections and colic.  CST is used to effectively manage sensory processing disorders and communication difficulties through the use of whispering fingertips.  The therapist feels for abnormalities in the craniosacral pulse (completely different from a heartbeat or breathing rate) that belongs to the fluid and membranes surrounding the brain and spinal cord.  CST also works on the hydraulic-like fluid of the nervous system.  The premise is that it helps realign things and calm the nervous system.  Our therapist, Ms. N, uses a feather-light touch and then cradles LJ's head, face or chest as I play with him (aka distract him) or he lays back in her lap.

Last week Ms. N worked on the lymphatic system to try to ease some of LJ's chronic chest congestion...one side effect he had was a runny nose for the next few hours afterward.  One can only assume this was due to everything draining more effectively.  His hearing was also quite sensitive.  He insisted in signing to me that I needed to use the otoscope to look in his ears.  He emphatically pointed and tugged on his ears...but I didn't see any redness, nor were his tubes missing.  Then Nate was curious so everyone had a turn looking in each others' ears. Not sure if there's some other explanation but I'm sticking with sensitivities since the ears are no longer bothering him.  NIH describes the lymph system as a major component of the body's immune system.  Nonetheless, we're quite hopeful for the effects CST will have for LJ.

Some other benefits of CST are improved blood flow, promotes relaxation and reduces muscle tension and pain.  I'm not surprised the American Academy of Pediatrics has no official policy on craniosacral therapy but they confirm it is non-invasive.  Since we've been willing to try alternative therapies such as hyperbaric oxygen treatments (which btw we were happy with), a holistic wellness route seems like a no-brainer...excuse the pun if you will!  Still, if it can't hurt what's to lose except the weekly out-of-pocket session fee (it's so not covered by our insurance policy!)?

He's been so relaxed that he asks for a nap three quarters through each session.  Then he comes home and takes an even longer nap. The therapy also completely relaxes his digestive system too!  Sorry for tmi.  Everything is more relaxed.  Perhaps he feels blissed out?  Fun stuff either way.  I've been researching this therapy since November and can't believe it took me this long to get therapy underway.  I think it is fair to say we are following every lead we can.

Lobster, Friends and Fireworks

We hope you had a happy fourth of July!  It sure doesn't get much better than hanging out with great friends, dining on lobsters and berry cobbler and watching the fireworks go off all around the city.  Lew has signed to me that he would like our friends to come back for another sleep over!  Fortunately for us (I love me some lobster!) he wasn't that interested in the lobster, so he enjoyed fish sticks instead.  Life lately according to pictures...

Summer is Officially in Full Swing

Kids start camp tomorrow. CSA Farm share is on it!  The pool is open.  Nate had his last day of Kindergarten and his first lemonade stand (He earned $8 of which 10% will go to a charity of his choice).  Family vacay is next month.  Here are some snapshots for ya.  Summertime and the livin' is easy.  Well at least its more fun.

Nate's Last Day of Kindergarten

Radishes for the Feta, Cucumber, Radish Salad

 

 

LJ's impromptu visit to the splash park

Get Your Lemonade! It's 100 degrees!

iPad Extended Warranty

The below picture is proof for why you must buy the extended warranty. Unfortunately, LJ's iPad which he uses for proloquo2go, bit the dust. As it was the first generation iPad, no warranty existed at the time. Still, I think it would have cost a good sum to try repairing it. It was accidentally crushed when folding up LJ's wheelchair to put in the back of the car. You couldn't even turn it on to get to the settings screen. The Otterbox Defender case is 100% intact. As you can see, just the glass and the screen shattered to bits.

I'm off to reconfigure and reprogram the most important parts of P2GO that we lost.  The last back up was done in May.  It's a must before summer camp begins and new folks need to be able to use it for communication with LJ.

Father's Day

Happy Father's Day to all you rockstar dads out there. And to mine, the most awesome, bestest, coolest, funniest, smartest, nicest Dad around. Here's a nice photo of my Dad with the family in the spirit of oneness. You rock! PS Regarding that photo above. Yeah, that's circa 1974 and my dad is sporting some nice duds! My big bro too for that matter;) Just a snapshot of what an amazing Dad looked like back then.

It's All About Moderation

I like to keep things balanced- I enjoy a nice glass of wine as much as anyone. Those who knows me also realize how much I love yoga.  Here's a fun you tube video about Yogi wine lovers to make you smile.

First Fort

Anna, our fabulous caregiver, crafted this giant fort in the family room with the boys the other day. Turns out Anna's got mad skills.  Lots of climbing things, throwing things, peek-a-boo holes and hanging out watching the iPad once the fort was secured.  Nate has a permanent installation in his bedroom now. There are limitations of this sort of thing.  I have to duck very low to get near the bunk bed when Nate's asleep, and usually I trip over the mound of pillows, stacks of Pokemon cards, favorite stuffed animals, books and balls he has been squirreling undercover. 

The siblings might just be perfecting the art of using every sheet and blanket in the house this summer break;) Only six more days of school!




I'm going to whip up a portable fort-making-supplies suitcase to have at the ready for the next imaginative foray into fort building. (Early intervention helps to prevent my bed sheets from being drawn into the fort supply arsenal.)  Can't wait to go get in more adventures with my boys- name of the game is about limitless possibilities and maximum comfort.

Long Live Bubble Baths

I'm sorry for the gratuitous photo of the lad.  But that smile says it all! For those of you in the states, have a happy holiday weekend.

My Cape is in the Wash

On the cape it says "Super Woman".  Lately, Lew has been wearing his super hero cape and turning it into an apron for imaginary play sessions as a pizza chef.  I have admired his cape and feel that I earned my own, to keep, after traveling to Florida this past week by myself and the boys.  Said cape is now in the wash, with the other mountain of laundry from our mini-vacation.  Ah, real world reentry is never easy. Not to make light, Nate was such a sturdy assistant helping with the carry-ons and juggling the crayons, snacks and iPad to keep LJ entertained during the flights.  As I managed the little human, the wheelchair suitcase and the other bags, Nate was so self-reliant and responsible.  He was great!

Aunt Jessie (aka Tanta) celebrated a birthday the first night we were in town.  Lew helped her celebrate by giving her a great gift- riding Tanta's electric chair.  Nothing else mattered than riding with Tanta.

Fortunately, Tanta is a much, much better driver than Lewis (he's recently scuffed up our walls and door frames.  He thinks its very funny when he purposely slams into the dining table). He's become defiant like that. He sat on her lap and was strong enough to hold himself upright...pretending to turn the key and drive.  Hope he got some good driving tips.

Next up Legoland: Nanny and Babu took Nate to meet Darth Vader, R2D2 and the Pirates of the Caribbean.  And if that's not enough!  He visited NYC, DC and Vegas baby.  Incredible Miniland versions of lego cities that took months to create.  Nate was thoroughly impressed and inspired.  Nanny and Babu deserve super hero capes too.  Nate declared Florida very HOT! and also Legoland was his fave part of the trip;)

While they traipsed around Lakeland, Lewis and I went to Innisbrook to swim in the pool and eat mac n cheese poolside.  Tons and tons of mac n cheese. We had some good qt.  The weather was beautiful and the pool also had these spray fountains that Lew tried to squash with his feet.  When that failed, he bent his knees, squatted down and then triumphantly sat down on it.

Clearwater Beach: LJ loved to sift sand through his fingers.  We made sand soup with a dash of sea shell sprinkles.  Aunt Kara shuttled him during a fun game of tag with his cousins.  He also thoroughly enjoyed making some serious sea horse sand molds.  Try saying that ten times fast.  Nate and Cousin L dug to China, practiced sliding stops in the sand & then tried to take a bath in the sand.

The sunset on our last night of the mini-vacation was a perfect gift.  After months of shuttling to therapies, doctor appointments, surgery and follow ups I was truly able to be at the beach without thinking of other things. At that one point in time, I felt no anxiety or stress about therapies and treatments coupled with the trials and opportunities parenting Nate. I only felt joy. I was home. I had avoided burnout.

Song in My Heart

If I could carry I tune, I would possibly write a song for both my boys.  But I don't think I would muster the courage to post it on YouTube.  However, this mama did here and it is truly special.  Is there anything more true, more relevant, more important on this mother's day than remembering what a gift our children are to us? Happy Mother's Day to each mama and mom figure out there!

Parenting Gem

The other day I came home to find this note on the kitchen counter.  It's from Nate to Lew.

He brought LJ to school with me one day last week, and it was his idea to bring a book to read to LJ's class during circle time. I wish you could see the writing more clearly, but his handmade card says "I hope you like the story. Do you want me to come again"  Incidentally the story was Brown Bear, Brown Bear and he replaced the teacher's name with Ms. J's name and he replaced all the kids' names with the people in LJ's class.  Too bad LJ can't read yet. No worries, I'm saving it in my bell jar of quotes and Nate-isms that make me smile and smile A LOT especially on grey days.

Big, Bad, Buddha Belly

Pre-stomach surgery to close the g-tube

Post-Surgery to Repair the Stomach, Abdomen & Exterior Skin

This post could have equally have been titled, "LJ and the Belly". Warning!! Don't look at this before you eat! Here's the progress we've made these last few weeks. He's getting stronger, scar is lookin' better and we're all just a little relieved that there haven't been any complications (well besides a little skin infection but that was resolved once the stitches were removed last Friday). We've come a long way, baby!

Inspiring Me Today

This is a video of such an inspiring, young woman who is studying ASL with fervor. It is such a cool thing. To think, with LJ's modified sign language we will one day have him signing/singing songs such as this one...if not verbally. It would be nice to diversify his repertoire of songs;)    LJ is recovering well from his surgery. The first few days were rough as far as pain management was concerned. Once you tried to move him, he winced in pain. At points he would lay in bed and just wimper. Hardest thing on Earth for a parent to witness! But today he is feeling better! After all, he got to have his first bath last night;) Nate asked me if LJ was gonna have anymore surgeries coming up. He's been very sweet and attentive to LJ. And he is even advocating for LJ (as much as himself. lol) a trip to the toy store so HE and LJ can get a BIG toy on the next, potential surgery date. I assured him that this go-round on the surgery front seems to have been "Operation Success" so I wasn't anticipating any more on the horizon. End of story.

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.

Happy Anniversary, Josh!

us on the big day

It's hard to believe that 10 years ago today, we got hitched.  Yikes.  We've actually been together 17 years.  It's been an adventurous journey to say the least.  For our anniversary, we opted for a staycation until we could plan something more appropriate for the milestone.  We lounged around at the W Hotel in downtown DC before getting a massage at Bliss Spa (me...not Josh;), then capped off a perfect day dining on yummy food at minibar.  Despite both kids' scheming and coming down with fevers and flus we managed to get there, and this six seat restaurant did not disappoint.  An Oaxacan snowball for an appetizer?  Sea bean tempura anyone?  My most favorite of the 29 courses??? was perhaps the Charcoal Grilled Salmon Toro with Black Garlic but really how can anyone choose.  They were all out of this world!

The night by far exceeded both our expectations. Didi and Bop, thank you so much for hanging with the kids and having a sleep over at our house.  The peace and quiet in the hotel was the perfect dose of calm!  We are so lucky.  Josh, I love you to the moon and back.  It's been incredible and I know that our adventures are exactly where we're meant to be.  The love of it all will in the end be the thing that sets us forth.

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 ;-)

Look What I Can Do

Babu took this sweet video at the playground this past weekend.  Lewis is now able to rock himself, and independently go down the slide.  His laugh and signing for "more" at the end just melts my heart!

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.

A Reason To Party

Meet Noodles aka Lewis.  Notice anything different?

That's right.  He no longer has his gtube button.  Let's take a trip down memory lane shall we?

   +first there was the NG tube and the DREADED feeding pump
   +several different prescription formulas that ultimately didn't sit well
   +then we had the Gtube (trying out everything from a MINI One to the Mic-Key Low Profile)
   +Farrel valve bags and Hollister clamps to combat leakage as well as reflux
   +countless times the button has been accidentally pulled out
   +numerous times cellulitis caused from a skin infection around the gtube site
   +unfathomable amounts of time spent combing the internet for facts and solutions
   +four different medications to help with an unhappy, uncomfortable stomach and intestines
   +what seems like an inordinate supply of 2 ml, 5 ml, 6 ml, 35 ml and 60 ml syringes
   +at least a half dozen tubes of calmoseptine, bacitracin and triamcinolone ointments
   +bottles and bottles of stomahesive powders
   +silver nitrate sticks to burn off excess skin forming over his port
   +gauze pads, drainage sponges and elastic, tubular dressings galore
   + more weight checks then we could keep track of
   +and obviously much, much stress and worry

The tube was officially removed today at the doctor's office.  We are going to have a big party (just as soon as I can find some time to plan an appropriate celebration. Until then we will drink copious amounts tonight!).  This day truly has been a light shining in the darkness.  Thanks everyone for all your support you have shown our family with all our feeding difficulties over the years.  A new chapter begins.

We're taking Plan D for the dental game plan.  We have an appointment on Monday with one of the very few private practicing, pediatric dentists in Northern Virginia who can perform procedures under general anesthesia at Children's Hospital in DC.  LJ will be slated to have a root canal, two cavities filled, possible tooth extraction and sealants put on all his back teeth.  We are hopeful the bad tooth can be saved and will not have to be pulled but we have little control over it since it is causing Lewis a lot of pain.

Be Kind

"when given the choice between being right or being kind, choose kind."

- Dr. Wayne W. Dyer

Reunion with Old Tube-Weaning Friends

Happiness is a big ole hug from two, old friends who came to visit us this past week.  There's nothing like them!  Markus and Jeni of Spectrum Pediatrics (see this post), our wise feeding specialists, came over for dinner this past week...one night after they worked all day with another brave, tubie kid (little W) who is on the same intensive-tube-wean journey we were on this very same time last year.  I look back now and think about how difficult and challenging a time that was for us.  How much fear we had. LJ cultivated such a special relationship with Markus and Jeni; it is really so wonderful to observe.

Here is a photo capturing the first reunion.  LJ was giddy with excitement for them to arrive.  As soon as they were through the front door he practically leaped out of my arms into his old, friends' arms.  It was thrilling to witness! The total recognition of Markus and Jeni combined with the complete recall of the events surrounding his tube wean gave me utter conviction that we didn't harm him or his relationship with food one iota.  In fact, we did a 180 degree opposite.  LJ loves these two magic-makers and LJ as you may well know, has a love-affair with food.  Hard work pays off.

That night, we told stories, we listened to stories but mostly we just marveled at the road we've been on.  Its hard to see when the reality is what we wake up to each and every day.  But when your dear friends haven't seen LJ for a year, it somehow has more merit when they tell you what amazing progress they see.  I don't know why our individual points of view are so widely different from moment to moment; we are witnessing the same human being.  I suppose us parents need to take the time to see how the day unfolded and see what worked and didn't work.  I suppose its because as parents, we watch differently. Morning. Noon. Night. Feelings and thoughts arise and subside and there's always worry.  I suppose as parents we need to be quicker at seeing where we've been and putting forth our efforts on that next path without so many questions and doubt.

As Markus and Jeni continue their work, I pray for little W that he maintains his endurance and focus to stay on this road to becoming an eager eater.  Sending W's family the patience, strength and discovery of hope. With gratitude and awe for two old friends who took such beautiful care of our boy. With admiration toward little W's family.  There's something special about our old friends.

And with that, we raise a toast to LJ's tube removal in two weeks.  We have cause for celebration!

Dental Drama

Indecision makes me feel unsettled.  I wish I could tell you what we are gonna do about LJ's cavities but we don't seem to have a clear solution.  We met with the pulmonologist last week who expressed concern for LJ's airway being compromised if we get his cavities filled under some sort of sedative (eg valium or ativan).  He could aspirate if he's too conked out and unable to swallow his own secretions (which means it would go to his lungs and he could develop pneumonia).

Two cavities!! That's all we're talking about here.  Seems so ridiculous that two measly little cavities could stir up so much controversy at the home-front.  He is only 3 so I'll have to give him that.

That said, its all or nothing. We either try to get him strapped into a papoose board (think straight jacket) and go cold turkey without anything to calm him down in the regular dentist office setting & pray that we can talk to him and keep him calm enough that he won't aspirate on his own secretions.  (I'm making Josh take the morning off to help out with the hysteria.)  The alternative seems to be to have it done under general anesthesia at a different, private office where the dentist has the resources to protect kids like LJ with potential airway issues. Unfortunately, as we love our pediatric dentist, they don't have much experience with kids like LJ.  We've got a consult appointment with Office #2. There's still the chance that they may see LJ and recommend the procedure be done as an outpatient at the hospital.

I have an appointment for Office #1 to try cold turkey next Friday, March 16th.  And back up plan A is to book an appointment at Office #2 to try under general anesthesia.  Plan B, Children's Hospital.  Who knows what to do? Who knows what to do?  "We're going on a bear hunt.  We're going to catch a big one.  What a beautiful day! We're not scared....We can't go over it. We can't go under it.  Oh no!  We've got to go through it!"  ~ Michael Rosen

PS My dad is doing well.  He has a follow up appointment with the Orthopod today!  He might be going home on Thursday. Big sigh of relief.

Snapshots of Nemacolin Trip

I took the kids to Nemacolin last week for a few days sans Josh.  We got to see my dear friend, Alicia, and her wee ones.  It was an amazingly good time for everyone.  "When it comes down to it, the best moments in life are those spent with good friends over good food."  As our lives have gotten more complicated, it is harder to find the time to go play.  I'm so thankful for the good fortune of time and the friendship to hang out and have some quality time together.  The woods, the grounds, the suite (we were very fortunate to get a nice, little upgrade :), the spa, the restaurants, the late nights whispering to one another while the babes slept in oversize hotel beds...this reminds me of life's best things.

Now, if we could only go back next weekend and shirk all our Earthly responsibilities! I could hardly wait....I miss you already!