Never Under-Estimate the Power of Hope

anything could happen & that everything would // Cheryl Strayed

Life has surely been sweet and strong lately. I'm finding a way to weave gratitude into everything.  For instance the stumbling, the correcting the course, the difficulty finding balance.  This time around, the wisdom of knowing the journey we've been on and the path of healing, courage, of beauty, of love we are on. They've helped me stretch my soul.

Cruising With Lew from Jenn S on Vimeo. Video shows our guy stretching his calf muscles 14 days post botox/heel cord procedure. He's still really weak in the shin muscles (from years of such tightness in his heel cord) so we've been trying to help him develop strength by the stretches and activities at home.  Lots and lots of PT with his fabulous therapist Ms. L!  It's still so hard for him but he is a persistent little guy.  He does not give up.  He gets up day in and day out and begins again (and again and again). Thank you so much for teaching me the most powerful form of resilience training.

and starting off the Memorial Weekend with Lew, the Bruiser....  He had an incident in his activity chair whereby Annie our dog knocked him down (his brakes weren't on cuz we were moving toward the house) and consequently he hit his forehead on the corner of the ramp wall.  Coupla stitches later and a CT scan to be sure there wasn't a concussion. It was a deep puncture...on his forehead. Suffice it to say we had a lot of nice cuddles the rest of the weekend.  On this day, I surrender my heart to possibility, to listening, to asking, to helping me, to hope.

Neighborhood Ride After the Rain

I'm proud of the boy Nate's becoming.

LJ is doing fine after his surgery last week.  His heel cord and hamstrings are getting some relief from the botox procedure and we're stretching him everyday.  His PT is going to see about a padding for his leg brace so it positions at his Achilles Tendon to decrease him from pistoning out. Other than a few tweaks here and there, we go in for a post-op appointment with his doctor in the beginning of June.

Both boys are doing a phenomenal job.

Bits and Pieces of Happiness

Sorry for the radio silence folks. I've been trying to dig out after last week.  Lew's surgery was successful.  Tests were normal, so we've had some closure there.  Honestly I never heard anything else the surgeon said regarding the procedure; I was kinda in la-la land from hearing "normal".  It's not something I usually hear these days.  The following day we had snow and ice so there was a two hour delay for school.  We've also checked off an IEP meeting,  a night of sleeplessness due to who-knows-what, a solid day of trying to make up for the lack of sleep, Kindergarten night, Josh traveling for business and of course the Super Bowl.  Nate was a happy camper because he invited two of the neighbors to watch it at our house.  More than the game (which incidentally none of the boys watched) I enjoyed seeing LJ use his gait trainer as he chased the three boys to the other end of the house, returning back to me proudly & then the boys engaging in a fun game of sneaking back up on him...only to be chased back into their room again.  I so wish I had recorded a voice memo of LJ's giggle.

One other fun note, LJ told Anna earlier today what he wanted to do with his life.  He conveyed that he wanted to open up a donut shop in Arlington and give Dunkin' Donuts a run for their money.  I said, "why yes, that's a fantastic idea! and mom and dad will help you start your business".  Uncle D, you will be his best customer;)  Bring all your buddies!  LJ wants to call it District Donut.  He then told me he didn't know how to make donuts.  This was a major business flaw. So we watched about 8 shows on baked goods, donuts and the like.  District Donut website under construction and flavor profiles in the test kitchen.

Some snapshots below from the rest of the week.  I find it a bit odd that the Tasmanian Devil is prominently placed on the hospital gown when all that's expected is for your wee baby to take a snooze.  While my guess is its supposed to make kiddos smile, we'll take any good, crazy energy we can get, Bugs Bunny and all.  Oh, popsicles also sorta help.

LJ grilling the nurses and doctors about what they were doing

An underwhelmed Nate's note after another visit from the "Tooth Fairy"
can you tell our son is a non-believer?
Dear Dad

Annie following the sun spot.  Dogs are so therapeutic!

I've been meaning to talk to you (pic captured at school by fabulous Ms. S.)

And this note came home in LJ's back pack...he really loves the computer...

Quieting Down, Chillaxin and About 9 Other Things

Everyone seems to be experiencing New England weather as of late.  It was 17 degrees this morning and the snow was still covering many roads.  As school was canceled yesterday and Josh was out of town, I set out to shovel snow while Nate and LJ created a snow slide in the backyard.  Then yesterday afternoon, Anna the Great came to my rescue and took LJ and Nate sledding (my fave part of the below video, is Anna apologizing for almost bulldozing another kid walking back up to the top! That and LJ's happy laugh.).  The kids had a ball.  This morning schools had a delayed opening. Short week for the boys as Monday and Tuesday were off as well.


LJ and Anna Sledding_Woodstock from Jenn S on Vimeo.

Like every other challenge in life, your circumstances become your reality.  And you just deal.  It's honestly been so long since our little accessibility project started, we forgot what it was like to not have plastic sheeting hanging everywhere and hammers going to work.  We also forgot what it was like to not have LJ sleeping in the guest room with one of us (but usually Josh was delegated to the task).  But I'm happy to report that things have quieted down and LJ is digging his own bed again.  We're pretty much all done with the exception of stuff on the punch list.  LJ also can rock the automatic door opener for his ramp entrance.  Your child's independence is one of the most beautiful things.

We've been working on LJ's IEP Meeting, his Re-Evaluation Meeting for "reevaluating whether our child is still a child with a disability who is in need of special education and or related services" (insert here: protocol and just going through the motions. Though I get why its there) and touring different neighborhood schools' Kindergarten classes for LJ next year.

I had a long meeting today with LJ's wonderful school speech therapist and teacher. We conferenced in an augmentative communications expert who is helping us order an Accent 1,000 through Lew's insurance.  It is basically like an iPad but more durable and sophisticated.  We ruled out the Dynavox and eye scanning systems through separate trials earlier in the year.  We hope that the Accent will provide the most success through building on language acquisition via a motor planning method (think muscle memory here but with icons and words).  Theoretically, it will go with Lew Bug wherever he goes and as he grows older and travels around his school and community setting, having it mounted right onto his power chair for ease of access (between his wheelchair and the communication device, he's get up costs about the same as a small car).

On Tuesday, January 28th, LJ will have surgery to replace bilateral ear tubes.  He'll be having an Auditory Brain Stem Response (ABR) at the same time since he'll be under anesthesia.  The last one was here.  Don't think there is hearing loss, but we've never caught a clear picture of whether there is any.  So this will be good to have some closure.

That's it for now.  Trying not to be overwhelmed by it all....For now.  I'll just flip upside down to change perspective.  Thank you to my yoga practice.

Photo of me Taken by Red Portrait

Happy New Ears

All is well with LJ's ear tube surgery.  We started the day at 5:30am and we got home by 12pm!  My dear, sweet friends:  Thank you thank you thank you for all your good thoughts and energy.  They worked!!  I asked LJ if his ears felt much better and he emphatically signed "Y-E-S"!  And as always, thank you to the doctors and nurses who made it such a short and sweet procedure...for all your hard work, we are so appreciative!  Now I'm off to snuggle with a happy camper.

Cannot Wait For Surgery Tomorrow

Big Bro Starting a Snow Ball Fight on Christmas Day

Annie the Wonder Dog!

LJ and Didi Form the Perfect Snow Ball

Happy New Year! May this be your year!






 
For the last month, our peanut has completed two full courses of amoxicillin and one full course of augmentin.  The amount of disgustingness coming out LJ's ears is the most in the history of ever; I feel like we've been to the doctor every week!  We have had little benefit from any of these antibiotics.  You see, he's lost one ear tube and the other one is dislodged but its in the wrong spot and too deep to extract in an office visit. We tried to get the procedure to extract and place two new tubes scheduled for two weeks ago.  Unfortunately we didn't get medical clearance due to a respiratory infection that LJ had.  So here we are, two weeks later. Poor guy is ready for a decent night's sleep and some comfortable new ear tubes.

I never thought I'd say "I'm excited for surgery!"  But in this case I will be relieved tomorrow.  We've got some ongoing eye issues as well, but I'll save that for another post (that will be another surgery separate from tomorrow's).  I'm holding hands with fear and bravery nonetheless.  The unpredictable nature of anesthesia always scares me and there's nothing worse then seeing your baby taken back to the OR.  Maybe on second thought, there is something worse.  Getting taken back to the recovery room when you see your baby for the first time afterward all hooked up to IV's and beeping monitors.  Please send you healing, positive thoughts our way.

Hot Brown

from Spoon Fork Bacon

In the spirit of Thanksgiving...here's a recipe I pinned earlier in the month in anticipation for all that leftover turkey goodness;)  

LJ and Nate's grandparents, Nanny and Babu are coming for the holiday.  (other grandparents, Didi and Bop are also coming:)   We're all very excited.  Feeling grateful for having these special moments with my family.  Feeling thankful for all the hours my mom stood in the kitchen lovingly preparing our family's favorite dishes and holiday traditions.  Wish I could go back and hug my mom's younger self now that I have my own wee ones.  And since it's Thanksgiving, I'm grateful for all of you friends who have showered us with support over the years.  Who have sent encouraging words or ideas for new therapies or procedures or that just-right pick me up when I needed it.  Those of you who have followed the blog so that my stories can be shared. I'm thankful that all we're dealing with, health-wise this holiday, is Lew's ear infection (ear tubes fell out. boo!) and a potential urological procedure. I'm also thankful for not having to cook dinner tonight;) We're meeting friends and their family at a local Chinese restaurant for a traditional non-Thanksgiving pre-feast celebration:)

So far, I've made the mashed sweet potatoes using the last from our CSA farm share, a Butternut Squash Cheddar Bread Pudding (also the last from the farm share), a Pear Pie, and lastly a Dark Chocolate and Pumpkin Cheesecake ala Marcel Desaulniers for our Thanksgiving day feast. Seriously, the latter might change your life.  Josh has made the cornbread-sausage stuffing and is on deck for roasting the turkey and making the gravy.  Oh, and Herb and Cheese Popovers.  We're enjoying cooking.  And thinking about cooking.  Come on over those of you who need a place to celebrate!

Flaky-Pear-Pie Recipe from Food and Wine

Dark Chocolate and Pumpkin Cheesecake 

Planning a post-holiday walk-off with my cousins' Nazlee and James, their kiddos, and my Aunt J and Uncle H!  We're having lots of family togetherness over here.  Lots of good food.  Lots of good times. Lots of good conversations.

Thankful for so much this year.  Lots of little things that add up to a big difference.  Just last weekend, LJ's new gait trainer arrived and he spent two hours walking in it. He slept well that night;)  One of the other things I am so happy about is Lewis' increased communication.  Just this week he has started a new gesture/adapted sign. "I don't know".  Ask him if he knows what's for dinner tonight, and he'll sign I don't know.  The sign for "know" touches the side of his forehead with the tips of his fingers and shakes out the flat hand and away from his face and then palms face up toward the sky.  I don't know. Ask him what's for dinner tomorrow and he'll sign "turkey", the letter "g" sign touches underneath his neck for gobble, gobble, you-know-what.

This day, Thanksgiving, brings up so much for me. Especially my fears for LJ's well-being...that he not suffer, that he not face too many challenges, that he be accepted, that he not be alone.  Wishing that I had some control over the road that lay ahead.  And also, having spent so much time in hospitals and doctors' offices, knowing that there are so many kids that have to overcome so much adversity.  Give your loved ones a tight, tight hug.  Be thankful for their health.  For now, I am just trying my own advice to just breathe deeply.  Just stay in this moment right now.

May you all have a wonderful holiday.  May you savor more everyday moments.  May you all find, peace, happiness and acceptance.  May you dance like no one is watching! (Had to throw that last one in there, honoring my little Nate!  He's been coming up with some fabulous dance routines...one of which was only just recently discovered...recorded... on LJ's iPad...the new iPad...the one with a built-in camera...that Nate figured out how to take videos of himself with his song of choice playing on the older, work iPad in the background.  HILARIOUS. )

Hot Brown Sandwich
Makes 4

Ingredients:
mornay sauce:
2 tablespoons butter, unsalted
2 tablespoons all purpose flour
1 cup whole milk
1/2 cup medium cheddar cheese, shredded
1/2 cup sharp cheddar cheese, shredded
1/4 cup fontina cheese, shredded
1 teaspoon garlic powder
1/2 teaspoon dry mustard
salt and pepper to taste

4 slices sourdough bread, lightly toasted
1 lb roasted turkey breast, thinly sliced
6 rashers bacon, cooked and crumbled
black pepper to taste

1. Preheat broiler on high.
2. For mornay sauce: Place butter into a small sauce pan and melt over medium heat. Sprinkle flour over butter and whisk together. Continue to whisk for 2 to 3 minutes, to cook out the raw flour taste. While whisking add the milk until fully incorporated, ensuring no lumps have formed. Using a wooden spoon stir in the cheese until well blended followed be the remaining ingredients. Season with salt and pepper and cook for 1 minute. Remove from heat and set aside until ready to use.
3. Place sourdough slices onto a baking sheet and top each with 4 ounces of turkey.
4. Top each sandwich with a generous ladle of mornay sauce and top with a sprinkle of bacon (you can serve now if you wish). Place the baking sheet in the oven and broil each sandwich for 1-2 minutes. Top with freshly cracked black pepper and serve.

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.

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 ;-)

Home Sweet Home

We're home.  Ear tubes were successfully replaced!  Dr N said it was a good thing because there was a lot of fluid in both ears and he was even able to reuse one of the former openings instead of making a new incision. Not sure if that makes sense but I'm not really functioning on all cylinders right now. Thanks Didi for your help this morning- I know it was much too early for you.  Noodles is sleeping in his big-boy bed as I write this! I'm off to take a nap : )

Update: LJ has been doing great and seems very happy now that his "ears" were turned back on. Here's photographic proof:

Starting to Bloom

The trees and plants are all starting to bloom here.  I love the winter but I am also ready for Springtime!  Changes are a happening.  For one, Noodles has moved out of his crib and has a new big-boy bed.  I am happy to report that the first night sleeping in it only resulted in waking up once at 1am.  One of LJ's ear tubes also fell out, so we are scheduled to have that replaced on Tuesday.  It should be a relatively quick procedure...the only downside is that he will be having anesthesia yet again.  Ugh. And since Noodles got new digs, so did Nate!  Nate is now the super, proud big boy with a new-to-us bunk bed (Thanks D!).  He loves the top bunk. "The upstairs bed is his favorite part because it's bigger then the ceiling!"  More pictures to come.


Didi just finished a master sewing project. Megan ( LJ's physical therapist) dropped off a harness and was wondering if we could get Didi's help making something similar. Apparently this version is no longer available at retail in the US. It is used to help kiddos walk and it looks, more or less, like a reinforced onesie with long loops coming off each shoulder. It allows the parent to stand up straight and use the straps to help hold the kid upright. Its a much quicker get up than putting LJ into his gait trainer especially if its gonna be for just a short time.  Now we have one with adjustable straps for either Josh or me to use.  Plus now Megan has one!!

Didi did a fantastic job and Noodles got to try them out this weekend. He and his parentals are very pleased. I think Didi could go into business with the demand for these adapted-type solutions for everyday problems in the life of a special needs child.

And completely unrelated, here is a picture if LJ with Emily at Monkey Business.  Its a music and movement class with lots of typically developing kiddos around LJ's age.

Some Shaving Cream...Hold the Mess

Things just keep on getting busier around here.  We might have to get Noodles right wrist and right hand casted. Serial casting has been found to provide patients with effective stretching when other methods do not post-botox.  You can read a Kennedy Krieger Institute article about it here. The botox doesn't seem to have helped- it may have made things worse. Noodles is really guarding his right arm and he is clenching his fist tighter than before. The OT at Children's made him a "resting splint" to wear when he is relaxing or sleeping. He didn't nap today as he was too busy working his way out of the splint!

Things should have opened up and we should have been seeing positive results after day 4; Its a mixed bag really.  The botox has at least helped his leg.  He has been enjoying practicing in his walker so much so that he even chose that activity over playing in a giant multi-purpose playroom at school on Tuesday.

Here's a photo of LJ at OT with the Children's therapist this week.  He's playing with shaving cream on a mirror (note how fisted the right hand still is). Yeah, he got messy. But at least he smelled nice and clean! We've increased all therapies in an effort to help maximize his progress. Twice a week OT, PT, ST, feeding therapy and aqua therapy (which Emily, who is kick-a$$, did all on her own today since I was over-committed).  Plus preschool, Hungry Hippos and Music Therapy and oh yeah, doggy fluid treatments involving needles and IV's (its TRUE love).  Four hours a day of therapy for the little nugget is too much. Fun fun fun! Does anyone wanna have group therapy with us soon?

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!

Highlights of Our Ch-cha-cha-changes

It's almost been one week post-op.  Here are just some of the highlights from the past week. LJ's hearing is much improved. He loves to hear my phone ringing, maracas shaking, Daddy singing, and he's even rediscovered playing with some of his old toys. He's not so fond of Tango barking, Nate melting down or construction trucks beeping all day long. His throat is recovering from the adenoids nicely and spoon feeding sessions resumed yesterday. (they've been awesome today with Noodles being able to swallow every bit of the 2 tbs each meal) He's still partial to the sweet potatoes (which we've doctored with brown sugar) over the green bean purees but what kid wouldn't! LJ's breathing also sounds a lot clearer- no more junky sounding breathing. It's really so clear that I almost thought he wasn't breathing because he was so quiet the other day. One other milestone is that LJ can now wave hello and goodbye to people with such purpose!

We had a Father's Day BBQ to let our daddies know how much they are appreciated. ( I think Nate actually ate three helpings of this coffee cake with Haagen-Dazs ice cream...that's how much he loves his Daddy.) Oh, and our farm share has officially kicked off with all sorts of yummy zucchini, chard and blueberries.  I even made a delicious vinaigrette of garlic scapes, Dijon, honey, balsamic and olive oil for salads and dipping.  It's ridiculously good.

Nate has been out of school.  Summer camp starts next week so we've been enjoying what little unscheduled time we have at the pool.  He's so proud (as are we) that he learned to dunk his head underwater.  Nate has also participated twice now, in LJ's music therapy sessions- which might be more aptly named "dance parties". And we've played in the sandbox in our backyard.

LJ has pretty much been fussy and off-routine since surgery.  He's been partying at night- usually around 1am for about an hour or two. And that's after we finally get him to go down at about 9pm. Wake up time has been anywhere from 5:45am to 9am.  So by Monday we were all a little bit fried and in need of some zzz's. Didi came on Tuesday and gave a much-needed respite & giving Nate some requisite one-on-one time.  Nate has really come thru all this just beautifully but he was starting to get over it as in "Please pay attention to me now!!".

But, this is all to be expected.  When I think about how much LJ has been hearing just in the last week, he is undoubtedly on sensory-overload. On top of that, he LOVES his walker.  He can spend more than an hour in his Pony gait trainer...exploring...opening and shutting doors...opening kitchen cabinets...feng shuing the dining room...taking toys from the living room to his room for safekeeping...unrolling the toilet paper in the bathroom. LJ's 4-level communication board will be here in a few weeks. We'll see how it goes and then we may look into getting an Ipad with a special, augmentative communication application called a proloquo2go. It's been getting a lot of good reviews lately and it's much more portable than the average communication device but the downside is Early Intervention won't pay for it.

And we're also getting a new caregiver.  Sadly, our awesome caregiver had given her notice while we were in NJ.  She is getting married at the end of August and then going back to school fulltime. Nate cried when he heard about it:( Needless to say I've been busy interviewing and now training a new caregiver.  Things are moving right along. More soon!

We're All Ears

Ear tube surgery is a breeze. Adenoidectomies a little more difficult...and sitting in hospital waiting rooms even harder, but we just got home safe and sound. Surgery was at 8am and we were admitted to the PICU for the afternoon.  Luckily we were discharged and didn't have to stay overnight. Right now we're grateful for a little Tylenol with codeine (a devoted Didi, wonderful doctors and amazing nurses). Thank you for all your prayers of healing and strength. We're all looking forward to recovery and tomorrow is a new day filled with new adventures.

“Survival and thriving. These are the poles between which the moments of our lives are strung.  The balance is tenuous, and the outcome for each of us is different. Yet we mostly start with the same raw stuff: skin, a mother, food, shelter, breath, and each moment as it unfolds — one after the next — right now. From these all the intricacies of our lives are made. No matter who you are, your day is occupied with the small repetitive tasks of living,  and it’s in these moments that we’re shaped; even as we’re dreaming of other things.”

— Christina Rosalie, A Field Guide to Now

"Turning On" LJ's Ears

We've just started our official journey to the (better) hearing world. After many months of fluid in LJ's ears causing moderate hearing loss and many, many auditory tests, his ear tubes/adenoidectomy surgery is scheduled for this Thursday. We've been patiently waiting ever since the test at St Joe's confirmed that it should help. Our first surgery date was May 24th which was then postponed until June 1st.  A bunch of snafu's later, here we are.

I've oftentimes wondered how LJ's voice will sound and what it might feel like to hear him saying "Momma", "Daddy", "Doggy", "Nate" or "Mine!". He's been so quiet ever since he was a baby (except for a good pension for crying) and now we understand that its probably because he never had the reinforcement of hearing himself cooing. To him, everything has probably sounded like it's garbled underwater.

I hope that he gets to hear the whirl of a fire engine whooshing down the street...or mommy singing him a lullaby...or Nate telling his baby brother how much "he loves him more than all the people in the town". I hope this procedure is going to give him the ability to start communicating orally. We've been trying to teach LJ some baby sign language but he seems limited by his motor function. It has got to be so frustrating to live in a world where people do not understand you. That's just me projecting all my neurotic, mommy worries on him.  Still, it's also our dream that this surgery could greatly impact his ability to swallow easier (removing his adenoids should help) and possibly eat like a normal, healthy toddler. We even wonder how much his balance will be improved- will it help him to walk or even sit in a propped position? We are so nervous about what lies ahead but at the same time we have so much hope.

L Cool J

Thought I'd share a before and after photo with everyone. Dare I say it, LJ's recovery is coming along beautifully.

Before:
















After:

Encore Une Fois: Surgery

How do we manage to get ourselves through today, any day, weeks, years? Of course, much needed get aways. The vacation with my cousins and Aunt Lenore and Uncle Vic in Hilton Head was wonderful: the smell of coconuts, warm beach, exploring a new place, yoga everyday, long hot showers, the sweet sound of kids' laughter (and meltdowns;). So today, we're making a break in our minds. More precisely, I'm playing mind games. This is my weapon of choice and my strength to get me through another surgery for Lewis.

It's 5am and we have a sitter coming in an hour to hang out with Nate while LJ prepares for Strabismus Surgery to correct his eyes at 7am. We hope the medical experience breaks a record and has him home and comfortable by the afternoon!

Think good thoughts for LJ please.

Edited 1:45pm LJ’s operation is completed with no problems and he’s home now, sleeping. He is apparently in no pain although he looks like he got punched in the eyes. His eyes look better (not crossed) but it will take his brain a number of weeks to figure things out and give him better sight. The doctor thinks he will likely have to do another operation later to fine-tune the results of this one. Thanks for all the well-wishes and positive thoughts!