Lucas Camilo

On Monday we had a major medical adventure: a six-hour long trip to Children’s Medical Center for a supposedly routine MRI.  It turns out that, despite Lucas’s severe muscle weakness, he can in fact move his head when he’s trapped inside a tube with his arms buckled to his sides and horribly loud siren sounds going off all around him!

Having never experienced an MRI ourselves we assumed it wouldn’t be that different that the multiple CT scans that Lucas has undergone over the past 20 months.  And unfortunately no one really prepared us in the weeks leading up to the MRI.  We asked to not have Lucas sedated, explaining that he doesn’t move much and that he’s never had to be sedated for other such scans.  But none of the nurses responded that a brain MRI takes 45 minutes and that Lucas would get strapped down with his head locked in the middle, staring straight up.  Had we known this we probably would have thought twice about sedation.

For starters, we had to change Lucas’s trach tube since there are bits of metal in his usual Bivona trach (the Shiley we switched him to is all plastic and thus wouldn’t be effected by the powerful MRI magnets).   Then we waited for a couple hours for who knows what, and then finally they started wrapping Lucas up in this crazy contraption.  We found out then that his head would have to be held mid-line, facing straight up to the ceiling, his least favorite position.  Even before Lucas was rolled into the MRI room the tears were already flowing.

The trip into the MRI room was shaky because they had to switch him to the MRI-safe vent and didn’t have the proper respiratory equipment to make the transfer.  Meanwhile, we had been told that he could listen to music but instead they stuck giant plugs on top of Lucas’s ears, eliminating that possibility.  Still, we got settled and gave him a final suction before sending him into the abyss, with Krista standing by the machine to hold the end of his foot, which was popping out of the machine.  Then five minutes into the lengthy procedure, with Lucas’s heart rate spiking and the two of us becoming increasingly traumatized, we realized that his head was in fact moving and made the call to take Lucas out and bring in the anesthesiologist.

Ultimately we figured out that they had been unprepared for Lucas, with his trach and vent, as apparently no one had really reviewed his file and made a call about what would be needed.  It’s a complicated situation that gets us thinking about responsibility with a medically fragile child: should we have made more calls in advance of the appointment, should the complex care doctor have done more to prepare us and the radiology department, or should the hospital bureaucracy be more on top of things as it relates to kids like Lucas?  At any rate, by the time it was all over and Lucas was awake and ready to roll, we were four hours late to see the neurosurgeon, meaning that we had to reschedule that appointment for another time weeks down the line.

So after all that we won’t get an official read on the MRI results for some time.  We did hear from one doctor that the results could show a slight increase in the size of his ventricles (you may recall that this was a big issue back when Lucas’s hydrocephalus – or excess fluid in the brain – nearly led to him getting a shunt) but that it’s probably nothing to worry about.

In more positive news, we had a new nurse come for the first time in a few weeks today.  Her name is “Tope” and she seems to be very diligent and determined to figure out Lucas’s sometimes complicated schedule.  There’s less than 2 weeks until Victor returns, but with Burke heading off to Seattle next week it’s nice to get someone else ready to help out.  We want to thank all our friends for stepping up during the two weeks in which we didn’t have a second nurse.  Various people stopped by for a few hours to play with Lucas while whichever one of us was around got some work done in the adjacent room, and it was a big help.  While “babysitting” usually implies parents leaving the house, these hours that we were able to consentrate on other things while Lucas was happily entertained felt like real babysitting to us!

Lucas had a great week last week, relishing the fun and power of his increasing vocabulary. His favorite sign has become the one for “all done” which he uses all the time, often times when he’s upset about something or sick of a game.  In effect, the sign is Lucas’s way of saying “no” and he’s perfected it just as he’s become more opinionated about things (or maybe he’s been opinionated for a while and just hasn’t had the tools to express himself).  The “all done” sign involves holding his hand up with fingers spread and moving it from side to side.  But Lucas doesn’t just use “all done” when he’s pissed – he also employs it when he’s in a good mood, at which times it’s followed immediately by the sign for “more.”  Anytime Lucas likes something – swinging, blowing kisses, singing, looking at himself in the mirror – he gives an “all done” at the peak of enjoyment, meaning someone needs to stop the swing, or the kisses, or the song, or pull the mirror away.  And then, as soon as we’ve stopped whatever it was that we were doing, he brings his mini-fist up and shakes it emphatically to make the “more” sign at which point the action resumes. When he’s really motivated he’ll even heave up the second hand and bring his hands together to make the full, official two-handed “more” sign as he beams with pride.

Our friends Daniella, Gabe and Rafi visited from New York last Monday.  It was a summer-like afternoon, so we sat out on the lawn for hours and grilled up gardenburgers (and shared our second batch of delicious sauerkraut.)  Rafi is about to turn one and like most kids his age he’s full of exuberant energy almost all the time. Unfortunately, Lucas does not identify with a small kid who is constantly in motion, so he gave Rafi the not-so-happy “all done”sign almost immediately when he came in the door. Fortunately Gabe indulged Lucas in an epic game of “all-done/more” while swinging in his chair, and after that Lucas seemed to lighten up and act at least a little more open to Rafi.

Daniella mentioned that kids at this age are learning an average of one new word every two hours, and Lucas seems right on track. Just in the last week he’s learned signs or hand motions for nearly a dozen new things, and he constantly surprises us with words he understands. Along with “all done” his favorite gestures right now are the two-handed sign for “more”, his modified sign for “dance” (the index finger bobbing up and down) and “two fingers” – touching his index fingers together with pride, something that, as far as we know, has no meaning other than “aren’t my fingers cool?”

"I guess Rafi isn't such a bad guy after all"

First, here’s the latest (cute) Lucas video – you can see he’s getting pretty good at clapping and snapping!
Lucas had a great time with his Gramma Susan, who left Tuesday afternoon after a full 6-day visit. Lucas clearly reveled in the continued grandparent love and adoration, picking up new tricks, words, and games. It was relieving for us to have Susan around as she’s willing to pick up a book any time Lucas had a free minute (and Lucas almost always has a free minute – or hour when it comes to turning book pages.)

Frequent blog readers will remember that Lucas’s Stansbury-side grandparents were here just a few weeks ago, and that all of them plus his Aunt Megan were here just a couple months before that. Last week, when Victor heard that Lucas’s Gramma was coming for another visit he exclaimed, “Oh Lucas! You’re a rich man! So many people coming to visit you!” It struck us as a beautiful way of describing the good fortune we have, and a kind of “richness” we might really embrace. All three of Lucas’s living grandparents are healthy and excited to travel, have the means to do so, and are willing to make frequent trips across country to visit us. And, all of them (and the rest of our family) have come to love and accept and treasure Lucas as he is. Indeed, Lucas life is filled with riches.

Nonna and Papa (aka Lucas’s grandparents/Burke’s parents) were in town this past weekend for a short visit, and Lucas loved every minute of it.  He took advantage of their time here to take them for a long walk in the park on a beautiful Saturday afternoon.  He got in multiple tub baths, and lots of cuddling, singing, book reading and throw-things-out-of-the-crib-game playing.  He got Papa to help his Daddy build him an indoor swing.  And he showed off his increasing ability to communicate.

Lucas is getting speech therapy to help him figure out how to best communicate what he needs, and we’re offering him all the options — pointing at objects, pointing at pictures of objects, pictures with sounds on the I-pad, sign language, and verbal language.  Lucas seems to be considering all the options, but the one word he most definitely knows and uses is the sign for “more.”  (American Sign Language uses two hands for more, Lucas uses one.)   At the end of a song, or at the end of a tickle, or at the end of any game Lucas has invented, he pulls one hand up and makes the knocking movement for “more.”  Sometimes it’s small and looks like a request.  Sometimes it’s fast and enthusiastic and more like a demand.  We finally got video of the more sign, which will show you what Lucas thought about his first time on the homemade swing:

It’s been over a week since we posted last, but not for lack of material. Lucas is perfecting his rapid-fire pucker kisses.  Burke has shifted into a new position at work.  Krista is taking another writing class. And all three of us are excitedly anticipating our first batch sauerkraut, which is now 2 1/2 weeks into fermentation and making the whole house smell like a juicy compost pile in August. The smell has been so pungent at times that we’re thinking we might spare Lucas on this first experimental batch. But assuming the two of us come through the first kraut unscathed, Lucas will definitely be getting sauerkraut in his smoothies very soon. (If you haven’t caught wind of the amazing health benefits of natural fermentation, check out Sandor Katz, www.wildfermentation.com.)

Speaking of Lucas’s amazing foods — he’s still eating well and growing (length-wise more than girth). We saw a new G.I. doctor last week, and she was great. Not only was she was very supportive of Lucas’s homemade smoothie diet, but she made it a point to ask us a few times if we were getting everything out of the appointment we needed. Such a relief, and such a contrast to past experiences!  Since Lucas hasn’t gained much weight in a couple months we’re adding a little bit more avocado and some coconut oil to his food. The other day we had fresh pineapple, so Lucas got his first ever pina colada (plus beans and broccoli and carrots).

Burke’s in New York City this weekend for a Resource Generation meeting, so it’s just Lucas and Krista at home for the weekend. This morning we had friends over for brunch and a raucous game of Speed Scabble/Bananagrams. Lucas was quiet at first (maybe suspicious of people who could have so much fun with a stack of tiles of small letters) but he warmed up to having all the company.  He happily showed off his xylophone and kissing skills, and was thrilled to have more people read him books. He even twisted Janelle’s arm until she agreed to do a dramatic reading of Make Way for Ducklings. It was a great day, but we’re looking forward to having Burke home tomorrow night.

2010, the first full year Lucas lived from start to finish, is over.  It’s one of those years that went by way too fast, with a lot of ups and downs and blurry periods in between.  We thought about writing a little “best of” list as part of this blog post, but didn’t get around to it since we’ve been so busy with family in town.  And besides, we’ve got more important things to talk about: an update on Lucas.

Family visits always seems to bring out the best in Lucas and this one has proved to be no exception.  Krista’s mom and sister arrived on Christmas Eve and left on Thursday and in between got a lot of quality time with Lucas.  Burke’s parents arrived Monday, overlapped briefly with Megan and Susan for a few days of flurried activity around the Han-Stans household, and are still here through early next week.  Everyone is amazed by how much Lucas has grown lately, and happy to see him in good health.  Most exciting for all of us are some small but significant developments in the past few weeks.

As we mentioned in previous posts, Lucas is becoming more and more interactive.  He’s got his “itsy-bitsy” spider hand-movement down, along with the hello/goodbye waive, along with the high-five, and a few other tricks he’s working on.  He has become more and more deliberate with each motion and seems to be more confident about what exactly is going on when each motion is made.  Meanwhile, just in the past few weeks Lucas has began really showing his enjoyment of different sensations, in particular feeling with his hands.  We’ve built up quite a collection of “touchy-feely” books and his current favorite is “Where’s my Snowman?,” which his Great Aunt Penny and Great Uncle Steve gave him for Christmas.  The other day Lucas was sitting up in his chair and kept flipping back to the page with the fuzzy mittens, and then running both hands over the rough green, surface as he smiled with glee.  When we turned a few pages to the one with the snowman’s rough buttons, Lucas would feel the surface for a moment before slowly and deliberately flipping the pages back to the green fuzzy mittens.  Then he’d smile and rub both hands over the pages again.

Lucas is also becoming so much more playful with his actions.  And like any kid his age, he enjoys constant repetition of a new favorite game.  He loves to grab a rattle or wooden spoon and launch it over the side of the crib, only to have his daddy pick up the object in question and place it back within his reach.  He then launches it over the side again and wiggles with glee as Burke disappears to pick it up, a moment that is often drawn out as Burke hides out of sight, waiting to bounce up and hand Lucas the rattle once again.  This went on for a good hour the other night, and it was nearly 11 pm by the time Burke threw in the towel and hid the rattle away for the evening.  A few nights later it was Papa’s glasses that provided the object of the game, with the challenge being to reach up, grab them in the middle between the eyes, and slowly pull the ends over Papa’s ears… followed by triumphantly shaking the glasses in the air once they were free of Papa’s face.

The other thing that is really cool is how much Lucas recognizes us these days… and how much he shows it.  It could be that for some time he’s gotten excited when mom or dad comes home after being gone for the day, but has been unable to express his excitement because of the limitations of his disease.  Whatever the case may be, lately when one of us walks into the room and says “hey Lucas!” a huge smile appears on his face, he starts wiggling furiously (at least as much as his weak tummy muscles will allow), and usually throws in a vigorous double-handed waive.  Oh yeah, and he also does a version of this routine when Victor or Florence arrive, or Nonna and Papa, or Gramma and Aunt Megan, or other friends he hasn’t seen for a while… but needless to say, there’s an extra sparkle in his eye for mom and dad and it makes our hearts melt every time.

With lots of good stuff going on for Lucas lately we’re all excited about what 2011 may bring.  Though we don’t have time to reflect on all the challenging and wonderful things that went down over the past year – from Lucas being diagnosed with Myotubular Myopathy in February to organizing our first public event as parents of a child with disabilities in December – we are grateful to be together with Lucas and for all that our friends and family have done to support us this past year.   And we’re definitely grateful to have kept this blog going as long as we have.  Thanks for reading and continuing to comment.  We’d love to hear your highlights of 2010 and what you’re looking forward to for 2011!

The past week was great for Lucas and for us, and we’re finally getting a chance to sit down and write about it.  The highlights were an extremely informative (and long!) visit to Children’s on Thursday, as well as the “My Baby Rides the Short Bus” book event/community gathering featuring parents of kids with special needs that we helped organize this past Saturday.  In between Lucas came down with a cold (and got over it quickly); our friends Jesse and Alessandra visited us from New York (and announced they’re expecting a baby!!); we escaped and went out on Friday night together for a fun Cabaret fundraiser for DC Jobs with Justice (complete with hand-dancing lessons); and finally, we decorated our first Christmas tree with Lucas.

Our long day at Children’s last Thursday is worth recounting because it featured one of the best visits with a team of medical professionals that we’ve ever had.  After an appointment with the complex care doctor — who helps tie all of Lucas’s specialists together and keeps on top of his overall health plan — we went downstairs to the MDA clinic.  It took a while to get Lucas settled in and record the requisite vital signs (he’s now about 33 1/2 inches long!) and by the time the team of doctors and therapists arrived Lucas was napping in his stroller/chair.  We started talking with them and soon Lucas woke up, and fortunately he was in a good mood and ready to perform.  The physical medicine doctor and researcher had never met Lucas before but presumably had read lots of reports about him.  They were genuinely impressed at how well he is doing, and in particular, extremely positive about his cognitive development and potential for interaction and communication.  The doctor said almost immediately “get him an i-pad!” and later handed us a prescription.  It’s mind-blowing to imagine that these hip computer things might help our baby tell us what he wants and feels, but since we’ve heard success stories from other parents, we’re willing to try.

The doctor and physical therapist had lots of other great ideas.  Maybe most significantly, they helped adjust Lucas’s stroller/chair.  Since we got the chair back in July we’ve struggled with it.  His big head makes him slump him down and either get spaced out or appear uncomfortable.  These doctors, though, looked at the angle of his hips and called in a technician who loosened a few screws and opened the angle of the seat slightly.  We put Lucas back in the chair and he actually smiled!  Suddenly he had more stability in his torso, meaning more room for his lungs, meaning more oxygen and more energy.  All five of us stood and ooohed and aaahed at how great he looked, and at the miracle of a more space in his torso bringing so much alertness to his face.  (Note to any slouching readers: this applies not just to Lucas, but to you, too!  It is good for all of us to sit up straight, and not take that space for our lungs for granted.)

The great ideas and positive reinforcement around Lucas’s growth and development went on for over and hour.  We then eventually we met the new neurologist who’ll be working with Lucas, a young doctor who showed interest and willingness in do research around Lucas’s disease.  By the time it was all over we had been at Children’s for six hours without lunch and we were all ready get home.  But unlike past visits when Lucas spent the day at the hospital getting poked, prodded, measured, and interrogated without getting much in return, this time we went away excited, with dozens of new ideas.

Two days later, we hosted the “Baby Rides the Short Bus” event.  About 45 people — many of whom were our wonderful friends! — turned out on a cold Saturday evening to listen to five parents tell their stories of raising kids with disabilities.  Krista welcomed everyone and introduced all the parents who would share.  Jen Silverman, co-editor of the book, came from New York and opened the stories section of the event by reading from the book.  Then Tricia, a mom of 2 and blogger from Baltimore read from her blog.  Then Jane, a mother of five from DC and activist with Empower DC, told about her son, Andre, who sat next to her.  Then Burke read from our blog (and got the whole crowd teary-eyed), and then Doreen, mother of two and director of the local affiliate of Family Voices, talked about her family and about the challenges of discrimination in schools in Washington DC.  We then opened the floor and more parents of kids with special needs shared their stories about ignorance, discrimination, fighting for their kids, and the joys of raising unique families. We ended with a potluck dinner and time for people to meet and share information.

It was definitely humbling for us to share the stage with parents who have so much more experience than us, and relieving to be in a space where we could talk about how hard it can be to people who know what we’re going through and, as much as anyone can, what may lie ahead for us.  We were also really happy to learn about new resources — including Jane and Doreen, the two other local parents on the panel.

One of the amazing moments near the conclusion of the event was when one parent asked the crowd how many people were parents of kids with special needs (a few) and how many were friends of parents who have kids with special needs (a lot).  She said, “Wow.  I don’t have any friends left who are parents of ‘typical’ kids.”  She said that most of them can’t handle her family, and they get embarrassed or impatient when her kids act “strangely” in public.  So the success of the event wasn’t just making connections with other families who are facing similar challenges as we are.   Ultimately we all want our kids and families to be loved and embraced by everyone, so it was powerful to have so many friends and strangers there to listen to our stories.

On Monday Burke returned from his retreat in California.  It was a great homecoming with Lucas – the little guy was all smiles when Burke came in and they spent a lot of time reconnecting, with Lucas touching Burke’s beard to make sure it was really him.  Krista’s mom arrived later that day and has been here all week, reading, playing, and taking beautiful fall walks with Lucas.

Lucas is feeling lots better this week, and the pinkness and puffiness around his eyes is almost totally gone.  Maybe because he feels so much better, or maybe because of his expanded audience, he’s been making lots of new facial expressions and sounds.  He’s getting louder and faster with the tongue clicks, and on Tuesday afternoon he developed a “kissy face”, with the bottom lip coming to his front teeth and his cheeks sucking in slightly.  He’s also brought back what we call “badger face” (sucking in his bottom lip), which he was doing slowly earlier this summer.  So badger face is back, but it’s not always slow and deliberate any more.  The video below shows better than we can describe the amazingness of the rapid-fire badger conversation he had with his Gramma.

And finally, just to really wow his audiences, Lucas has been experimenting with combining badger face and vocal sound, which comes shocking close to saying “ma-ma.”  Or sometimes “ma-ma-ma-nananananananaaa.”  Have we mentioned he’s brilliant lately?  We’ve been so wowed that our upstairs neighbors report they can hear us laughing and cheering for Lucas through the ceiling.

It’s not all about work and performance around here, though.  At the end of the day one of Lucas’s greatest skills is still the good ol’ fashioned snuggle.