Archive for the ‘Mary Poppins’ Category

Nikolas is still in the process of learning how to communicate choices. Tough for a nonverbal little guy with lots to say. It’s not a precise science; more of an inexact, interpretive art which we practice every chance we get.
A typical encounter usually goes something like this:

Me: Nik, do you want to watch Mary Poppins? Can you tell Mommy yes or no?
Nik: (No response.)
Me: How about Signing Time? Can you tell Mommy yes or no?
Nik: (No response.)
Me: (Holding out the cases for the respective DVDs) Nikolas, can you show Mommy which one you want?
Nik: (Takes one of the cases from my hand.)
Me: Oh, you want Signing Time? Okay.
Nik: (Throws Signing Time to the floor and takes Mary Poppins from my hand.)
Me: Oh, okay, you want Mary Poppins instead?
I put Mary Poppins in the player; as the opening credits begin, Nik wails in frustration and flings the case to the floor.
Me: (sighing) Nik, do you want Signing Time instead? Can you use your words to show me, please?
Nik: Pats his chest to say “Yes, please.”

Me: Nik, do you want to watch Mary Poppins? Can you tell Mommy yes or no?
Nik: (No response.)
Me: How about Signing Time? Can you tell Mommy yes or no?
Nik: (No response.)
Me: (Holding out the cases for the respective DVDs) Nikolas, can you show Mommy which one you want?
Nik: (Takes one of the cases and very deliberately presses it against his lips in a kiss.)
Me: (Startled) Oh! You want Signing Time?
Nik: (Points his right index finger into the palm of his left hand —sign language for “show”— then pats his chest to say “please.” As soon as Rachel appears on-screen, Nik begins to clap wildly.)
You could have knocked me over with Yankee Doodle’s feather!

Happy Independence Day, indeed!

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In an effort to support Nik’s intense and newly blossoming desire to communicate, I’ve been willing to try almost anything. To that end, I’ve become a convert to a near fanatical movement sweeping the nation in throngs of babies and small children. Even conservative media outlets have bought into the hype!

I’ve resisted the lure for a long time. I had a plethora of what I considered very valid objections to joining the movement; the time and expense were too great, Nik didn’t have the coordination to perform the requisite actions, and I would be the one doing all the work…and so on.

Well, like any good cult, I found myself drawn in, curious to find out more from the likes of these die-hard followers (her, her, her, her, oh and her, too). I kept reading about the enjoyment their children got out of it, the diminished stress levels they personally experienced as a result and— gosh darn it— how cute it all is! Being a sucker for cute, devoted to my son having more enjoyment in his life, and a slave to my own stress, I simply had to check it out.

I was hooked. But how to support the habit? The library. Yes, it’s true. Even the library is on board!

You know, it’s said that a cult will make you turn your back on those you love. Well, I hope Mary can forgive Nik his betrayal; apparently, he’s got a new main squeeze. Her name is Rachel. All I have to do is start to sing a refrain of one of her siren songs and Nik starts smiling like a love sick schoolboy. No, really, I mean it; he even begins to blow kisses to the air! Sorry Mary, it’s been a jolly holiday. But this thing with Rachel? Well, it seems pretty serious.

Consider it a sign of the times. And the times…they are a changing!

Nik getting his Rachel fix

Nik spontaneously signed “eat” for the first time this morning…
while watching the video, of course!


The use of cult references is intended for purely humorous effect. Please accept my apology for any offense given; it is entirely unintentional.

In the interest of full disclosure, I must say we have been working with Nik using the sign for “eat” for a while now. He understands it, he will mimic it if he’s specifically asked within the context of meal time. He has not, before today, ever spontaneously signed this or any other sign.

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Do you think I should be jealous?

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So much to write about and so little time lately…

Nikshouse is healthy again. HURRAY! Thanks everyone for your good wishes and thoughts. Nik is completely over his summer cold and I’m on the tail end of mine —having sounded like a cross between Greta Garbo and Kermit the Frog for a few days there. Believe me, it wasn’t pretty! Nik’s stoma (g-tube site) is healing nicely and doesn’t seem to bother him in the least now. If only we could figure out the ear thing. If you’ll pardon the pun, it waxes and wanes; sometimes it seems to hit out of the blue and others we can sort of predict when it’s going to be a bumpy stretch. We’re somewhere in between right now as Nik slept through the night last night for the first time in a while. Alas, Niksmom did not.

Blame that Potter kid! I finally laid my hands on a copy of the new HP book and simply couldn’t put it down until the wee hours. I feel like someone might feel after being zapped with a cruciatus curse. I have no one to blame but myself. Sigh…it was worth it! LOVED the book. I won’t spoil it for anyone by discussing it here.

Let’s see, where do I begin? Wow, all of a sudden the lyrics to the theme from Love Story started running through my head. Think about it; they’re very apt when applied to a parent-child relationship. But I digress.

Nik had his evaluations with the new PT, OT, and SLP on Monday and Tuesday. We went for his first sessions this morning and have scheduled something at least three days a week for the next few weeks. I am so impressed with the therapists already. They zeroed right in on some of the key things we’ve been concerned about within the first few minutes of the evals. The greatest part is that the OT, Miss D (not the same Miss D from school), wants to spend a great deal of time working on just sensory stuff with Nik. Hallelujah! We’ve been asking for someone to do that all school year. She’s even contacted the pediatrician about increasing the number of OT sessions per week so she can work with Nik before each of the OT and Speech sessions.

The physical set up at the facility (I’ll call it the “gym”) is wonderful. Something for nearly every level of ability to accommodate all sorts of abilities while providing challenges, too. Today, Nik actually climbed up a ladder (with some help from Miss T, the PT) to a sliding board. Not steps…A LADDER. Who knew he could do that? Certainly not I. There are separate rooms for quieter, more focused activity which is where Miss D went through a pretty rigorous brushing protocol and did lots of joint compression before trying some vestibular activities with Nik.

We’ve made an interesting discovery. Rather, I should say we’ve confirmed something we suspected. Nik has some pretty significant insecurity about not having his feet or his trunk somehow firmly grounded. Miss D put Nik in the vestibular cradle/net swing (which is only 6 inches off the ground) and he completely freaked out. Screamed himself purple, thrashed and bucked until he got himself out of the swing. This cannot possibly be the same child who used to adore being cradled in a blanket and swung through the air by his Daddy, can it?

Nik had the exact same response when he was placed on one of the large therapy balls. I know it is something that the PT and OT will help him with —developing a stronger sense of where he is in space, but it was excruciating to watch him in such a panic. Mind you, neither Miss D nor Miss T persisted in any activity once it became clear that Nik was truly panicky. But the wildness which overcame him was instantaneous and heartbreaking.

On a happier note, Miss D and Miss T both feel that the sensory work will help Nik a lot. They both said they saw a significant change in Nik’s posture and muscle tone, as well as his ability to stay focused on an activity for longer than a minute, after a good 20 minutes of sensory activities. I did see somewhat of a difference. I guess I was just wishing that it would so immediate that Nik would remain calm and focused long enough to eat lunch when we got home this morning. No such luck.

Our eval with the SLP went well, too. Miss C, actually met Nik last summer when he started at school. She worked with him once or twice before she left for one of the charter schools in our district. She works at the school and the “gym”. She’s friendly and very informative. She is going to be working with Nik on some oral motor activities as well as looking at communications methods for him. We all feel that PECS is not really an option for Nik right now as he tends to put everything in his mouth (including the cards). Plus, Nik’s secondary “obsession” after doors? VELCRO. Miss C has her work cut out, for sure. We told her all the things we’ve tried for oral motor facilitation and she was floored. Hopefully, though, with the help of Miss D and her bag of sensory tricks, we might make some headway. Stay tuned!

Nik is making tremendous growth gains lately. My little guy who was once not even ON the growth charts —adjusted for prematurity or not— has made some great catch up growth. According to the nutritionist, Nik is now hovering somewhere around the 90-95th percentile for body mass! It’s all muscle, I swear! I watch Nik’s body lengthening and his legs getting more muscular; he’s losing even the toddler look he’s had about him. My baby is turning in to a small person, a beautiful boy. I still watch him sleep at night and see glimpses of the baby in his posture —but even those are becoming fewer and fewer.

Nik is now taking a few steps on his own throughout the day. A few weeks ago he would take a step or two then his eyes would go wide —as if he wasn’t quite sure how he did that —and he would plop to the floor on his bottom. Not so anymore. Now, he actively cruises along a wall and then lets go to take a step or two, sometimes three or four, and then launches himself toward a target —a wall, a door, a leg. Sometimes he will start to sit then stoops instead and places his hands on the floor. He cannot yet stand up without holding on to something but I see him diligently figuring out the mechanics of the thing. My days of even the slightest hint of peace are numbered!

Nik is also communicating so much more. No words but so many more consistent —and affectionate and funny —gestures and sounds. Now when putting on shoes and socks, instead of simply sitting between my legs, Nik must climb onto my lap and lean as close to me as he can without actually getting into my clothing! When brushing teeth or singing our bedtime songs, he does the same; he even admonishes me with a little squawk if I am not singing the right words or if I am singing too loudly. When I comply with his wishes, he sighs and settles back against me. Or he’ll turn his little face up toward mine and smile at me with a twinkle in his eye. Yep, gets me right THERE every single time. I kiss his forehead and give him a squeeze.

We don’t really need the words, but I long for the day I might hear his little voice say “I love you, Mommy. I’ll meet you in Dreamland.” I know that there are no guarantees in this life —for anyone —and I need to accept that he may not ever be able to articulate those words in the way I would hope. That is not to say I am giving up on the idea of Nik talking —very far from it. I will make sure he has every possible chance to learn to speak; I just won’t make it the be all and end all. That Nik has a means of communicating is far more important to me than the method used.

I have lots more on my mind but I think I’ll save it for another post (or two?). As my dear friend, Mary Poppins says, “Enough is as good as a feast.”

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Yep. The field trip to XBos that we thought was next week? Today. I dropped everything to go with Nik on this outing. Niksdad and I took Nik once before on a Sunday morning when they first opened; it was relatively calm and quiet and Nik did OK as long as we stayed in the toddler area. I was dying to see how he’d do in the big, bright, noisy atmosphere of screaming kids (and chaperones!) and whether he could “hang with the big dogs” on the larger structures.

OH YEAH! Miss J, Niks wonderful teacher, and I double-teamed him and took him up padded climbing hills, through roller-pad gates and mesh-connected tubes suspended many, many feet in the air. (Did I mention Niksmom has a mild fear of heights? CONQUERED FOR MY SON!) We even ventured to the tippy-tippy-top of the structure to brave the perils of the corkscrew slide. (Sidebar: I think Miss J lost a little skin on her elbows as Nik was a bit wiggly going down the corkscrew.)

Nik had a blast! He was mostly oblivious to the noise and had a wonderful time climbing, crawling, cruising wherever he could. He seemed to know when he needed a break because he would either simply sit where he was when the moment hit, or he would take my hand and lead me away. Fascinating!

I had zero hopes of Nik eating anything at lunchtime. He didn’t have his “special” chair, his massager (to help him alert his mouth), etc. The place was super crowded and noisy by the time we had lunch. My champ ate a half a jar of food for me; not a lot but more than I expected. Yippee!

We came home after lunch and Nik crashed HARD! Slept like a log and was really difficult to wake from his nap. I think he would have slept through dinner if I had let him! The pillows over the head? Nik’s doing. He does that when we bring him down from his crib and he isn’t quite ready to be awake. He buries himself under the pillows until nothing shows but a hand and a foot. He cracks me up…constantly!

On a related note — we’ve been watching lots of Mary Poppins lately; it’s Nik’s absolute favorite movie. Tonight, as we were getting Nik ready for bed, Niksdad and I both heard Nik “singing” part of “It’s a Jolly Holiday with Mary” — I kid you not! What a ham!

Thank you God, for another good day.

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Thanks everyone for all the good wishes…they must have helped Nik dodge the stomach bug “bullet!” Seems he’s fine after just a couple of days of crampy and cranky bouts. I have to wonder if the change in his enteral formula has made a big difference, too. It’s got significantly less dairy and his overall GI health seems better than ever before (knock wood!). I was worried b/c the last two hospital visits (stays, really —a week each time!) have been due to a GI bug that really knocked him down. WHEW!

In any event, it’s been a relatively uneventful few days; that’s always a good thing round here!

I’ve been trying some of the tips that B gave us during the feeding eval. While I wish I could say Nik is eating like a champ, but at least he is eating a bit more and is not fighting me as much. Maybe he is more ready now? All I know is that, for the past few days at least, mealtimes have been much nicer. Still godawful long — 20-30 minutes for oral feeding followed by nearly an hour for the tube feeding then the extra 20 minutes Nik has to remain upright because of his reflux. Multiply that by at least 4 meals a day and, well, you can probably figure out why I don’t get out much on weekends except to the park or for walks with Nik! But it feels like we’re heading in the right direction…bit by bit. Or should I say bite by bite?


We’ve been avoiding TV in our house for a while (sort of like Kristen’s house, too), but lately Nik has been getting very bored and restless with the usual toys he plays with while the tube feeding is going in. So I decided it was time to try a little distraction. Inspired by a couple of other families (here and here) who have been checking out our favorite nanny, I brought out our Mary Poppins DVD this weekend. I have to say, Nik is quite enamored of not only Mary Poppins herself but finds George Banks to be hysterically funny and laughs out loud when the penguins dance with Burt. Niksdad has even come up with his own lyrics to the “I love to laugh” song (the scene on the ceiling with Uncle Albert) which makes Nik crack up even when he’s crying!

You know the one — it goes “I love to laugh (ha ha ha ha), loud and long and clear. I love to laugh (hee hee hee hee), so everybody can hear. The more I laugh (ho ho ho ho), the more I fill with glee. The more the glee (hee hee hee hee), the more I’m a merrier me!” Nik laughs himself silly over this one! Niksdad, being the manly-man he is, has co-opted this tune for his own silly version which makes Nik positively HOWL with laughter no matter the occasion!

So, at the risk of completely destroying Niksdad’s street cred (he gave me permission!!), his version goes something like this:

I love to fart (thttt thttt thttt thttt), loud and long and clear.
I love to fart (phttt phttt phttt phttt) so everybody can smell.
The more I fart (insert sound effects), the more I fill with glee.
The more the glee (sound effects), the more I’m a pew-pew-er me!

Yep, gotta love my man! (Did I mention he’s a highly educated science-geek type? No, REALLY!)

So, there’s our dirtly little secret. Hee hee hee.


Ok, on a more serious note, I had a wonderful experience at Nik’s school this morning. I took him early so I could try to wear him out on the playground before breakfast. Um, guess which one of us needed a nap when we were done? Right! zzzzzzzzzzzzzzzzzzzzzzzzzzz.

Oh, sorry, where was I? Right, school.

I ran into the grandparents of a little boy who’s new to Nik’s class, J. J reminds me a lot of Nik when he started school a year ago —won’t bear weight on his legs, doesn’t talk, won’t eat, cute as a button (well, he is!)… He lives with his grandparents who, from what I understand, are basically raising him and his little brother with very little involvement from the mom. I’ve seen Grandma a few times and exchanged pleasantries and encouragement about J’s progress. Today, though, I met Grandpa. The first thing Grandpa told me is that Nik is the reason J is in this school.


Turns out when Grandpa came to tour, he was bowled over by Nik (probably literally, since he tells me he saw Nik wheeling himself about in the mobile prone stander) and the independence he saw in him. The teacher told him that Nik wouldn’t stand or walk when he first came to school. That clinched it for Grandpa. Grandpa is, apparently, a big fan of my son. I was very touched.

It meant more to me than I could possibly express at the moment he told me. See, when Nik was born, and often throughout our many, many months in the NICU, Niksdad and I said we wanted to make our experience —good, bad, scary, hopeful —count for something bigger than just our little family. It felt like God chose us to be Nik’s parents for a reason and God brought Nik to this world in the manner he did for a reason. I am not a hugely religious person but I do believe there is a reason for things that we may not always know or understand. So to know that my son —my family— is making a positive difference in the life of another child, another family… Well, it feels overwhelmingly good and like a big responsibility all at once.

I try to live and parent in ways that make me worthy of that gift. Some days I succeed more than others, but each day brings a new opportunity.

Today, life is sweet.

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