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Archive for the ‘progress’ Category

It seems we’ve entered into a new phase of life in our household; Nik has, apparently, gone from not interested to ravenous as a pack of teenage boys in a matter of days. It feels like my day —which used to revolve solely around shuttling Nik to his various therapy appointments, playing with and teaching Nik things like how to put on his shirt —now revolves constantly around food.

If I’m not preparing the next meal for Nik —a fairly labor intensive process thus far, requiring grinding of foods and mashing and mixing of flavors to appeal to his indiscriminate palate but which will also provide balanced nutrition —then I am shopping, cooking, thinking, planning, researching, and feeding the child. Toss in doing mostly the same for my husband (though he’s quite capable of feeding himself, thank goodness), then you can begin to understand why I feel like a junior restaurateur. Oddly enough, I did a stint as a restaurant manager in my long ago twenties but that’s a story for another day —or not.

Still, I can only post so many images of my child stuffing his face or so many twitter posts about how much Nik eats in a given meal. It gets old after a while. Fortunately, we have not yet reached that point! Soon; I promise. But for now, allow me to revel in the glory that is my son’s ever-increasing appetite and advancing oral motor skills.

It’s only been a week since Nik started eating again. Sure, he’s been enthusiastically licking and slurping tastes from a spoon and sipping from his sippy cup for a while, but we’ve graduated to the level of actual consumption. Nik is now averaging roughly twenty to twenty-five percent of his daily nutrition by mouth! Today alone, he consumed nearly seven ounces of food by mouth at lunch.

Not only have we achieved a consumption of notable quantities, we’ve begun the next phase which is acceptance of the spoon when presented in a “typical” fashion. Yes, we still have to turn the utensil so Nik can take the occasional lick but he is cooperating more and more with accepting the spoon and with actually closing his lips around the spoon to clear it.

Some of you may wonder why that is such a big deal or why it’s taken so long to reach this milestone. If you haven’t experienced it, it’s difficult to explain in an adequate fashion but I’ll try:

Imagine if you spent a very large portion of your earliest days of life in this get-up.

No opportunities to learn to suck or swallow, no way to actually close your mouth completely —to even feel your lips touching together— and no way to move your tongue in any manner save for rubbing the very back of it on the tube stuck in your tiny throat.

Then, once you’ve graduated from all that awful stuff on your face and in your mouth, and you’re just learning to use your mouth for good stuff —like eating, someone starts to give you daily medications that make you feel funny and not very hungry. This lasts for two years.

Nik was just beginning to learn new oral motor skills when he was put on the seizure medications which —while they did prevent seizure activity, a highly important thing for his overall health and well-being— dulled his senses to the point that he lost all interest in food and all ability to recall the slight bit of oral-motor muscle memory he was beginning to develop.

In the sixty-two days Nik has been free of those medications, Nik has made such phenomenal progress —much of which I’ve talked about in other places —and he continues to push himself. It’s as if he is consciously trying to catch up on things he’s missed out on.

So, please pardon me for boasting and boring you with the minutiae of Nik’s daily eating habits. It’s been such a hard-fought battle —one I can’t even say is won yet. Someone asked me recently if this means Nik will lose the feeding tube soon; I honestly cannot say. I do know that he needs to make significantly more progress —including learning to actually bite, chew and swallow all of his food —before that discussion is even on the table.

In the meantime, I’m trying really hard to use each meal as a learning opportunity.

When Nik was in the NICU, I was unable to express enough milk to feed him. My doctor told me not to worry about it; he said lots of woman whose children are born so prematurely have this difficulty. What he couldn’t tell me though, was how to deal with the grief I felt over not being able to bond with my child in this most primal way; the knowledge that I would never feel my precious baby suckling while cradled in my arms. It was a bitter pill to swallow then and one on which I still choke in moments of sleep-deprived frustration. It can be mentally and emotionally exhausting for me —this struggle to let go of the guilt I feel around my inability to provide the one thing for my child that seems to be a natural and inherent part of motherhood —nurturing and nourishing one’s child with food.

Whenever Nik fights me about eating, my knee-jerk reaction is to take it personally or to get angry and I wonder what I am doing wrong or why it’s so damned hard. I have to stop and remind myself of, well, so much. That it is Nik’s process and that he is actually the teacher. That he has made such rapid and tremendous progress in spite of the constant barrage of sensory input he has to process with each and every bite. If I change a food, does he know what flavor to expect on his tongue? Is the consistency too thick or too lumpy? Is there too much fiber in his meal which will cause him distress later in the day or night? Does he do better when he’s holding his own spoon and trying to feed himself while alternating bites from my spoon? How much effort does that coordination take him; how hard is he concentrating and how tenuous is his concentration at any given meal?

It is such a deeply intricate dance of give and take, watch and follow. That seems to be our norm in nearly everything these days and it takes a lot out of me. And yet, given the choice? I would feast upon this challenge like a glutton. The progress is too sweet to pass up.

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You’ve probably been reading or hearing a bit about NaBloPoMo and NaNoWriMo and thought, “Yeah, they sound really interesting but I’m not really into writing all that much,” or “I don’t have it in me to write something every single day.” Well, that may or may not be true —only you know yourself for sure.

However, these two campaigns have an element in common that even non-writers can benefit from. Both challenge the individual to dig down a little deeper and stretch a little farther than they think they are capable of stretching; the chosen method of challenge in these cases just so happens to be writing. If you’re a writer that’s a great thing; for the non-writers among us, fear not, there’s NaChYoMoNational Challenge Yourself Month! (Hey, it’s my blog! I can make up whatever I want!)

What if we each picked one thing that we struggle with or procrastinate about; something we simply don’t make a high enough priority to do? What if we each made the commitment to rise to the challenge? What if we pushed our boundaries or stepped just outside our comfort zones? Think of the changes we could affect in our lives, the accomplishments we could boast of, or the chores that would finally get done and crossed off that to-do list!

So, readers, I challenge you to join me in NaChYoMo. Here’s how it works:

Choose one thing —something difficult, something you’ve been avoiding or ignoring —that you want to accomplish this month and make a public commitment to do something each and every day in furtherance of that goal. It doesn’t matter what the challenge is. For some of us it might be an onerous task; for others it might be making time to pamper yourself. There are no rules except the ones you set for yourself.

Sounds easy, right? Betcha it’s not.

Are you up for it? Leave your goal in the comment section of this post —or post a link to your own blog —and tell us about what you want to accomplish and why it’s a challenge. If you need any specific support to make it happen, let us know that too. Then, go for it!

The rest is up to you to follow through or not. No one’s going to ask you to write about it every day (unless you want to, then, well you might want to consider participating in NaBloPoMo, too!). No one’s even going to check up on you unless you ask for that. But, I hope at the end of the month you’ll check back and let us know how you did so we can applaud your efforts!

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The personal challenge I am going to tackle is to do something every single day in furtherance of truly cleaning and decluttering my house. Truly. We’ve lived here just over three and a half years and are still tripping over unpacked boxes and miscellaneous piles of crap in our loft. Our filing system consists of stacks of papers and items strategically placed in the dining room, the living room, our bedroom. Ironically, Nik’s room is about the most organized in the house. If I’m brutally honest, our house has become a manifestation of our collective exhaustion and mild depression. The chaos is slowly eating away at us both.

We have had lots of excuses for not dealing with it once and for all. First, it was the fact that Nik was so sick for a while. Then, the not sleeping through the night for nearly two years. And let’s not forget Niksdad’s nursing school, or Nik’s many appointments for feeding, speech, PT, OT. Certainly, those things take a lot of time and energy; so does living in a chaotic environment. And the chaos, besides being mentally and emotionally draining, does not support our longer term goals of a nice home, home schooling our son, entertaining friends, and generally “having a life.”

Not anymore. This month, I am going to tackle one room at a time and finally get my house back. In the process, I’m willing to bet that I’ll get a whole lot more. I may or may not write about it here on the blog but I’ll share my progress with a few people; I tend to need the accountability to keep me motivated until the habit becomes ingrained.

I hope you’ll join me in my own version of the Na-blah-blah-Mo phenomenon. Let the journey begin…

Image courtesy of Inmagine

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Talk about a lesson in trusting yourself. In the five weeks since Nikolas took his last dose of seizure medication, we have witnessed the following:

He’s begun showing a voracious interest in food again after two years of not eating; he wants everything from our plates and wants to feed himself. He’s not actually biting and chewing yet but he is making tremendous progress with pureed and thickened foods. And he’s tolerating all kinds of new textures such as meat (!!), breads and bagels, tortilla chips, slightly chunky mashed potatoes, mashed broccoli, cookies…all kinds of things he never showed any interest in before.

He no longer wants to sit in his Kimba chair to get a full tube feeding by pump unless he is either in the kitchen while I am making dinner —and getting to share it with me while I cook —or sitting at the dinner table with us. Breakfast and lunch are now broken up into two rather large bolus feeds as Nik sits in his little Elmo easy chair. He even follows directions to pick up Elmo and “bring it over here” (usually near the sofa so I can sit and feed him) then makes a big production out of sitting down and patting his tummy to indicate he’s hungry. Yeah, he’s turning into a first rate ham.

He comes to the gate to tell me he is hungry by signing eat; if I ask him does he want apple or cracker (pretzels) he will indicate his preference by signing the right one, followed by please. He now signs please anytime he wants something. Then, I ask him to show me what he wants. In the last five weeks, Nik has learned the signs for book, ball, and watch. Well, technically, he’s learned the sign for time —as in Signing Time —but he likes to chew on my sport watch so I’ve taught him how to ask for it with nice words. I still have to prompt him some on that specific one but he’s really catching on fast.

He can also sign all done, open, shoes, and diaper now. And, very often, he will sign “ball, please” or “book please” completely unprompted when he wants a toy. This week, Nik actually stood in front of the armoire, patting his chest for please and said gah, gah.” You’d better believe he got that book right away!

He’s begun putting on his own shirt, helping to pull up his pants —and zipping them!—and he can pull up his socks, put on his orthotics, and shoes; I help him with most of those things but he does a pretty good job without me, too. He can brush his hair, feed himself with a fork and spoon, and consistently asks for more when he wants it.

My child —the one who is visually impaired, didn’t walk until 15 months ago, and has cerebral palsy —has nearly mastered climbing the stairs —all by himself while holding a toy in one hand — opening regular door knobs, flipping light switches, and can get the lid back on his bottle and screw it shut 7 out of 10 times. He’s figured out how to climb slanted rock walls, small ladders, slide down slides in every possible position, and is learning to not only steer his little bike by its handle bars but is beginning to figure out the concept of pedaling —again, with minimal assistance from us. His motor planning abilities continue to amaze us as does his keen awareness of nearly everything going on around him.

We used to have to encourage him to stand up to walk to the car because he was always so focused on the ground right in front of his feet. Now we have to cajole him to continue walking because he is so busy picking flowers, picking up leaves, chasing squirrels, ringing the doorbell, running to the end of the driveway. It’s pretty cool; annoying sometimes but cool none the less.

Did I mention the daily kisses and giggle-fests with both Mommy and Daddy? The way he takes my hand to walk to the car and signs please to tell me he wants me to come to the park with him and his Daddy? Or the way he rides his bike from the family room to the front door because he heard us say the word park? Or the way he warbles in his beautiful little vibrato to ask me to sing opera for him? And when Miss Rachel is singing on Signing Time, he now grabs my arm and makes me stay to sing along. His current favorite is the “ABC” song (aka “A is for Alex…”). He always sings that when he is happy, happy, happy. And when I sing the last part that goes “X is for x-ray and Y is for yesterday; Z is for zipper and now we are doooone! Hooray!” He collapses in a fit of the giggles and claps wildly for more.

And when he’s sitting alone in his chair and watching Signing Time without me (a rare occurrence I can tell you), I peek around the corner from the kitchen to watch as he flexes his fingers and waves his hands along with Miss Rachel. I don’t know what he’s signing but he’s definitely trying to sign more words.

Tonight, as we were killing time waiting for Daddy to hurry home so we could put Nik to bed, I discovered that Nik recognizes NINE letters of the alphabet —A, B, E, M, N, X, Y, and Z. He can correctly identify them by pointing! We haven’t even begun to work on letter recognition so I know it’s all from the videos and singing. Well, and the fact that my kid is a freaking genius! I was blown away!

So when some doctor tells you “Your child won’t…” or “Don’t get your hopes up,” don’t you dare sell your child out and buy into that crap defeatist attitude. Sometimes all it takes is a belief that it can happen, the determination to create the possibilities —the right environment, the right people— and the ability to love your child more than you fear their labels and limitations.

“There are two lasting bequests we can give our children:
One is roots, the other is wings.”

~ Hodding Carter

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Lately, I’ve noticed that Nik has some difficulty with specific control over individual fingers; he still does not point and has some difficulty isolating his index finger to poke things with any consistency. Not surprising is that he also has trouble turning his wrists outward. He can roll them in toward each other just fine. I don’t know if this is a permanent feature due to his cerebral palsy or if it’s something that can be helped with OT. Only time and effort will tell for sure.

Meanwhile, it does make for some interesting sign language. As with most kids who are learning signs for the first time, Nik tends to modify many of the signs to suit his physical ability. Children tend to learn the signs which come in toward their bodies sooner or easier than those which reach away from them. For example, more— which is signed by tapping your thumb and fingertips of both hands together —is easier for a child to sign than play which is signed by folding the middle three fingers down so the thumb and little finger make a “Y” then gently rocking them back and forth.

But I digress with my rudimentary sign instruction!

Nik’s picked up lots of signs since we began using the Signing Time videos several months ago; rather, I should say he’s picked up lots of words. The signs, well, many of them look kind of similar. I like to think of them as multipurpose signs. I don’t know if Nik signs this way because it’s physically easier or if it’s mentally easier —he already knows the one sign and “the other is sorta kinda similar…” but not really. Here are Nik’s equivalents:

Please = Yes
More = Shoes
Book = Open
Share = Show Me
Bye-Bye = Play

He also knows how to sign eat, apple, cat, and cheese (gotta love that Silly Pizza Song!). He understands many more signs such as sit, stop, no, drink, wait, ready, up, down, outside, want, diaper, toy, car, and others.

I’ve been working with him to learn some signs for other toys he has so he can be more specific in his requests; it’s challenging when he stands at the armoire and looks up at that basket and simply signs please. So it was with great delight that I watched him express a desire for a different toy this weekend —a ball —one he doesn’t yet have a sign for.

This request was unusual because he doesn’t’ generally care to play with balls, though this particular ball holds him in thrall. I started to try to teach him the sign for ball; basically you cup your hands loosely and touch the fingertips together suggesting the shape of a ball.

Again, Nik had difficulty manipulating his fingers so he improvised. Here’s his newest equivalent:

Ball is now the same as…

Cheese!

That’s a mighty big cheese ball! (Cheese is signed by mashing your palms together and slightly twisting them.)

Not to be confused with a big cheese of another sort…

(Taken 10/03/08 at this event.)

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For five consecutive nights —hopefully six after tonight —my son has slept peacefully through the night. Ten to twelve hours.

Straight.

Through.

The.
Night.

The last time he did that my son was about two and a half years old.

The changes I have seen in my child in the past four days have been nothing short of miraculous to me —and that even accounts for nearly a full day spent in the emergency room over the weekend. (It turned out to be nothing they could identify and he’s completely fine now.) I’m trying so hard to wrap my brain around the words to convey the magnitude and scope of these changes; the words and changes are swirling so fast, I simply cannot make them make sense yet.

I can tell you this; there is not a single area of development that has not been positively impacted by the discontinuation of Nik’s seizure meds. Motor skills are blossoming, his appetite is returning and his resistance to certain food textures is diminishing. Communication is increasing as he tries to couple simple sounds and gestures in meaningful combinations. His four year old attitude when he doesn’t want to cooperate is crystal clear —yet he complies anyway. Problem solving skills are increasing at an alarming rate; I see new hazards in my home each day that I didn’t think he even noticed or could figure out how to reach.

Nik’s therapists and I have marveled at how hard he pushes himself; how he challenges himself to not only master a skill but to push through his fears or his sensory issues. The things he could not tolerate at all in the past two years he now attempts consistently; each time he pushes just a little farther in spite of his own resistance. What used to cause him excruciating cognitive dissonance now merely seems to challenge him to try harder.

My heart aches with the stretching it has done to accommodate my maternal pride, my hope, my ever increasing sense of ease; I can feel it oozing out all over people around me, too, as I comment on blogs or talk to friends and family. The love, the hope, the profound respect for my child and appreciation of his intellect and drive; it’s all so much larger than I have allowed myself to embrace these past couple of years.

I feel like we’ve landed in Oz and everything has become technicolor.

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It’s been a beastly week around here in terms of Nik’s Lamictal withdrawal. As the dose tapers downward and the cognitive abilities soar upward —well, it’s a delicate balance and something’s got to give, right? Nik’s decided sleep is the thing most easily dispensed with; only trouble is he didn’t ask my opinion on the matter. I am firmly in the camp of those who feel that sleep is non-negotiable. Unfortunately for me, he’s a master negotiator.

I’ve been tired and whiny; my body is out of kilter and my moods have been swinging like Foucault’s Pendulum in a storm of magnetic particles. Niksdad has been buried in schoolwork, clinicals, and paying work; on his one day off he is ensconced in books and —much as I love him dearly —utterly useless in providing any sort of break for me.

In a desperate attempt to minimize some of the middle-of-the-night energy surges and sensations which have been waking Nik between one and three each morning and lasting for several hours —or which simply result in starting our day at those insanely early hours— we’ve shifted Nik’s med schedule a bit. Unfortunately, it seems to have a strong impact on either the middle of the night or bedtime; a bit of a watered down Sophie’s Choice, if you will.

Today, with the shift in the schedule and the subsequent slight (and I mean ever so slight) overlap in doses, Nik’s broken out into THE RASH again. Good gracious! It’s getting to the point that I’d be just as happy to stop the meds cold turkey and tough it out for a week or so. At the rate we’re going —given the upsurge of undesirable symptoms which accompany each dose adjustment —this hell could last another twelve weeks. Unless something seriously changes, this mama isn’t going to make it that far.

Of course, the flip side to all of this is the sudden increase in Nik’s appetite, social interactions, blossoming personality, and expressive language. He’s taken to drinking Danimals yogurt drinks in lieu of a snack via his feeding tube; he’s even allowed me to feed him Greek-style yogurt (which is quite thick, like sour cream) with cherry puree mixed in —and let the spoon enter his mouth instead of just licking it. He’s learning to identify colors and shapes and sort things (some). He’s requested toys and his shoes completely spontaneously —and in context; he’s beginning to master the ability to make choices; he expresses “No!” —perhaps not so articulately as I’d like but very clearly; he’s helping to clean up his toys, taking turns, and learning to wait. It seem as if things are happening so rapidly that it’s hard for me to keep up and remember all the changes!

But the greatest gift for me in watching Nik’s rapid development is his sense of humor; he has an apparent love of the absurd. I’d try to explain but I think this will illustrate it better than my words could ever do:

I mean, who knew the letter E could be so darned funny??

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ETA— For my visually impaired readers, these are two pictures of Nik drinking a yogurt smoothie through a straw all by himself. This is big, big stuff.

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