Thought Stew

I have so much on my mind —therefore on my endless list of things to write about, think about, research, or otherwise obsess about —it’s hard to know where to start and seemingly impossible to form elegant prose lately. (Well, that presumes that I ever had that specific ability!)

So, today I give you a simple brain dump. In no particular order…

Health follow-up: Nik’s still having some milder bouts of the persistent and weird pains that seem to be headaches but we really aren’t sure. We’ve gotten some articles from the neurologist about Red Ear Syndrome which can occur with migraines —but not always. So, we still have more reading and research, more data collecting and serious thinking to do before we take any steps toward medications. You already know my feelings about going down that road.

Eating: Like a pig. Seriously, three months ago the child was barely taking tastes of things and now he is voraciously grabbing at nearly anything. He’s taking in at least twenty-five percent overall by mouth on a daily basis. The percentage was a bit higher but we’ve had to increase his caloric intake significantly; when we weighed Nik yesterday morning, he’d lost weight —again.

Essentially, Nik’s down nearly a pound from where he was in August. And it shows. You can’t see it in pictures —mostly because I am not going to post photos of my unclothed child on the internet —but when he takes his shirt off, I can actually count his individual ribs from across the room and without my glasses! Seriously. His weight (and his height) now places him in the third percentile for his age group. His body mass index has dropped from the seventy-fifth percentile to twenty-third percentile. It seems no matter what we do we cannot keep weight on this boy. We see the nutritionist again in about four weeks. Meanwhile, we’re supplementing in simple ways by adding butter or olive oil for extra fats and calories.

Home schooling: It’s time to begin in earnest now that Nik has reached “official school age.” We are going to join a local home school umbrella group which will handle any attendance and record-keeping items with the school district so we don’t have to worry about any truancy visits! The task now is trying to find a curriculum that will challenge Nik without frustrating him —or me —into consistent meltdowns. I’m just beginning to evaluate some that have been recommended to me by various people.

Nik is showing signs that he is clearly learning and understanding so much more than he is able to communicate. I need to really assess where I think he is and what tools I need to help him develop in order to be ready for more advanced learning than he currently is doing. For example, Nik has pretty much mastered the alphabet in terms of being able to identify the letters on request. Apparently, it’s happening pretty fast with numbers, too! Just yesterday, I conducted a little test with one of his toys, asking him to identify numbers in a random sequence. It was slow and painstaking but it was one hundred percent accurate!

As I see it now, my biggest challenge —Nik’s most important goal at this point —is to find a way for Nik to communicate his intelligence with other people. I thought I had an idea of the path we might take to get there but now I am not so certain. Nik responds with some sign language when he is prompted to “use your words.” But he won’t use signs to initiate a request —we still get crying or physical prompting. I don’t think PECS is the right tool for him just yet. His visual scanning, tracking and attending skills are very poor. As a result, the cards become great toys or teething/mouthing objects with no real meaning to him. Similarly, the button devices we worked so hard to get for him still don’t have any concrete meaning for him and I cannot leave such things alone with him or they will be destroyed in a short time.

I think it’s time for another visit to the fabulous AAC guru we saw a year ago.

The next big challenge is to find ways to engage Nik that will help him develop a greater attention span. As I mentioned, he doesn’t scan and track well; this hampers his ability to stay focused —quite literally —on a task at hand. Because he cannot communicate yet in a way we can understand, we have no idea if it’s too overwhelming, too distracting, too painful, or that he can’t see things clearly. I think it’s time for another visit from the itinerant teacher for the visually impaired; maybe she has some exercises we can try to help him improve in this area.

Social Development: Nik has been giving very clear signals lately that he wants to play with us whenever we are around; he does not like to be alone anymore. This is both a blessing and a curse; it means I can no longer leave him playing happily in the family room while I tend to some other things elsewhere in the house. I still get small —very small —windows of opportunity here and there but it’s not enough. The upside though is that he is clearly becoming interested in interactive play. Not that you could have proved it from this week’s foray into a new play group. Still, it’s emerging.

The new play group is interesting; it’s led by the same therapists he sees for PT and OT, Miss T and Miss D, but it is very small. There are only four children —all boys — including another one named Nick; as Mom-NOS would say, I think he’s French, too. The format is the same as his old play group —you know, the one we had to leave suddenly due to his scaring all the children with his searing, screaming, head-banging pains. Uh huh, that one. Each week has a theme supported by stories, songs, some simple sign language (only two signs), and a variety of activities to engage all the senses.

This week, Nik seemed to be in his own little world as he wandered around the room with a musical toy in his hand. But there was a subtle difference this time; he was actually taking the time to explore things —touching the “snow” cotton balls or touching the stuffed snowmen. He also didn’t run into or over anyone on his way toward a toy or activity. A year ago he just plowed right through as if there wasn’t another body in his path! He even stepped around one of the other boy’s baby sister who joined us. He showed a much greater physical awareness of his environment than he has in the past.

I had to work hard to get him engaged in some specific activities but he did, ultimately, participate. For the first time, ever, Nik actually touched glue and helped decorate his own little snowman picture. Very big doin’s for my little guy! He even sat, mostly calmly, in the story circle at the end of the session; he wasn’t so much interested in the cute story about the old lady who swallowed some snow as much as he was in eating the vanilla ice cream cup snack! I fed him as he sat next to me like a baby bird —opening his mouth for each big bite.

It’s been a super cold week here —as it has nearly everywhere —with record temps and a small boy who likes to be unclothed. We’ve discovered that the play room is nearly ten degrees colder than the rest of the house; there’s not too much we can do about it — it’s a design flaw in the construction of this old townhouse and we can’t put a space heater in the room beacuse Nik doesn’t understand the boundaries of safety or the concept of getting burned —a concept I’d prefer remain theoretical for a very long time! We’re working on insulating places we can, caulking around gaps in the hearth, etcetera. Meanwhile, duct tape has become our daytime friend as well. Nik’s been a pretty good sport about it, too.

With Niksdad’s return to school —his last semester of his R.N. program —the responsibility for Nik’s every need returns pretty much to my shoulders. I forgot what an adjustment that is; I got spoiled by Niksdad’s month-long winter break. The transition has been a bit difficult for Nik, too. He misses his Daddy and knows he’s not getting the same attention he has gotten for the last several weeks.

Consequently, it’s not all been a bed of roses this week; like everyone, we’ve had our moments where we weren’t sure we would survive the next ten minutes or if we would sleep through the night. We did survive; we did not sleep through the night. There were moments of utter delight and sheer hell all woven together into a lush tapestry with hues so subtle that only the weaver would know they were there.

Yep, I know you know what I mean.

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Sucked Under

I’m here. Honest, I am. I’m nearly recovered from my sister’s beautiful wedding; it was a very special time full of surprises like the arrival of cousins we haven’t seen in more than ten years, and making new connections with family we thought was completely cut off from us. (It’s a long story involving divorces and family conflicts which go back to a prior generation.)

Anyway, things are moving along at quite a rapid clip in our daily life. Nik is doing phenomenally well and I promise to write about it soon. Niksdad is also doing well; he just got another “A” in his classes. I’m quite proud of him; I truly think he may be up for valedictorian of his class at graduation in May 2009!

Me? I’m still recovering from the wedding. More accurately, from all the food and drink that have totally thrown my body into a state of distress. To make a long story short, I’m not diabetic but I have some insulin resistance stemming from polycystic ovaries (PCOS). Every once in a while I con myself into thinking that I don’t need to be careful about what I eat and drink. HA!

I’m trying to rid myself of the evil sugar/refined carbs monster which has taken over my brain and body and left me in a stupor.

I suppose it doesn’t help that Nik is teething now, getting molars, and has been waking at night in pain. Once the Advil kicks in and the pain is gone, he is wide awake and wants to play until all hours. Last night was 10:45 p.m. to 3:00 a.m. His sleep cycle is out of whack, mine is too and it just seems so hard to cobble together enough coherent thought just to make it through the day let alone try to write a blog post.

I’m getting back to my normal self bit by bit and resuming my workouts with my sister. That should all help…I hope!

Meanwhile, I leave you with this belated Wordless Wednesday image. I call it “Fantasies DO come true!” (Note for my visually impaired readers; it’s a silhouette image of Niksdad holding Nik in his arms and standing with the vacuum cleaner! LOL —Yes, he actually used it, too!)

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Miscellaneous Stuff vol. 199

I’ve been so busy keeping up with Nik lately that I haven’t had a chance to share some quick updates. Sorry! Here they are —in no particular order:

The issue with Nik’s AugCom devices seems to be nearly resolved. I don’t know if the larger issue is worked out between the managed care organization and the vendors; frankly, I don’t much care as long as we get what Nik needs. I can’t fight their battles for them, too! The short version of the story is that the case manager managed to get someone at DynaVox to agree to order the AbleNet devices for us. I don’t know when they will actually be ordered and delivered; in the meantime, though, the good folks at DATI have been kind enough to let us continue to renew the equipment loan until someone else needs the equipment or Nik’s own devices are delivered to us.

Nik’s wild EEG experience was either really useful or not at all; we haven’t decided. The neurologist told us last week that the results showed no evidence of any seizure activity during the time it was recording. That means one of a few things is possible; either Nik is no longer having seizures (unlikely at this point), the seizures are under good control with the meds he is taking, or his seizures are now less frequent and there simply weren’t any in the twenty-four hour period captured by the test.

The good news though is that the mysterious pain episodes are not seizure related. We sort of knew that intuitively but it was nice to have it confirmed. That means we are now moving on to the next area of investigation —Nik’s meds.

This past week we did a short trial of increasing one med in preparation for decreasing another; it was a miserable failure (which is one reason why I’ve been quiet most of the week and unable to do things like finish reading this book). For the entire week Nik was like someone else’s child; his personality was more than slightly manic, his sleep was greatly disrupted (and so, too, was mine), and his coping skills deeply diminished —to the point that even things which used to make him squeal with delight would elicit that reaction and then immediately plummet into a meltdown complete with head banging and thrashing. The doctor had us go back to the “normal” med schedule and dosing after six days of this.

I am ecstatic to report that my happy little boy is back!

We are still not entirely convinced that Nik’s immune system and/or ears aren’t at the root of the mysterious episodic pain. His lymph nodes both in front of and behind the right ear are constantly swollen yet he has no obvious infection. He does get sick more than I think is normal and it always seems to involve his ears and his gut. We’re making another appointment with the pediatrician to discuss a CT scan of Nik’s right mastoid to rule out the possibility of chronic mastoiditis, and to get a referral to another immunologist for a second opinion and testing.

Nik’s overall progress continues to be rapid and positive. He’s still small for his age —only the third percentile for height and twenty-fifth percentile for weight (he’s solid muscle!)—but he is showing consistent and steady growth. Not bad for the kid who started out at nineteen ounces, eh? He’s ambling around in his new orthotics with a confidence and balance that belies his shaky start and extremely delayed gross motor skills; his gait is still uneven and somewhat jerky but it doesn’t keep Nik from getting places in a hurry!. Nik’s also tolerating a broader range of textures lately —showing a willingness even to dip his fingers into yogurt or mashed fruit and to pull a favorite toy out of a box of rice or pile of sand. All of those textures sent him into absolute hysterics just a few short months ago.

On the feeding front, it’s still slow going but with small, steady progress. Nik is taking more initiative with the chewy tube and tolerating it for more bites between food or as a preparation for eating. He’s eating a little bit of food by mouth each day —not enough to substitute for a tube feeding but enough to measure in terms of his overall intake. Nik’s constant favorite is goldfish crackers but he will try some of absolutely everything we offer him; he’s not shy about telling us which foods he doesn’t care for though there aren’t too many we’ve found yet; with Nik, it’s more about the consistency or texture.

Nik’s overall communication skills have expanded greatly in a short time. He is learning, I think, about intent and effective ways to get my attention. Lately I find, more often than not, that Nik is willing to slow down that fraction of a second it might take to show me what he wants; he’s also doing so well at following instructions now. It helps, I know, if I use consistent language with him and give him cues and clues as to what is coming and what is expected of him. The times I forget to cue him as to what’s next are the times I regret the oversight.

I know Niksdad must think I am trying to control his every little communication with Nik but he is slowly coming to understand that Nik needs that specificity and structure to help him keep it together. Something as simple as telling him the sequence of “clean pants and pajamas FIRST, THEN toys” can make all the difference between his joyful cooperation or wrestling him to the floor to change a diaper.

From a social and emotional standpoint, Nik has become very affectionate; even the neurologist took note of it last week. Nik knows and understands the value of hugs and kisses and uses them liberally —and not just for effect either! I’m always floored when I’ve been out for a while and Nik drops whatever he is doing and comes to greet me with a big kiss. And I still get choked up whenever I watch the way Nik responds every time his Daddy walks in the room.

Imagine a golden retriever puppy shivering with delight when it sees its beloved master and you’ll get some small idea; it is definitely a visceral response for Nik! When the two of them are playing together or merely sitting side by side on the sofa and Nik leans his little face into his Daddy’s —his hands look tiny as they rest against his father’s cheeks. Sometimes I wonder if he remembers the bond he first formed with his Daddy immediately after birth. He clung to Niksdad’s fingertip immediately after the nurses cleaned him up and the doctor inserted the breathing tube into his miniscule throat and lungs. They’ve been nearly inseparable ever since.

So, in all —in spite of some bumps and turbulence along the way— I’d say things are pretty good right now. And I’m not even afraid of tempting the Fates…much.

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Fuelish Me

Well, I think we’ve shaken off most of the Easter Flu around here. Nik seems to be pretty well on the mend —as evidenced by an awesome play date with Daddy at the park yesterday afternoon and the return of his happy-go-lucky demeanor today. I am mostly better though still trying to shake off the cough that doesn’t want to quit.

Meanwhile, as I am sure most can relate to, we’ve been in the “interruption of all things normal” mode commonly referred to as Spring Break. Niksdad has been on break from nursing school all week and we’ve been juggling projects, appointments, time at the gym, etc. It’s been really tough to find any time to simply sit and reflect on all that is going on in our lives. Writing about it has been a distant vision at best! And, well, my energy level just hasn’t been what it normally is.

As I mentioned in another post, Niksdad and I started the South Beach Diet (SBD) just about a week and a half ago. When we did it a few years ago, while Nik was still in the hospital, it seemed really easy and we both did very well. This time? Absolute torture for me. In the intervening years I have developed multiple food sensitivities to many of the same foods which once sustained us during the diet —soy, nuts, cheese —and I have struggled trying to find enough things that I could eat and not feel completely deprived and run down.

To make a long story short, I had a conversation with my fitness trainer —no, it’s not as glamorous as it sounds and I don’t see him all that often! We talked about South Beach and my struggles and how utterly run down I’ve been feeling —even before the flu struck. He thinks I’m not getting enough balanced nutrition and that my body is actually slowing down my metabolism in an effort to conserve resources. It made sense to me as I have felt utterly spacey and just lethargic as hell. Seriously, I’ve had to read nearly everything two and three times just to make sure I understand it. I read blogs and am too spacey to write a comment because the effort of reading it is too taxing; I mark items to return to later with a comment and find I cannot recall what I read —let alone what I thought I wanted to say.

The effort of doing more than passive blogging, television watching, or mindless web surfing has been too much. Never mind the picture cards and scripts I need to create for Nik’s communication devices, the meals I need to prepare, the house I need to clean, etcetera. It’s all just been too much.

Until today.

After I spoke with my trainer yesterday morning, I decided that I was done with SBD and was going to eat whatever I want. The catch is that I have to record it and keep track in one of the nutrition/fitness resources I have. And that’s exactly what I have done since yesterday. I feel like I am slowly emerging from a deep shroud of fog —but I am emerging!

When I’m back —maybe this weekend, remind me to tell you about how much Nik’s grown, what he’s doing that is cracking me up and making me teary, and some other interesting stuff that I managed to do in a few lucid hours early this week! Until then, don’t fret if you don’t hear from me; I’ll be lurking and marshaling my mental strength to share my pithy and insightful (not to be confused with pissy and incite-ful) comments once again. (MWAHAHAHAHA!)

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All Manner of Healing

Lots to say today with no way to write what I really want to about Nik, his communication devices, health, life, and a host of other things. I fell down some stairs yesterday and injured my left wrist and shoulder. I’m typing one-handed (actually two-fingered) on an ergonomic keyboard while wearing a splint and sling; it’s sloooow going, folks! Until I am back at full speed, I want to point you to some other posts and people.

First off, check out these posts about Autism: the Musical which will premiere on HBO on March 25th. And spread the word!

Then…

If you don’t already know the Bird Flock, please check out Rhett’s Journey. I originally found this blog through Jennifer at Pinwheels. I stayed because I fell in love with Rhett and his inspiring, loving family. But folks, this isn’t just a plug for someone else’s blog about their adorable child.

The Birds have been through such an incredibly hellish year which has impacted just about every aspect of their lives —and it doesn’t seem to be letting up. Reading between the lines of what was not said in this post —because her other children read it, too, and Pam didn’t want to freak them out— little Rhett is facing some extremely serious surgery this week and has more on the near horizon. The outcomes of these surgeries may well mean his life span could be shortened. Significantly shortened. It’s a scenario no family should ever have to face.

If you believe in miracles and Divine intervention, I implore you to please read about Rhett and then add yours to the many, many voices being lifted up in prayer for Rhett and his family. If you believe in other manners and methods of healing and spirituality, I urge you to add yours to the energy and visioning being sent out to the Universe as well.

Photo courtesy of the BBC

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Rambling Update

Apologies for the disjointed writing which follows; I am struggling to find words and string together coherent thoughts lately. I seem to be suffering from sort of mental (emotional) malaise and am finding that I get easily distracted. That is why I have been so “bloggy quiet” as Kristen wrote to me in a recent email.

Nik’s been ill again. It’s nothing mysterious or scary; just the upper respiratory crud that’s going around with a touch of stomach bug thrown in. He’s pretty much over it except for the super snotty nose which makes it hard to breathe and sleep at the same time. Breathing seems to be winning lately.

In spite of the illness, the tyrant, er um, I mean Nik has been ruling the house with an iron fist. His adoration for Mary Poppins? At an all-time high. If I am within reach of his hands, they are grabbing mine and dragging me toward the TV to turn it on for him. I think he now knows how to SPELL Mary Poppins. God knows, if I say the name he starts squealing and dancing around like a ‘tweener who just won Hannah Montana tickets from some radio show! Did I say I was fond of Mary Poppins? I may have been mistaken.

When I won’t give in to the MP obsession, Nik insists that I play. Never mind the growing mountain of laundry, the cat hair clumps on the carpet, the breakfast dishes in the sink, or the fact that Mommy hasn’t had a shower yet, Doesn’t matter to him. I am getting stronger at telling him “No” and sticking to it. Even when it results in the world’s cutest suck-up tactics. Really, where does the boy learn these things?! Nik will come over to the gate and look at me and start making kisses with his lips. If he’s really angling for my attention and cooperation, he will sometimes walk to the entertainment center, tug on the door, and say “Mamamama” before he comes back to tug my hands again. If that doesn’t work, he goes for the triple play which includes his rendition of “If you’re happy and you know it…” (lots of huh-huh’s and ba-ba’s with a few ga’s thrown in for flourish) combined with the kisses and calling my name.

Sigh, the boy is a master manipulator, um, negotiator. (Hey, it’s a matter of semantics, right?)

On the health front, Nik’s mysterious bouts of pain have diminished quite a bit since we started treating them like hypoglycemia. We still deal with the nocturnal waking but not as consistently. No word yet about scheduling his video EEG; we are entirely convinced his pain episodes are not related to seizures. None the less, it will be good to have a clearer picture of his seizure activity, too.

Nik is doing well with all his therapies; nothing really new and exciting to report yet, just slow and steady progress. Consistency. He did recently learn the concept of (and word for) smell. Now he loves it when I give him things to smell. His favorites seem to be peppermint extract and one of his blankets fresh out of the dryer. The kid’s got good taste. Of course, there is also the random smelling of his socks when he takes them off; he is all boy, for sure.

Nik is also getting more adept at communicating —or at least knowing for himself and trying to communicate to others —when he needs a break. Last week in OT, Miss D kept trying to get him to do something and he kept trying to get away and go into a room with the lights off. Usually, Nik will do anything for Miss D but he wanted no part of even playing with a favored toy. I wondered aloud if he was feeling like he needed a break. God bless Miss D for listening and trusting; she let him go off on his own and, sure enough, he took a very short break in the darkened room and then came back out to play with her. I’ve noticed him doing more of this sort of thing lately when he has had multiple appointments back to back or been out to the store or the mall with Niksdad or me. Where he used to simply fall apart, now he first tries to find some quiet space for himself. Often it looks like dragging s few toys into his Thomas the Tank Engine tunnel for some quiet play, or hiding under his giant green bucket with his star stacker toy.

Nik has also recently decided that naps are for babies. Oh, don’t get me wrong, the kid goes down every afternoon after lunch; he just doesn’t sleep anymore! When I offer him a toy or a book he will take it and play quietly in his crib. Sometimes he will simply sing little tunes to himself. He has begun to push the limits, though. The toys he has don’t entertain him long enough and he wants to be up and about. Yesterday, he cried and wailed in anger and frustration for a good 45 minutes before I finally got him up. Today he is singing. I suspect once he figures out that I am not coming to get him soon those songs will turn into protests.

As I write all this it occurs to me that what I am describing is a lot of age appropriate or developmentally appropriate behavior. What a nice thing to realize!

We are definitely approaching a crossroads of a sort; though Nik has many, many delays and multiple challenges, he’s doing very rapid catching up in some areas —especially cognitively. He’s learning the art of manipulation, effective use of the nuances of resentment and anger, and the value of judicious use of self-injurious behavior. Where once it was easy to distract Nik and redirect him from undesirable behavior, now he is set on what he wants and will brook no opposition. Sigh; he is in for a lifetime of heartache in that regard! Niksdad and I are constantly re-evaluating our methods of dealing with some of the less than pleasant behaviors; we need to make sure we are setting expectations that are reasonable and attainable for Nik while also making certain that he does not inadvertently get rewarded for bad behavior which is within his actual control. It’s that last bit “within his actual control” which is difficult to determine sometimes.

The pressure to interpret Nik’s budding communication is also tremendous. His voice, face, and body have all become much more expressive. The range of communication —that is to say, the variety of methods he uses —is not so great but, those methods placed into context communicate so much.

Tomorrow there will be a lengthy evaluation to determine what, if any, augmentative/adaptive communication device might help Nik find more and better ways to communicate. I am numb about it, frankly. Having been through so many evaluations and interventions in Nik’s short life —going through cycles of hope and disappointment, anxiety and frustration, and finally feeling left adrift to figure things out on our own —I am not certain anymore what I hope and expect from tomorrow’s experience.

I will try to write more about that after the appointment.

So now my brain has turned left when I want it to turn right and Nik has begun the wails of protest. Sigh…small measures of quiet are so hard to find some days.

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Floating on Hope

“Too often we under estimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”
~ Leo Buscaglia

As so many of us know from personal experience, the world as we know it can change in an instant. Receiving an unexpected —possibly devastating —diagnosis, the premature birth of a child, the death of a love d one, the loss of a job or relationship; all can shatter our perception of the world as we have known it. The look across a crowded room into the eyes of a stranger —who one day becomes your spouse, the sound of your child’s first cry or the feel of their tiny hand in yours; the “Hail Mary” shot that wins the big game; the potential agents of change are myriad and limitless.

This morning’s visit to Nik’s new neurologist feels very much like a life-changing experience. We have had so many frustrating visits to doctors that just don’t seem to care or understand; brilliant but, perhaps, burned out doctors with no curiosity left to enable them to see that a box can indeed have more than six sides and eight corners. Doctors who simply want to scribble an indecipherable, unpronounceable name on a pad, pat our hands with a sympathetic nod of the head, and send us on our way to deal with the consequences. We are understandably wary of things which sound too good to be true.

Our initial visit with Doctor G. (no, not that one; we hope not to see her, well, ever) lasted nearly an hour and a half. During this time, the doctor sat and actually listened to what we thought was the primary issue, why we were seeking his help. He spoke candidly with us about what he saw on Nik’s multiple MRI images done over the course of a few years; he was pleased to tell us there is nothing significantly disturbing and certainly no sign of anything progressive. We already knew that from our own readings of the radiology reports, but had never had a doctor explain to us what he actually saw on the films or what it all may mean.

He queried, he listened, and he took copious notes. He stood beside me and watched the videos on our laptop computer —all of them —and then he asked if he could get a copy of the disk so he could review them more in depth and possibly discuss them with his colleagues. He did not dismiss our questions or theories out of hand nor was he patronizing. And Nikolas, who is a very good judge of character, took to him right away —in a way he has never taken to any other neurologist. Nik clapped hands, played with Doctor G’s hair, and followed him with his eyes a great deal. Together, we were a family at ease for the first time in a very long time.

Doctor G walked with Nik and made some observations about his gait and balance which put things into a clearer view for us and gave us something concrete to work on in physical therapy. He praised us for trusting ourselves and making good choices for Nik and for providing him with the things he needs. There was never any mention of a strict educational program at a certain school which, Niksdad and I agree, would likely remediate much of Nik’s uniqueness out of him in an effort to have him “fit in.”

The subjects of tests and medications —and autism —were all discussed in depth. Doctor G made some recommendations for some ways to evaluate Nik’s apparent pain response —whether it is from seizures, headaches, or some other source —in a systematic way. He discussed the possibility of changing some of Nik’s current meds and possibly adding a new one down the road but he made it clear that it was a discussion we would have much later —not a done deal. He then asked a question I have never been asked by a medical professional in all of Nik’s life. “How do you feel about this plan?” Since I had initially raised a thought about one of Nik’s seizure meds, Doctor G suggested we could start with that change if it would eliminate a concern for us, despite his opinion that it probably wasn’t the cause. He wanted us to be comfortable with the care plan and truly wanted our input.

And if that wasn’t enough to bowl us all over and make us fall head over heels for Doctor G, he then said, “I will always tell you when I don’t know but I will also always keep looking for answers to help Nikolas.”

“Home is not where you live, but where they understand you.”
~ Christian Morgenstern

“Not only is another world possible, she is on her way. On a quiet day, I can hear her breathing.”
~ Arundhati Roy

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Diagnosis: Pending

A while back I promised I’d post about our visit to the diagnostician. I’ve been holding off a bit because we are going to see the new neurologist soon and are hoping he may be able to shed some light on something that was, possibly, inadvertently unearthed by the diagnostician. Was it really only just a week ago? My, how time flies when you’re having such fun.

The long and short of the visit is that the doctor, whom we had heard such wonderful things about from Doctor Mary, fell short of our expectations and desires. Well, obviously the desire part since we desire a comprehensive diagnosis —complete with magic wand —to make Nik’s excruciating pains go away. Didn’t happen.

What did happen though is that we felt patronized, marginalized, and disbelieved —yet again. WTF??? Do other people really put up with being treated this way by the people they are paying to tend to their medical needs? The doctor wasn’t glaringly rude or obnoxious, it came across more in the diagnosis and solutions he suggested— and his questions to us. Okay, someone please explain to me how “Doctor, my child wakes up screaming in pain —or sometimes it happens when he’s awake and playing —and begins punching himself in the face and jaw as if he’s in agony,” translates to “Well, now, you may not think there’s anything you’ve changed about his sleeping environment but, really, think about it and I’ll bet you’ll find something that you’ve changed —something subtle —that is keeping him from being able to fall back to sleep.” Hello?? We’re not talking about a kid who has insomnia for God’s sake!

I wish I were exaggerating. The copious notes and videos I compiled and delivered (as requested) the week before the appointment? Wonder Doc N-E-V-E-R looked at them. His explanation was that he “sees a lot of medical records and I don’t always have time to look at them before each visit.” (ETA: What he meant was the extra stuff not already a part of the patient’s electronic records.)

The preliminary diagnosis? Benign Paroxysmal Positional Vertigo. His solution? Drugs —more fucking drugs. Do we actually believe this diagnosis? Negative; almost nothing about what we witness on a nearly daily basis fits with the symptoms of this particular disorder. Of course, he would have known that had he bothered to read the notes or watch the videos.

The medication he is suggesting? He needs to discuss it with the “brilliant neurologist” —you know the one who never returns phone calls even to our pediatrician —to figure out which of Nik’s other meds to change. I won’t hold my breath that he’ll get an answer any time soon.

The supreme irony, though, is that when we came home and looked up the medication in Niksdad’s Nursing Drug Handbook so we could learn about possible side effects and drug interactions, we found that it can also be used to treat cluster headaches. Hmmm… Hello, Mr. Google?

BINGO! According to this description put out by the Mayo Clinic, this fits Nik’s symptoms to the last detail —including this one:

They may scream, bang their heads against a wall or hurt themselves in some way as a distraction from the unbearable pain.

We see the new neurologist on Friday and will be discussing this with him. It may not be the right answer but it sure feels like a direction to explore.

Keep your fingers crossed.

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Avalanche

One foot in front of the other
One foot back to counter it
Days like these you’ve got to find it in some other way
It’s all or nothing baby

Avalanche, start inside of me
Avalanche, down through the trees
Avalanche, start inside of me
Avalanche, hell down through the trees

“Avalanche” by Matthew Good

I read an email from Susan at The Family Room —who didn’t tell us she was celebrating a birthday this week —earlier this evening and was all set to reply when Nik started howling like he hasn’t done in a couple of weeks. Had he not been in his chair with the pump running it definitely would have been one of those drop to the floor, head slamming episodes. It lasted roughly 40 minutes. Off and on , waves of pain and tears and head hitting coming one on top fo the other. Spent from the effort, Nik has been passed out cold in his crib for nearly two hours now.

Poor Nik was scrunching up his eyes and flicking his right ear and screaming, punching his face and crying and he STILL kept trying to hold my hands to do “If you’re happy and you know it!” It broke my heart. I guess he wanted to do the song/clapping because it’s his favorite thing to do and it makes him feel good. The juxtaposition of the clapping and the teary, scrunched up face…it was all I could do not to cry in front of him.

I thought I was hanging in just fine lately until this happened. We’ve managed to string a few good days together in a row —the nights, not so successful yet. You know, seeing how much it takes out of him and then how far back it sets him when it goes on and on…this is what makes me worry about the future. How can he make the continual progress if he keeps getting dragged down by the cycle of pain and recovery? It’s like we take a giant leap forward and then go toppling off the mountain peak. The falling is the hardest; the initial ascent is rough too —until we find our rhythm again and can catch our breath for just a little bit. It feels like we keep gaining momentum and then we hit a patch of ice and go tumbling down again.

Not the behavior or the skills that Nik is learning and mastering. It’s his health that takes the hit and then he seems to have a fairly significant regression or stagnation. It comes and goes in cycles and seems to take so much out of him. When we’re on an upswing it’s fast-moving and exciting. When the squalls hit, it’s as if an avalanche tumbles us, leaving us buried us for a while. We dig our way to the top and begin all over again. When we are in the trough of that cycle I’m not sure I can see the forest for the trees.

There’s been no real movement on the medical front in so far as finding any answers or any greater comfort for Nik; our appointment with Dr. House’s team isn’t for another three weeks. Meanwhile, we’ve got some other things coming up on the horizon. There’s a multidisciplinary evaluation next week which I am really looking forward to. It’s done by a team of therapists who work with the Developmental Pediatrician whom we see twice a year. They are wonderful people and they really like Nik a lot. More importantly, they haven’t seen him since before we pulled him out of school; I am eager to see what kind of progress they think he has made.

Equally important will be the recommendations they make for Nik’s therapies. I will not be surprised if they recommend an increase in all areas and hope they can help me make the case with Medicaid to increase services. Over the summer, Medicaid had authorized two sessions of each discipline per week instead of the one they cut back to in October (after we pulled Nik from school). Not that I want to increase the number of appointments we have, really, but they did make a huge difference.

After the team evaluation there’s Nik’s four year old check up (!!!) followed by another sedated hearing test (ABR). We had to reschedule the appointment with new neurologist until the end of the month so we had enough time to gather all the necessary records to send in advance. We will also get to see the cardiologist and the pulmonologist this month, too. That’s in between seeing the orthotist to adjust Nik’s ankle-foot orthotics and seeing the Rehab Engineer to adjust the seat and foot plates on Nik’s chair…and to possibly order a special bed for Nik. Oh, and I think there’s Christmas in there somewhere, too!

Whew, putting all that in writing makes me grateful that I have started to ask for help.

In another health update —mine— I am finally getting the coughing crud mostly under control. It turns out I contracted a staph infection —NOT MRSA — on the heels of a plain old upper respiratory infection and it turned into tracheitis. Not highly common in adults —we usually get bronchitis then pneumonia — it is basically croup. Well, you know, I like to think of myself as a kid at heart! Before I went to the doctor this week and got some antibiotics and cough syrup with codeine (that’s my excuse for my rambling writings this week!), it felt like a mule team had been tap dancing on the base of my throat and I was coughing so much, especially at night that I was hoarse and experiencing some embarrassing hygiene situations if I coughed too hard (don’t make me spell it out, people!). It’s still not so great at night but that may simply be aggravated by Nik’s renewed nocturnal waking this week. Still, I feel much better and managed to actually go work out this morning. I had to reintroduce myself to my trainer it’s been so long!

So, like I said in my previous post — you know the antithesis to this one? —it’s been a very full week.

TGIF!

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Happy Hallow-won’t?

I can’t stand to fly
I’m not that naive
I’m just out to find
The better part of me

I’m more than a bird…I’m more than a plane
More than some pretty face beside a train
It’s not easy to be me

“Superman” by Five for Fighting

What is it about small children and holidays that brings out the worst in their parents? Well, not really the worst, but something. Something that compels a parent to go overboard with costumes, presents, extravagant parties for a child who, really, doesn’t yet understand the significance of the day or event? Who not only doesn’t understand, but cannot yet even participate in the manner his parent hopes for?

I find myself wondering whether I am trying to recapture some lost moments of my youth. Or perhaps to re-create the moments as I would have liked them to be? Surely my son doesn’t yet understand what birthdays and Christmas and Halloween are all about. Yet with the approach of each one I am filled with deep longing for him to leap into the fray with the same enthusiasm I have.

Is it my need to celebrate every last little moment and milestone? Perhaps. Or, perhaps, is it my need to feel like a “normal” family every once in a while?

I am reminded lately of how not-normal our family is as we have logged a few hundred miles on the car this week racing from doctor to doctor and to the hospital on Sunday. Of the hours of sleep we have lost in the middle of the night with our son who cannot tell us what is wrong, where it hurts or what he needs. Of the frequent need for blood tests, x-rays, numerous daily medications, and other medical interventions. Our child who cannot tell us what he needs on a daily basis. This is our “normal” now.

Most days I accept this new paradigm with grace and humor. Then there are the days, like today, when I struggle to find the grace and strength. Yet, given a choice, I wouldn’t trade our life. Because it is not normal to celebrate each moment of triumph which passes for ordinary in other families. The growth and changes normal families don’t notice until they have become second nature. Things they take for granted, we recognize as herculean tasks accomplished with great effort. Nothing ordinary about them.

So, while we won’t be dragging our little caped wonder from house to house tonight because of the mystery ailment* which has put him out of commission, we will be enjoying the treat of being Nik’s parents and all that encompasses.

Whatever kryptonite the world wants to throw our way, we’ve got a super little man to help us through.

*Good news from yesterday’s chest x-rays — it’s not pneumonia! Whew! Dodged that bullet!

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