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Archive for the ‘anxiety’ Category

The shoes should have been our first clue.

After a perfectly delightful morning —one which began after more than twelve hours’ sleep for Nik and a leisurely breakfast for myself and Niksdad— we began our preparations for a jaunt to the local peach festival, followed by a visit to the park.  The pre-departure routine is always the same: “Okay, buddy, time for some clean pants.  Bring your toy and let’s get clean pants.”  “Clean pants first, then socks, MAFO’s and shoes.”

Nik is always eager to perform this routine; he loves to go out with us.  Lately, he’s begun to put his orthotics on by himself —even getting them on the correct feet.  He was just beginning to clamber onto the sofa, where I sat waiting with wipes and pull-up in hand, when Niksdad brought over his socks, MAFO’s and shoes.  The scream which issued forth from my heretofor sunny child was unlike anything I’ve heard except when he is in extreme and urgent pain.  It was the kind of sound which makes my heart race and causes me to drop everything and come running in an instant, certain I will find my child covered in blood.

There was much wailing and gnashing of teeth (to put it quite mildly) until we figured out the problem: the shoes.  Perfectly good, serviceable Nike’s which Nik has worn on many occasions though not for sometime.  (His other Nike’s were so filthy from repeated outings to the park— the laces were nearly black— that I insistedwe wash them last night; they were still in the laundry closet, slightly damp.)  I put the offending shoes on the floor at my feet while Niksdad went to get the still-damp shoes.  Apparently, even that was too close for those awful shoes; Nik screamed and jumped off the sofa, grabbed the shoes and ran to the entertainment center to put them on top.  That’s were they’ve been sitting for weeks now; it made perfect sense to Nik’s sense of order.

Once Nik realized the “correct” shoes were going on his feet he calmed down.  In fact, he seemed quite eager for our outing.  Off we went on our merry way.  “We’re going to get ice cream first, then go to the park. Ok buddy?  Ice cream first, then park.”  I repeated that phrase, like a mantra, as we drove.  Nik is usually pretty good about changed routines or routes as long as I tell him the sequence several times over.

I should have known that the shoe incident had my precious boy already wound too tightly.  As soon as I turned right at a traffic light where we normally turn left, Nik’s tenuous balance shifted and the tempest began.  I talked to him in soothing tones as I drove.  “It’s ok, sweetie, we’re going to get ice cream first then go to the park, remember?  It’s ok.  You’re ok.”  All the while, Niksdad held on to Nik’s feet so he couldn’t injur himself (or us) with his kicking.  I drove with one hand on the steering wheel and one hand holding Nik’s sweaty fingers, gently squeezing to give him some proprioceptive input which I hoped would calm him.

We parked right next to the entrance (God bless our disabled parking placard!) and waited for the storm to abate.  When Nik didn’t seem to show signs of calming, Niksdad said tersely, “This isn’t going to work, let’s just skip it.”  His frustration level was, understandably, rising with each howl and each kick which landed on the back of his seat.  Not realizing that Nik was already overwrought and wound too tightly, I insisted we at least get out of the car and try

There have been times when simply getting out of the car has shifted Nik’s attention enough that he is able to calm down and we end up having a decent outing.  I also felt very strongly that we neededI needed— to not be held hostage to the autism.  We spent the first two years of Nik’s life sequestered away from everyone and everything because we had to protect Nik’s fragile immune system.  We’ve spent much of the last couple years isolated from nearly everyone and everything except the occasional family outing.  At some point, I felt, we just have to say “Damn the consequences!” and try —just try— to be a part of the very society in which we want our boy to thrive.

Today was not the day for that.

We never made it to the ice cream or the petting zoo.  We pulled into the parking lot at the park and Nik fell apart again.  By this time, he was so overwrought he couldn’t tell us anything.  “Are you hungry?” Nik signed please so we offered him a bite of his sandwich; he thrust it at me and screamed.  “Do you want to go play in the park, sweetie?”  He simultaneously signed please and shook his head no.  I started to hum Mary Poppins songs to calm him.  It seemed to work until I stopped.  The wailing began again.

We drove home to nurse our wounded hearts and try to figure out what our boy was telling us, what he needed.  As we pulled into the driveway —like magic— the tears and tantrums abated and the happy singing began.

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Nik has now had lunch and is a very happy camper —singing Mary Poppins and Signing Time songs to his toys, playing with his alphabet puzzles.  We may attempt the outing again in a while —or not.

It’s so hard, trying to find the right balance between stretching Nik’s boundaries and honoring his needs.  Between giving my child what he needs and giving myself what I need.  Trusting my instincts and listening to the voice in my heart that says “We have to try…”  The lines are hazy and constantly shifting —like walking on a sand dune in a headwind. 

I believe we are at a crucial point in Nik’s communication development:  the more he knows he can make himself understood —and the fewer tantrums as a result of that success, the more intensely frustrated he becomes in those instances where he cannot make himself understood.  The extremes seem to be farther apart and I feel stretched to my limits straddling the chasm.  But I’ll write more about that another time —after I mull it over some more.

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We finally heard from Dr. Mary late Friday afternoon; she called to discuss the results of Nik’s CT scan. Frankly, we’re not really sure what it all means. They found something —which could be something quite serious or it could be something not so serious. I suppose it all depends on what the ENT has to say when we get to see him. I have to call first thing Monday to get an emergency appointment (my wording, not Dr. Mary’s).

The scan —specifically, the extra view we had to really push for— provided some surprises for us. First of all, the right side —the one which has given Nik so much trouble and which swells on a daily basis— appeared completely normal! The left side, however, showed significant signs of possible mastoiditis (of the chronic or “masked” variety, meaning it won’t manifest with sudden onset, fever, redness, etc,) along with some more indication of some sort of infection or as yet unidentified opacification of the ethmoid bone.

Mores simply put, it could be that Nik has a super-wicked sinus infection —in spite of having no outward manifestation which would lead to that conclusion— or he has some serious damage to the mastoid process and part of the ethmoid bone. It could be the result of his chronic, persistent ear infections which have never had any accompanying drainage. It is possible that —in spite of his having repeated courses of antibiotics, a tympanostomy, and ear tubes already— all the fluid actually drained into those bony areas and became trapped in all the little sponge-like air cells. Highly undesirable conditions with potential long-term effects.

As I said, we won’t know until we’ve seen the ENT and possibly done some more testing. Meanwhile, as a matter of precaution, Nik is on a new antibiotic; rather, one he’s never had before and one which is reserved for “serious infections” as the patient information pamphlet so ominously states. If it is mastoiditis and it’s left untreated it could rapidly become something worse which I won’t get into; it’s not worth my getting upset and scaring people when we don’t know anything yet.

This new drug is used for things like MRSA’s and is extremely harsh on the gastrointestinal system; I anticipate Nik will be a bit uncomfortable within 24 hours.

I, on the other hand, will be extremely uncomfortable until we see the damned ENT.

This is another one of those instances where we have voiced suspicions and asked the question “Could this be some sort of chronic, sub clinical mastoiditis?” and been told “No, he doesn’t have any of the symptoms; you’d know if it were mastoiditis” by so-called specialists.

Attention, Universe? I’m tired of being right about the bad stuff.

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Look out! Look out!
They’re walking around the bed
On their head
Clippety cloppety
Arrayed in braid
Pink elephants on parade


“Pink Elephants On Parade,” from Dumbo

It feels like there’s a huge pink elephant sitting in the middle of my cyber living room and I cannot get past it to write anything else until I deal with it. Of course, no one else can see this elephant because it is really in my mind. But since blogging seems to help me work out some of these things, well, you lucky readers will get to join me in my sorting it out. Grab your hankies, this feels like an emotional journey of epic proportions today.

Since Nik was born, this has always been a very difficult time of year for me. I know that it should be filled with joy and hope, faith and miracles, and all that sort of stuff. But for me, try as I might to let it go, it still carries the essence of anxiety. The glimmers of impending catastrophe that gnaw through my veneer of calm, cool collectedness.

We knew just before Thanksgiving that there was something “not quite right” with my pregnancy. I spent the two nights before Thanksgiving at the hospital getting steroid shots and being monitored for hours before they would let me go home. My sister’s in-laws —who always welcomed me with open arms to every family gathering since my own family was 3000 miles away —pampered me and waited on me hand and foot that year. Nik was born via emergency C section the following Tuesday afternoon following a scary non-stress test (you gotta love the oxymoron name of that one, huh?!). My husband was somewhere under the San Francisco Bay —on his way to a conference in the same town where I sat alone and terrified in a hospital labor and delivery ward waiting to find out whether our child would make it long enough to be delivered.

Nik was in rough shape with no amniotic fluid to cushion him, the umbilical cord was wrapped a couple of times around his tiny fragile neck, and he was in a breech presentation. Try as they might, the OB and perinatologist couldn’t get Nik to respond to any stimuli. His body was shutting down and his heartbeat was irregular. Time was slipping away and attempting to take my child with it.
Niksdad made it with some few minutes to spare. Nik followed soon after.

I don’t’ remember much of the delivery, except the feeling of my insides being stuffed back in before they stitched me up. Niksdad had left my side to be with Nik. He was the only one of us who saw our son’s face unencumbered by breathing apparatus for weeks. Niksdad’s strongest memory of the moments after the delivery is of touching Nik’s hand and feeling Nik’s miniature grip around the tip of his index finger. “I’m here, Daddy. Don’t go away.”

Yet here we are four years later with our strapping boy. He has so many challenges and he fights like a hero every single day. I know I should be reveling in that spirit. And most days I do but, for some reason, these days approaching Nik’s birthday are always a roller coaster of emotions for me —and for Niksdad though he doesn’t show it quite as obviously as I do. There never seems to be an end in sight, a soft place to land to catch our collective breath.

I am sure some of this feels more intense this year because of the episodic pain that Nik has been having and our anxiety about finding a cause —and putting an end to Nik’s pain. Then, too, there is the fear and uncertainty of what lies ahead for Nik in terms of his overall development. We refuse to accept that Nik will not progress beyond where he is now in terms of his ability to communicate his wants and needs. With each passing day I see Nik become so much more engaged in his environment, so much more interested in socializing with familiar people like his grandparents and his therapists. Yet we also see so many times where Nik is simply not present at all; he has retreated into a place where we cannot reach him. There seems to be no middle ground, no place where we can see a continuum of progress unfolding.

We feel lost as to what to do for Nik. We pulled him out of school because we knew it was too overwhelming for him. Yet he needs something more than I am able to give him by myself. There is such a dearth of resources in our state unless your child is in the school system. It feels so damnably unfair that I have to put my child in a situation that I know is not good for him in order to gain access to certain services. And it breaks my heart that our financial situation is what it is right now and that we are not in a position to be able to pour dollars into additional therapy for Nik; he responds so well when he gets it.

Maybe that is the emotional parallel that I am feeling right now —the uncertainty, the fear of whether my child will be alright, and the worry that I am not up to the task. It definitely feels the same as it did four years ago; that’s a feeling I haven’t had for a very, very long time. I know that I cannot see into the future and I’m not certain I really would want to know anyway. But I seem to have lost my sense of being grounded recently and I don’t know what to do to get it back.

I need guidance, practical guidance, to find resources I can use to help my child. Things that I can do right here, right now —at home —that aren’t going to cost me an arm and a leg. Things that will give Nik some good sensory input and help him regulate himself enough to stay present more than spurts and moments in a day so he can learn the things he needs to learn. To communicate when he’s had enough and needs a break, when he’s hungry, when he’s bored and wants my company —and so much more.

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A quick update on the school situation —

I spoke with the case manager on Tuesday afternoon. While she seemed to be sympathetic to our situation, her official stance was “Let’s go through the IEP and see what school comes up with before we look at what’s next.” Toeing the party line, for sure. Needless to say, I got off the phone feeling very frustrated and a bit down-hearted. As I related the story to my husband Tuesday night, he reminded me —being so much more pragmatic and less emotional than I am on any given day —that to the larger entities involved (those being school and Medicaid), this is as much about a business negotiation as it is about the best interests of a small child who needs much in the way of supports and services.

In other words, my son costs money and they want to see who gets stuck with the largest portion of the bill. Ultimately, they will come around to doing something close to the right thing; I have to believe that or else I would give up the fight before I even begin. In the meantime, they will haggle and dicker like two old-world merchants transacting a complex ritual in the marketplace. Sigh…it is so hard not to take it personally and even harder still to wait it out.

The good news, though, is that our advocate is worth a gazillion times her weight in gold. Seriously, I cannot say enough about the way she is helping us —and it’s not just in terms of the specifics of this IEP. She is a very passionate advocate for children; having spent the past 18 years doing the same for her child with disabilities, she has been tested in the fiercest battles and has emerged with an iron will which doesn’t take “no” for an answer without first trying every avenue to “yes.”

It was at her urging that I delved into the murky depths of Nik’s past. It has also been with her assistance that I made a significant connection today with someone who has the ear of one of the top people with Medicaid’s Managed Care programs for our state. If someone can help push our case through, she may just be the one to do it. Of course, she warned me that she must first talk with our case manager and see where they stand on things so she doesn’t step on too many toes indiscriminately. Ah, yes, the wondrous joys of state bureaucracy; no agency is immune to the politics and the red tape. Ugh.

The other gift our advocate has given me is the constant reminder that, since we currently do have outside services for Nik —already authorized by Medicaid —we actually do have the power. I am not 100% convinced yet, but she keeps insisting that we will see in the end. I hope she’s truly right; I am anxious about getting my hopes up but they are definitely a bit higher than they were a few days ago!

Meanwhile, there is still no SLP at school to replace the one that left. When I spoke with the principal this morning, he told me that he’d made an offer to someone but she took another offer; I’m guessing it was in private practice or a non-school setting and infinitely more lucrative from both a financial and professional perspective. I feel terrible for the speech therapists at school; right now there are only two to handle 96 kids spread out over four locations and one of them is, I believe, only part-time. I can’t fault the previous therapist for leaving; she felt like she couldn’t make a difference for a single child given what she had to work with in terms of time constraints, limited resources, uninvolved families and administration…it’s a sad commentary.

What makes it even more frustrating is the fact that many of the new therapists at school are just that —new therapists. They don’t have the background and the experience to draw upon to handle many of the more complex needs of some of the children like Nik. So those kids are left with nothing substantial in the way of help. I haven’t seen or heard from too many other parents at school who either know that they can fight for more/better for their child or who have shown an interest in fighting for it. Sadly, many just accept whatever their child gets and figures “It’s better than nothing.” Obviously, I disagree. I almost think the little bit they get can be worse because parents make some assumptions about the consistency of what gets carried out in the classroom and don’t follow it up with effort at home.

I don’t mean to imply that I think every child’s parents thinks, feels, or acts this cavalierly; but they do at my son’s school. The demographics are such that many of the children come from single-parent homes, are being raised by grandparents, live in foster care or— worse —are homeless. There are some middle class families at school but they aren’t highly visible in their involvement. I’d like to try to change that; not only would I like to see those families get more involved, but I’d like to see the district provide training to all families about advocacy, IEP’s, planning for our children’s financial futures, etc.

I can see myself as an active, more deeply involved parent at some point. But that time is not now. Now, I want to focus on Nik and getting him the right supports to continue to flourish as he has begun to do…at home.

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Tonight, though, I am a quivering mass of nerves and anxiousness. We have decided that the line we are going to take is simple — no school for Nik until he is 5. Sounds so simple, right? I know with every fiber of my being that this is the right decision. Yet, I am terrified of “them” taking away his services and leaving him, us, with nothing.

If you believe in the power of collective prayer or visions, please say one for us tonight and tomorrow? Pray, wish, envision, that Nik gets to spend the next year happily learning the things that most toddlers learn at home with their families. Envision that Nik stays healthy and grows stronger with each day. Envision that he continues to learn the fundamental life skills he will need when the day comes that we must send him out into the world. Envision that we can put that particular day off at least for another year.

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In the midst of all the bleak feelings of frustration and near-despair, there have been some really sweet moments with Nik lately which have made me smile. Some of them have been visuals.

Others have been complete sensory experiences—like this morning. Nik awoke at 4:30 am — all sing-songy and chirpy. I lay in bed listening for a bit and smiled. Dragging myself out of bed, I went to scoop him up to go downstairs. When I picked him up, Nik wrapped his arms around my neck, looked me in the eye and then tossed his head back and laughed as if we had just shared the greatest joke. This was followed by a light touch of his forehead to my lips —our customary good morning kiss.

The merriment continued as he played in the family room while I made coffee and got the pump ready for his breakfast. I stood for a moment and watched him play. He was the embodiment of the most exuberant, unbridled joy. There was no one thing I could see that was making him happy —he just was. At one point, he was laughing so hard, he leaned against the TV, panting like a winded long-distance runner, then he doubled over and just crumbled to the floor in a heap of giggles. My face hurt from smiling so broadly.

If only we adults could start each day that way; wouldn’t the world be so much brighter?

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I love the internet and the communities we create with one another. One of my favorite moms —and a thoughtful, thought provoking blogger —emailed me tonight. Her radar must have been up because she asked how I was. Nothing unusual about that, right? I dunno, call it weird vibes but I thought I could sense “you’ve been kind of quiet, are you ok?” behind the question.

I’ve been wrestling with a situation —it’s not a problem, but it is something which requires resolution —and it’s been my own personal Deatheater all weekend long, just sucking the life and soul out of me. I’ve been thinking all day long about what I wanted to write tonight. My response to her email follows:

“We’re…ok…sort of. Long story short– we have a chance to fight
to take Nik out of school but it requires building a pretty significant
case to convince Medicaid that they should pay for Nik’s therapies
and stuff. I’ve spent the better part of the last 4 days combing through
records and drafting “talking points” for a conversation with the case
manager. I’m angry that I even have to do this. I’m depressed to see
the realities of Nik’s *minimal* progress over the course of the last
calendar year. And I am concerned at the concrete evidence that Nik
is also far more susceptible to illness than I had perceived.

BTW, don’t be surprised if you read some of these very same words on my blog later…I’ve been wrestling with a post about this issue. In light of how all consuming it feels, I’d say it’s appropriate. Plus, Nik’s IEP is Friday.

Plus…Nik fell again Friday and hit his head really hard. More seizures in the hour
following. He’s been falling more lately and hitting his head.
Tonight he pitched face-first onto the hard floor. Nice goose egg on the
left side to match the cut he got at school this morning on the right…”

So, I guess you could say my plate feels a tad overloaded and I’ve had my fill and then some! Lori at Spinning Yellow has a post up today about looking at her life in terms of time looking backward and time looking forward. That’s kind of what I’ve been doing all weekend long with respect to Nik’s life as it relates to medicine and education. Here is some of what I discovered:

In a full calendar year, Nik made nominal progress in OT and PT skills —as indicated by three assessments done over the course of the year (school intake last July, outside professionals in Feb, and his current private therapists this July). Over that time, he made roughly a three month gain; he had been making more significant progress with individualized services through early intervention.

Speech is even uglier…

Based on where he was when he started school, Nik has actually regressed to the functional communication of a 6 month old —courtesy, in my opinion, of the utter lack of stability in our school’s SLP staffing. Nik’s first speech therapist met him evaluated him, and left two weeks later. The next one lasted the school year but did very little. We spent a lot of time addressing the feeding issues —which it took Medicaid to tell me “Oh, no, schools don’t handle that stuff at all,” before we realized we had wasted an entire year for nothing. The actual communication issues? Not a whole lot of progress. But — and forgive me if I sound bitter here — it’s awfully damn tough to make any progress when you spend roughly fifteen minutes a week with a child. Even that wasn’t always one on one. How do I know, you ask? I requested the records from the SLP before she left school last Friday. Yeah, the revolving door of speech therapists strikes again.

So, let me put it this way —all things remaining the same as they were over the past school year, at his current rate of progress, my now nearly four year old will be functioning at the level of a two year old by the time he starts first grade. Now, I know there are many, many children for whom this would be remarkable progress. I also know that Nik started life with the deck stacked not exactly in his favor. But my son is so smart and keenly analytical. He’s the kid who mapped out how to get out of his crib without ever actually making practice attempts first. The kid who can watch me work a deadbolt a few times and then figure out how it works —again, on his first attempt. He is also the same kid who makes remarkable, steady progress when he is given the right level of services.

Bear in mind, this is all based on testing and evaluations up to —but not including— the arrival of Miss D and Miss T into our lives this July. Since then…nothing but progress and rapid gains, baby! Makes sense since he’s all of a sudden receiving roughly four times the amount of therapy he got all last school year.

I forgot to mention, all of this mayhem is the result of a great conversation with a very savvy advocate —the same one who is coming to the IEP on Friday! It is at her urging that I embarked upon this tedious and frustrating (albeit highly edifying) endeavor which I hope will pay huge dividends! Maybe that’s why it has been so difficult for me? Not so much compiling the evidence of things I already know, but the need to paint a picture of my son in such a light that we have a shot at prevailing in our quest. I am leery of getting my hopes up again only to be dashed upon the rocks once and for all.

So, this conversation with the case manager has not yet taken place; I wanted to make sure I had all my “ducks” in a row. I need to present a compelling argument to convince her that it is not only in Nik’s best interest for us to take him out of school, but that it is also a sound financial decision for Medicaid. I’ve compiled charts of data, lists of arguments, evidence to support the evidence. You name it.

I guess I can’t say it’s all been bad; I mean I did have a realization about Nik’s health which had not been so clear to me before.

Since I’ve been mired in depressing health statistics today I will share them with you. Lucky you! In the past 15 months —which is the time frame since he began school at the age of two and a half —Nik has:

— missed 32 days of school (more than 6 weeks). Of that time, more than 70% has been due to illness, including a week-long stay in the hospital in January.

— been on antibiotics 14 times in 15 months.

— lost an average of two hours sleep for every school day because we have to wake him early enough to get his tube feeding in to fit the school schedule.

— lost and gained and lost roughly the same three pounds —right now he’s holding steady.

— been diagnosed with an immune deficiency and now needs to be on antibiotics every time he is ill so he can fight off any secondary infection. The constant use of antibiotics puts Nik at significantly increased risk of developing resistance to the few drugs he can take; he is allergic to all “-cillin” drugs (Penicillin, Amoxicillin, 4 generations of cephalosporin drugs, etc.).

In addition to all that, there are numerous developmental reasons why school is not right for Nik at this point. Nik requires significant one on one attention and direction simply to engage him in a desired activity. He also requires highly focused, individualized attention to practice and retain new and emerging skills.

To date, despite numerous conversations about the need to do so, there has not been any effort made by school to address Nik’s perseverative behaviors —specifically doors and drawers. Nik doesn’t respond to a simple reprimand/rebuke. He needs active redirection until he has the cognition to understand either it is not something to play with or that he may do so as a “reward” for doing “x.” There is not a consistent manner established at school to address this “interfering” behavior. Their word choice.

It is becoming clearer and clearer to us that Nik is unable to process the bombardment of sensory input he receives during the school day. He does significantly better in a quieter, smaller environment. He does have moments of shining splendor during the school day but by the time he comes home from school, Nik is so dysregulated that he cannot function. He cannot make eye contact, he cannot sit still, he does not respond to attempts to engage him in anything; he simply likes to play on his own and on his own terms. This usually involves a lot of throwing toys and laughing maniacally! By dinner time, Nik is so exhausted from the day that he cannot pull himself together to function without the risk of injury (like tonight’s “facer”). Often, he is nearly passed out from exhaustion before his dinner is even finished.

Then, too, we have concerns about Nik’s physical safety at school during his period of being a “new walker” combined with his visual deficits. Of particular concern is his depth perception in an environment that is visually very flat and composed of cinder blocks and hard tile floors, lots of counter tops at eye height, etc. Nik has already had two episodes in two weeks of falling and hitting his head hard enough to cause clusters of increased and changed seizure activity immediately following. There is talk of trying a soft helmet but we have very strong doubts that Nik will comply due to sensory issues he has with things on his head. School is the only place Nik has this problem with any consistency.

As I re-read what I have written, I can understand my mood of late. It’s not that I don’t have the greatest of hopes for Nikolas —I absolutely do! It just frustrates me to no end to realize how much harder he —and we —have to work just to provide opportunities for him to make the progress he is capable of making. It galls me that we as a nation spend so damned much time, energy and money on a war we didn’t ask for and have nothing left to nurture and educate our greatest resources of all. And it makes me sad that I have to paint a less-than-flattering (though wholly accurate) picture of my son in order to help him.

Wish me luck, I think I’ll be talking to that case manager soon.

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Wow, that was some party last night, wasn’t it?
Sorry I ran out of food so early! 😉

Thanks for coming to hold my hand — it means a lot to me. Prayers, hugs, and drinks…all are appreciated! (Mom-NOS, are you hungover today? 😉 )

Nik had a good, solid night’s sleep last night and woke this morning in his usual chirpy, laughing and happy mood. He seems none the worse for wear…except the purple goose egg on his forehead.

We’re still going to be watching over him but I feel much less anxious after a good night’s sleep for all of us. Sleep really is such a balm, isn’t it?

I hope you all made it home safely; I’m afraid I passed out after the post! LOL We’ll have to do it again sometime soon— maybe at someone else’s house? Or better yet, let’s throw a giant party to celebrate all the good stuff. ‘Cause I know there’s plenty more of that coming, too!

Happy Saturday. We’re off to the park later…race you to the swings!

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Been reading but not commenting tonight…too much energy expended today. I didn’t really want to blog about this tonight; I was going to send an email to one person in particular but thought that it was unfair to put that burden on her shoulders. I know she would willingly carry it, but it didn’t seem fair to ask that of any one. And maybe I really just need some Mama-lovin’ from all my blogging buddies…

Long story short, Nik hit his head pretty badly at school today and had a cluster of “mild” seizures pretty close together. The seizure activity isn’t that unusual —he does have “absence” seizures which are moderately well controlled by meds. But the frequency and characteristics of the seizures this morning were different; usually he just stares and zones out. A few times this morning, he went rigid and trembled a moment or two then zoned out for a bit. I think it really upset one of the para’s; she totally adores Nik and hats to see him go through this. Me, too.

We saw Nik’s pediatrician this afternoon. There’s no sign of any fracture, thank God! She told us to watch Nik closely over the weekend in case there are any changes in seizures or his behavior. If so, it’s the long trek to the hospital (an hour) for CT scans or whatever else they decide he may need. I don’t think it will come to that, but I am not going to say I am not worried.

But you know, I am so sick and tired of worrying about my child every time I turn around; it’s depressing and exhausting. Frankly, it sucks. Yeah, I know, “Get over it, Niksmom; it comes with the territory.” Well, I wanna move sometimes, really! (She whines, stamping her foot for emphasis!)

I suppose the bright side to this is that school is looking much more closely at that one-on-one situation. Maybe now we can get support from the staff and put some pressure on the administration to come through? God that sounds so Pollyanna-ish but I really do need to stay focused on the positive or else I will just get sucked into this swirling vortex of bleakness and despair which hovers so closely over my heart on some days.

So, I’m afraid there’s no cute Nik story to share tonight…just Niksmom having her own personal anxiety-fest. It’s BYOB or whatever else you want. Misery loves company sometimes.

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