Archive for the ‘multiple disabilites’ Category

Image courtesy of Richard Winskill
Jennifer Graf Groneberg has a beautiful post today at Parent Dish about ice cream —and ripples. It got me thinking this morning about what effect I have on the world around me —both in my own closely circumscribed world of family and in a larger, more global or community sense.

It’s so easy to go through the motions of each day, one moment at a time, without fitting the bits and pieces together —never seeing the forest for the trees. Days start to run together and events repeat with a numbing regularity which dulls my senses. Sometimes, in order to see ourselves more clearly, we have to step outside our daily routines; take the road less traveled —or at least the left turn instead of the right —and things change.

If we are lucky, we can see the change we are being and creating as we go. If we are, perhaps, not as observant but equally lucky, we have friends who are there to help us not only find the forest but navigate our way through it. That has been my experience in this past year of blogging. Some days —weeks really— I have been moving so fast and furiously that I’ve missed the beauty around me —until some kind blogging friend has reached out and touched my heart, reminding me that my absence is felt; there is a hole which no one else can fill.

Tuesday, the day of my high muckety muck committee meeting, was also my blogging anniversary. I was so busy —and have been all week —that I completely missed it! But, you know, there’s a funny thing here because —without the support, encouragement, wisdom, humor, and self-discovery I have shared with my readers and blogging friends over this past year —I would never have had any sense that my absence was felt at those committee meetings that I missed; that my one voice does make a difference. I would never have spoken up and had my needs —and Nik’s—met with such grace and ease.

Nor would I have been so beautifully reminded of the gifts I bring when I share my son with others —both online and in person. I know my son is magnificent and special; what parent doesn’t think that about their own child? But seeing my child through others’ eyes has made me a more conscious parent, more willing to recognize and, when appropriate, place my son’s needs ahead of my own desires and ego. I feel the weight of the responsibility a little heavier than I would like on many days but I shoulder the load with love because I know I am not alone in the journey.

The meeting itself went well; perhaps I will write more about that another time. The child care, depending on your perspective, was pretty good. There are things I learned that I will do differently next time to make sure Nik has a bit more guided activity for part of the time. Also, I realized that people do not fully understand perseveration until they experience it first hand. The unfortunate effects of allowing certain perseverations to continue for a long time have lasted long past Tuesday afternoon. But I can see that it is up to me to guide those who care for my son as well as to find new and creative ways to distract Nik and keep him more fully occupied in the days which follow.

None the less, I know that Nik was cared for by a loving and conscientious friend; S was not afraid of Nik’s high energy and insatiable —bordering on dangerous— curiosity. She’s even willing to do it again for the next meeting in July! S sent me a beautiful email after she got home; she wrote —

I so loved spending time with Nik. I want you to know, that I was able to connect with how awesome of a kid he is!
I know you already know!

Niksmom, ALWAYS keep the hope in your heart going strong.
That one-on-one time with him was amazing. I watched how he
problem-solved. I watched how he NEVER got discouraged when attempting something. I watched him enjoy his now –
which so many of us adults can never do. I watched his compassion
as he wanted to share his apple with me, just like his Mommy – I was honored.

Niksmom, I loved being with your blessing. Because guess what,
he is a blessing to me too. A reminder of WHY WE DO THIS!
Our precious, precious children.

When is the next ICC meeting? You have me for as long
as you can use me!

With love for you my friend,

Because of S’s generosity and the ripples she created by tossing her pebble into my tiny pond, I was able to do some work on an issue which is really important to me —helping families understand and successfully navigate the transition from the early intervention program to the schools. I am now heading a subcommittee which is going to create a family guide to be used statewide by the birth-to-three program and the parent information resource center. Ironically, our horrible experience with Nik’s transition (and subsequently, his bad school experience) puts me in a really good position to look at this issue from the standpoint of hindsight about what I wish we had known going in and how I wish things had been handled; I also have one of the more medically involved children that they have dealt with in a long time. There are other parents and some service professionals on the subcommittee, too, who have a variety of unique perspectives to share. I am looking forward to the process.

One day I took a pebble called blogging and tossed it into my little pond; my pond was forever changed. Then I took some pebbles from my own garden and dropped them into several other ponds. The ripples are still moving outward and I cannot see how far they extend, but I know that I am changed yet again.

Thank you for being a part of my journey, my growth, and my change. Thank you for the ripples you’ve made in my heart and in my life.

Photo courtesy of http://www.treesforlife.org.uk/forest/photo/rain.html

Read Full Post »

You thought it was a tough situation for your kids in public schools now? Try being a home schooling parent in the state of California right now. A recent decision by the 2nd District Court of Appeals (re Rachel L.) states that “Parents do not have a constitutional right to home school their children.” Those are the words of Justice H. Walter Croskey in his Feb. 28 opinion for the court. The case decision mandates that a parent must now have a valid teaching credential in order to home school their child. According to Croskey, noncompliance could result in a criminal complaint against the parents.


The case is detailed quite well here at the Home School Legal Defense Association’s (HSLDA) web site along with links to the actual court opinion and HSLDA’s response.

The family in the case at hand in the 2nd District Court of Appeals chose to home school for religious reasons. That is but one of so many reasons a family might choose to home school. Other reasons may include safety or health concerns for your child, the need for a smaller class setting which school cannot or will not accommodate through a child’s IEP or 504 plan, or children involved in some aspect of sports or entertainment which require a self-paced learning progam —to name a few. I cite these examples because it is too easy to read the stories in the news and dismiss the impact because “it will only affect the religious home schoolers.” Not so.

Whether you are a home schooling parent or not, this decision could greatly impact your child. If other states follow suit, the result could be a very large influx of currently home schooled students —with either or both general and special educational needs— into the already strained (near breaking in many cases) public school system. Every student could be affected by a significant decrease in available resources in a system where most teachers are already stretched to the maximum in terms of class sizes and financial and material resources available.

Many teachers already use some of their personal funds to provide supplies for students in need as well as to supplement continuing budget cuts. If you think I am exaggerating, check out nearly any school’s list of supplies expected to be provided by families at the beginning of the school year. In my district, Kindergarten families are expected to provide tissues, folders, glue, hand sanitizer and the like; supplies which should already be staple items in a school.

Those of you who know me, either in person or on-line, know that I am not a terribly politically active creature; I prefer to keep my politics and religion to myself for the most part. But this issue has the potential to deeply affect me and my family; in my state, home schooling is classified as non-public and, as such, is not eligible for any funding, grants, or resources available to public and private schools —especially for special education support or services. Like it or not, the decision in the Rachel L case could affect your children as well. I cannot urge you strongly enough to read the articles, understand the court case and its potential impact on the future of education in this country, and then sign this petition.

You don’t have to be a California resident to make your voice heard on this issue.

Our kids —all of them— are counting on us.

Read Full Post »

(Subtitled: Nikolas and the VERY BAD hair day)

In light of all the sweet comments about how well my wild child-biker boy seemed to tolerate the ambulatory EEG, I must come clean. I confess to engaging in a bit of Potemkin-izing in posting that photo. Not that the moment itself wasn’t real; rather, it was only a brief moment of levity in a very long, tiring, frustrating day. One I wasn’t quite ready to write about as it hadn’t yet reached its dénouement.

If you consider the mystique of the “biker dude” –the devil-may-care attitude, the I-do-what-I-want-when-I-want swaggering bravado typified in biker lore –well, you’ll get a slight inkling as to how our day really went yesterday. To say Nik had his own agenda would be an utter understatement. His agenda? To get the hell out of the contraption on his head –no matter what. Our agenda? To do whatever it took to keep it on for as long as possible. It was ill-fated from the start; someone was going to lose.

The initial hookup went okay. Nik thrashed and cried but he did not have to be restrained or sedated; that is a major breakthrough for all of us. (Though, I must admit I might have wished to be sedated by the end of the day yesterday!). I say initial because we made three trips back to the EEG/Sleep Lab within the first four and a half hours to repair the damage done by little fingers and thrashing heads. The sticky paste on his head, the pressure of the little metallic cups of the electrodes, the tape, the wrap, the weight of the recorder pack –which Niksdad brilliantly attached to Nik’s beloved doggy backpack; all of it was a complete sensory nightmare for Nik.

By the third visit, we had pretty much debugged the trouble areas where the tape and wrap weren’t holding. We had to break down and wrap under Nik’s chin, too. That made him ballistic! In the end, we brought supplies home to do our own repairs/reinforcements for bed time, knowing all too well that the electrodes wouldn’t make it through the night with ol’nimble fingers Nik! But I’m getting ahead of myself.

In all, during the daytime, Nik tolerated the whole get-up quite well –as long as he was thoroughly entertained every waking moment. Both Niksdad and I spent the entire day playing with Nik, keeping his hands and mind distracted from the gooey, hard, dangling things on his scalp. We actually managed to have some fun together in the process, but boy was it exhausting! As I wrote to Kristen last night, hour-long shape sorting sessions aren’t exactly my idea of a good time.

The cool schmatta on Nik’s head is actually his dad’s do-rag which he wears under his motorcycle helmet in warm weather to help absorb perspiration. We thought it was less intimidating and less post-brain-surgery looking than the flesh-toned brown cling wrap on Nik’s head. Nik didn’t seem to agree and only kept it on long enough for a few good photo opportunities. I’m telling you, the kid knows when he is on camera and expected to perform; that can be good and bad.

In the middle of the night, Nik awoke with one of his painful episodes and freaked out because he couldn’t get to his ear –it was partially covered with the wrap and tape. In his feral hysteria, he managed to pull the entire wrap off in one painful motion –along with the tape from his cheeks. As he flailed and screamed and wept, Nik kicked and glared at me. His expression vacillated between accusatory rage and pleading.

My heart squeezed tight in my chest as I tried to stay calm. (Hey, I’m great in a crisis but hell in the aftermath.) Niksdad and I managed to replace the leads which had come undone and I wrapped his head –again. With a full day of school ahead of him, Niksdad returned to the oblivion of sleep; Nik lay in his crib, his little body wracked with angry sobs. He held onto my hand, squeezing intermittently, not quite willing to punish me in full measure and unable to let go of the comfort I offered.

We stayed like that for more than an hour. I knelt by the side of the crib clinging to my composure and murmuring soothing shushing sounds as Nik began to relax. I felt like a supplicant at the altar; praying for redemption in the eyes and heart of my tiny, outraged savior. My absolution came on gentle, steady breaths as my child drifted off to a fitful, exhausted sleep. I lay on the floor and wept.

A few short hours later, I awoke to the sounds of Nik laughing and clapping both his hands and his feet –something he does when he is inordinately proud of some feat. Sure enough, Nik had managed to complete the job he had begun the night before –the job I had interrupted with my cling wrap and tape. Nearly all the electrodes were detached and dangling from the tangled mass of his gooey hair. Cognizant of his decisive victory, Nik sat up in his crib, blowing kisses to me.

We all knew it was a done deal that I was returning to the lab with Nik first thing this morning. We ended up completely disconnecting everything so they can download and analyze the information; hopefully, enough data was captured to be useful. If not, we will have to go back again this afternoon to try again for another 24 hours.

I’m not sure my sanity can withstand another assault so soon!

UPDATE: We dodged the bullet of another 24HR EEG! Whew! The doc is reviewing the data but the tech said they got a lot of good, clear recording —especially at the times we noted that Nik seemed to have some type of possible seizure activity. Most of his episodes showed up during his sleep on previous EEG’s so I hope they were able to get enough of the night time data in spite of Nik’s “hat doffing” exercise!

Right now, Nik is in his jammies and down for quiet time; I’m hoping he’ll sleep so I can, too!

Read Full Post »

Damn Murphy anyway. I should have known better than to post all that wonderful “spring is coming, la, la, la” crap the other day. I might as well have stood in the middle of Fifth Avenue just daring the Manhattan cabbies to hit me as I crossed against the light.

Whatever it is that goes on in Nik’s head —and I mean that entirely literally —to cause such pain and distress is on the rise again. It’s been an ugly couple of days around here. Nik’s been Jekyll and Hyde, the master of the mixed message, contrarian extraordinaire. He wants me; he doesn’t want me. He clings to me; he pushes me away but gets upset when I leave his side. It’s no longer sweet and endearing. We’ve far surpassed bonding and moved right into the stalker stage.

And the pain. The physical pain that washes over him unexpectedly. While he’s playing or dining. While he’s watching Mary Poppins. It’s as if someone has stuck him in the eye with a hot poker. And Nik seems to want to blame it on someone —anyone —and I seem to be conveniently at hand. I can’t say I blame him, really. I mean, I’d like to be able to blame someone or something for the topsy-turvy days, the disjointed nights, and the bruises and tears. If I am feeling this way without the physical sensations Nik is experiencing, well, I can only imagine how he feels. Though, last night I did go to bed early with a migraine; I’ve not had those in nearly a year.

We’re back to the daily Advil habit to mitigate the worst of the pain —or at least dull it to a tolerable level. I hate when we have to resort to that, though; it really starts to wear on his stomach. Today he’s been clutching at his belly periodically. It makes me wonder if it’s the Advil or if it’s new symptom being added to the mystery ailment.

The irony is that Nik is making such great strides in so many areas; I just hate that it comes wrapped in such prickly packaging.

If I try to be really objective, I might be able to see that, perhaps, Nik’s sudden clingy, bossy, come-here-go-away behavior is an attempt at controlling something that feels out of control to him. A small measure of comfort when he feels ill at ease, perhaps? Maybe it is those things and maybe it is not. I wish he could tell me what hurts, what he feels and hears. What he needs.

Tomorrow morning Niksdad and I get the dubious pleasure of taking Nik to the sleep lab at our neurologist’s office; at 7:30 tomorrow Nik will be hooked up for a 24 to 48 hour ambulatory EEG. Thank goodness Niksdad does not have school tomorrow and will not only be around to help me in the morning, but will give me an opportunity to get out of the house for a bit by myself. The last time we did an ambulatory EEG, Nik was not walking; in fact, he had just learned to sit up a month before. I can’t help but wonder how Nik will respond to all the electrodes on his head and lugging around the backpack-recorder.

If there is a patron saint of parental sanity, please, please pray for me? For us?

Read Full Post »

There’s something talkin’ in the wind
Whispering through the trees
That feeling in my bones again
Just puts me right at ease

It takes me back to all the times
I’ ve been here before
But crossroads, old familiar signs
Tell me there’s something more

(A Change In the Air ~ Clint Black)

There does seem to be the scent of change in the air lately. As I wrote in this poem, it feels like spring is finally coming after a long, dark winter. I don’t just mean this particular season; I mean a winter of the spirit, of the soul.

It feels as though we are on the cusp of some big breakthroughs in many areas with Nik. Since we decided to take him out of school this past autumn (you can read the saga here, here, here, here, here, here, here, and here), he’s made such remarkable progress in all the ways which inspire hope and joy in my heart. No, Nik is not yet potty trained or eating by mouth; he still has a way to go in those particular areas. But he has made such great strides in connecting with and integrating his environment, connecting on a deeper, more intimate level with so many people —and differentiating between us all.

The bonds between both Nik and his dad and Nik and me, have become so strong that we are no longer peripheral to his daily activities —no longer merely the people shuttling him back and forth to appointments, changing him, feeding him, picking up after him; we’ve become central figures —the ones he wants to play with, to dine with, to hang out with. The ones he misses when we are gone from his side for more than an hour or two. The joy in his little face when he hears my voice when I come home from the gym. The gleeful way in which he drops everything and races to the gate when Daddy comes home from school or work; the squeals of delight when he sees his coat and knows he is going “Zoom-Zoom” —off on an adventure with one or both of us. The deep, crinkly-eyed laughter we share as he looks into my eyes when I tickle him or dance with him, or teach him how to flip backward off my lap to do a standing somersault.

The connection goes so deep, the current runs so strong and true that it makes me weepy nearly every time; we’ve waited so, so long for this connection. It feels fresh and new and exciting every day.

Nik has come light years in a few short months in the way he communicates and cooperates, as well. Nik has progressed from completely ignoring our requests such as “Hand me the red square” when we are playing with his shape sorter, for example, to not only complying roughly seventy-five percent of the time but to also no longer simply throwing his toy over the gate when he is finished with it. Now, he will bring the toy to the gate and, if one of us is in view, he will babble or make some sort of noise to get our attention and then hand us the toy.

I realized just yesterday, as I watched him try and fail a few times to get one of the pillows from the sofa over the gate, that Nik’s tolerance for frustration is increasing; he’s developing more of a determination to persevere. He still gets upset when certain things don’t cooperate with him, but —by and large— it seems that he makes so many more attempts at things before he falls apart if he cannot do it. He is more easily calmed down in the aftermath, as well.

If I see he’s very frustrated with something, I’ll let him have a bit of a tantrum over it and then I’ll come into the room and simply say, “What is it, buddy? Can you show Mommy what you want?” Usually, he then engages with me to help him problem solve; I am trying very hard to not simply do things for him any more. Nik has more than proven he is perfectly capable of figuring things out, but sometimes he just needs a little reassurance that he can, in fact, do it. Not terribly different from any other four-year old, I imagine?

I am very excited about getting Nik’s communication devices; I haven’t written much about that because I didn’t have any idea how long it would take or what to expect. We are completing the paper work to order the devices recommended during his AAC evaluation at the end of January. In the meantime, though, I just found out today that the local branch of our statewide assistive technology initiative (DATI) has both devices available for us to borrow for up to two weeks at a time. If no one else is waiting for them, we may be able to renew them for an additional two weeks which should nearly cover the processing time for Nik’s own devices. I’ll tell you more about the devices and how we can use them in another post a little later.

In the aftermath of the EEG fiasco earlier this week, our fabulous new neurologist has made arrangements for Nik to have an ambulatory EEG done locally —this coming Wednesday! We are hoping that the results will give us some more information about Nik’s odd, recurring pains. I truly don’t think they are seizures but it will be good to have the results to rule it out.

Dr. G recently increased one of Nik’s seizure meds —and we’re seeing some positive changes, thus far. The increased dose does tend to make Nik a bit drowsier —though you’d be hard pressed to tell during the day! If you didn’t know Nik and watched him play during the day, you’d think he was a fairly energetic boy; I can see that he is a bit less frenetic and is able to focus on one thing at a time for longer periods. He also takes slightly more quiet breaks and will lay down to play with a toy for a few minutes before he jumps back into the fray.

Where I really see a change is that he is napping again —up to two hours at a clip, if I let him! And it doesn’t seem to interfere with his ability to fall asleep at bedtime. Nik is averaging about ten to eleven hours a night; I wish I could say he is consistently sleeping through the night —but I am hopeful that he will again! The best part though is that both Niksdad and I think we are seeing much less seizure activity since the increase. It’s only been four days so far, but it’s a good sign.

And, of course —as you saw earlier this week— the eating is progressing very well. Now, mind you, we’re nowhere near even being able to count the calories in what Nik is eating and even farther away from thinking about losing the feeding tube. But, the progress Nik has made in the last couple of months is unbelievable. It’s as if he is constantly challenging himself to try something new.

The key, I think, has been in recognizing and honoring his need for autonomy; Nik wants to feed himself —which is right in line with his extremely strong spirit of self-determination! It seems that, as long as Nik has his own utensil —and, lately, his own bowl —and can have some measure of control over eating, he is a willing participant. I might even venture to call him a joyful participant. He still struggles with large quantities of more than a half-teaspoon at a time, or with chunks larger than a grain of rice; he hasn’t quite figured out the whole chewing mechanism but we think he is on the way. Where, a year ago Niksdad and I were running on the faintest vapors of hope that Nik would ever eat by mouth again, we are now both excited and enthusiastic. Mealtimes are wonderful family times again.

Many would say that our life goes at an insane pace —and I suppose they would be right. Between Niksdad’s nursing school, nursing clinicals, and work and Nik’s multitude of therapies, playgroup, and swimming —with the very frequent doctors’ appointments thrown in for good measure— and my renewed attempts to get in regular work outs at the gym and maybe even a date with Niksdad every once in a while, I guess it is rather frenetic. But it feels like the pace of a family finally hitting its stride after so many stumbles and false starts; like we’re actually gaining some ground right now.

And that’s a pleasant change, indeed.

Read Full Post »

Angel of my heart and soul
Arrived too soon and stayed too long
In the care of others

Making up for lost time
Trying to recapture moments missed
We tarry together

Closing out the world
We dance together
Listening to the rhythm in our hearts
To the music of your laughter

The luminescence of your soul
Sparkles in your eyes
Softening the shadows in my spirit
When I would linger with the familiarity of doubt and fear

The touch of your velvet fingertips
Against my cheeks
As you pull me toward you
Begging me to tickle your neck
Again with my raspberries

Your eyes look intently into mine
As if you can see my heart and soul
And feel the love
Overflowing from my every pore

The intimacy of the connection
Sparks a flame within
Fanning the embers of hope
Into a roaring blaze

I warm myself
In the heat of your intensity
I bask in the glow
Of your innocence

I feel the approach of spring
After a long, dark winter

Read Full Post »

Hospital screw up
No room there for Nik
Have to reschedule

Well, this day just didn’t turn out a thing like I expected; that’s both a good thing and a bad thing.

It started off at 1:30 this morning when I was up being ill from something I ate last night. Well, that and quite possibly a bit of anxiety —which is actually not typical for me, but this EEG trip had me pretty wound up. Still not feeling great, I spent the rest of the night sleeping sitting up in bed. Highly relaxing —not.

Nik woke in a wonderful mood and laughed and giggled his way through our morning routine and all the way up to and including PT with Miss T. It was during OT that he fell apart. Usually Nik is all smiles and love for Miss D but today he just didn’t want to do anything she wanted him to do. It didn’t’ help that Miss N, the intern from the local community college who has been working with Nik for the past several weeks, was doing her video interview and treatment today for her class presentation tomorrow. Not that it was a problem but that Nik knew something was different —maybe he sensed the pace was slightly disjointed —and he wanted no part of it.

The interview portion was really interesting for me. Miss N asked me all kinds of questions about what life with Nik was like at home, what challenges do we or did we face with school , what changes did we see in Nik as a result of the therapies, etc. It was a great opportunity for me to really look at my child with a slightly different perspective. Not just Nik, my miracle child, but more as a representative at large of children with disabilities. I had to consider carefully what I wanted the students in Miss N’s class to take away from her presentation; what did I want Miss N to take away from her personal experience with Nik.

I talked about the need to always presume competence no matter what the test scores may indicate. I specifically talked about our experiences with Nik and testing and why he scores so low on standardized testing methods. I talked about the erroneous assumption that educators and service providers often make in thinking that because a child cannot speak or write that they cannot either understand what is being communicated to them and have nothing to communicate. I shared some of the personal discoveries I have made about Nik —and because of Nik— and how much he has to “say” if I am willing to take the time to learn how to “hear” him.

We talked about the need for sensory processing to be thoroughly addressed, especially with children who have spent long periods of time in the hospital. I touched on the importance of re-training or re-awakening neural pathways that either didn’t develop or were somehow interrupted with medical interventions or illness or plain neurological differences. I hope I didn’t overwhelm poor Miss N.

When Nik was born, Niksdad and I decided the experience could either make us or break us; we chose to become stronger. It has not always been the easy path to walk, I can assure you. But when I realize the opportunities we now have to help influence the training of future therapists, educators, and medical professionals, it makes it worthwhile. Not that being Nik’s parents isn’t worthwhile! But knowing that we can use our experiences and insights to help other children, other families —well, that was just part of the unspoken mutual agreement we made years ago.

So here we are at 10:30 in the morning and we’ve just rocked Miss N’s world. Let us proceed with the rest of the busy day. Just enough time to head home and play for a bit before lunch —the usual ninety minute affair of tube feeding, oral food play, and then sitting upright for about twenty minutes to keep Nik’s reflux at bay. After that, Nik slipped into his backward jammies for a short one hour of quiet play. (The jammies are for inhibiting hands in his pants —particularly messy if there’s a BM involved!)

Then, back into clothes and out the door for our very first adapted swim class! This one was a real crap shoot since Nik can either love or hate the pool depending on the day, the planetary alignment, etc. Today was somewhere in the middle, I think.

The teacher, Mr. Tim, is a very nice young man; Nik took to him right away. There was only one other child there today; there are a total of three boys including Nik. All three are autistic and all have varying characteristics and strengths. Nik is half the age of the other boys and is not quite ready to keep up with them. He is also the only nonverbal one of the group.

After a few minutes of observing Nik and his shifting level of comfort in the water —as compared to the other boy’s ability to paddle around and jump by himself into the water— Mr. Tim and I agreed that Nik really needed to be in a toddler-oriented class. Since Nik’s schedule of therapies precludes us from taking the regularly offered class —and I’m not sure how much he would get out of that particular group setting just now— Mr. Tim is going to work with him one on one for half an hour every Monday afternoon. I think that will work out very well for Nik; he loves the water and it really gives him some wonderful sensory input that helps him self-regulate so well.

So, now Nik’s week includes feeding therapy on two days, PT and OT one day (but getting ready to request a second day), speech therapy, play group, and now swimming. Whew! When I write it all out it seems like too much, but I know we break it up into manageable chunks. And I also know the steady, consistent progress I’ve seen in Nik over the past six months. I just cannot imagine we would be where we are today if we hadn’t taken him out of school.

So, by now you must be wondering what the hell happened with the EEG, yes? I’ll spare you the story of how I found out that it wasn’t going to happen tomorrow —it’s long and frustrating and involves crossed signals, dropped balls, and one very frustrated mother. Suffice to say, the hospital has only one room in which the video EEG’s are done. That same room serves as a regular patient room when necessary. Apparently, it’s necessary right now. In fact, the woman I spoke with late this afternoon told me that they had been canceling or postponing many video EEG studies lately because the hospital was so full. And while I can appreciate the need for postponing, t sure would have been nice if someone had planned on telling me before I showed up on their doorstep tomorrow with a rambunctious four year old and a carload of stuff!

The silver lining in this dark cloud has been the stellar performance of our new neurologist and his staff. When I left an “urgent” voicemail for Dr. G’s assistant at 4:45pm telling her the hospital didn’t have us on the schedule for tomorrow, she not only called me right back and helped me formulate a plan, she also asked me how Nik was doing —and then really listened when I told her. She must have pulled his chart and gone right to the doctor because not fifteen minutes later Dr. G himself called me. Now you may recall that our last neuro, reputed to be the most brilliant one in the whole state, never bothered to return phone calls or provide written reports unless absolutely hounded to death.

Dr. G and I discussed a back up plan —involving an ambulatory EEG (24 hours done at home) if the hospital could not accommodate us within two to three weeks. He also looked at Nik’s most recent blood work and told me that his Depakene level was actually low and we increased it to see if that will help a bit. But most importantly, he responded appropriately; he acknowledged the problem (which is actually out of his hands as he is not on staff at the hospital we were going to), he came up with solutions, and he took personal interest in the outcome. I love this doctor.

So, here I sit tonight, with my head spinning from the whirlwind of activities and information; it sure feels like it’s been a long year, er um, day. Stay tuned…

More fun on the way
You never know what you’ll get
In a day with Nik!

Read Full Post »

Things got waaaaay worse for my poor little guy yesterday afternoon. I’ll spare you the graphic details and simply tell you that I had multiple conversations with the pediatrician’s office (Dr. Mary was out yesterday) to find some relief for my poor boy! His skin was so raw! We had to discontinue the antibiotics; the side effects were strong enough to nearly send us to the ER yesterday —no exaggeration! Fortunately, after roughly twenty-four antibiotic-free hours, Nik is much more comfortable today! Not great but so much better! Whew!

Here’s a cute video to show you how silly Nik can be —even when he’s not at one hundred percent! And, yes, in the video Nik is shirtless on a cold, snowy, icky day! Let’s just say it wasn’t by Mommy’s choice. [NB: This was taken with my cell phone so the quality is not great. The audio is really faint but there’s no need to turn up your sound; it’s just the sound of one of Nik’s toys in the background.]

I had another video, in which Nik plays Godzilla destroying Tokyo; it’s his recreation of a fine, fine cult classic I didn’t even know he knew about! The video was too large to post (26MB) so here are some “production stills” I put together.

NikZilla Strikes!

I don’t know, but I think he’s too darn cute to be intimidating, don’t you?

I’ve also been told by lots of people that Nik is a dead ringer for this guy! If they only knew…

Read Full Post »

« Newer Posts