Archive for the ‘disabilites’ Category

Boxes of old papers and photographs, stacks of books, piles of medical records and therapy reports I need to scan and organize.  The loft in our small town home has become the black hole of all the little bits of our life for which we have no clear cut place.  The loose ends, the question marks —“Do we need to save this?  What if we need this?” 


While my husband has been in school and working every weekend our time together has been limited.  Much of that time is taken up with things like, oh, parenting Nik and dealing with his ongoing health issues; there is never any time or energy left over for tackling any but the smallest of projects around the house.


Niksdad’s recent job loss turned out to be a bit of a mixed blessing this week.  He was home and wasn’t buried in the books so we had a chance to finally tackle the loft.  It’s not finished by a long shot but the work has begun; the “heavy lifting” of moving filing cabinets, repairing a sagging book case —the things I cannot do myself while also keeping a watchful eye on Nik —are complete.  The difference is remarkable; the loft feels larger already in spite of the boxes still stacked in the middle of the room.


I can finally imagine what it will look like when we have completed the project.  More to the point, I can already feel the sense of ease which permeates the space.  Where we once felt squeezed into our little corners of the room —where our desks sit tucked into opposite corners —already it seems more tranquil, more comfortable.  We both wonder why it took us so long to make this space —where we spend so much waking time— our own.  I say it was the vagaries of time and our limited energy supply but I think, in my heart, it goes deeper.




Nik’s recent bout of gastrointestinal illness has been very disturbing; not only has it gone on longer than any other virus he’s ever had, its intensity is unnerving when the waves wash over him.  He is unable to communicate the nature of the pain with more than screams and howls as he doubles over or as he shrieks and kicks his legs to seek some relief.  He clasps his long fingered hands together over and over asking us to help him, to ease his pain.  To make it stop.  We feel helpless to do more than hold him and croon soothing words as we rub his belly or his head, to clean up the aftermath of his body’s release.


This latest development, the hardening of his belly as his too slender body braces itself for the impending pain and uncontrollable outcome, frightens me.  It seems to last for hours and I am gripped with a fear that we are missing something that could mean the difference between life and death.  The recent loss of beautiful Evan sits heavily on my heart as I struggle with my desire to call his mother, Vicki, for advice and my unwillingness to ask her to relive that horrible pain.  I cannot; it would be too cruel.


My husband, the nurse, is quick to assure me that Nik’s bowel sounds are good and his belly does soften some after he’s had a bout of diarrhea —though not nearly back to “normal” enough to ease my fears.  I return to another memory packed away in my own mental loft —a place where there is not and never will be a neat, tidy, compartmentalized storage system for all the hurts and memories of watching my son struggle through so much of his early life.


The discovery of Nik’s intestinal malrotation was unexpected; he’d been showing many of the same symptoms that he has over the past two weeks and he had normal bowel sounds then, too.  Then, he was considered a “very lucky little boy”; the doctors discovered a partial volvulus —an obstruction —which they said was “a time bomb waiting to go off.”


I want to assume there is no such time bomb awaiting us now but the memories of all those times we thought we might lose Nik have built themselves up into a thick, smooth scar upon which I worry —much the same way others might rub a stone or rosary beads —each time Nik’s health takes an unexpected turn.  The history is too strong and the memories run too deep. 



I want to shed the burden but I seem unable to.  There are times it is the thing which keeps me pressing forward for answers on Nik’s behalf.  I fear the complacency.




I sit at my desk, still wedged into the corner but less crowded now.  The room is the same yet it feels different.  Attitude?  Belief?  Perception?  I am uncertain what makes the difference as I begin to make my way through the boxes of old hospital bills and NICU discharge reports.  “What if I need this?  What if Nik needs me to have this?”


I examine the pages, searching for clues —answers someone may have overlooked.  On those same pages, I see hope; for each date racked up on that enormously large hospital bill, it was another day my son lived.  Another day of getting stronger, healthier —closer to coming home.


I realize the answers I seek are not to be found on those pages.  Still, I am unable to let go.

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There’s lots going on here at NiksHouse —some not so hot but definitely transient (we hope) and much more tipping the scales n the opposite direction. In fact, there’s been so much happening on a daily basis that it’s been difficult to stop and take the time to write about it all. It’s difficult; I don’t want to bore everyone with excruciating detail over each last little health issue, nor do I wish to inundate you with exclamations over each and every little thing Nik is doing lately.

Instead, I’ll share an experience we had this afternoon, at the park, which more or less sums up where we are these days.

This lovely Jamaican woman was sitting and talking with someone as her children played on the play structures. Nik saw her and made a bee-line for her —from across the parking lot! He walked past the person she had been speaking with and immediately took her hands in his to clap them together. As she good naturedly humored Nik, we talked and she told us she is a pediatrician and a neonatologist. “He must have known,” she smiled as she clapped hands and tickled Nik’s chin. She asked a few questions about his early days and was stunned when we told her that we had spent 209 days in the NICU. She turned to the woman she had been speaking with and remarked, “When you meet parents who have spent a long time in the NICU, you owe them lots of respect; they’ve had an unbelievably hard road and they bear so much.”

I blushed and stammered something, I don’t know what exactly, denying that we were anything special at all —just ordinary parents loving our child. She took my hand and smiled and said, “Oh no, you are a true veteran and he is a lucky little boy to have you.” Then she looked at Nik, now sitting on his Daddy’s shoulders in a vain attempt to curtail a rascally streak he was starting to show. She then smiled at Nik and said, “He looks like he is doing extremely well; he’s come a very long way and I think he will go farther still.”

Indeed. I couldn’t agree with her more.

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You know, it’s funny, all day long I’ve been thinking about this whole “Autism Awareness” storm that’s swept its way through the news media and blogs lately. I’ve been pondering what I think of it and what it all really means in my life. Today, I had some really wonderful thoughts about different kinds of awareness, connections made, and lessons learned as we travel along in our journey with Nik. I’ll share those thoughts with you in another post.

Tonight, I want to shine a light on a very special family —again. I first introduced many of my readers to Rhett and his family not too long ago in this post. The struggle is not over; in fact, it seems to be deepening. Please read this post for more details.

Now, I know that Pam and Andy are incredibly strong and their Faith carries them through so much. But folks, everyone needs love and support in times of trouble and I would say this is one of those times.

Please, reach out and let them know you are still thinking of them, praying for them —especially for Rhett, sending out “good juju” vibes or whatever it might look like for you to lend a helping hand and an open heart.

Because, really, in the end all that matters is that we are aware of one another as human beings; the color of our skin, the politics or religion in our minds and hearts, the diagnoses our children or other loved ones share —none of it matters. It’s the connections we make, the lessons we teach one another about love, compassion, dignity, respect, and hope.

Spread the word.

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

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

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

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

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

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

Nik getting his Rachel fix

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


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

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

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Can someone please explain to me how it is that insurance case managers think they know diddly squat about things like augmentative/alternative communication (AAC or AugComm) devices? Seriously. Now, I’m not talking about the rare one who may actually BE a user of AAC his/herself, or who may have a background in speech and language pathology, or who may, possibly, be a nurse who has worked with individuals who use AAC. No, I’m talking about your run-of-the-mill case manager.

But I’ll get back to her shortly…

When Nik had his AAC evaluation in January, we —the team, which consisted of an AAC specialist who’s been doing this for roughly fifteen or more years, an occupational therapist, Nik’s speech therapist, and me —agreed upon certain points of information and technology; the first, and foremost, being that Nik is still very much in the “pre-emerging” communication stage. He does not yet have a consistent method of communicating his wants and needs; he relies on random use of grunts, claps, joint referencing, and dragging a person toward whatever it is he wants. In some cases, Nik will resort to extreme behavior such as crying, thrashing, hitting his head on the floor —but only in what he might consider dire circumstances. Nik, being the independent spirit that he is, is pretty self-sufficient; if no one is around to get what he wants he either finds an alternate means of getting it himself or he simply changes his mind and moves on to something else.

In some ways Nik’s self-sufficiency is a good thing; in other ways, it works to his detriment. Where everyone —Niksdad and I included —sees it as a wonderful thing that our son is so easy going and happily entertains himself, it has actually kept us from recognizing that Nik doesn’t understand how to communicate. He knows that he wants to communicate and he tries; but his scatter shot method is not terribly effective. As long as someone is constantly with him we can interpret his body language or eye gazes. But when he is left to his own devices, Nik cannot effectively communicate. That is, it goes without saying, something that is vital to get along in the world outside our tiny little home.

Out of the AAC evaluation, we determined that Nik needs to be taught intentional communication; he needs to understand that there is a dance, a give and take which he can initiate and elicit responses which can give him a tremendous amount of power and autonomy. The question Niksdad and I —and even Miss M, his wonderful speech therapist —didn’t know how to answer was How? How do we teach Nik to communicate besides simply modeling it for him? How do we take our highly intelligent and resourceful child and open up a whole new world to him in a way that makes sense and works for him?

While he was in school, Nik’s therapists and teachers diligently tried to use some variant of a picture exchange communication system (PECS) to help him express himself. The problem, or so everyone assumed, was Nik’s visual impairment; no one really knew what he could see with his right eye —we still don’t. When PECS was clearly not successful, they moved on to what I call enhanced PECS; the staff simply added some sort of tactile bits to the picture cards.

I remember the teacher giving me a moderately large wooden letter P which someone had painted with dots of green textured paint. The green was because that seemed to be the color Nik either preferred or could see best (we still don’t’ really know as Nik can now pretty much sort and identify colors of blocks at will), while the textured, bumpy paint was, ostensibly, to assist Nik in realizing that the wooden object in his hand meant something. He was supposed to carry this letter P with him when he was outside the classroom. There was a mate to this letter P on the wall outside the classroom door. In theory, Nik was supposed to be able to match the two letters and know that this was where he was supposed to go. Quite a tall order for a child who still does not know his letters and who, at the time, was unable to match shapes or colors.

Needless to say, the experiment was not a success and they simply gave up. I mean, really, it was somewhat akin to handing a two year old your car keys in the kitchen and expecting them to find their way out to the car, open it up and insert the key in the ignition. The child may know that they are holding keys, and they may have some vague understanding of what a car does (takes them “zoom-zoom” with Mommy or Daddy), but the concept of the relationship between the two is a long way off. The objects are simply that —objects. They are concrete; the child does not yet understand what they represent.

Once I understood that, I finally understood why PECS and the large, green, bumpy letter P didn’t work. Nik was not yet —is not quite yet— at a point where he understands symbols. To him, that large lumpy letter P wasn’t even the letter P. It was just a bumpy shiny thing that felt kind of neat in his mouth. The PECS cards? Perfectly sized, shiny things to tear off a chart and throw as he listened to the rrrriiippp of the Velcro.

This brings us back to the AAC evaluation and the question of how to bridge Nik’s specific communication gap.

I know I’ve said it before that the evaluator was incredible. Truly, this man had near-mystic insights into my child that I thought only Niksdad or I might have. He recognized Nik’s strong connection to music and sound and his need to control things through cause and effect type mechanisms —and then figured out how to put them to work in Nik’s favor. The perfect solution —I thought this at the time when it was still an abstract to me and I think it even more now that it has become a concrete reality —is a programmable switch which can be used to record multiple messages which Nik can then activate by a simple touch.

The actual device is called a Little Step by Step 75. I can set up multiple sequences of things such as getting dressed, getting ready to go out in the car, getting ready for bed, and many others. I simply introduce the button to Nik and have him press it once for the first step in the sequence. “Time to get ready for bed! Let’s get my pajamas.” Then we do that step. He touches the button again “Let’s take off my shoes and socks.” We do it. And so on. Or, I can program every other line of a song we might sing together so he can sing a line and then I sing a line. The idea is to teach him the give and take, the cause and effect of intent. He communicates “X” and then we actually do “X” and so on.

At first it was very haphazard; it took us a while to figure out some set routines and to teach Nik to wait; this isn’t a toy for him to play with. It’s not perfect by any stretch yet, but we are seeing some remarkable progress. Where Nik once wanted to press the button repeatedly and didn’t really pay attention to the words, he now waits and even looks from the button to us as if he knows he’s supposed to push the button before we do the next step in a sequence.

The second part of what we learned from the AAC evaluation is how to help Nik learn to make conscious choices. At the time, his only method of making choices was to simply grab at whichever of two objects we presented. Often, he would grab at the one closest to him and it wasn’t always the one he really wanted. So another device, similar to the Step by Step, was introduced.
The iTalk2 is a nifty two-button device which allows us to record a single message for each button. We can use it for teaching things like “Nik’s turn; Mommy’s turn” or for giving him choices between two toys or objects (shapes, colors, etc.). We record the message for each button and then reinforce it with a photograph of the toy, or the object being offered. Once the choices are made, we can switch the pictures and messages to reinforce the need for Nik to both look and listen as he presses the desired button.

For example, we offer Nik a choice between his “kitty cat piano” and “number train;” whichever button he presses we give him the corresponding object. If he rejects it, we swap the buttons and try again. It’s not yet consistent but Nik is definitely beginning to catch on to the whole choice concept.

Now, let me interject here that these are by no means long term solutions. They are a first step to help Nik make some cognitive connections about how to communicate. Once he’s doing fairly well with these devices we will go back for a follow-up session with the AAC evaluator and look at additional ways to use these devices and/or what is next.

The wonderful thing about the button devices is that they are simple —both in operation and visual presentation. This is critical right now where Nik cannot tolerate a lot of “visual clutter” and does not yet have strong visual scanning skills; when he gets too much visual input, Nik tunes all of it out. I sometimes think this is why Nik doesn’t have a lot of interest in books; they require too much effort for him to be able to discriminate what he sees on the pages. The simpler and cleaner the page, the better he tolerates it —even better if the pictures are actual photographs instead of illustrations.

Another great thing about these particular devices is that they aren’t terribly expensive; if you’ve had any experience with AAC then you can appreciate how expensive even the “entry level” technology can be for certain types of speech generating devices. These two devices cost in the low hundreds versus the thousands. And, because they are deemed medically necessary, state Medicaid regulations mandate that this expense be borne by Nik’s insurance. That’s a blessing for us right now as we are squeaking by while Niksdad is in nursing school and I am not able to work.

Thus, we come full circle to the case manager.

Because I knew there would be a significant processing time for all the paperwork to be completed by the pediatrician and then the authorizations and vendor quotes, etcetera, I arranged to borrow both devices from our state assistive technology group (DATI). Once I finally gathered together all the requisite forms and information, I contacted the vendor to arrange the quote and finalize purchase arrangements.

SCREEEECH…(the sound of the brakes being slammed on!) It seems this vendor, the only one in our region who handles these specific devices, will not do business with our managed care organization (MCO) because they have been burned in previous transactions. Swell.

So, I placed a call to our marginally helpful, marginally less supportive case manager, to find out how to proceed. Her response underwhelmed me.

In spite of the fact that she and I had already discussed these devices, and the fact that no other manufacturer has anything like them, she told me to call another manufacturer to see if they had something like it! It seems Nik’s MCO doesn’t actually have any AAC providers they work with; I’m guessing for the same reason we’ve encountered. They do have a moderate relationship with DynaVox —perhaps because it’s a large enough company to have a national sales team and can cut out the distributors? None of which matters since DynaVox doesn’t have a comparable device!

I contacted the evaluator for some assistance; he’s been doing this so long that he is the go to guy for all things AugComm in our area and knows all the manufacturers and their product lines. He told me that none of the providers he knows want to work with Nik’s MCO. So, here we are caught between a rock and a hard place. I’ve got devices that we are using and seeing actual progress with but I have to return them on April 14th. I’ve got a vendor that has the devices we need and an MCO that has, essentially, tossed the whole mess back into my lap to solve.

Oh, and the case manager took it upon herself to call DynaVox* and thinks she has found a device which would “work well for Nik” and she’s getting a quote and working on authorizations. Wow. And to think I wasted all that time going to the most highly respected specialist in the state for an evaluation and recommendation? Who knew I could simply call the MCO case manager —because she obviously knows so much about AAC and thinks that this is at all similar to this and this. And the whole inability to understand symbols and visual scanning for choices, etc? Obviously not a problem in her mind.

I wonder if she does open heart surgery, too. Or prescribes eyeglasses and seizure meds.

* I also called DynaVox and spoke with a very helpful sales person. When I described where we are in the process of teaching Nik how to communicate, she agreed that the device they have for “emerging communicators” was probably a bit advanced for Nik right now. She did offer to have the regional sales rep come to our home and show us the device so we could be absolutely certain; we may do that just so we have crossed the T’s and dotted the I’s.

Sigh. Another waste of our already limited time…

Stay tuned as the saga continues.

ETA: Thank you for some of the comments specifically about some steps to take. In my haste to post this, I neglected to note that I have spoken with the Executive Director of DATI (which is also the key assistive technology advocacy organization in our state). She has already begun a dialogue with the top people at Medicaid — the ones responsible for selecting the MCO’s and determining policy, etc. They are working to resolve our specific problem as of Friday. In the longer term, they are looking into whether this is a more systemic issue and how to resolve it for all their stakeholders. I suspect it is systemic and needs to be addressed.

We have also been advised that we should not purchase the devices ourselves because that starts us on a slippery slope which may bite us in the rear later. I anticipate that we will go through several iterations of AAC devices for Nik before we are through, so getting this resolved quickly is a top priority.

I’ll keep you all posted on the progress.

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I’m still stewing on my thoughts and reaction to Autism: The Musical and hope to share them with you soon. Meanwhile, here’s a rambling update on life in Nik’s house lately…

I am thrilled to report that the duct tape experiment has been a rousing success! Not only has Nik not tried to wiggle his way out of the tape (and, therefore, his pajamas), he’s become quite enamored of the process! I can’t help but wonder if the slight snugness of the tape around his upper torso provides some proprioceptive input that is comforting to him. By the third day of taping him into his pajamas, Nik began to willingly put his hands up in the air to assist in the process! It’s really very cute to watch.

I won’t question the whys and wherefores; I will simply say that my washing machine no longer feels abused on a daily basis!

Of course, to every yin there is a yang, to every up a down. Though we’ve managed to quell the Houdini and Poocasso behavior, there has been an increase once again in Nik’s mysterious pain episodes which seem to strike without warning. There have been nights when the only thing I could do was hold Nik in my arms in the aftermath of some pretty horrific head-banging, face-punching, writhing episodes. One night, through his tears, Nik started to hum his favorite song from Mary Poppins; the poor dear was trying to soothe himself and asking me to help!

Niksdad and I are absolutely certain it is not seizure activity; we see the neurologist this Friday and will discuss other possibilities to explore. I still think it has something to do with some type of cluster headache or other vascular activity. Nik gets this odd swelling of the area over his right mastoid process —almost as if his skull is swelling but it isn’t. Mastoiditis has been ruled out —the symptoms are too erratic and they just don’t quite seem to fit —though no CT scan or x-ray has been done to definitively eliminate the possibility. Niksdad and I wonder if it could have something to do with his lymphatic system as he’s been getting so many infections, too.

The search for signs of intelligent medical life to aid us in solving the mystery continues…

In spite of the ups and downs of these sudden pain attacks, Nik is thriving. Each day brings some new and highly amusing thing. Lately, it has been an impressive display of his age-appropriate evasive tactics when it is time to get in his chair for a meal (and at bed time, too). Well, that and some highly impressive (and rather unorthodox) motor planning and following instructions. See for yourself in the video below. (Sorry, it’s kind of long but I cannot edit QuickTime videos in Windows.)

Now, please bear in mind that this is the same child who just started walking last August, at the age of 3 and three-quarters years. The same child who is considered legally blind in one eye. The same child who was once labeled as having diminished mental capacity. When I look at this video, I marvel at the progress Nik has made and I am reminded of the miracles that can happen with love, determination, and faith.

There are some things no one can ever know or predict; parents who simply swallow whole the dire pronouncements of doctors about the future of their children are, in my opinion, only serving to ensure that bleak future comes to pass.

In a related vein, there’s lots of advocacy-related stress going on behind the scenes here the past week or two; continuing to negotiate with Medicaid to provide coverage for Nik’s therapies —as well as pushing for an increase to help boost some emerging skills and develop some critical new ones, finding the right medical avenues to explore for answers to the mysterious episodic pain, and —as of Monday —a struggle to get Nik’s communication devices. It feels like we’ve gone from cruise control on the open road to stop and go traffic in rush hour —say on I-5 or the beltway! Days which once seemed wonderfully smooth and easy are suddenly filled with mountains of paper work, follow up phone calls, more paper work, more phone calls, and efforts to keep my cool in the face of idiotic bureaucracy. But I’ll save that for another post —one which may require a bit of a preface.

There’s more good stuff going on…but I’m going to have to write that in yet another post. LOTS to catch up on…

ETA: Oops, thanks Kristen for asking “How you doin’?”* I forgot to mention that my fall down the stairs last week seems to have left me none the worse for wear. I’m pretty much back to my old self —wrist and all.

(*For some more really amusing Joey-isms, click here.)

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“God writes a lot of comedy…
the trouble is, he’s stuck with so many bad actors
who don’t know how to play funny.”

~ Garrison Keillor

Because pictures really do say it so much better sometimes…

Here is our solution to this problem:

Needless to say, it is not popular with Nik. He fought like a wild cat the first night. He seems to have accepted it pretty quickly, though. Of course, the thing that worries us most about his apparent acquiescence —after one night of relentless thrashing and hitting his head on the crib until his ear looked like this?

Wondering how long it will be before he’s figured out how to get out of this one!

You know it’s coming, right?

Okay, you can stop laughing now. No, really. Stop it.

Now, for all of you who may have been thinking something a bit more risque was coming…I’ll direct you to this post by Kate. *

*WARNING* — Do not take bite of food or sip of any liquids while reading this post.

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Nik’s fever spiked around seven this morning to 103.8F and he was cranky and beyond lethargic. In fact, he went back to sleep after a very quick snack (via tube, mostly to make sure he got his seizure meds on time) and slept straight through until Niksdad got him to the pediatrician at ten-thirty.

The verdict?

Another ear infection. This one seems to be different; he’s never had a fever like this unless he’s been really ill. It may have something to do with the fact that he also had his g-tube changed yesterday afternoon; always a traumatic experience for Nik, this time was worse because of a large buildup of granulation tissue inside his stomach. (Imagine that scene in Alien…and you might have an idea of what that tube change felt like for Nik.) Again, not a typical reaction for Nik when his tube gets changed, either. But he was pretty sore and his body may have mounted an inflammatory response (which can include fever) to both the tummy trauma and his ear infection. Whatever —it wasn’t fun in the early morning hours today.

So here we are on his third antibiotic in roughly a month after rapidly eliminating the ones he can still tolerate with “normal” or expected side effects (those which don’t involve rashes, open sores, or vomiting). Oy.

But the Tylenol and several hours of sleep seem to be helping a bit. Nik’s fever is down under 101F and he is quietly playing for the first time all day.

Here’s what that looks like:

Can you say “Who drained the Energizer Bunny’s batteries??” I imagine he will be back to his rascally self in a day or two.

Meanwhile? I’ve got a post cooking on some creative uses for duct tape. I kid you not!


For an update on Rhett and the rest of the Bird Flock go here.

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Not exactly a good Friday so far…

But we’re still sending our love and prayers to Rhett and his family.

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God Bless the Cavalry!

Situation handled with tears and screaming —Nik’s not ours— as we had to rip him from the embrace of peaceful slumber to put him into the shower. I know, I know; it broke my heart but it was necessary.

Because of Nik’s g-tube (which involves an actual hole in his abdominal wall), the risk of anything getting into his abdominal cavity is enough that, well, it’s just one we can’t take.

Nik voiced his opinion after the shower with a very loud raspberry and proceeded to play in his clean crib for forty-five minutes. The rest of the night was spent in peaceful slumber for all.

Nik is beginning to wake up; I can hear his sleeping singing through the monitor. The sun is shining and a bright new day awaits.

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