Archive for the ‘follow-up’ Category

Apparently, I am not the only one in my family with issues of  letting go.  (I feel compelled to add, for the sake of clarity, that my issues are not akin to Nik’s!)

We saw Nik’s beloved Doctor Mary this afternoon.  It’s true, she is beloved; she is the only doctor Nik will ever fully —and joyfully— cooperate with no matter how awful he may be feeling.  He adores her and makes her laugh; it’s a win-win social skills situation all the way around. 

But I digress.

The results from the lab cultures will not be ready for a few more days; apparently the specific cultures Doctor Mary requested can take up to five days.  But we don’t think Nik has an infection, really; the severity of symptoms ebbs and flows —from severe to nearly nonexistent— in the course of any given day.  There is, thus far, always a slight lull after Nik’s had a couple of really awful days full of explosive diarrhea.  (What?? TMI?  Try living with him for a while!)

The abdominal x-ray —which I must say Nik was an absolute champ for— showed no structural concerns but did show a significant amount of stool in the large bowel.  At first blush, it appears that he is developing a bad case of  constipation —bordering on a partial obstruction.

I won’t go into graphic detail about what leads Doctor Mary to this conclusion.  Imagine your kitchen drain being partially clogged; it still works, just a little slower.  When it gets really bad, you have to, erm, help it along.  Same thing with Nik.  Of course, this doesn’t address the underlying cause of the situation; one thing at a time.

So, if I disappear over the next couple of days, though I hope not to, you’ll know it’s simply because things have gotten —as the good doctor put it— “worse before getting better.”  If that doesn’t do the trick, we’ll revisit the issue with Doctor Mary at the end of the week.  She may want another x-ray to see just how bad things look.

Fingers crossed that it all, ahem, comes out okay.


Read Full Post »

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

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

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

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

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

Until today.

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

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

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

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

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

“Avalanche” by Matthew Good

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

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

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

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

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

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

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

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

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

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


Read Full Post »

Life isn’t about waiting for the storm to end;
It’s about learning to dance in the rain.

Jennifer over at Pinwheels commented by email on my last post (the fun video post, not the pathetic self-indulgent post) that “it’s just as it should be…sunlight always comes after the storm.” So why do I constantly feel like I am searching for the rainbows and somehow missing them? I mean, it rains then it shines and it rains again. Then the sun peeks out and the clouds roll in and …crazy emotional weather in my world these days!

Long story short, the “affliction” I mentioned before continues to rear its ugly head. Nik’s fever continues; he woke with a temp of 100.5 at 4:45 this morning. And today it was the fabulous Miss D (our favorite OT) who was treated to Nik’s frightening manifestation of mysterious pain. One moment he was playing happily with a shape sorter, the next minute he was screaming and writhing on the floor in abject distress. NOT behavioral.

This happened a few times toward the end of our session and right before our weekly playgroup. While Miss D and Miss T set up for the group, Nik played independently for a bit, happily pulling balls from the ball pit and tossing them. He’d toddle off to chase the balls and the return them to the pit, laughing hysterically the whole time.

Except for the time he tripped and slammed face first to the floor.

Needless to say, the morning was no longer much fun for either of us. My poor battered baby sobbed and wailed in my arms, bleeding from his mouth. My throat felt like a boa constrictor’s prey as I fought back my own tears and tried to calm Nik enough to verify that his teeth were in tact. Thank God for small mercies. He does, however, have bruises from his chin all the way up the center of his face to the bridge of his nose. They are a nice complement to the ones on each side of his forehead from banging his head against the sides of the crib each night.

You know it’s bad when you have the pediatrician on speed dial on your cell phone. Off we went for the fourth visit in as many weeks. The prize for using our frequent visitor points? More antibiotics for the dual ear infections, the second round in a month. Sigh…

Well, at least it explains the nocturnal waking, the low-grade fever that wouldn’t quit, and the screaming head-banging…for now. Until we see the ENT tomorrow and are told “No, he doesn’t have an infection; those pediatricians always jump the gun.” I kid you not, we’ve been told that before. But the good news is that the immunologist moved Nik’s appointment up to this Friday and has ordered some blood work. Well, the appointment is good. Bloodwork? Not so much.

And yet, through it all we keep finding the tiny pockets of joy (like Susan mentions here) and savor them like forbidden sweets filched from Grandma’s candy dish when the adults weren’t looking. They are all the richer for their hard-earned and unexpected sweetness.

And, truth, in poetic irony…it has indeed started to rain tonight. The thunder is booming in the distance and the rain has just started to pelt down on the skylights. (I love a good storm!)

Perhaps tomorrow will bring the rainbow after all.

Read Full Post »

If you haven’t read about our IEP experience, I suggest you start HERE first so the rest of this makes sense.

Some comments on my IEP post brought to light a critical irony which I forgot to include in the post:

I INVITED BOBO! (Shaking head in disbelief and shame…)

I had suggested he be invited b/c Nik was not going into the autism program but has definite behavioral components which needed to be part of his IEP. Logic told me that the district psych, the one who would be helping to put those things in place, might be a good person to include. HOW COULD I HAVE BEEN SO WRONG!?

As far as the rest goes, we had actually asked for copies of all the evals and materials in advance so we would go in with an idea of what school was proposing and be prepared with questions, arguments, what have you. I only got anything from the PT. Since the meeting ran so long, our advocate had to leave to take care of her own child. When we asked for the weekend to think on things and “digest” Bobo struck again. When we asked for copies we were told “oh, well it’s all in rough, draft form. We’ll get a copy to you as soon as possible.” Had I not been so shell shocked from the gross rudeness of Bobo, I would have said, “That’s fine. I’ll wait while you make photo copies.” Duh…but I felt like the deer caught in the headlights of an oncoming semi (truck).

So, in the harsh light of day brought on by ingesting reasonable amounts of ice cream (wink), Niksdad and I have come to some clarity about a few things. First, we will keep Nik in school for one more week. Why? Because we need to get copies of all those documents (even if they are handwritten) so we have something for legal records. Second, we need to get some very important information from the school OT –the results of Nik’s sensory evaluation and her recommendations for specific activities. (Though, I suppose, we could simply get another outside eval done through the hospital.) And finally, we do not want to cause an irreparable rift between us and the school district…we may need them one day.

Sometimes you’ve gotta think with your head not your heart…and it’s hard to do.

Hopefully, we will also get a letter of support (“medical necessity”) from our pediatrician which will eliminate the need for any struggles with the insurance over Nik’s services. Even without it, we will still be able to get services; I will simply have to request home nursing care (which we are eligible for since Nik has a feeding tube and seizures). Our advocate tells me “Watch how fast they jump to authorize his outside therapies! It’s waaay cheaper than providing a nurse!” Hmmm, who knew?!

We have decided that we are going to file a procedural complaint with the DOE. There are too many things which were mishandled for us to simply turn a blind eye because we are leaving. It won’t cost us anything to write a letter and it may help another family who’s been intimidated by Bobo or others of his ilk.

We haven’t yet contacted a lawyer but I imagine we will at some point in the near future. Sigh…
It shouldn’t have to be this hard just to be able to give your child a “normal” experience before he’s required to go through the educational mill.

Read Full Post »