Dino Love

"Two therapods and a tyrannosaurus rex, Mommy!"  Nathaniel can identify a dozen dinosaurs without thinking.  It's really quite amazing.  When we went to the zoo, I made sure to get tickets t the animatronic dinosaur exhibit.  Natty was scared at first - the loud, sudden calls from speakers, one dinosaur actively eating another dead one, and a spitting dinosaur, it was all a little terrifying.  We left the exhibit and he looked at me and said, "Let's go again, Mommy!"  So we did.  And on that trip around the exhibit, no fear, just calm discussion, repeating the things I'd explained as we'd made our first visit.  "Look, Mommy, he's a carnivore so he has to eat meat, so he waits until one dies because he was too sick and couldn't see a doctor and then he eats ..." and "They're in a group, Mommy.  They're friends walking together on the playground!"  Nathaniel adored that visit.

Amiss

I have been amiss.  Gone.  Hasta luego.

It's not that I don't like to write - I do - I've just been a teensy bit busy and had forgotten I had a blog.  Of course.

So, let's see.  Nathaniel just celebrated his 4th birthday.  He's so happy to be 4.  His latest accomplishments are pretty neat. 

First, he adores trains still, but now with a look at the real ones.  We chased a train all over our town the other night.  It went by the power plant, so we went to head it off.  It stopped before it got to us and we watched as the brakeman released the derailleur and switched the track so it could go into a siding.  Then it started backwards into the power plant siding.  So off we went to the power plant and watched gleefully as the 2-locomotive train took 4 cars into the plant, down a siding we'd never seen anything go down before and into the bowels of the power plant.  Less than 15 minutes later, here came the engines again, this time sans cars.  It was awesome!  A couple waves by the engineer and brakeman, another switching of the derailleur and siding, then the train went back to the yard, with us bebopping through town, chasing it down again and again.  On the last street, I was telling Nathaniel we REALLY needed gas, that I was going to run out, that we couldn't put it off anymore.  And then as we watched the engines hitch up to a long line of cars, he yelled from the backseat "Mommy!  Get some gas at that station!  They're coupling up!"  Yeah, he still likes trains ...

Next, Nathaniel is a water fiend.  We go to a park that has this awesome little train.  In addition, it has a sandbox with a cemented rock top that has a water pipe in it.  You push a button and out oozes water.  Well, the Natster loves it.  Sits in the lake the water creates at the bottom.  Sits straight down.  I have to press the button a hundred times during our trips to the park, just to keep it all running.  Well, we live in beach country. We go to the beach and he has no fear.  He adores the ocean, runs straight for it.  (In truth, this disturbs me a great deal, that he has no healthy caution for the danger it can pose.)  We jump the waves.  His laughter is pure girly scream, pure delight, pure joy.  He loves to sink his feet in the sand.  He loves the crashing.  The only thing Nathaniel is not delighted with is swallowing salt water -- he upchucks immediately and continues to spit and slobber for half an hour, determined to get that yuck out of his mouth.  Last beach trip, a man was rising out of concern and I waved him back down - yeah, I got this.  I doubt the man could ever have understood that Natty just has these schticks and tasting salt water is one of them.  You see, Natty has a lot of diagnoses - apraxia (the oral motor disorder), sensory processing disorder, anxiety disorder, feeding disorder, and eosinophilic esophagitis - and not liking a particular taste would come under one, upchucking because he swallowed it would come with another, and spitting and drooling would come with a third ... so I daresay, he earned the right to upchuck, spit, and drool quite nicely.  When he was done with this demonstration of distaste, a second passed, and he looked at me and said, "Mommy, let's go jump the waves some more!"  Oh yes, my sunshine, let's do!

Next, let's talk sheer smarts.  We've been doing a lot of smarty pants rhyming lately.  There are these words he's learned at school that the other kids say.  They are forbidden at school, termed "bathroom talk" and represent the various body parts or bodily functions.  Well, Natty knows them of course.  And walks the line.  It is SOOOOOO frustrating on one hand, but also SOOOOOO peacock-in-full-spread-ish of him.  Instead of saying "poopy" (which assuredly IS bathroom talk), he says "pooty" or "tooty" but never "booty" ... I am serious!  He has internalized the words which are not allowed and learned that we can't get him on the rhyming words!  Ugh!  So this morning, when he was again going down the forbidden-but-not path and I wasn't in the mood, I talked to him about synonyms.  He knows that locomotive and engine mean the same thing.  As do lawn/grass, happy/glad, angry/sad, automobile/car, tractor trailer/truck, etc.  He's thinking about it now ... and I hope this is a distracting task for him.  Because, yes, I got it, he learned how to rhyme, while also how to drive his mommy nuts!

Now let's talk growth.  As you might have noticed from the above list of diagnoses, Nathaniel is no longer diagnosed with Failure to Thrive.  Whoo hoo!  It's been a journey, it has.  It all began last year when we started at Duke with the neurologist, who found no neurological reason for the speech regressions.  Well, we had a followup appointment where she discovered Nathaniel had not grown in the 3 months since she'd last seen him.  Worse, his head circumference did not grow.  I was very worried because he wasn't eating well and I was ... how to put this delicately? ... FREAKING.OUT.  She referred us to the GI there at Duke and we got in to see the head of pediatric gastroenterology on her referral.  Well, he listened to my description and scheduled us for an endoscopy, on the slight chance he might have a rare disease.  Yeah, you guessed it.  Eosinophilic esophagitis.  Causes food refusal.  Incurable but treatable, thank goodness.  Basically asthma of the esophagus.  Natty's disease is at the cellular level, instigated by invisible non IgE mediated food allergies, which basically means we may never know WHAT he's allergic to.  (long story)  Well, because of this GI, I met the nutritionist, and because it was Duke, where all the tough cases go, well, she SPOKE MY LANGUAGE!  It was like coming home!  She got the oral sensitivities, the way he rejects things because they don't taste right, how hard it was to get him to drink his Pediasure or eat, everything!  She spent about 20 minutes troubleshooting the issues with me, giving suggestions, and I walked out with a shopping list - Pediasure 1.5, Duocal, and periactin.  Periactin was a distinct hit, increasing his appetite markedly.  The Pediasure 1.5 had been a bust, but she taught me how to wean Nathaniel onto it by mixing it a little bit more each day into his regular Pediasure.  And Duocal adds calories but no change in thickness, so we were a go.  It was awesome.  Less than 4 months later, we had kicked FTT to the curb!  Whoo hoo!  And since then, holy cow!  He is a GROWING machine!  He went from below the weight chart to 50th percentile in 1 year!  He went from 10th percentile height to just 25th but we're making gains there too ... and the head.  My little bobblehead's head is still growing.  I don't size up his shirts based on his height - nah, I do it based on his head circumference getting through the danged hole!  We were in 24 m pants in December and now, 3T.  He's chunky, maybe even getting pudgy around his middle, having some real girth to him, which he has never had before.  It's awesome.  Nathaniel's feet are serious boats ... they grew 1 size in 3 months, which is twice as fast as a normal kid.  Yeah, he's growing.  While he's still not up to par on the eating scene, he can suck that Pediasure down like a champ.  Love it.  Love that I am no longer worried about calories, etc.  Yay!

OK, the time is late and I have an early morning.  Sometime soon, I hope to return to tell you more about my little wonder.  Happy evening!

Such a Slacker

I've been so slack.

My last post was back in April, over 9 months ago. And since then, wow, my life has changed markedly. Beyond markedly. And Natty came along for the ride.

I'd known for a while I wasn't enjoying being a professor. You see, when you have a child arrive so early, you worry. You worry when you are supposed to be doing research, writing articles. You worry about the child incessantly (and it doesn't help matters that the worry is founded). But the tenure clock ticks continuously, early deliveries and all. It doesn't matter that your child is hospitalized, it's called publish or perish for a reason. Well, I was not producing. Anyone can see why. Moot point. So there was a proverbial Damocles sword swinging over my head. I knew it would arrive May 2012 with a "not asked back" ending. And besides, the professor life wasn't for me, anymore, although I am not sure it ever was. I missed the classroom.

So in April, when my folks came up for a visit, I told them. We loaded their truck and a UHaul trailer with some of my unneeded possessions. My game plan was to move this past or next summer, to a known job. Wel, the game plan worked. I applied in May, was interviewed in July, and began in August, a mere 2 weeks notice between offer and beginning.

And it was hell. Still is. The moving part. I hate to move. We are living in a rental house in a very depressed part of NC. There is one outlet per room. Extension cords snake across rooms. The heating bill is $400+ per month, insane. And right now, there is a draft past my fingertips as I type. But the house was reasonably safe and has definite charm. It has a gardener's delight of a yard (but I am too busy I can't enjoy that old pasttime).

And Natty is with the loves of his life, Grandma and Grandaddy, on a regular basis. He ADORES them. Adore is probably too passive. Mad crazy love. And they adore him too.

This move was made for a lot of good reasons. Professionally, it was a step up. Personally, goodness, I needed it. I needed to teach children again, to work with practicing teachers in the minutiae of pedagogy. But I also needed what it brought me - the support of my parents.

You see, Natty has been diagnosed with apraxia. Apraxia is a motor-planning disorder which prevents him from talking. All the worry over speech? Well-founded, it now appears. All the worry over feeding? Connected. Failure to Thrive, yep, it's there too. All of it, all the way back to the NICU. The Duke speech evaluator thinks it may be global motor-planning dysfunction. We're getting that part checked out. But I needed to be here ... my parents have been wonderful. They GET it. SOMEONE else gets it! I'm not alone anymore, fighting against smoke and mirrors, having doctors and therapists look at me as if I am crazy. No one is saying all this stuff is behavioral. No, it is mechanical, medical. And now people are starting to figure it out. And my parents are being the wonderful, caring, loving people they always have been ... and they prop me up when I am ready to fall.

I love my job now. It is intense but I adore it. But you know, I adore my son so much more. Natty is a wonderful, crazy, amazing little boy --- despite this issue. He is so happy. He loves to roughhouse, to play, to read his books, to flirt. And I get to be there with him while he does it all.

I promise to be less of a slacker from now on. And I will tell other pieces to the story at some point. But right now, I am exhausted and need some sleep. Have a good one!

Worried Mama - ER Visit

My son developed his 3rd MRSA infection two Thursdays ago. At first, it was a pimple on his leg. The next day, a little bit larger of a pimple, but not very worrisome. I knew what it was (Natty has been colonized with MRSA since October 2009 and this was his 3rd infection in 3 months) but with it not growing terribly larger terribly quickly, like it always does, I was entertaining the notion that his immune system was fighting it. Should have known better. Saturday morning, nickel-sized abscess beneath his skin. In we went to the doctor. And got meds. Bactrim. Good old Bactrim. So I was a diligent mother and gave him his doses. Sunday night, during his bath, it looked ugly. As I peered at the leg, I saw these rose-colored streaks leaving the abscess and aiming towards the groin. Oh no. OK, instead of dressing Natty in his PJs, I put him in an outfit, slapped on his shoes, and carted Boy Wonder to the Emergency Room, already writing that $70 copay check because I knew it was pretty important to get the thing lanced. The doctor didn't think so. Nope, not ready to lance. But he wanted him admitted for IV Vancomycin, because it was spreading to his lymph nodes, ready to become septic. And so Natty was admitted. At 4:30 am, I was up, giving the admiting nurse my son's health history as he dozed in his private isolation room. (Because MRSA is so virulent people have to gown and glove to keep themselves safe. And he gets that private room as long as he's colonized.) Well, then next 2 days were a wonder. And on Wednesday we were sent home again. Bactrim for another 10 days. I have such fun in life, I'm telling you. At least the abscess is getting smaller. Thanks goodness for that.

Is He Thriving?

A work friend asked me this very question one day. And I had to say No. He's doing well, he's a great kid, but Natty is not "thriving." Paul looked downcast and said that since he hadn't heard differently, he just assumed my son was doing well. My son was diagnosed with Failure to Thrive in September. It had been going on, though, since May. You see, in April, Natty began daycare. And because preemies have weak immune systems (long story), Natty got every cold the other children had or carried. 18 colds in 6 months. 8 ear infections. 5 croup attacks. 1 sinus infection. And 8 teeth came in. It got so bad, Natty reverted from sleeping through the night to awaking up to 9 times a night. Babies with ear infections drop their feeds. I watched as the amounts my son drank plumetted. His pediatrician was not concerned since he was starting solid foods. But I had the feeding therapist out to check him out in August. She said he was behind in his bite, by 3 months, so he was 3 months behind on eating solid foods. Solid foods were difficult. I am kind of thankful I was so sleep-deprived then that I don't remember how hard it really was. And the FTT in September. Finally, a doctor who UNDERSTOOD! The doctor put my son back on reflux medication and prescribed Pediasure, 4 cans a day, instead of formula. Wow. A way to fight this! Natty slowly gained weight. In February, we finally met with the feeding specialist at the feeding clinic. Yes, my son had feeding problems. Here is what we were going to do about it ... and a plan was set into motion. Natty has made incredible progress. He is growing. His growth curve is almost what it was prior to the ear infections but isn't quite what it was while he was in the NICU. He's eating. So what if he eats way less than a comparably aged or sized child? He's EATING! And he is still tanking down the Pediasure. But don't ask if he is thriving. You see, I speak to the question. And Failure to Thrive definitely says he is not thriving. Progress is slow but we'll get there. Someday. And when that happens, Paul, you'll know.

Last Minute Queen

This evening, I picked my son up at daycare, turned on his DVD movie, and took him with me back to school. I needed to send in my flexible spending account receipts. And they were due. Today. By midnight. Mind you, we were there until 9:54 faxing them in. I am such a bad mother. I kept him up past his 8:00 bedtime. 8:00 is more my time than his. He never goes to sleep prior to 8:30 anymore. Last night, he finally collapsed at 9:15. So I felt a little justified in keeping Natty out and about with me that late. Maybe tonight he'll sleep through the night. Yeah and pigs fly. Pretty pigs. Nice wings.

Ages and Stages Questionnaires

I have a love/hate relationship with milestones. When I took my son in for his first well baby check (just out of the NICU), he was a month adjusted but 4 months old. So the nurse, clueless wonder that she is, asked me if he was achieving all of these 4 month old skills. Uh, no. Preemie parents have it so hard. We have just been through this harrowing shock of early delivery of our children, literally willed them into good health and increasing weight, taken them home on a wing and a prayer, and the nurses ask about chrono age milestones? It's VERY discouraging. (Note to any pediatricians out there - change this practice. Yesterday.) When Early Intervention came for his first evaluation, he was significantly behind, at two months adjusted age, for gross motor activity. Significant enough to get PT twice a week. Well, we have been through many more EI evaluations and equally as many well baby checks and those damned milestones keep haunting me. I can look them up in the baby books. You know the part - What your baby MIGHT be doing, What your baby PROBABLY is doing, etc. Even when I used adjusted age, we missed so many of those milestones. After the 3rd well baby check, I delivered my famous (to me) line to the nurse. We went over the 9 month milestones with all "no" answers and I said, "Now, for me to feel a little bit better about things, can you ask me the 6 month milestones? Because we might have achieved SOME of those by now!" And she did. And I felt a little bit better. Well, my state has this research project going on. They are following a sample of children longitudinally, looking at development, etc. I completed the first two sets of forms but at the 12 month adjusted form, I quit. It was too much. I didn't send it it, even with repeated reminders from the researchers. You see, their forms say to do X age (in that case, 12 months) but I operate on adusted age ... and yet they send the forms at the adjusted age time period. So I get SO confused between the chrono age, the adjusted age and when all the things he's dealing with actually developed. And then there's the problem of me not wanting to feel down. I KNOW he's behind. I don't need a bunch of researchers to interpret that for me - you would be too if you spent the 1st 4 months of your life in a hospital bed. We're working on it but I just don't want to feel down. I have a lot on me on a daily basis and prefer positivity over negativity. And a long list of Ages and Stages that Natty is not meeting just is not productive to my confidence. Well, the researchers called last week. They caught me at a weak moment. Could I please fill out the 18 month forms they sent? Hell. OK. So I sat down last night and completed most of it. Not good. Some things (particularly language) are so markedly delayed ... but they don't ask the important things, like how bad were his ears before the tubes? If they knew he spent 6 months with fluid constantly in his ears, they might understand. They might get it. But no, it's just a survey and he failed miserably. Again. A parent of a normal child told me I obsess too much over milestones. Well, I daresay you would too with these experiences. If YOUR child always had a "no" behind half his milestones, you too would read ahead to start thinking about how you could improve matters. You'd target those very specific things ... and try. You would. I KNOW you would! So if I abhor milestones, you can see why. And if I pay a little too much attention to what he should be doing, you can understand that as well. The good side to it all is Early Intervention. They assess him (and he does poorly there too, always qualifying for more services) but it's people there. People who say the right things, like "Poor baby, of course you can't sit. You've had so many ear infections, I'll bet you have fluid in those ears. And it screws up your balance, doesn't it?" And then "He has such pretty eyes." They know how to talk to me, how to make me feel a tiny bit better for the missed milestones.