Offline for a while

We are renting out our old house since we can't sell it in this God-help-us economy. Therefore I will be offline for a few days while I sort out the stuff we left there and ready everything to be moved to a storage unit.

I'll be back next week!

It's always something

Thomas currently has a persistent, low-grade fever. This fever has been especially fond of him and has stuck around for 3 solid weeks. 2 weeks ago, a mere 7 days after the fever started, I took him to our pediatrician. Let me first remind you just how much Thomas hates going to the doctor. The poor kid has seen WAY too many of them in his short lifetime and it takes only the sight of a stethoscope to set him off like a car alarm.

-- AAAAH!!! AAAAHH!!! AAAAHHHHH!! AAAAAHHHH!!!!!!--

That's actually what he sounds like - and he is almost as difficult to silence.

Our pediatrician pronounced him fit, except for a virus that's been going around causing a fever and no other symptoms. Motrin and Tylenol, the Wondertwins, would take care of it. Bring him back in 10 days if he isn't better.

10 days later he isn't better and we are at my parents house. Naturally.

Off to the clinic at the hospital. This is where it gets, eh, interesting. The doctor here walks in the exam room where we are waiting. Thomas starts screaming like I'm amputating his arm without anesthesia. The doc and I proceed to have a conversation over the shrieking.

"So, any symptoms other than the fever?"

-- AAAAH!!! AAAAHH!!! AAAAHHHHH!! AAAAAHHHH!!!!!!--

"No, he seems to be fine other than that. But it's been 12 days now and-"

--AAAHHHHH!!! AAAAAAHHHH!!! AAAAAHHHHH!!! AAAHHHHH!!!--

"-he is still feverish. No coughing, nothing else-

--AAAAHHHHH!!! AAAAAHHHHH!!! AAAAAHHH!!! AAHHHH!!--

The doc checks his ears, listens to his heart and his chest - and how he could possibly have heard anything I'll never know - and orders a chest x-ray. Heh. This is really taking longer than I thought.

We step into the radiology lab and I lay Thomas on the table and they--

--AAAHHHH!! AAAAHHH!!! AAHHHHH!!!! AAHHHH!!!--

-get two pictures of his chest. We go back to the exam room.

45 minutes later Thomas is calm and happy because we've been left alone by all medical personnel since the x-ray. I'm pretty seriously irritated at this point. I spy the roll-y stool that all exam rooms have, sit down on it and put Thomas on my lap and we head out into the hallway to count things. Thomas loves counting things. We spend a couple of minutes rolling up and down the hallway counting the light fixtures when Hey! Whaddaya know! Our nurse goes to find our doctor!

5 minutes later our doctor announces his chest is clear and here are some antibiotics. Come back if he's not better in a couple of days. Ha. That rolling down the hallway counting things is good for getting the attention of people not otherwise paying attention.

Unfortunately, the antibiotics didn't work. Back to the Clinic.

Today's doc orders a CBC and urinalysis. ARGH. An army of nurses comes in to draw blood and-

--AAAHHH!!! AAAAHHH!! AAAHHH!!! AAAHHHH!!!--

-after sticking both of Thomas's little arms they get a vial of blood to take to the lab. Another nurse comes in-

--AAAAHHH!! AAAAAHHHH!!! AAAHHHH!! AAAAAHHHHHH!!!--


-and tapes a little bag over his, erm, privates to collect some pee. Seriously.

45 minutes later yet ANOTHER nurse comes in to get MORE blood because the first batch clotted.

--AAAAHHH!! AAAAAHHHH!!! AAAHHHH!! AAAAAHHHHHH!!!--

She checks the baggie - the kid's on pee strike.

The doctor shows up and-

--AAAAHHH!! AAAAAHHHH!!! AAAHHHH!! AAAAAHHHHHH!!!--

-brings me a power bar and a Diet Coke. I love him.

30 minutes later and still no pee. I'm getting a little desperate at this point because I really just want to take. Thomas. home.

The CBC comes back and the doc comes in to tell me-

--AAAAHHH!! AAAAAHHHH!!! AAAHHHH!! AAAAAHHHHHH!!!--

-that Thomas has a virus. Motrin and Tylenol should help the fever, otherwise there's nothing they can do. He cancels the urinalysis, which is convenient since the kid STILL HASN'T PEED.

We are home now and Thomas will start psychotherapy tomorrow for the emotional damage inflicted by medical personnel this past week.

Phone Pic of the Day

Yesterday I ventured to the grocery store here in the town where my parents live, a town firmly seated in the buckle of the Bible Belt, and as I walk back to my car in the parking lot I see this:





And I think "Heh. Tattletale."

PPOTD

Yesterday my parents, the kids and I traveled to a family reunion that my mom's cousins hold each year. There were stories, wonderful food, small children running everywhere, more food... There were relatives from Texas that we didn't know, and weren't sure if we are actually related to, and the uncomfortable political discussions that arise when you have several generations in close quarters.

On the way home Emmie was TIRED OF BEING IN THE CAR and more than a little fractious. I started pulling stuff out of my mom's glovebox hoping to find something to entertain Em long enough to get us home. I found these:



She was totally thrilled and I think the old lady on the Hallmark cards has some competition now.

PPOTD

We are traveling to my parents' house today. They live on Lake Hartwell in South Carolina - a fantastic spot - but it's a looong way from where we live. On travel days we pack up the car with all the stuff that the kids will need - sleeping bags, food, 2 suitcases of clothes and swimwear, toys, stroller, portable high chair, diapers, wipes, lovies - and the stuff we'll need - 1 suitcase - and start out. And174 hours and 14 stops to change diapers and feed babies and use the bathroom and I CAN'T TAKE THE SCREAMING ANYMORE GET ME OUT OF THIS CAR breaks later, we pass this:




And I know we only have 90 minutes more to drive. It's a water tower and it's supposed to be shaped like a peach. But I know what you're thinking. That's a HUGE ORANGE ASS up there on that pedestal.

Phone photo of the day

My camera phone is my very favorite accessory. It takes crappy pictures but somehow that just makes them better, you know? I love that grainy, fuzzy quality that only 1.3 megapixels can impart. I have a real camera, an Olympus point-and-shoot that takes pretty good pictures, but for some reason 90% of the photos I take are shot with my phone.

So here is my first Phone Photo Of The Day. Or, as you will come to know it, PPOTD. I promise they will be the worst pics you've ever seen on a blog.

Thomas waiting for me to finish posting:



He thinks this PPOTD is a FABULOUS idea.

School Daze

Well, it's happened again. I let my guard down and someone came in and stomped all over my ideas of What Will Be. Thomas is supposed to be going to preschool in the Fall, and I let someone else do the decision-making. I was not The Decider and things are not. going. well.

There are two special-needs preschools in town and I really wanted Thomas to go to the UCP Center. It started as primarily a school for kids with Cerebral Palsy but has expanded into a larger role, taking kids with all sorts of special needs. They are obviously very experienced with kids that have mobility issues, like Thomas, and they also have mainstream kids in each classroom and I really like that mixture. The typical kids learn compassion, the special needs kids aren't segregated from the community.

Unbeknownst to me, there is another preschool in town, one primarily for kids with behavioral problems and autism. One where all the kids are mobile. Guess which one Thomas was assigned to.

And what really gets me, what really makes me smack myself in the head and wonder just what the gray matter in my skull is comprised of (porridge perhaps? maybe mashed up bananas?) is that I really thought it was because they had Thomas's best interests in mind.

BUT - they didn't tell me Thomas would be the only non-mobile child. They didn't tell me that the other kids are there for issues completely unrelated to the issues Thomas has. When I communicated with the person at the school system, she had memories of me making statements that I not only wouldn't have made, but I wouldn't even have THOUGHT. Things like having Thomas schooled at home. Wha..? I definitely want Thomas in a school setting so he can interact with his peers. Peers meaning kids with mobility and cognitive problems. Is this so difficult?

AARGGH.

He's only three and I'm already fighting the school system. This bodes ill for the next 15 years. And by God I am NOT letting him go to a school where fully-mobile kids with behavioral issues have the chance to pick on my child. Maybe I'm overreacting, but so be it. I will make this a positive experience for Thomas no matter what.

I probably need talking down off the ledge at this point. Any takers?

mommies and nannies and kids...oh my.

A good friend of mine invited us to join her and her kids today at the Country Club Pool (spoken with a bad English accent), so we met her over there this morning. This is one of the perks of being a stay-at-home mom. The experience, however, was an unexpected culture shock.

I remember going to the pool when I was young. We were skinny, crazy kids running around everywhere and our moms were there to make sure we didn't drown or turn blue and go into comas from hypothermia - moms who were harried but happy to have a place for their kids to swim off their excess energy during the day. There were the ubiquitous teenage girls there working on their tans and talking about boys and clothes and more boys. Remember the days when you tanned with baby oil? When sunscreen was only for your red-headed fair-skinned friend who burned after 5 minutes in the sun?

At The Club today there were, in fact, some skinny, crazy kids running around, but also a fair number of, ahem, chubby ones. I am astonished at how many 6 year old children have guts. I totally have this mental image of them all sitting around chugging Budweiser while they play their Nintendos like a bunch of fraternity boys.

Anyhoo...we arrived at the pool, found some tables and dropped off our stuff, then the kids and I headed to the baby pool. As they splashed around I did some people-watching. Hmmm, something seemed off...and then it hit me. Three-quarters of the children at The Club were with their nannies. But not Mary Poppins nannies, oh no. These nannies are twenty-something, hard-body college girls who look like they all took up starvation as a hobby. I mean come on, eat a COOKIE for pete's sake. All your little charges certainly do!

So, feeling totally insecure and having decided to put my t-shirt and shorts back on, my suburban housewife mind was then completely blown away by the ohmigod MOMS. I can't even begin to calculate the dollar amounts of the plastic surgery that must have happened for these women to look the way they do. Not a baby belly anywhere. Liposuction and tummy-tucks, anyone? And how on earth did they find time between their facials and appointments with personal trainers to tote their spawn to the pool?

Seriously, I'm not bitter. Or jealous. Hell, if I had a nanny and she looked like a Baywatch extra I guess I'd be bugging the Hubs for some plastic surgery too.

Plus, my kids have SO MUCH FUN jiggling the cellulite on my thighs; who am I to deny them that?

Recipe of the Week

We were invited to a 40th birthday luau on Saturday night and were asked to bring an appetizer. I googled "Hawaiian Appetizers" and got eleventy-billion recipes calling for poi, fake crab or Spam. *shudder*

Then I found it. The most delicious, mouth-watering, eat-them-all-before-you-get-to-the-party sweet and sour meatballs:

1 13 oz jar Heinz Chili Sauce
1 12 oz jar grape jelly
1 8 oz can crushed pineapple and juice
2 tbsp lemon juice
1 lb of meatballs, homemade or frozen. (Guess which ones I used.)

Combine the first 4 ingredients in a saucepan and heat slowly, stirring until smooth. Add meatballs, cover and simmer until hot. You can also put the sauce and meatballs in a crockpot and simmer.

Ohmigod these are good. Whoever decided to combine ketchup with grape jelly and call it "sauce" deserves a Nobel Prize.

The Revolving Door

Thomas has 4 therapists visit him every week. Yup, four people coming in and out, and in and out, and in and out of my home to work with my child. I used to feel the need to straighten up, maybe sweep the floor, even change out of my pajamas before any of them showed up. It was the hostess in me. "Can I offer you some tea? Anything to eat? How's your Mom?"

No longer. Now they are lucky if I've brushed my teeth before they get here. The first therapist of the week actually comes at the godawful, still peeling my eyes open time of 8:00 am Monday mornings. When I made the first appointment she offered to come at 7:30 but I didn't think I wanted her to be the first person awake in our house on Mondays. Unless she'd also start the coffeemaker and let the dogs out to pee.

Now, we mustn't forget to add in the CNA that comes 4 mornings a week. I LOOOOOVE her, by the way. I've started the paperwork to adopt her. Don't tell her parents.

Plus there's the housekeeper that comes in two afternoons a week to make sure we don't die of dust inhalation or whatever awful disease it is that's spread by dog hair going unvacuumed for months.

It's a revolving door at my house and it drives me crazy. Completely, brains-falling-out-my-head nutso.

Until they all had the week off because Thomas was staying with my parents. Then I got lonely. Monday was ok - Emerson and I slept in. We headed out to Target to buy stuff we didn't need. We took a nap - YAY for naps! We lazed around on the deck and then made new playlists for Mommy's iPod. It was a sleepy, do-nothing kind of day.

By Thursday I was twitchy from lack of company. When Hubs got home I talked so much he wanted to pull his ears off and stick them in his pocket until he went back to work the next day. I went to the grocery store every day just to chat with the check-out lady. I was excited to see the housekeeper.

Jeez, I thought, I need to get some friends that aren't paid to be here. I mean, I have friends. REALLY! I do. I just don't see them as often as I do Kelly, Anne, Pam, Seth and Brenna.

Ow!

I had to take Emerson for the last of her one-year vaccinations today. You see, just before she turned one I bought a Very Popular Book by a Very Popular Pediatrician which recommends spacing shots out and delaying some until the child is older. I watched all the talk shows and read all the headlines and by golly, I was NOT going to let the doctor poke my baby over and over and over and over...

(Note: I am not trying to start an argument about vaccinations here - I'm merely telling a story.)

At her last appointment, I pulled The Book from my diaper bag and my pediatrician promptly began a 10 minute lecture - I'm not exaggerating - on why the hype is mostly that - hype. He mentioned something about how he HATES to see parents walk into his office with That Book, and then he told me why. So I listened as he made a reasoned, rational argument and I somehow managed not to ask for copies of the studies he was citing. I thought about it for a moment and when I spoke, it was to ask "But why does she have to get FOUR shots at one time? That just seems so...mean."

Thomas was so sick after he was born that I was sort of immune to the meanness of shots. They had done so much to him at Duke - intubation, scalp IV, central line - vaccinations were child's play. At his well-child appointments I was relieved that the doc was merely giving him shots. I would hold his arms and stroke his hair as the doc poked him, and then I got to take him home, happy in the knowledge that his visit was for something so normal.

But those memories have faded some and I have found myself dreading the doctor's office on behalf of my children. I HATE taking them for shots.

Today I held Emmie's little arms and stroked her hair, and watched her face as the nurse poked her chubby little thighs with her needles. I watched her eyes as she went from quietly lying on the exam table to the sudden awareness that someone had just HURT HER. And then hurt her AGAIN.

She did the purple-faced open-mouth silent I'm-screaming-but-I'm-so-pissed-I-can't-make-any-noise thing, and as I picked her up and held her she clutched my shirt and dug her little feet into my tummy, trying to climb me. It broke my heart a little bit and I am so, SO glad that neither of my kids thinks that Mommy is doing hurty things to them on purpose. And I've decided that two shots are all I can handle at one time.

Just Call Me Grace

I was all set to go to the gym one day last week, but I had misplaced my iPod armband. I was bummed - that armband makes me feel so cool. So workout-y. It sorta makes me look like I know what I'm doing, which I definitely don't. So I had to improvise.

I got on the treadmill, punched in a preset workout and stuck my earbuds in my ears. Then, not really knowing what else to do with it, I stuck my iPod in my jogbra. I know - SEXY, especially with the cord to the earbuds emerging from my cleavage.

The gym was busier than usual for a Wednesday afternoon and there were several women on the ellipticals behind me. Plus that little dude that always wears dark socks pulled all the way up his shins was on a bike in front of me. But he's a whole 'nother post.

This is where I admit that I am strangely self-conscious at the gym. I like to go at 1:00 or 2:00 in the afternoon because almost no one else is there and I don't feel like I'm being *looked at*. The way I look at little dark-socks dude. I mean, what is UP with that guy?

SO, I'm huffing along on the treadmill doing 4.5 mph and working up a good sweat. I've got G-Love rockin' on the iPod and I'm feeling pretty good about my workout. Then my iPod slipped.

It fell out of the bottom of my jogbra, snapped to the end of the earbud cord and unplugged, fell to the treadmill and skittered off behind me. Without thinking, I turned around to catch it. I put one foot on the siderail and left the other on the moving part, slipped sideways and stumbled off the back. I had to keep running a couple of steps to stop myself from falling and I ended up against an elliptical, grabbing the rails for balance. Niiice.

I look up to see who was watching. Oh hi, just EVERYBODY. One of the ladies on the ellipticals stifled a grin and said "At least you didn't fall!"

Yeah, there's that.

Recipe of the Week

I love shrimp. I LOVE those yummy pink curled-up mouthfuls of tasty goodness. Except that one time they were jumping out of the water biting me ShutUpI'mSerious. They do that. I was floating on a raft in front of a dock on the Intracoastal Waterway and suddenly my legs were stinging. I looked down and these tiny, translucent BITEY things were hurling themselves out of the water and on to me and every time one did that it HURT. Baby shrimp. Who knew they were so vicious? So now I retaliate by eating them every chance I get.

This is my famous Shrimp & Grits recipe, which I totally poached from Crook's Corner in Chapel Hill, NC. Don't let the long list of ingredients throw you off, it's easy! And fattening. Yum.

SERVES 4

2 cups water
1 (14 1/2 ounce) can chicken broth
3/4 cup half-and-half
3/4 teaspoon salt
1 cup regular grits (I use quick grits and they do fine)
3/4 cup shredded cheddar cheese
1/4 cup grated parmesan cheese
2 tablespoons butter
1/2 teaspoon Tabasco sauce
1/4 teaspoon white pepper
3 slices bacon
1 lb medium shrimp, peeled and deveined
1/4 teaspoon black pepper
1/8 teaspoon salt
1/4 cup flour
1 cup sliced mushrooms
1/2 cup sliced green onions
2 cloves garlic, minced
1/2 cup fat-free low-sodium chicken broth
2 tablespoons fresh lemon juice
1/4 teaspoon Tabasco sauce

Bring first 4 ingredients to a boil in a medium saucepan; gradually whisk in grits; reduce heat and simmer, stirring occasionally, 10 minutes or until thickened; add cheddar cheese and next 4 ingredients; set aside but keep warm.
Cook bacon in a large skillet until crisp; remove bacon and drain on paper towels, reserve 1 tablespoon of drippings in skillet; crumble bacon and set aside.
Sprinkle shrimp with pepper and salt; dredge in flour.
Saute mushrooms in hot drippings in skillet 5 minutes, or until tender; add green onions and saute 2 minutes; add shrimp and garlic and saute 2 minutes or until shrimp are lightly brown; stir in chicken broth, lemon juice and hot sauce and cook 2 more minutes, stirring to loosen browned bits from skillet.
Divide grits into 4 large, shallow soup bowls; divide shrimp mixture into four servings and place on top of grits; top each serving with crumbled bacon and serve with lemon wedges.

Eye see you

Sigh. It finally happened. The thing I used to joke about when Thomas first got his prosthetic eye.

We were at Target. My Mecca. My Reason for Being. Thomas was in the cart and Emmie was in the seat up front. BECAUSE, if I put Emmie in the cart she starts climbing out and I am SO not a fan of head injuries. I figured that Emmie in the seat, with a seatbelt, was the choice that would keep Child Protective Services from visiting. However, I discovered that Thomas in the cart unsupervised is also not a good idea.

We wandered through the ladies' clothing section and OK! I was checking out the junior department because I refuse to admit I'm too old for those clothes and theyaresodarnCUTE! and had just moved out into the main aisle to head over to the baby gear. Yeah, I don't buy clothes for myself, but baby gear? Someone hang onto my credit card, I'm about to go crazy.

I hear a *click*. I look around the cart wondering what I had dropped.

And there it is. Thomas's fake eye looking up at me from the floor.

Can you imagine the scene if this had happened on the carpeted section? I wouldn't have heard it drop. We would have been halfway across the store before he turned to look at me at which point I would have totally lost my shit and started retracing my steps to find it. Fake eyes don't come cheap, people.

And then, the announcement over the intercom. "Target shoppers, please take a moment to look around you. A prosthetic eye has been lost. If you find a prosthetic eye please don't scream, just kindly pick it up and bring it to Customer Service."

No, I definitely do not ever want to be the reason behind THAT little drama.

Thomas's Story

When I started this blog I wanted it to be about my family, one of whom has special needs. What I didn't want was a Special Needs Blog. I realized though, that to ignore Thomas's story altogether means that there are things I can't say because they wouldn't make sense. So here you go.

When I got pregnant with Thomas I was considered high-risk because I was 36. My ob-gyn suggested that I have the 11-week Nuchal Translucency Test. No problem, I thought, this just goes along with being a little older. I have to say though, that every time someone said "advanced maternal age" within earshot I wanted to smack them sideways and shout "I'm not FIFTY for God's sake. I'm 36! I'm YOUNG."

About 2 minutes into the test I saw the sonographer's face go still and she got very quiet. Not a good thing. She summoned the doctor, a very kind man with a very serious face, and he told me that there was a 50% chance there was something genetically wrong with my baby. Probably something like Down's Syndrome. My husband and I were devastated, of course, and thus began my running of a veritable gauntlet of tests for the next 24 weeks. The thing is, EVERY SINGLE TEST came back normal. Chorionic Villus Sample? Normal. Multiple in-utero echocardiograms of Thomas's heart? Normal. Ultrasound after ultrasound? Normal. The doctors were elated, but deep inside I knew there was still something wrong.

The day Thomas was born I was at work, trying not to pester Dr. Google too much about prenatal stuff, when I noticed that he was not moving much. I tried all the tricks - I drank a Coke hoping the sugar and caffeine would get him moving, I laid down in my boss's office on my left side, poked my belly, nothing got a reaction. I went in to my ob-gyn's office for a non-stress test, and the next thing I knew I was being prepped for an emergency c-section.

When Thomas was born he was blue and still, not breathing. I had pretty much stopped breathing myself out of pure terror. My husband went back when they whisked Thomas away for resuscitation, and when he came back he told me that there was clearly something wrong with our baby. I don't remember much else but I do remember starting to cry.

Later that afternoon the neonatologist came to my room to discuss his findings. He started out by saying "Frankly, I'm disturbed by what I see." He went through a list of so-called "dysmorphic features" indicating a probable genetic abnormality, and when he got to the end I lost it. "He is missing his left eye." My poor little boy, all alone in the nursery with people inspecting and prodding him all over, and I couldn't even be with him because my legs were still numb from the spinal block.

Later the neonatologist came back to tell us that they had reintubated Thomas because his oxygen levels were dropping. I told my husband to lock the door. Every time that doctor showed up he had bad news and I didn't want him coming back in. We started calling him Dr. Doom.

A day later Thomas was transferred to Duke University Medical Center, 45 minutes from our home, because he had developed PPHN. I told my ob-gyn I could either leave against medical advice or they could discharge me, but I was going with my baby. They discharged me.

It was at Duke that we learned that Thomas had a genetic abnormality called a microdeletion. He was missing tiny strands of genes off of one of his 8th chromosomes. The syndrome is so rare is doesn't have a name and no one could tell us what it meant for Thomas, his development, his future. As no one at the time could tell us if he would live, his genetics were not our top priority.

Thomas gradually improved, moving from an oscillating ventilator to a regular vent, then to C-PAP, then a nasal cannula. All of these days blur together in my mind now, I only remember hour after hour of hovering over a hospital bed willing my son to live. Just LIVE. Please. I made bargains with God. I swore at God. I apologized and negotiated more bargains.

Thomas was finally moved from the PICU to a regular room where I was able to spend the nights with him. We brought him home 3 weeks after he was born, but he had an NG tube for feedings because he couldn't coordinate his suck-swallow-breathe reflex.

5 weeks later we were back to have a g-tube placed.

When Thomas was 9 months old he got his first prosthetic eye. It fits perfectly in his eye socket to help his face grow normally, and it is hand-painted to match his other eye - the most beautiful blue you've ever seen.

He started a variety of therapies to help his development - occupational, physical, speech and feeding. He will eventually learn to eat, but for now he gets all his nourishment through his g-tube. He doesn't yet walk or talk but we are getting close to both.

He is the happiest, sweetest three-year-old you will ever meet. His laughter is contagious, his smile lights up a room and his blond curls are irresistable. He is the love of my life.