Tuesday, July 06, 2010

It's not easy being a Mother. If it were easy, fathers would do it.

What is it that makes me just a little bit queasy?
There's a breeze that makes my breathing not so easy
I've had his lungs checked out with x-rays
I've smelled the hospital hallways.

Okay, blogfans, we're going to embark on a journey together. For weeks now, I've been scouring the corners of the interwebs looking for stories to reassure me that someone, anyone, has been in this situation and had a positive outcome. Google has failed me, so I've decided to write my own, for other hopefuls to stumble upon.

Don't know what I'm talking about? Let's rewind:

April 2010: I took the kids in for their check-ups. Cecilia was turning 4 and needed her school forms done, and Lucas needed one of the vaccines we decided to inoculate him with. At the time, he was 20 months, and he still didn't walk. Otherwise, he seemed to be progressing normally. The hubbin' and I had discussed our sons sedentary ways before the appointment, and we both agreed that he'll do it when he's ready. Our pediatrician agreed with us, but gently gave us the contact information for the county Early Intervention program. He said that it doesn't hurt to have a physical therapist look him over, at the very least they could help exercise the muscles he doesn't use and keep them strong so that when he is ready to walk, they'll be ready to support him. We called on the way home, and set up an appointment.

May 2010: We had our first home visit, in which someone came to our home, and asked us several pages of questions about Lucas' development. "Can he stack 4 blocks high?" "Can he self feed using a spoon? How about a fork?" Very basic stuff. Then we got to the gross motor section
"Can he stand unassisted?" Yes!
"Can he walk?" No!
"Run?" No!
"Will he drag over a chair or stool to climb on if he wants something high?" No!
"Can he kick a ball?" No!
"Can he climb stairs without placing his hands on the steps?" No!
"Can he hop?" No!
"Can he hop on one foot?" *wants to die* No!

Mmhmm...She diligently checked off "no" on her questionnaire as we went down the laundry list of questions. She then explained that in order to qualify for Early Intervention services, a child must have at least a 25% delay in any one area. Since we had an epic fail in the gross motor section, we were definitely eligible. The next step would be for a visit at their office, where we would have a three hour assessment with their team of therapists - A physical therapist, an occupational therapist and a speech therapist. The appointment was for the first week of June, about two and a half weeks after the initial home visit. The woman from Early Intervention said "He looks like he has all the right tools to do it, he just needs to put the pieces together." We nodded - she was right. It did seem that way.

June 2010: We arrived for our appointment on time (imagine that!) with Lucas and Cecilia in tow. We settled in a room that looked something like a toy room of a nursery school - brightly colored mats, toys, big mirrors stuck to the wall, happy posters hung everywhere. We were introduced to the therapists, who were all very friendly and kind. The appointment seemed a lot like play. They read books, played with blocks and puzzles, and basically just interacted with Lucas for three and a half hours. At the end of the appointment, we were handed a giant packet of paperwork that broke down the assessment into categories of skills; gross motor, fine motor, cognitive, etc etc. Lucas scored at or above his age group in all categories, except for gross motor skills where they placed him at a 12-14 month ability level. He also seemed to have low muscle tone in his core and pelvis. We agreed upon proceeding with the physical therapy. As the therapist was watching him, she asked if we had seen an orthopedic surgeon yet. "Um...no?" we said. She mentioned that she thought it was worth looking into, as Luc's ankles and feet tended to roll in when he stood and crawled. Hm. Okay. So I went home and promptly googled "top orthopedic surgeons in NoVA" and came up with Dr. John Delahay, from Georgetown University Hospital. I called our pediatrician, who concurred that he was an excellent doctor, and we were in good hands.

Saki goes psychotic: Ahh, the internets, our own worst enemy. As I was waiting for the orthopedic appointment, which was two weeks away, I made the mistake of googling. I typed in "22 month old not walking." Possibly the worst thing I could have done. I read page after page of google results. There were blogs and forums and pages of symptoms and signs on disease specific support sites. There were two reoccurring things that people kept mentioning that matched Lucas' capabilities perfectly - One was cerebral palsy, and the other Duchenne's Muscular Dystrophy. I wasn't familiar with either of them, so that led to more googling. Cerebral Palsy sounded pretty bad, until I moved onto Duchenne's. I very quickly went to "He'll walk when he's good and ready" to weeping because I felt that he had one foot (or hand and knee, as the case may be) in an early grave. I began obsessively reading about both, frantically looking for a definitive sign or symptom that he didn't have...something to ease my worried mind. But there wasn't anything. It seemed like a terribly perfect fit. At the hubbin's insistence, I called Mike's dad, a pediatrician, who talked me down off of my psychotic little ledge late one night. He was kind, and reassuring, and I took a lot of comfort from what he said.

The Ortho Appointment: Finally! We drove to Georgetown, leaving Cecilia at home with my parents, a very important breakfast date in the wings. As we sat in traffic on the memorial bridge, I looked at the Hubbin' and said "I hope this doctor isn't a doucher." He nodded in agreement. From the back seat we heard an awful retching sound, followed by what sounded like someone dumping a bucket of water on the floor. I looked back to see Lucas completely covered in vomit, soaked from head to toe. I groaned and looked in my bag for a spare outfit that I knew very well was not in there. Somehow, despite ridiculous traffic and a GPS who sent us in the wrong direction, and a car sick baby, we made it to the appointment on time (i know, right?!). We walked into the office, with Lucas, clad only in a diaper and sneakers. I felt desperate to explain what happened - I wasn't some negligent mother who brought her baby places nude, he was sick, okay? Stop looking at me like that.

We were finally called back to a room to wait for the doctor. After a short wait, the doctor came in. He was an older man, very soft spoken and thorough. He sat down, and played with Lucas, picking him up, tossing him around, rolling him across the table. He pulled on his legs, felt his back, and gave us the all clear. He said physical therapists love to send kids who don't walk to orthopedic surgeons. He noted that Luc's feet are pronated, meaning they do roll in, but they aren't pronounced for his age, and they are something that self corrects. I confessed my googling frenzy, and asked about muscular dystrophy. He said he felt that it was definitely not muscular dystrophy, but rather a neurological issue, and felt possibly a mild cerebral palsy. He suggested seeing a neurologist and gave us the name and number of someone he recommended. I left the appointment feeling as though I was dancing on air. I felt like a huge weight had been removed from my shoulders. A nurse who was standing in the hall asked "Where are your clothes, little man?" Ahh, I knew it would come eventually, but we were so blissed out with good news, I didn't care. "Oh, they're in the car. He power puked on them on the way up here." She laughed and quipped "Ah, I thought he was bringing sexy back!"

We went home and made an appointment for the following Friday with the neurologist.

Times when the day is like a play by Sartre
When it seems a bookburning's in perfect order
I gave the doctor his description
I tried to stick to the prescription

The Neurology Appointment: Back to Georgetown we went, leaving at 7:00am for our 9:30 appointment. We figured that between rush hour, and an extra few minutes in case vomit-boy had another incident we would get there on time. Except there's one thing DC is, and that's unpredictable. We left at 7, got gas in the car, stopped for coffee and made it to Georgetown by 7:35. Oops. Gross miscalculation. You can never tell with DC traffic. We sat in the waiting room until 9, watching Finding Nemo on their big TVs. We were called back to a small room where they checked weight, blood pressure, temperature, etc. Much to my chagrin, not only had Lucas had a poopsplosion in the 30 seconds that it took for us to walk into the room, but I had also left the spare diapers in the car. Apparently, I just suck at this whole outfitting a child thing. Saki = 0 for 2. They gave us a new diaper, and a spare, just to be sure, and ushered us into a consultation room. It was much scarier than the orthopedics room. A big dark wood desk with cozy chairs was in the center, and an exam table to the left of that. It seemed like the kind of room where one receives bad news. A hefty box of tissues was placed on the desk, centered between the chairs. Unsettling to say the least.

The doctor blew in the room, and immediately bombarded us with questions, pecking our answers into her computer. She examined Lucas' eyes first with the lights on, and then with the lights off. She flipped him this way and that, and then grabbed his legs and stuck his feet behind his ears. "Mmmhmm." She said. She then held his arm and bent it behind his back at an ungodly angle. "Yes, yes," she said to herself.

By this time I was about to chew my lower lip clean off my face from anxiety. I finally asked what it was that she was looking for.

"He has hypotonia - low muscle tone," she said. This wasn't big news to us, as we had heard "low muscle tone" before. But the neurologist continued that she felt it wasn't isolated to his core, as the others had said. She held his hand and bent his fingers backwards until they touched his arm. Lucas didn't even flinch. "It's him. It's all of him."

She placed him on the floor and folded him up like a pretzel, arms and legs crossed and tucked in every direction. She sat in her chair to watch him. Lucas lolled to the left and tipped to the right, and finally fell forward, untangling himself in the process. He grabbed the closest chair and hoisted himself up into a standing position, giving the neurologist the stink eye over his shoulder.

"He seems to have weak thighs," she said. "I'm ordering a Creatine Kinase test."

Instantly my heart dropped. I felt like I swallowed a whole tray of ice cubes. Cold and lumpy inside. I sunk into a chair and swatted around until I found the box of tissues. I knew from my obsessive googling that the CK test was the one which pointed towards muscular dystrophy. Seemingly oblivious to my angst, she continued "Do you have a family history of neuromuscular disorders?"

My tongue was suddenly much too big for the space provided and felt like it was made of cotton. I couldn't even answer. The Hubbin' took over from there. She handed us a slip for labwork and sent us downstairs, with an appointment to meet with her again in three weeks. "The results should be in on Tuesday," she said, circling the neurology department phone number on her card.

Silent tears poured down my face the whole time. My baby. They were testing my baby for a terminal disease.

Saki Goes Psychotic - This time for reals: Thankfully, we had a full weekend planned, away from home. My sister graduated from High School that evening (woot woot Jemma!), we drove to NJ to see her graduation and attend her party the next day. The whole weekend was a busy blur of relatives and late night swims in the pool that combined with my fathers Tramadol prescription kept me delightfully ignorant of the pending results. We returned home late Sunday evening, where I camped myself outside with a box of parliament lights the second my children were in bed.

9a.m. Monday morning I found myself obsessively calling the circled number on the card. Because she said Tuesday the results would be in, but it never takes as long as they say, right? Right?


"Thank you for calling Georgetown University Hospital, Department of Pediatric Neurology. Press one if you'd like to be directed to a full voicemail box where you are unable to leave a message. Press two if you'd like to sit on hold for all of eternity. Press three if you'd like us to "accidentally" disconnect this call. Press four, five, six or seven if you'd like to hear this message over and over again. If you need to speak to someone right away, hang up, and dial 9-1-1."

I finally got myself connected to the voicemail of the neurology nurse, and left a shaky message, pausing in the middle to cry a tiny bit, pleading for her to call me back.

And she did. And the results weren't in. Actually, not only were they not in, but the labwork was outsourced due to our insurance coverage. I shouldn't expect them before Wednesday afternoon.

Wednesday! That was a full 48 hours from this point in time. So I did what any rational person would do: I called my doctor and pleaded for ativan. And I got it. Thankfully.

I won't bore you with the gritty details of my expedition off the deep end, but in a nutshell, I spent three, oh yes, THREE days having panic attacks, weeping at random, and googling. It's amazing the macabre thoughts that dance through your mind. I thought about how we would have to sell our two story rambler style home to accommodate his wheelchair. But we can't sell our home, because we're upsidedown on our mortgage, so we'd have to foreclose. But we can't foreclose, because the Hubbin' will lose his clearances and by proxy, his job. And so on and so on, each level of hell getting slightly darker and darker. I wound myself so tightly that I wasn't eating or sleeping. The Hubbin' worked from home and took care of the children as I stumbled around the house in a zombie state, alternating between googling and chain smoking.

I finally fell asleep late Wednesday night, where I had a dream that the test results indicated muscular dystrophy. In my dream I screamed, sobbing, holding Lucas so, so close. It was so real I could smell his Johnson and Johnson baby shampoo. I woke up to the phone ringing, my pillow wet with tears.

It was the neurology nurse.

The labs were normal. Completely normal. I uttered a thank you and collapsed into my husbands arms, crying some of the happiest tears I've had so far.

And so it goes: We continue having physical therapy weekly. We have been working with Lucas in the pool, trying to steady his balance and work on his muscle strength. We go back to see the neurologist (who probably has all sorts of unsavory notes about my ridiculous behavior and obsessive calls typed into her computer) at the end of the month, and will probably have a CT and MRI done to continue to rule out issues.

As it stands now, he's a happy, healthy, bubbly, beautiful little boy. He's quick with a smile, and full of love. We're taking the advice of our much trusted pediatrician, and trusting in our baby and enjoying our summer. We know that this is the first steps of many. But we also know that we can't dwell on the unknowns. Feel free to remind me of that last statement whenever you feel I need a hefty helping of reality check. Now that the dust has settled, and we're finding our bear crawl groove together, there is one thing I know:

Things will be okay. Even if it's a new kind of okay.

Someday I'll have a disappearing hairline
Someday I'll wear pajamas in the daytime
Afternoons will be measured out
Measured out, measured with
Coffeespoons and T.S. Eliot

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