My son Victor has cerebral palsy (CP). When he first came home from the hospital his left neck, shoulder, and arm were tight and twisted and once he started to walk (not until 20 months) we could see he had major balance issues. The final diagnosis was dystonic CP – he is stiff during the day although his muscles relax at night. Like most people with dystonic CP his arms are preferentially affected. He also has other problems swallowing and eating in because not his oral muscles and whole gastrointestinal tract are affected as well.

Here’s the deal – no one seems to have told Victor about these limitations. Since he was born we have worked with amazing physical therapists and occupational therapists and Victor, well, he has inherited a double dose of the stubborn gene. Since he was three years old he has spent hours on his own working on his muscles, doing his therapy homework to be “like the other kids.” Telling Victor he can’t do something is like giving him a double-dog dare, and he is like me, just throw down the gauntlet. And he is made of tough stuff, because for him to just stand he has to force his brain to control his tight stiff muscles, use a different part of his brain to balance, and then figure out how to control his muscles using unimpaired motor pathways. What we take for granted is complex motor planning for Victor.

He worked for hours and hours to learn to jump with both feet off the ground and to hop on his good leg and then on his bad. Weekend at the dry erase board to strengthen his wrist for writing. Every chance he gets his is trying, falling, and then trying again on the monkey bars until his hands blister and bleed. And now he swings through the air, a little stiffly, but God damn it he does it.

He asked to do Tae Kwon Do so we signed him up. He know what he can and can’t do. Last week he did his first belt test. My husband and I were nervous seeing his perform with a the older and much bigger kids, but he was doing pretty well with just a few balance wobbles. And then the board. Oh my God, we did not know this was coming – he had to punch through a wooden board with his little 6 year old fist. My husband and I were both on the edge of our seats. Literally. He would be devastated if he couldn’t do it.

And then POW, his right right sailed right through. It was pure elation for him and for us.

In the car I asked him, “How did you do that, were you scared?”

He looked at me for a minute, cocked his head, and said, “Well at first I was scared, but then I told myself that if I believe I can do, then I can do it.”  I was speechless.

Recently we were at the specialist and she said, “You know, I don’t think you realize how impaired he really is.” And while his muscles cannot do what mine and yours can, I beg to differ. He is the least impaired person I know.



It is 6 am and I have not slept much this night. Oliver has needed 4 nebulizers so far tonight. In the past 30 minutes has become very wheezy so we are doing back to back to back treatments.

And I am tired. I have not slept much for the past 5 nights when Oliver started getting sick. Within 24 hours he was spiking temps of 103 and 104. After 2 days when he hit 105.1 and had a respiratory rate of 50 I caved and took him to the ER where we were admitted. While the lab results were pending he was started on IV antibiotics to cover pneumonia, Tamiflu for influenza, albuterol and atrovent for his reactive airways, and IV fluids because he was too sick to drink and his fevers and mouth breathing left him dehydrated. He also needed oxygen at night because he was hypoxic while he slept. After 2 days the nasal swab PCR came back positive for RSV and the antibiotics and Tamiflu were stopped. By day 3 he was eating well enough and was off the oxygen so could go home on albuterol, atrovent, and chest physio every 4 hours.

And we have done this song and dance more often that I care to count.

However, this time I realized that it is really all perspective. Tweeting from the hospital (because what else can you do at 3 am when you are crammed in a hospital bed and can’t sleep?) I saw that Haiti was a trending topic and then later on found out about the devastation of the earthquake. The lack of basic medical care. No safe drinking water.

Things could be a lot worse.

And so today we will go back for a follow-up appointment. I hate having to go back the next day, but he is wheezing a fair bit, so someone should check him out. And we are so lucky that we have that option.

It is  5 am and I am sure the boys will be up in a hour, so I am enjoying the quiet inside and the darkness outside.

Yesterday we were talking about our first Christmas with the boys.  I couldn’t remember much. Sadly. We had no visits to Santa – no way I was taking 2 babies on oxygen to the mall. At the last minute, bolstered by a visit from Tony’s brother, a huge tree was installed. However, we had about 6 ornaments so it looked somewhat sparse. I am not sure if we even bought any presents, we were still shell shocked, not just from the death of Aidan and the 11 weeks in the NICU but the gravity of the situation and the uncertainty of the future. Presents just didn’t seem to matter.

I remember subsequent Christmas days just fine. The next year brought a tiny tree but presents scattered around the floor. The boys were standing and with some help taking very tentative footsteps, more delighted with the boxes than the actual gifts. And then their third Christmas, when we moved to California. After ripping open presents we spent the day running in the rain and the surf on the beach before seeking shelter and fish ‘n chips.

When the boys were 3 1/2 we had finally moved to out house.  Victor was STILL in the throngs of his balloon obsession so we bought a helium tank and Tony spent Christmas Eve filling hundreds of balloons. When the boys awoke they were greeted with a rainbow forrest hanging from mid air! Victor was speechless.

I can remember every Christmas except that first one, and it bothers me, because Christmas is a time to remember. Stress, PTSD, and sleep deprivation have left a layer of impenetrable grime on that memory.

So if I were doing it all again we would still have had a sparse Christmas, but I would have taken pictures, written in a journal, or shot some video. Something to trigger the memories.

My camera is loaded, I will snap pictures as they squeal about the Zhu Zhu pets and all the assorted goodies left by Santa. And if Santa heard me and I’ve been a good girl hopefully I will get that new ipod with the video recorder!

Merry Christmas everyone!

It had been a tough night. If you have a preemie, you know.

It started simply enough – a card received in the mail from a classmate, written in the large and apprehensive style of a kindergartner. My boys wanted to write a card back. Great idea.

I am always game for handwriting practice

The problem? Oliver’s wrists are weak and so he continues, despite much effort on everyone’s part, to hold the pen in a claw-like grasp, wrist flexed, with fingers clumsily folded over top. This is difficult to control. In addition, he can’t/won’t start the letters from top down.

When I try and correct him he yells, “I know.”

There are words between the two of us and a lot of tears.

At school he uses a little rubber guide to hold his fingers in the right spot. We have them at home. “Let’s get it out,” I suggest?

He doesn’t like it he tells me, and then the crying really starts. Huge tears, more precious than diamonds, well up and drip down his tiny cheeks. He doesn’t like the guide, he says, “It makes me scared.” After much discussion, and many “look at me, Sweethearts” on my part the truth is uncovered.

He knows he is different. He knows he uses the writing tool because his hands do not work the same way as other kids.

Many kindergartners have trouble with penmanship, that is not out of the ordinary, except this is Oliver’s second go round at kindergarten and he sees that the other kids are making progress and quite simply he is not.

My heart is breaking for him.

Physically Victor is more impaired. No one is quite sure how he manages to work those tight muscles, wracked with dystonia, but he does and how. What Victor lacks in physical ability he makes up for in tenacity. He has forced himself, practicing hours and hours until quite literally we have to drag him to bed. When I told Victor that writing at an easel would strengthen his wrist, every free minute he had was spent at that easel. Between bites of food he would run to the easel, work for a minute, and then run back to the table. Victor is a study in mind over matter, that inner strength is the trump card.

So after a long cuddle in which Oliver spoke the heart-breaking truth aloud was for the first time, “My hands don’t do what I want them to,” and both of our tears subsided, I told Oliver that I had terrible handwriting in school. Yes, the joke about doctors and handwriting can be inserted here. How I wasn’t allowed to have a big kid pencil, instead relegated to a horrible over-sized lead monstrosity that screamed poor penmanship until I was in grade 2. So I stole some pencils and lined paper from school and practiced every night. Oliver was equally entranced at the thought of his mom as a little girl and as a thief. Yes, I remind him, mommy was young once.

I told Oliver I had a plan. We would get out the easel. We would practice for 10 minutes every night. We would do legos because that also makes hands stronger.  We would write letters. We would do it together.

Oliver also takes a sewing class and due to what must be the patience of Job on his instructors part he has turned out beautiful little felt objects d’art and Christmas ornaments. “Maybe,” he said cautiously, “I could do sewing twice a week.”

“Of course,” I replied, although inside I was screaming YES, I’ll pay for you to do to sewing 7 days a week if you want!

Pushing your child is hard. There is no way around it. Sometimes I am riddled with doubt. Should I have backed off? Am I pushing too hard?

I don’t know. But I guess what I am really trying to impart is that the success is not in the end product, the success is in the doing and the trying. That when we fall we just have to pick ourselves up.

It just sucks that some of us fall more than others.

Having a baby with a health problem is hard. Knowing what you are facing a head of time (or at least very soon after delivery) is helpful emotionally and, for some babies, it can be lifesaving. For example, every pregnancy in North America is screened for neural tube defects (NTD) a condition where the spinal cord and sometimes even the brain fails to form correctly. For some affected children a NTD is sadly fatal; however, for some children knowing about a NTD in advance can help improve outcomes. Some babies can have fetal surgery during pregnancy to correct the defect before birth improving their outcomes. For others, knowing about a NTD means planning for the delivery at a center with a pediatric neurosurgeon and most often a c-section, as these two things improve outcomes. Testing for neural tube defects in not cheap –  it involves blood tests and an ultrasound at 16-20 weeks in the pregnancy. The medical community has deemed screening for NTD important and most patients agree and desire the testing.

All babies in the United States are also screened for congenital hypothyroidism (under activity of the thyroid gland). The incidence is 1/4,000 births. Congenital hypothyroidism is a very serious condition. Without enough thyroid hormone the developing brain is damaged permanently leading to mental retardation (this is called cretinism). The  test is an inexpensive blood test. If it is abnormal more testing is needed. The treatment to prevent cretinism is a pill that costs about 1 cent a day. Clearly screening and treating for congenital hypothyroidism is important - a devastating condition that can be prevented by a pill.

So what about congenital heart defects? These defects affect 9/1,000 births, so they are more common than NTD and congenital hypothyroidism. Now many heart defects are not serious, meaning surgery or intervention in the first year of life is not needed. For example, atrial septal defects (a hole between the two atria, the top chambers) are watched for at least 2 years before they are closed. Knowing about these defects at birth is less important. However, 2 out of every 1,000 newborns (that is 25% of babies with a congenital heart defect) will have a critical defect, meaning knowing about this at birth (or before birth if possible) is important. Less than 10% of congenital heart defects are diagnosed before birth?  Why?

An ultrasound at 16-20 weeks (the same scan used to to screen for NTD) is capable of picking up 90% of congenital heart defects if (and this is important) the ultrasonographer is appropriately trained and gets a good look at all 4-chambers of the heart.   This is harder than it sounds. The baby must be back down and still. Trying to get a good view of a heart that is 2 cm or less in size, that is beating 160 times a minute, in a baby who is moving, though a mother’s belly can be a challenge to say the least. If any potential concerns are raised or other abnormalities identified on ultrasound then the baby should have a fetal echocardiogram, a much more detailed assessment performed by a specifically trained technician and interpreted by a cardiologist.

If a 4-chamber view of the heart should pick up 90% of defects but isn’t then the question is really should different screening be recommended? Is this even important?

Well, I have a son with congenital hypothyroidism and one with a critical heart defect. I do not believe one defect is more or less important than the other. If screening for NTD and hypothyroidism is important (and it is!) why is screening for critical congenital cardiac defects not as important?  Are the 2 out of every 1,000 babies born with a critical cardiac defect not as important as the 1 out of 4,000 with hypothyroidism and the 1 out of 1,000 with a neural tube defect?  

I don’t have the answer as to the best screening tool.  I had my ultrasounds in my pregnancy performed by some of the best perinatologists and ultrsonographers in the world. All were trained by Dr. John Hobbins, a master and really the father of obstetrical ultrasound. Because I took a medication during my pregnancy that can cause cardiac defects  I had not one but two fetal echocardiograms. Both failed to detect Oliver’s critical pulmonary stenosis that needed surgery when he weighed 1,200 g (he also had an atrial septal defect, but that was watched for two years, so not part of his critical defect, but important to note that both his critical and non critical defects were missed). 

My point? If some of the best doctors and ultrasonographers in the country can’t pick up a defect after a level II ultrasound with a 4-chamber view and two fetal echocardiograms then a different test may be needed. In addition, some critical defects (like abnormal coronary arteries) cannot be identiifed on ultrasound or echo at all. 

As with everything in medicine, more studies are needed/underway. However, in the mean time pulse oximetry (a painless evaluation of the blood oxygen level) performed after 24 hours of age can pick up 50% of critical cardiac defects in newborns, it requires no specialized training, is in every hospital in the Western world, and costs maybe one or two dollars. At the most.

Isn’t that a good place to start?   

Here are my two sweethearts. Critical heart defect on the left and hypothyroidism on the right. Equally important and equally potentially devastating.

Somewhere in another state a new mother brought her precious daughter home only to have her die 5 days later. She tweeted that they will wear pink at her funeral.

Her pain was raw even through the filter of cyberspace. I knew what she was wondering. How will I manage to take another step? To talk? To breathe? I could feel it because I have lived it.

When Aidan died I was bereft in my agony. There are no other words. I was still hospitalized at the time, and so I lay in my hospital bed and just stared at the ceiling. I cried a lot. Sometimes out loud and sometimes silently to myself. There was no day or night, just a cloak of despair.

But then an acquaintance came to visit. We knew each other well enough to exchange pleasantries. Have you been skiing? What are your plans for the summer? Many people had come to visit, but her visit was different, because we we were now members of the saddest sorority – mothers who have lost a baby.

She brought me a huge paper bag (I remember it was a Safeway bag) filled with books. “I thought reading might help, you know, it helped me a little,” she said.

And then she just sat beside me.

She was about three years out from her tragedy. Like me, a son who took one or two breaths and then that was simply it. A life of hope, a future imagined, simply gone. I asked her how she made it through. How could she walk, talk, breathe, because I was having problems with all of them. I knew she was waiting for my question.

She looked at me and said, “I don’t know what I did, but it gets a bit easier with time. It just does.” And her sitting there beside me, to offer her support was testimony to that fact. I could feel the energy in the room change, just a little.

We didn’t say much. There isn’t much to say. Sorry is just so ineffectual. But knowing that someone else made it through and that the wounds had somehow knitted together, not really healed, but closed, was more comforting than anything anyone could say or do. She was a beacon. Until then I was drifting aimlessly, and while I still had much grieving to do at least I had proof now there was another side, that at some point there would be solid ground.

So if I could come and sit with you and bring you a bag of books, I would. I would hold your hand and just listen. I would be your beacon and let you know that at some point, in your own time, you will come ashore once again.

Swimming has been a challenge for my boys. Never mind the coordination issues and the sensory issues around actually having to put your face in the water, but they also appear to have inherited my husband’s lead-like buoyancy.

We tried swimming lessons for almost a year at the local community center. The lack of supervision required my jumping in fully clothed to pull Oliver off the bottom of the pool (and yes, I called the mayor at home and reported them to every state agency). And then this summer while on vacation, Victor decided he could swim, which is great except he can’t and no one was watching. A crisis (which still makes me queazy) was narrowly averted.

So this fall I announced learning to swim was simply a requirement. There was crying and screaming, but I held firm. The husband backed me up. No vacations ANYWHERE near water, including hotel with pool, until they can swim the length of a pool. Twice.

We enrolled at La Petite Baleen, a local program with warm water (a must to prevent whining) and a fairly regimented program. We were dubious at first. After 3 sessions Victor would still not put his face in the water (his biggest sensory issues involve his face). So they dunked him. He hated it, but he lived. I thought about telling the teacher about his issues, but you know he just has to learn.

They wore flippers, which helped, and they practiced over and over. There was a lot of sinking, and Victor kept trying to walk in the water, the idea of keeping his body horizontal completely foreign. And then finally last week it clicked. They both swam 6 feet face in the water. Little legs pumping, arms flailing, but they did it. And they earned a green ribbon. So excited by the fact they actually earned something on their own all they can talk about is going for their blue ribbon! Or in Oliver’s words, “That blue ribbon is killing me, mom.”

And now no one remembers that mom forced then to go to lessons or that they were dunked in the water, just that they did something. On their own.

Eighty percent of medical bills in America contain errors. If some version of this story has not yet happened to you, keep an eye out because it probably will.

In October 2005 I took Oliver to the urgent care clinic associated with our HMO. He had a fever and was breathing a little too fast for my comfort level. I presented both his HMO and Medicaid card when we registered. After an evaluation and chest x-ray he was found to have pneumonia and low oxygen levels. Again (the 3rd time that year). We were transferred by ambulance to our in-network hospital, The Children’s Hospital, where he was hospitalized for 8 days.

A month or so later I receive a bill for the x-ray taken at the urgent care clinic. My HMO denied it, as the doctors and the urgent care clinic were in network but the x-ray facility was actually part of a non-network hospital, Porter Adventist Hospital. As a doctor I was aware of this issue and had specifically asked the x-ray technician to code the x-ray as urgent to prevent any billing headaches (I think that is called foreshadowing).

So after I looked at the bill I silently cursed the x-ray technician, but figured this would be a simple fix. One or two phone calls at the most. It was clearly a simple error of not submitting the x-ray bill correctly to my insurance carrier (it needed to be coded as urgent/emergent). Anyway, I knew Oliver also had Medicaid as back up.

So, I called the billing department at Porter Adventist Hospital and explained the bill should be coded as urgent or emergent, and asked that they re-submit. I also indicated Oliver had Medicaid so we really shouldn’t really be getting billed anyway. They apologized for the oversight and vowed to fix it. I faxed a follow-up letter to be on the safe side.

Another month went by and another bill arrived for the same chest x-ray. I called my insurance company and much to my surprise I found that the bill had never been re-submitted by Porter.

So I called the hospital and went through the whole song and dance one more time. I faxed another follow up letter.

Over the next 12 months this same scenario repeated itself over and over. It was like being stuck in the movie Groundhog Day. I could not make any “billing specialist” at Porter Adventist Hospital understand the difference between a routine and urgent x-ray or make them re-submit the bill correctly to my HMO or event to Medicaid. They only wanted to charge me.

Each time this cycle repeated itself the personnel at Porter became increasing hostile, accusing me of avoiding the bill. Once women even told me it was “perfectly legal to bill someone with Medicaid” (by the way it is most certainly not legal to wantonly bill someone with Medicaid).

Porter Adventist Hospital finally responded with a letter threatening collections. I called Colorado Medicaid to re-confirm that Oliver’s coverage was active at the time of the x-ray and called the State Attorney General’s office in Colorado to confirm the Colorado Medicaid law. I sent a letter to Porter detailing all that information, even quoting the Colorado Statute that supposedly was enacted to protect children with Medicaid from this kind of predatory activity.

We were sent to collections.

I contacted the collections agency. They didn’t care about Porter’s billing error. They didn’t care about Medicaid. They didn’t care about anything. It was my responsibility. A nice touch that our elected representatives allow.

I called Medicaid and got a Medspan report, which is a legal document proving Medicaid coverage. Of course the collection agency could not “read” the fax so I sent it registered as well. I then sent a letter to the CEO of Porter Adventist Hospital, because CEOs hate to be bothered by angry patients, especially one who is about to create a public relations nightmare. To ensure he received the letter I also faxed the letter to his office . To make sure my letter really caught his attention I cc’d it to the the Colorado office of Medicaid Fraud office and the Colorado Insurance Commissioner.

I received a call within 24 hours indicating the bill would be pulled from collections. I never received an apology.

But it gets worse. When I spoke to Medicaid about the Medpsan they kindly reviewed all of the charges. There was a very long pause before the woman on the other end of the phone spoke. “It is interesting that you have been billed”, she said, “because Medicaid paid that claim back in November 2005.”

When the mess was finally untangled, the billing department at Porter had erroneously generated two chest x-ray bills instead of one. My HMO had denied both claims, not only because they were billed as non-urgent but also because two claims for identical procedures on the same day is an automatic denial of a claim. Instead of Porter Adventist reviewing their paperwork for errors and then re-submitting the bill correctly to my HMO, who would have paid a correct bill, Porter took the easy road and billed the taxpayer for two chest x-rays. Medicaid paid one and of course denied the second one, an obvious error. This yearlong ordeal was for duplicate x-ray that had never even existed.

So you can do everything right:
Have not one, but two insurances
Go in network
Present the correct insurance cards
Follow up on all errors
Call everyone involved to make sure the information is correct

However, if the person processing your paper work is incompetent you are guilty until proven innocent.

And this can’t be changed why?

Sunday, November 28th, 2009

Counting to 30 by the end of kindergarten is a math standard. Some kids enjoy counting, sometimes to the extreme. Victor will proudly display his counting prowess to 100 over and over and over again. I am so proud but if I hear it one more time I think I’m gonna scream, but I don’t because I am his mommy and it is my job to listen.

Oliver had more trouble with counting, forgetting what comes next especially once we were into double digits. However, I found the best tool available for $1.99 – an advent calendar! Yes, you remember them from your childhood. Little windows with the numbers 1 through 25 scattered in random order, each one hiding a tiny chocolate (because chocolate is a great motivator for both young and old!). Each day you can look through the previously opened windows and review the numbers that you have counted so far. Opening the little cardboard shutters is also a good fine motor skill (and I am all about sneaking that in whenever possible).

It’s fun, it involves Christmas, and there is a reward system in place. You can find advent calendars at just about any grocery story. There are more expensive ones, but why spend the money when $1.99 can do the job just as well?

Now the advent calendar only gets you 24 days, buy if your kindergartner (or pre-schooler) can count to 24 by the end of December you are almost there with 6 months left in the school year.

While we patiently wait for Tuesday when we can begin, Oliver sits and stares at the calendar (maybe looking real hard will make the chocolate teleport through the cardboard?). When I tell him there are 25 days until Christmas I hear his little voice count from 1-24 without any help, and then, bolstered by his success he carries on to 30.  I stop what I am doing, because I am his mommy and it is my job to listen.

Thanksgiving always means a lot of work. The prep. The cooking. Cajoling the boys to the table. The after meal movie (Fantastic Mr. Fox, and by the way we laughed out loud!). The clean up that seems to last for 3 freakin’ days (how does a family of 4 make such a mess?).  And then the finale Charlie Brown’s Thanksgiving.

While loading the dishwasher late last night, for quite possibly the 6 th time in less than 24 hours (and no Tony, I can’t use fewer dishes), I realized it was all worth it for the memories. I don’t have a lot of happy childhood holiday memories (and certainly nothing involving my mom dissolving into hysterics, or at least not the good kind of hysterics). But I can change that for my boys.

So here’s to hoping that Victor remembers waving his turkey leg around like King Henry the VIII and Oliver cherishes those moments in the kitchen when I squirted ReadiWhip directly from the can into his mouth over, and over, and over again.  Because I sure do and for me, it was the best Thanksgiving ever.