Wednesday, November 28, 2007

Nonverbal Learning Disorder

A few weeks ago (may have even been a few months-I'm waaaaay behind) Teri brought to my attention that older preemies seem to be struggling with Nonverbal Learning Disorder (NLD) and maybe it would be a good blog post. I have heard this term for at least 5 years due to being on an on line support group for school aged preemies. I have heard it mentioned here too, by both adult preemies and parents of older preemies. I have even looked it up, on numerous occasions, while helping other parents.

So, can someone please tell me why I never realized that this is exactly what is going on with Paige? I feel like an idiot. I started researching NLD for this blog post and found myself staring at the screen, dumbfounded that I am just now figuring it out.

According to all of the reading I've done over the past 3 days (and believe me, I have not stopped reading) the characteristics of a NLD child are as such...

* Above average reading skills. They are often early readers.
* Above average language skills. They talk like mini adults.
* Above average rote memory.

* Socially they struggle because they are not able to understand non verbal communication.
* NLD kids have difficulty in math and reasoning skills.
* Difficulty with visual and spacial functioning.
* Poor handwriting skills.
* Problems with balance and coordination.

Paige fits these characteristics perfectly. Some of the websites out there listed examples and I swear they were writing about Paige. One example that was given (I cannot recall which website-brain overload here!) was that NLD kids are literal children. OMG!! We have called Paige "literal girl" (goes to the tune of Madonna's "material girl") for years!

The best source for information, that I have found is Please speak up if you have a better source as I am scrambling to find as much info as possible.
This discovery is just one more example of how it is imperative that preemies are studied past the age of 2!
A big thank you to Teri for the post suggestion and reminding me of a study that Helen had mentioned...
Now I'm back to that place that is so familiar..... where do I go from here?

Sunday, November 25, 2007

Too Many Ultrasounds?

The following article was taken from and can be found at the following link.

I had seen a similar article a few years ago but it was not as detailed as this one, which comes to us today thanks to Helen Harrison.

During my pregnancy with Paige, and before my water broke, I had many ultrasounds due to early bleeding, hyperemesis and polyhydramnios. After my water broke, I had daily ultrasounds, lasting more than 15 minutes each sitting, to check my fluid levels. This was a daily ritual that continued the entire 2 1/2 weeks until I delivered. What I find most interesting about this article is that Paige was both very delayed in speech and is left handed, despite her left sided weakness. I'd love to see if the researches have proven a correlation.

When I was pregnant with Tyler I had weekly ultrasounds, all of them lasting more than 15 each sitting. Towards the end I had biweekly ultrasounds that lasted at least 30 minutes each sitting (some were less if Tyler cooperated). Although he is too young (almost 19 months) to determine hand preference, he is very delayed in speech (not even saying mama and dada consistently).

If anyone has any newer information on the subject, I'd love to see it.

Bad Vibrations? Ultrasound disturbs mouse brains.

Christen Brownlee

Prolonged and frequent use of fetal ultrasound might lead to abnormal brain development, a study in mice suggests. The finding sounds a cautionary note for pregnant women getting the commonplace procedure.

In that technique, an ultrasound probe sends high-frequency sound waves into the abdomen of a pregnant woman. The waves bounce back to detectors, creating images of the fetus. Doctors use the pictures to check for birth defects and to assess a fetus' size and movements. Many women also undergo ultrasounds to create collections of early baby pictures.

Ultrasound has generally been regarded as safe. However, a few studies have suggested that it might cause neurological changes, such as delayed speech or an increase in left-handedness. Researchers hadn't studied how the number or duration of ultrasound procedures affects neurons growing in the fetal brain, says neuroscientist Pasko Rakic of Yale University.

Neurons are created in discrete places within the brain as it develops, and they then travel to the brain's outer layers. Rakic and his colleagues study this process, which is known as neural migration.

To determine whether ultrasound affects neural migration, the team worked with mice at a late point in pregnancy, when new fetal neurons have to migrate a long distance to reach the brain's outer layers.

The researchers injected the animals with a chemical that marks newborn neurons and then applied ultrasound to the bellies of some of the animals over the next 3 days. The ultrasound was administered to each pregnant mouse in multiple sessions that totaled 5 to 420 minutes. With the machine turned off, the scientists touched other mice with the ultrasound probe for the same amounts of time. A third group of animals received no procedure at all.

After the mouse pups were born, the team examined brain slices. In animals whose mothers had had ultrasound sessions that added up to 30 minutes or more, the scientists found that a significant number of neurons destined for the brain's outer layers of gray matter had become improperly embedded in inner layers of white matter.

The number of misplaced neurons increased with the total time that a newborn mouse's mother had spent receiving ultrasound. In contrast, the brains of newborns whose mothers had had the sham procedure typically resembled those whose mothers had had no procedure, Rakic's team reports in an upcoming Proceedings of the National Academy of Sciences.

"When cells are in the wrong place, they might affect function of the cerebral cortex," which in people controls such higher brain functions as language and movement, says Rakic. "We just don't know yet what this could do."

He and his team plan to conduct studies that will determine whether the results hold up in nonhuman primates.

Rakic cautions that some women might be getting excessive sonography. He's especially concerned about so-called keepsake ultrasounds, which are often performed by untrained technicians in nonclinical settings, such as shopping malls.

The mouse results reinforce guidelines set by the Food and Drug Administration, says pediatric neurologist Verne Caviness of Massachusetts General Hospital in Boston. "The basic guidelines in this country suggest using ultrasound as little as possible," he says. "Baby pictures aren't a justifiable use for this technology."

Sunday, November 18, 2007

How Much Should You Tell Your Preemie?

Buddhist Mama wrote: "Speaking of which, can we have a post on this topic TPE? When do many of you out there tell your children about their prematurity? Particularly if they would have no other way of knowing---ie. by the time you tell them they no longer have tubes/oxygen monitors/etc. Yet, many, may have sensory issues that they might understand and appreciate better with the knowledge of their prematurity. TPE often mentions this when she talks about Paige being her own advocate and empowered by knowledge.While I am fully a 'knowledge is power' advocate, at this point, I can also see the other side. I have not spent a lot of time talking to my 3.5 year old twins about their prematurity because I don't want to pathologize them or make them feel bad about themselves."

I want to start the discussion with this statement...

Talking (or not talking) to your preemie about their premature birth is a personal decision. It is one that is made based on individual circumstances. I'd like to ask everyone to share their experience but please do not criticize others for their decisions.

I've covered this topic before. You can read the post here.

We have never sat Paige down and told her the entire story of her premature birth. Why? Because she has always known what happened. From the first doctors visit on, we have never sent her out of the office when we've given her history to the nurse/PA/med student/doctor, etc. She is present from the beginning to the end of the visit. She is an active participant in her care. She is not the one with sole control, but she does have a say in the decisions of her care. We feel that it is her life, her body and in turn it is her that has to endure the tests and treatment. And, for the past few years, it has been Paige that answers all of the doctors questions. If she isn't sure of an answer then she looks at me and either I answer or I give her a hint to spark her memory.

One thing I should mention... When Paige was young and it was time to give history, if I was feeling over emotional about her birth that day (it happened many times in the beginning) then hubby gave history (and I did it for him some days). I never wanted Paige to feel that emotion. Her birth, and subsequent NICU time, was hard for us but she doesn't need to see how much heartache it caused us all. As she got older she started asking questions about how we felt during that time. That was when I talked to her about the emotional side of it all, but never during an appointment.

We also never lie to her or try to soften the blow. If she is going to have a test and it may hurt, we tell her. We explain the test, forward and backwards, and tell her how long the painful parts may last. Even something as simple as an upper GI. When she was 4, and refusing to swallow the barium, the nurse said, "it tastes like a vanilla shake." . Paige was upset because hers did not taste like a vanilla shake. After I told her, "Paige it tastes like eating yucky chalk but you have to do it so the xray machine can see inside of your tummy." she drank it right up. Truth... that's all she's asking for.

If we are at an appointment that was just supposed to be a simple exam and the doctor decides to do a test where something may hurt, we let her decide (if possible) if she wants it that day or come back the next day. We never tell her that she can decide to NOT have the test, but she does have some control. After all, it is her body.

When she was 5, and very sick, we had to see doctor that was not her regular pediatrician. He had her lie down and told her that he just wanted to look in her nose. From behind his back he pulled out a swab and stuck it into her nose and into her sinus cavity (to check for flu). To say she freaked out would be an understatement. If she hadn't been so sick I am sure she would have sat up swinging. She was angry with me because I hadn't told her that it was coming. Even after I told her that I didn't know it was coming either, she chose not to speak to me for the entire day. She was devastated and I couldn't blame her. If a doctor had done that to me, I would have been upset too.

From that day on, Paige starts every doctors appointment with the following statement... "Please tell me what you are going to do to me, before you do it." And after seeing another doctor who jammed the back of her throat with the tongue depressor, she has now added, "I can open very wide so you don't need the stick." to her opening statement.

Before anyone judges us on how we've raised Paige, you should know that we came to this decision by hearing from adult preemies and how they felt.

Paige can talk to any adult or medical professional but as far as Paige talking to her peers about her early birth, that is a different story. She never used to have a problem with it. If you read my original post on the subject, it started out with me observing her talking to her classmates. She was fine with the discussion. That was during the last school year though and something seems to have changed. I think a boy in her class made fun of her and now she keeps it to herself. It's not that she is embarrassed about her early birth, but instead it seems as if she is learning where and when it may be appropriate to tell her story. She seems ok with that and so are we.

So, that's our story. And, as I said in the beginning, it was a personal decision to always include Paige when giving her history. It was one that we made based on hearing from adult preemies who had very different experiences. I hope everyone will share their feelings on this subject, including the adult preemies. After all, it is their voice that can give us a glimpse into the future.

Friday, November 16, 2007

Resilience and Perseverance

A few months ago Chris (Chris and Vic) had sent me an article about resilience, thinking it would make a great post. Although I agreed with her, I was dealing with Paige's mental health issues at the time and was drained and feeling a bit jaded. As I sat down to write the post, I honestly couldn't clear my head and come up with an example on resilience in our lives.

About that same time, Doc Rob took on Chris's question and posted a response that was incredible.

Both Chris's question and Doc Rob's post left me feeling a bit angry at myself that I couldn't see this in my child. She has gone through so much in her 9 years yet I couldn't see through her severe OCD and statements of thoughts of suicide.

That all changed this week.

During a trip to the mall, Paige asked if she could try the rock climbing wall in the sporting goods store. We stood below it, looking up at the giant. It was Mount Everest and it was calling her. I agreed to let her try it and off she went.

Right after I took this picture Paige started slipping. She called down to the teen aged boy holding her rope, "Ok, I'm ready to come down."

I was so proud of her. She had made it almost 2 stories. I knew her hands must have been hurting.

"Nope. You're not done. Keep going." the boy yelled back.

I'm now screaming on the inside, "She has mild CP. She's got to be hurting. Listen kid, do you know how hard it was for her to yell down to you. Now let her down!" But, I kept my thoughts to myself and just watched her.

She went up a bit further and, just as I snapped this picture, she slipped.

I yelled up to her, "Paige, you can come down now if you'd like." Paige said nothing but the look she shot me said it all. I could hear her thoughts, from 2 stories up. You're embarrassing me Mom!"

When she first slipped she looked shocked, but only for a very quick moment. Then she started to swim. Yep, swim. In mid air. I was sure you could hear her giggles all through the store. She swam back to the wall and proceeded to continue climbing Mount Everest.

I started to cry. It wasn't one of the movie quality cries either. I was sobbing. Ugly sobbing. It was at that very moment that I thought of Chris and Doc Rob. My precious baby girl is resilient and I was too blind to see it. I was living in the moment, dealing with only what was in front of my face. I failed to look back and see how far she had come. Not how far we all had come, but how far SHE had come. She has grown so much on her own, by her own perseverance and I missed it. Until now.

She slipped, swam and giggled a few more times.

And finally reached the top of the giant mountain.

Paige went on a forward journey that day. A 47 foot journey of perseverance. (and some slipping, swimming and giggling too).

Her journey led me to look back at how far she had come. I can now see the meaning of resilience and perseverance, by simply looking at her beautiful blue eyes.

Tuesday, November 13, 2007

Reporting The Story by Ruth Levy Guyer

I was first introduced to Ruth Levy Guyer's work when I read her book, Baby at Risk: The Uncertain Legacies of Medical Miracles for Babies, Families, and Society.

You can read my blog post about the book here.

She is also a regular on NPR's "All Things Considered".

Her recently published piece for is a must read. Her words echo what most of us have discussed here with regards to accurate reporting.

A big thank you to Helen Harrison for sending the link to the group.


Whenever I write about Paige, her life and her current issues, I get comments and private emails asking me why I am so negative.

I read other blogs and notice that whenever a parent writes about their child's current issues (or their potential issues) they feel the need to also add statements like, "but I love him/her anyway" or "it doesn't change the way I feel about my child.".

Who are you trying to convince? Yourself? Family? Strangers?

Are you trying to justify a decision?

Why don't I add these statements to my blog?

I do not need to justify my love for my children.

Monday, November 12, 2007

9 Years

Happy Birthday to our sweet Paige!

We loved you from the moment you were conceived.

The first time I held you, I thought my heart would leap from my chest.

Until you were born I honestly never knew emotion existed that was this strong. So strong that there are no words to describe the feeling.

You were born fighting.

As you got older, your personality quickly emerged.

You are a silly girl,

who loves the camera.

You never colored on the walls.

Your body was your canvas!

You sure do love animals

And they love you too!

You are a girly girl, through and through!

But you can be a tough chick too!

In your short 9 years you have been through a lot.

But your spirit always shines through.

You are a fantastic big sis!

You are such a courageous young lady.

You have captured the world with your eyes.

Oh your eyes, your beautiful eyes.

We love you so much Miss Paige.

We are honored to be a part of your journey.

Happy Birthday Miss Paige!

Wednesday, November 7, 2007

So Many Good Points

So often, there are many wonderful, thought provoking points that are made in the comments section on my blog. My fear is that they get missed.

I would like to bring forward some of the ones that were left on the post titled, "Dear Dr. Anwar".

These are not in any order. And, please know that I honestly felt there were many good points, not just the ones listed below. (Hopefully you can read them. Blogger seems to want to squish my words together, despite me telling it not to.)

I am starting with Chris's comment because I feel that she sums up my feelings and, as always, it is beautifully written.

Chris wrote:
"When I read all the comments, it gives me a "solemn" feeling. I have read such give-and-take before on this blog and on others, such as Neonatal Doc's, and have regarded it as "spirited debate". This time, however, I see and hear and feel that we are asking one another for tolerance." and "And we are asking one another for tolerance, each for her own perspective. It is solemn to me, even spiritual. Please, let us give one another this great gift."

I have seen a change in the comments section of this past post, compared to others. Many people were stating their points and then, after reading others comments, making a great effort to understand where the other person was coming from. Seriously folks, call me hormonal, but it was beautiful. I thank you for it too.

23wktwins'mommy wrote:
"I just don't want parents who opted to resuscitate feel that they loved their child less because they chose to give them a shot rather than save them from NICU and possible long term pain. I can see how a family who had seen a suffering child not want that for their own. The tough part is there is a spectrum, and some children have *better* outcomes than others. Living with either decision can be difficult, I'm sure."

Tammy wrote:
"I did feel guilty during the NICU for wanting him to live despite any future statistical outcome. I now know that there are no guarantees when it comes to the future. I don’t think doctors can list all possible outcomes but I think they should give you the facts. I wish premature births, especially micro-preemies cases were followed better. I definitely wish doctors (other specialists) beyond the NICU were more knowledgeable about prematurity. The public needs to know more."
I too felt guilty when Paige was in the NICU. It was our decision that put her there. But, over the years I have learned to let that guilt go. That's my wish for new preemie parents who are 2nd guessing their decision... let it go.

Terri w/2 wrote:
"I will never, ever waiver from believing that this decision was THE RIGHT ONE, and the neonatologist's decision to over-ride our decision was absolutely the WRONG one."

Anonymous (11/5 at 8:31) wrote:
"I had a note in my chart not to resuscitate before 26 weeks. My husband and I quickly changed our minds when I was in the delivery room at 24.1 weeks. Our doctor kept reminding us of our previous request but we demanded our daughter be resuscitated."

"In the end, we each make our decision and make our peace with that decision. But we should stop judging the decisions made by others especially if they differ with the ones we might have made."
"It is unclear to me why my choice must threaten someone who has made a different choice, unless they believe things would be better if we all made the same choices. One can read Orwell's 1984 and see what that kind of world looks like."
Kim's last statement echos my feelings. Why are we so threatened when someone makes a different choice than ours?
And finally...

Helen Harrison wrote:
"We need to take our heads out of the sand, and begin speaking out whenever the media or others try to gloss over, or misrepresent, the realities of preterm birth and its consequences. "

Yes! Yes! Yes! We are never going to be a society in which we can make decisions based on informed consent if we are never informed!

Tuesday, November 6, 2007

Doctors Unmedicated

If you have not done so already, head on over to Doc Rob's blog and have a listen to the first (and hopefully not last) podcast, cleverly called Doctors Unmedicated.

There you will meet Doctor Rob, who blogs under Musings Of A Distractible Mind, and Doctor Clay, formerly known as Dr. Clark Bartram of Unintelligent Design. (Brownie points to the first person who can identify Dr. Clay's 2 other blogs)

I have long loved the interaction between the 2 of them and it really shows in their podcast. A lot of fun and a great discussion on the current decision of the FDA to pull cold meds used for children.