Tuesday, July 31, 2007

No Badge?

I've been absent for the past few days thanks to a last ditch effort to get in all of Paige's tests and specialist appointments before starting back to school.

Yesterday we headed to the children's hospital to have blood work and a sweat test to check for Cystic Fibrosis. Paige has chronic sinus infections (since she was a baby-yes I know the sinus cavities are not formed then-hers were) and the mucous is very thick. We are seeing a new allergist/immunologist who suggested testing for CF. Although her symptoms (very thin, constipation, chronic sinusitis, etc) can be easily traced back to her early birth, quite a few docs have now suggested we rule out CF.

So, we find ourselves at the lab (in the children's hospital), first thing in the morning. The tech (not sure if she is considered a phlebotomist) was rude. I really hate it when rude medical people work with kids. Her and another tech (who has absolutely nothing to do with our procedure) are chatting about their friends and the "wild night out" they had a few days ago. She never once introduced herself. I'm so put off (after only 2 minutes) that I look up to see her badge and make a mental note of her name. Yes, I was formulating my letter as I sat there and it wasn't going to be nice. One problem... no badge. I was surprised since the hospital has posters all over the hallways instructing you to make sure all personnel have a badge. So, I nicely (honestly) asked if they did away with their badge system. She got quite rude and explained that she slept at her mothers house last night and forgot her badge.

Now it's finally time for Paige to have the sweat test. Paige is an excellent patient. She does what she is told without any argument-no matter what is being done to her. Her ONLY request is that you tell her what you are going to do, step by step, before you touch her. I don't think it's too much to ask. Paige then asks the tech, "Can you please just tell me what you are going to do, before you do it?" The tech rolled her eyes at Paige and started to do the procedure-without explaining! ARGH! The copper plates are placed on her arm and the machine is turned on. Paige only flinches and the woman rolls her eyes again! Mind you, Paige has not even made a noise.

When the sweat test is over it's time to have the blood test. Paige sits on my lap, offers her arm (she is a pro-having over 100 blood tests) and asks, "Are you going to use a butterfly needle?" The tech doesn't even acknowledge Paige. When Paige sees the full tray of vials she asks (with a trembly voice) "do you have to take that much blood today?" The tech laughed at her! Paige asked her, once again, to please say each step out loud. The tech wipes down her arm and sticks her with the needle. No warning. Paige still sat there, without even flinching. When she was done the tech just walked out of the room.

No offer of a sticker for the best patient in the world.

No offer of praise for the best patient in the world.


How convenient that she wasn't wearing her badge. I'll still be making a phone call next week, when Paige is back in school and I can be free with my words.

If you are in the medical profession and can't stand kids... please stay away from the children's hospitals!

Sunday, July 29, 2007

Pediatric Grand Rounds

The latest edition of PGR is up and running over at Highlight Health. There are even some blogs that I have never seen before. It has been refreshing reading new writings.
Have a magical day!

Thursday, July 26, 2007

Too Much Praise?

Every so often the topic of "are we praising our children too much?" comes up in the media. I used to turn my nose up whenever I heard/read about the new studies. Too much praise? Is that even possible?

Older and wiser.... gotta love life's little lessons.

When Paige was born and we had to constantly work with her to reach even the smallest of milestones, praise was dripping from the walls in our house. We would encourage and bribe her to get through therapy and all of the "homework" that hubby and I had to do with her. When she would even barely respond, we would praise the heck out of her.

When she got a little older and started to work on large motor skills (crawling, standing, etc), more and more praise would be needed to get her going.

Then came speech. Even more and more praise was needed.

Fine motor skills.... "Oh Paige, that is the most beautiful purple scribble picture I have ever seen."

She needed the praise and we had no problems giving it to her. I used to think to myself, "those studies only apply to typical kids. What harm could there possibly be in giving her praise?"

Well, we've created a praise junkie.

We realized this a few years ago but had no idea what to do about it. We still don't. Something has to be done though. lol

She is finally trying to learn how to ride a bike without training wheels. If you live on our street, you already know this. Actually, if you live in our town you already know this. She can be heard screaming with frustration from miles away. She has been working on for quite a few nights now.

After a particularly hard night of trying, she was finally able to push one pedal and then get her second foot onto the other pedal. Then she freaked out because both feet were off the ground. But, she was so incredibly proud of herself, and so were we. We clapped along with her and told her "great job trying!"

The next morning she asked me "Are you proud of me?", to which I responded, "You did a good job last night getting both feet on the pedals. I know how hard that was for you." Paige's response, "Good? That's all I get, just the word 'good'? Wasn't I just the greatest you've ever seen?" After we went back and forth about how being 'good' meant something special and how we were so happy to see how proud she was for herself, she just stormed off yelling something about me not understanding how hard it was to ride a bike and how I should have told her that she was the greatest. Geesh.

The same sort of conversation can be heard after artwork too. She will say that she is going to color something, sit and scribble for 2 minutes and then expect us to call her Van Gogh. Now we just say things like, "I love all of the colors you used." or "Can you tell me what you were thinking about when you were creating this?" It's never good enough and she will say things like, "don't you like what I've made?"

She is attending art camp this summer, taught by a very accomplished artist (who also happens to be her piano teacher). After picking her up last week she told me that she is upset with Mrs. X because Mrs. X wouldn't let her do the art piece the way she wanted to. She went on to tell me, "Mrs. X said that some types of art are not open for free expression and have to be aesthetically pleasing to ones eye. Well it was pleasing to my eye but she refused to tell me that my art looked great. I don't like art camp anymore!" Oh boy.

If I could go back in time, I am not sure what I could do differently with that little girl who needed so much encouragement and praise to reach her milestones.

But I know one thing, I would have wiped my praise dripping walls sooner to avoid the hurt feelings she is experiencing now.

***** 7/26 UPDATE*****

Paige can now ride a bike!! Woo Hoo!! Hubby figured out that she was always starting from a dead stop. He told her to start rolling first and then put her feet on the pedals. It worked like magic. We took her to an empty parking lot and let her ride for a while tonight. She is so proud of herself. That's the best part! I love seeing her truly happy. I still have tears in my eyes as I type this. What a big day!!!

Sunday, July 22, 2007


According to Wikipedia, hope is defined as:

Hope is a belief in a positive outcome related to events and circumstances in one's life. Hope implies a certain amount of perseverance — i.e., believing that a positive outcome is possible even when there is some evidence to the contrary.

When my water broke (at 23.0 weeks), a neonatologist told us that Paige would never be normal if she was born before 26 weeks. When she was delivered at 25.5 weeks, I hoped he was wrong.

It was that hope and my insane need to prove him wrong, that drove me to do what ever I could to improve her outcome.

I hoped she would walk.
She did.

I hoped she would talk.
She did.

I hoped she would escape RSV.
She did.

I hoped she would escape hearing loss.
She did.

I hoped she would escape blindness from her ROP.
She did.

I hoped she would eat by mouth.
She did.

I had other hopes too. But, I had to learn to allow myself to alter them as time went on. I grew to respect the honesty of the above mentioned neo. He told me my options and gave me real information on outcomes.

Recently I was told that the information being discussed on my blog is taking away hope from new preemie parents. I respectfully disagree.

Being educated on the possible long term issues related to prematurity should not take away the hopes you have for your preemie. Knowing the possibilities allows you to be informed.

Let your hopes drive you. But don't stick your head in the sand and ignore information that may be beneficial in the future.

Sunday, July 8, 2007

Quality of Life

A study in one of the recent issues of Pediatrics states the criteria used when defining the 'quality of life':

"The arguments that most frequently were used to conclude that quality of life was deemed poor were predicted suffering and predicted inability of verbal and nonverbal communication."

After discussing the topic of 'quality of life' on one of my groups I realized that it is far from cut and dry in the medical world. A few people had shared their ideas and I am hoping they will share them here too.

When parents are faced with making end of life decisions, they base it on quality of life. In order to do this, you have to have some idea of what that means to you.

In order for the doctors to advise parents, they too must have an idea of what their definition is to the quality of life question.

Defining 'quality of life' is not uniform. Try searching "quality of life definition". You will get answers that are across the board.

So, how do we begin to define it? Is the answer a personal one? And, if it is a personal one, then how does a doctor counsel his/her patients/parents while keeping his/her own definition out of the equation? Is that even possible?

Wednesday, July 4, 2007

Mental Health Grades by State

The National Alliance on Mental Illness (NAMI) has released a report on the state of the mental health system in the United States. They used specific criteria to produce grades for each state.

How does your state rate??


Unfortunately I live in a state that received an "F". It was no surprise to me. Thankfully we have an excellent team in place for Paige, but this was no easy task. There is a shortage of docs and basically no programs in place to help the kids if they are not hospitalized. There is not even something as simple as a social skills playgroup for kids.

I wonder what it's going to take to raise awareness and find solutions.

Why is it so uncomfortable for people to discuss mental health issues?

Sunday, July 1, 2007

Pediatric Grand Rounds

Please visit Shinga for the latest version of Pediatric Grand Rounds. As always, Shinga provides us with tons of great information. There are even a few blogs that were new to me, that I have been enjoying.


Below is a list, according to my site meter, of how people happened upon my blog based on their search criteria.

* preemies and brain bleeds and statistics
* adult micropreemies
* preemie metabolic syndrome
* preemies and oral aversions
* behavior problems and preemies as they get older
* preemie hearing sensitivity
* micropreemie ostomy bag
* chance of having preterm birth again after having full-term pregnancy in between
* TPN to tube feeding in micropreemies
* preemie long term effects 28 weeks
* problems in school age preemie

The list speaks volumes.