Wednesday, February 25, 2009

Tears of Sadness-Tears of Joy

The past 24 hours has been incredibly emotionally draining for me. Yesterday was bad. Really bad. The fear of what the future will hold for my child is overwhelming at times. I fear what will happen when I am not around to protect her from herself. I am not a person who cries much. There hasn't been time for it. I made up for lost time last night. Thank you to all of you who reached out to me via the blog, email and Facebook.

The morning came quickly. Opening my eyes and facing the day was difficult today. I wondered what kind of mood Paige was going to be in and was formulating a plan on how to handle her when I heard her getting up. She came in to my room, rubbing the night out of her eyes and skipping.

"Mom, I am really sorry for last night. I don't know what was the matter with me. Thank you for checking on me during the night."

It was a new day for her and she was happy. The night had healed her spirit. For this I was thankful but was left wondering why the night hadn't healed my spirit.

I put on a brave face and started the day knowing what was coming... and ice skating field trip.

For those of you who need to catch up... Paige's eye doc told us to not allow her to do any sports where she might hit her head since she is at risk for retinal detachment. When the field trip came up, I was hesitant. It was a big risk in my opinion but after talking to several people, it was brought to my attention that I may be a tad neurotic. I decided to take her.

For weeks Paige has been looking forward to ice skating. She had never tried it before but was so excited that she couldn't wait to get out of the house. She was sure that she would master the skills she needed, in a matter of one day. I tried telling her how hard it was. I used to skate and understand the frustration that comes with learning how to stay perpendicular to the floor.

Not only was I worried about her eyes, I was worried about her self esteem. Her legs are not strong. Her ankles are not strong. Geesh... we are talking about a child with mild CP after all.

We dropped off Tyler at Grandma's and headed to the rink.

I tried giving her a pre-skate pep talk which involved the usual parent gibberish. "Now don't forget that you've never done this before. You are going to fall. A lot. But, please be proud of yourself for trying. I'm proud of you already."

"Mom, I had a dream last night that I could skate well. It is giving me inspiration."

Gulp


We ate a yummy lunch at the rink before skating.





The skates are on!



First steps on the ice


I took this video with my digital camera and the battery was dying (I think that's why the audio doesn't match with the video). This was 20 minutes into skating.


Then came my tears of joy. Watch her face! She is so excited!! I stood on the side sobbing. And yet again, it was an ugly cry. hehe I was finally relaxed and happy with my decision to allow her to go skating. I fought the neurotic preemie parent side of my brain and I was glad that I had!


Be sure to watch the very end to see what happened.


video


Yes, my worst fear was realized. She hit her head! She freaked out. I almost threw up. She proceeded to scream for what seemed like an eternity. When she calmed down a bit I asked her if she was crying because she was really hurt or because she was afraid for her eyes. Her response (given through increased tears), "I'm afraid you are going to make me leave!" That's my tough cookie!!



video

She ended up skating and falling for the next 90 minutes. She was awesome! She had a blast and left feeling on top of the world.

Oh the tears sure have been flowing over the past 24 hours. I'm just thankful that, for today, they were tears of joy!

Tuesday, February 24, 2009

"You're Lucky"

Whenever people hear that Paige has escaped some of the big medical long term impacts related to prematurity I hear, "you're lucky".

Well tonight I am sitting in my room crying.

Paige is in her room crying.

Freaking out.

Screaming.

The meltdown started at bedtime and is still going on. She lost it. She is having thoughts that the police are going to come take her away. I don't even know where she got that thought from. She just came in my room, screaming at me that she is having thoughts that her brother, father and I are going to die. This hasn't happened in such a long time.

I can't hug this away. I tried tonight. Believe me I tried. She cries harder.

So, to all of you who think we are so much better off because prematurity did not leave it's mark on Paige's lungs or her muscles or her intelligence. Think again.

My baby is suffering right now and I can't fix it.

I don't feel so lucky right now.

Tuesday, February 17, 2009

Doctors

In the 10 years since I've become a parent, I have not managed to learn how to co-exist with Paige's doctors.

I try.

I try really hard actually.

Meeting new docs/specialists usually causes great amount of stress for me. I go into the appointment with an open mind. I try to remember that my knowledge may come across as arrogant. I don't mean to come across that way. I also realize that my skeptic nature comes out, no matter how hard I try to hide it.

It's not that I think that doctors are not capable of treating my child; there are many intelligent doctors out there. Unfortunately, I haven't come across too many that have experience with preemies and the long term issues that plague them. Most all of them have either dismissed our concerns (only to be wrong later) or are surprised when they see how intelligent Paige is and then they decide that "she looks too good to have any issues.".

For the past 2 1/2 years we have been using a GP, for all of us. Without getting into too many details, we are changing docs and the kids will now be seeing a pediatrician. I need to set up an appointment to meet this new doc, before I bring in the children.

I will, once again, try to close my mouth and smile. I'll try hard. I will try not to show how jaded I've become and try to give this new one a chance.

I'm already stressed about it and I haven't even made the appointment.

Tuesday, February 10, 2009

Impact of Postnatal Steroids...

Impact of Postnatal Corticosteroid Use On Neurodevelopment at 18 to 22 Months' Adjusted Age: Effects of Dose, Timing, and Risk of Bronchopulmonary Dysplasia in Extremely Low Birth Weight Infants


OBJECTIVE. Postnatal steroid use decreases lung inflammation but increases impairment. We hypothesized that increased dose is associated with increased neurodevelopmental impairment, lower postmenstrual age at exposure increases impairment, and risk of bronchopulmonary dysplasia modifies the effect of postnatal corticosteroid.


CONCLUSIONS. Higher steroid dose was associated with increased neurodevelopmental impairment. There is no "safe" window for steroid use in extremely low birth weight infants. Neonates with low bronchopulmonary dysplasia risk should not be exposed. A randomized trial of steroid use in infants at highest risk is warranted.

***I never know what I am allowed to post, legally. So I am only posting the objective and conclusion. If you click on the title it will take you to the abstract. I don't have access (can't afford-lol) to the entire article.

What I find interesting in the Conclusion is the statement, "There is no "safe" window for steroid use in extremely low birth weight infants."

Sunday, February 8, 2009

Too Much Praise-Revisited

It's been a year and a half since I posted this topic. We are still dealing with it in our house, now more than ever. I thought it was worth revisiting.


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.


***** 7/26/07 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!!!

****** 2/8/09 UPDATE*****

The constant need for excessive praise has not diminished. Now that we homeschool, the issue is in front of us daily. If she completes a math problem correctly, she expects me to jump up and down in a fit of pure joy. Me telling her, "good job" is not only NOT good enough, it sends her into a bad attitude and causes her to stop trying hard in math. The same goes for anything she does.

The other day I caught myself over praising Tyler when he was showing me that he knew his letters. I stopped right away and simply told him "great job buddy." As soon as I walked away from his easel Paige swooped in and started praising him over and over again. It was so over the top that Tyler yelled at her to "move sister!".

It may seem silly to some people that too much praise can be detrimental. But I wonder, as she gets older, where will she turn to find that praise? If I can't help her to understand that she doesn't need constant praise in order to motivate herself to do something, how will she succeed in life?