Monday, April 30, 2007

Who? Me?

Lori, over at Losses_and_Gains, has tagged me for a Thinking Blogger Award.

When I started my blog, I stressed that my goal was to make sure that everyone (parents, media, docs, etc) had accurate information on the long term outcomes of prematurity. I felt strongly that parents deserved this information if faced with an early birth.

When I "met" Lori I was shown another face of prematurity. Imagine being told, while being faced with the impending early birth of your babies, that they would not survive if born (at 23 weeks). You choose comfort care and watch your babies pass on only then to hear of many stories of 23 weekers who did survive. Despite my own feelings on babies born that early, Lori deserved to know that there were babies born as early as hers that had survived.

Accurate and honest information.

Not a day goes by without me thinking of Lori.

Thanks for sharing your story with the world Lori and thanks for the award.

Here are the rules...

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,

2. Link to this post so that people can easily find the exact origin of the meme,

3. Optional: Proudly display the 'Thinking Blogger Award' with a link to the post that you wrote

It's not easy to narrow down my list to only 5. There are many good blogs out there.

The first few have been nominated before, and for good reason.

Clark not only gives my brain a work out, he should receive an award for all of the work he has done with PGR.

Flea has taught me a little bit on a lot of subjects.

Buddhist_Mama. I've spent some time reading her blog and am finding the subject matter quite interesting.

Addicted_to_Medblogs. I just found this site and have been fun reading the posts. Being addicted to medical blogs myself, I can relate. Love the lawyer jokes on her site too!

Premature_Labor is written by a mom of a premature child, who is also a former preemie herself. A great insight to both sides.

Like I said above, there are many blogs that I read and value. I wish I could list them all.

Also, please do not judge a blog based on my *very short* synopsis. I wish I could write longer descriptions on each of them but I am being pulled in a few directions lately and my head is not in the game. Please visit the blogs I listed and enjoy.

Finally, to Lori, you have forever touched my life. Thank you for sharing your story and including my blog in your thoughts.

Wednesday, April 25, 2007

Free On-Line Seminar on Cerebral Palsy

There is a free on line seminar on the subject of:

The Biological Basis and Treatment of Spasticity and Movement Disorders Associated with Cerebral Palsy

I've participated in quite a few of the seminars, offered through Exceptional Parent Magazine, and have always come away learning a little something.

Saturday, April 21, 2007

Sensory Issues and Preemies

The "sensory issues" label is known by a few names...

Sensory Integration Dysfunction

Sensory Processing Disorder

There is a comprehensive symptom checklist here.

There is some controversy over whether or not this "disorder" is real. I can tell you first hand, beyond a shadow of doubt, it most definitely exists and can be debilitating for both the preemie and his/her family.

When Paige was a baby she cried almost every waking moment. We asked docs and they would just tell us that she had an underdeveloped nervous system. It was so bad at times that, as soon as hubby came home from work, I left the house. We felt incredibly bad for her. Nothing helped. She hated being swaddled. She hated being hugged and would freak out with any sudden noise. You may as well forget about cutting her nails.

As she got a little older the crying lessened but did not go away. Her OT taught us how to do The Wilbarger Brushing Protocol.
I was skeptical (I don't tend to buy into therapy that is "outside of the box") but was willing to try anything. It helped a lot but I could still see that she was very different than other babies I had been around.

We continued to ask docs about her behavior but were always told non-helpful statements like, "Oh she's a fighter. That's why she is alive."

During her toddler years it became very apparent that she had major issues. We could not hug her unless she hugged us first. We could not touch her unless we warned her first. She would smear food all over her body. She jumped constantly. She could not sit in a chair and eat, she had to hop while eating. Cutting her nails was a nightmare for all involved. If she was playing outside and there was mud anywhere within her sight, she would smear it all over herself before she could play. Noises... I literally still get tears in my eyes when I think of the pain (yes... pain) she experiences when exposed to noise. One day her and I were shopping. I was pushing her in the cart and I was singing to her (she was about 3-still was very delayed in speech) when a very long announcement was made over the store's loudspeaker. She immediately covered her ears, started crying and said, "mama help me". I took her out of the cart, covered her ears and we sat on the floor crying together.

At every single doc visit (pediatricians, specialists, therapy, etc) we mentioned our concerns. Not one person mentioned sensory integration dysfunction. I felt helpless. No matter what research I did on my own, I could not find one bit of info that applied to Paige.

It all changed one day when my Dad and I took her to the mall. She was about 3 1/2 years old. She was jumping along side of us when her hop turned into a sprint. My Dad reached out and grabbed her shoulder. No big deal right? One problem. He forgot to warn her that he was going to touch her. She immediately dropped to the ground and started scratching her face into a bloody mess.

That was it. No one was going to dismiss my concerns anymore. I spent hours on line, every day, trying to find a name for this monster that was had a grip on my daughter. I joined a parent based support group where most people used to put their child's alphabet soup of diagnosis in their signature line. I noticed the letters "SID" in one post. Knowing the child had not died of sudden infant death syndrome, it intrigued me to search with those letters. Up popped a few sites about sensory integration dysfunction. I cried while reading the symptoms. My daughter had most of them.

I found a local OT who specialized in SID and begged for a quick appointment. After our initial consult she said that Paige's case was the worst she had ever seen. I sure wasn't surprised. She put her in a swing, like the ones used with Autistic kids and Paige smiled the biggest smile I had ever seen. After the swing she put Paige in a weighted vest (only 1 pound weight). Paige actually SAT in a chair through the rest of the first therapy session.

Below is a list of her symptoms at the time of the start of therapy (she was 3 1/2 years old)...

sensitive to loud noises
hears well but does not listen well
shouts or screams for no apparent reason
sometimes acts as if in her own little world
very noisy child
likes to press ears against TV, speakers
likes to listen to loud music when she is in control of the volume
cups hands over ears with sudden noise
hates haircuts, hair washing, hair brushing, cutting nails
bangs hands on tables and walls to create noise
cannot sit still
high tolerance for pain
always removes her clothes
stuffs too much food in mouth
dislikes being touched
delayed in toilet training
heavy walker, stomps her feet
rejects being held unless it was her idea
loves VERY strong smells
flaps hands around eyes
rolls head from side to side
loves playing in water (abnormal attraction to it)
enjoys things that spin or turn
loves to be spun around
everything must be in order (shoes all in a row, etc)
loves to open and close doors and drawers
loves mirrors
can't sleep unless blanket is very tight
smears food or non edible liquid items on arms and legs
trouble going up and down stairs
turns upside down many times during the day

We continued in therapy for a few years. I can honestly say that I do not think there is a cure. I've heard some people tell stories that they were cured after a few sessions. I don't believe this is possible if the child has true SID. But, what therapy did give us was a resource of ideas to help Paige be able to function in the world. That's the key. I've had friends and relatives read over the symptoms and say things like "oh, I have some of those symptoms and I don't need therapy." I feel that the determining factor for us was that SID completely interfered with Paige's ability to function in society. Completely.

She is 8 now and still has major sensory issues. As a matter of fact, she still has all of the issues that were listed above. But, she can now function around them. Most of the time.

There is more information out there on SID now, than there was when Paige was little. I am so thankful for this. For years, educating parents and docs about SID was a passion of mine. I passed out information sheets to every doctor that we visited. A few times I had docs say, "I just had a parent asking me about this." or "I just had a parent who was concerned about her child because of some of these symptoms."

If you are reading this, as a parent of a preemie, there is hope. If you can find a SID certified OT, that would be a great resource for you. There are some wonderful books that have been written about this disorder. I have only read the books by Carol Kranowitz but have heard parents speak of other authors who have written on the subject and they felt their books were helpful. Please feel free to ask questions here if you would like some ideas of what has worked for us. If you don't feel comfortable doing so, please feel free to email me privately.

If you are reading this and you are a physician, please know that there are an incredible number of preemies that are affected with this monster. Inform the parents that they are not imagining it all. Let them know there are others like them. Inform new parents of preemies on what to look for in the future. The earlier the intervention, the better.

Tuesday, April 17, 2007

You Bought What?

If you are new to my blog and haven't read about what hubby felt he "needed"... start here.

I thought I'd share some valuable lessons I've learned lately.

When hubby says, "I think a plasma TV would look good on our bedroom wall.", it means that he has already thought it out, researched it and is fully intending to buy it. And, by simply telling me what he thought would look good on our bedroom wall meant (in his testosterone filled mind) that he discussed it with me and since I did not say "no, absolutely not, under no circumstances do I want you to spend that kind of money" must mean that I was on board with his decision.

Then, when hubby says that a new computer would be good so it can be hooked up to the plasma and act as a large monitor, it means, once again, that he has already put his plan into action.

Last week, I walked into the bedroom and found hubby ordering our new computer without my knowledge. I was a little upset (OK, maybe VERY upset. Um, ok, maybe it would have been good if "mother foxes" was already in my vocabulary-I may not have had to use its counterpart.).

See, even after 16 years of being together, I learned a lesson. When hubby casually mentions something, it means he is going to do it!

Here comes the humorous part...

We were in the parking lot of the store, after buying the plasma, when karma decided to remind hubby that life can smack you upside the head (especially if you upset your wife). Hubby lifted the plasma by himself (you didn't actually expect me to help him, did you?) into my car (I have the SUV) and tried to push it in. It didn't go. It didn't fit in my car!!!!!

I stood at the back of my car laughing hysterically. I am sure people could hear me from miles away. Hubby shot me "the look" but his face was red, from lifting the T.V. so it only made me laugh harder. He gave me "the look" again but by now there was no stopping my laughter. He tried saying,"Now is not the time for this." but to me, it was clearly the time. I was laughing so hard that I actually thought I may pee my pants.

Since we had taken 2 cars (so the kids could ride home-they wouldn't have fit in the SUV with the T.V.), Paige was already in hubby's car. She heard me laughing and saw what was happening. She started laughing too.

I got "the look" again. Nope, still didn't stop me.

"This is NOT funny!"

Since it really was hysterical, that line didn't work either.

I could not stop laughing.

Hubby finally decided to tilt the T.V. and prop it up.

My fun was over. (until I got in the car and Paige and I laughed about it all the way home-hehe)

Sunday, April 15, 2007

Mommy, Tell Me A Funny Baby Story

Paige first asked me to tell her a funny baby story when she was around 4 years old. I can vividly remember staring her in the face and scrambling for something to say.

What was running through my head...

Funny baby story? Were there any funny moments? She had to do something cute and funny in between her screaming every waking moment, therapy 5 days a week, all of the medical tests and doc appointments. Nope. Nothing at that age.

Toddler years... there has to be something there in between the 5 hours a day of leg stretches to avoid surgery, therapy, screaming from sensory overload, choking on food. Nope. Nothing there.

3 years old... has to be something I can remember from then. Nope. Oh wait... I know what I can tell her.

Well, Miss Paige, I can definitely think of a time when you made me laugh.

One day I was on the phone with a friend. I was sitting on the couch and you were sitting on a little chair in front me, watching television.

After I got off of the phone I asked you if you wanted some lunch. When you turned around I was shocked to see purple marker all over your face! I asked you, "Paige did you color on your face?". With the most serious look on your face you said, "no". Since it was just you and I in the house and since you still had the open marker in your hand, I knew who colored on your face. I picked you up and took you into the bathroom so you could see your face in the mirror. As we were walking into the bathroom I asked you again if you colored on your face and you again told me "no". When I turned on the light and you saw your face you looked at me and then looked back in the mirror and said, "Oh shit!"

(we are still wondering where she learned that word)

Over the years Paige has asked hubby and I to tell her a funny baby story, more times than I can count. We have a few stories that we tell her, but there aren't many. I'm sure funny and cute things did happen, we just can't remember them. Living with post traumatic stress and the rapid pace following the discharge from the NICU, I guess there wasn't any room in our brains for funny memories. I really wish I had started a journal back then.

On a side note... thank you to all who wrote comments and sent emails in response to my last post. I appreciate every ones kind words of understanding and encouragement.

I wish the medical community could live in our world for a week. I wonder how fast they would try to figure out what causes the severe mental health issues that older preemies have if they saw what my daughter (and many other preemies) struggles with every day.

Friday, April 6, 2007

My Fear

(well, one of them anyway)

My fear is that Paige will never live independently.

There are many degrees to the impact that prematurity has on a child. Those who have children who are so impacted (quad spastic CP, severe mental retardation, etc.) come to realize, early on, that their child will not live independently. (I'm not by any means dismissing the struggle)

Then their are those of us who have a child that is on teetering on the fence. Depending on which way they land as they grow, will determine if they can live on their own.

My child is very intelligent. She can dress (as long as there are not buttons or hard snaps) and feed herself. If you met her on the street you would most likely not realize what she struggles with inside. Her physical issues are hard to see.

So, why the fear?

Her mental health seems to be deteriorating. Her anxiety and OCD are out of control, despite therapy (and meds-which we are still trying to find the right one). Her "thoughts" consume her days. They make her do things that are not normal. Her thoughts tell her to hurt her baby brother, so she does (last one was 4 days ago). We were just told that she should never be left alone with her brother, even for a split second. She agreed with the psychologist and told us that the reason is because her thoughts are telling her to harm him on a daily basis, even when she is happy. Her thoughts tell her to hurt herself. So she does. The kids at school call her weird.

My precious little girl is slipping. I want her back.

I've been crying a lot the past few days. Those who know me would be surprised. I am not a person who cries easily. I am a fighter. But, when you are told that you should not trust your own child, for the next few years-at least, to not hurt her brother or herself, it slaps you down.

I'm not giving up on her. Hubby and I work hard to help her become someone who will be able to fit into society.
But nonetheless, I have this fear.

Monday, April 2, 2007

Post-Traumatic Stress Disorder

This post has been in my drafts folder for a few weeks. I started it at a time when I was not really in the right frame of mind to be writing about stress. For the moment, my head is a little clearer. But, knowing the stress level in my house can change in an instant, I figured I better get this one out there before something changes.

There are a ton of websites out there devoted to PTSD. I pulled the following symptom list off of Medline.

Symptoms of PTSD fall into three general categories:

1. Repeated "reliving" of the event, which disturbs day-to-day activity
Recurrent distressing memories of the event
Recurrent dreams of the event
Flashback episodes, where the event seems to be recurring
Bodily reactions to situations that remind them of the traumatic event

2. Avoidance
Inability to remember important aspects of the trauma
Lack of interest in normal activities
Feelings of detachment
Sense of having no future
Emotional "numbing", or feeling as though they don’t care about anything
Reduced expression of moods
Staying away from places, people, or objects that remind them of the event

3. Arousal
Irritability or outbursts of anger
Sleeping difficulties
Difficulty concentrating
Exaggerated response to things that startle them
Hypervigilance (click here for a definition)

Let me start by saying that I was never officially diagnosed with PTSD. I was never medicated for it either. But, boy did I ever need it!

When Paige was in the NICU I didn't get to see her every day. We lived 90 minutes away and only had one car (I gave up my company car knowing I was not going back to work). I sat at home in a constant state of anxiety. When the phone would ring I would almost lose consciousness from the fear that it was the hospital on the other end. During the times when we would go see her , on the weekends (we stayed near the hospital on the weekends) or sometimes at night, I would just sit and stare at her. Not only were the monitors incredibly loud (40 bed NICU) but the helicopter landing was above the NICU. Every time we went up to see her, she had a different tube or wire attached to her. We would sit there for hours.

How did I cope? Tylenol 3 with codine. Yep, I admit it. I hardly used the meds after my c-section but sure abused them after I recovered. My doc had no problem giving them to me and I sure had no problem taking them. Right before Paige came home (after 78 days in the NICU) hubby started questioning my intense need for them. By that time I was mostly taking them at night to help me sleep but who the hell was he to tell me that I had a problem? (ummm, my caring husband, that's who) Every time I tried to fall asleep without them, I could hear all of the NICU noise. I would cry myself to sleep.

After Paige came home I was in a constant state of having to be in control in order to silence my anxiety. I questioned everything that was told to me. It was made worse when I caught a dosing mistake on Paige's meds. That put me over the deep end. I felt that I needed to double check everything or Paige would die. I couldn't leave her with anyone for fear that something would happen to her and I wouldn't be there to save her.

It's no wonder why hubby and I were struggling to connect!

One day Paige's OT told me that she had heard about how preemie parents were more at risk (than parents of full term typical kids) for PTSD. I guess I saw it as a sign of weakness. "That's not me. Look how in control I am." On the inside I was drowning. At the time there wasn't much on the internet so I had no way of being validated for the way I was feeling.

The stress was doing a number on my GI system. We couldn't go anywhere because I didn't know when I was going to need to go to the bathroom.

The stress was doing number on my muscles too. I hurt everywhere.

I was not living. I was simply existing.

Like I said above, I was never medicated for it. Had there been others (on line) who were admitting to suffering from PTSD, I would have jumped in and said, "me too." and gotten help. But, no one was talking about it. I am so glad that people are opening up and getting help now.

I am doing fine now but every once in a while it creeps up on me and takes a hold of my world.

PTSD has been discussed on a previous post titled Silence. Please check out the comments section. Many people took the time to discuss their own situations and provide links to research.

Sunday, April 1, 2007

Who's The Fool?

Ahhhh, springtime.

The sun is warm. The flowers are blooming.

The kids can finally play outside.

And, to top it all off...

I get a notice from Google that they will print, for free, any and all of my Gmail messages for me, even pictures! Woo Hoo! Where do I sign up? I have a ton of research that I never get around to printing. You mean I could have Google do it and I won't have to burn through my supply of paper and ink? Their generosity never ceases to amaze me!

But, just as the bubble popped on my poor son, my bubble burst when I found out that Google just pulled off the biggest April Fool's joke ever.

Who ever started this stupid tradition anyway?