Tuesday, July 29, 2008
"A small study of 21 infants born up to four months prematurely in the 1980s and weighing as little as 0.6 kilograms showed that by the time they were young adults all had lung problems, including 84 percent who showed areas of emphysema."
"The young adults in the study were born between 1980 and 1987 and were dependent on supplementary oxygen for more than 28 days during their stay in the hospital."
Thursday, July 24, 2008
I'd like to know if it's too early to make an independent decision to take my son to a neurologist. He is a 22 month old 27 week preemie who weighed 980 grams at birth. His apgars were 0 and 0 at all intervals - and the hospital spent 45 minutes resuscitating him. He is currently in the less than 3rd percentile for weight and refuses to take a sippy cup or eat decent quantities of solids. He seems to have some sensory issues, i.e. won't take our hand when walking, must get down on his knees to move from a 1" thick mat to the floor.
He was recently assessed by a developmental group and received the following scores:
Bayley Scales of Infant Dev II
Classification: Mental 18-19 months, Motor 16 months
Receptive Expressive Emergent Language Scale-3
Receptive Language: 12 months
Expressive Language: 15-17 months
Rossetti Infant Toddler Language Scale
Language Comprehension: 12 months
Language Expression: 17 months
No one has interpreted these results to us, though I have found some information on the Internet regarding the Bayley PDI score - with the mean score at 85 and mental retardation at <70.
Our speech therapist insists that he isn't anywhere close to mental retardation, but his score worries me. When I asked the gal doing the assessment if I should be concerned, she replied, "Nooooo. He's just going to be a 'different' kind of learner." I have NO idea what she meant by that!
Long story short, I'm wondering if it would be effective to move forward and see a neurologist who specializes in preemie development. Or, should I just wait until he gets older for a more valid assessment?
THANK YOU for all that you do with your blog, especially when you share your own personal stories. I cannot tell you how much you have helped us!
Monday, July 14, 2008
It took me a few days but I have finally figured out why. Whenever I am face to face with people, I tend to be guarded because Paige speaks before she thinks. Imagine how stressed I should have been. Paige in a hotel filled with blind people. I was waiting for her to start asking everyone what medical condition caused their blindness. She has been known to walk up to complete strangers and start asking questions.
But, from the first moments of our time together I felt safe with you. I knew you would not judge us if Paige let her curiosity show. Safety. What an incredible gift you gave to me Sarah. What an incredible gift you gave to Paige. She asked questions, you answered. You never made her feel bad for wondering.
Within minutes we were all laughing. Paige was completely drawn to you and your incredible spirit. So were Jason and I. So were many others. Your helpful nature came shining through.
During the ride home Tuesday night, I was already looking forward to our Friday visit. Paige didn't stop talking about how much fun she had and how much she loved spending time with you. But, it was then that I realized how much this world needed to change. That's when my emotions got out of control, very quickly. Our trip to Target was a huge step into your reality. Before that day I never even thought twice about many of the restrictions that you face on a daily basis. You are so amazing. You make it all seem so easy.
Friday came and I was so excited to be spending the day with you and Kevin. With my crazy emotions in tow, Paige and I practically ran down the hotel hallway to your room. Before we even got there we could hear your laugh. Paige smiled really big.
She had a blast that day. From playing with Loretta, getting to go with you to try out the possible currency options, seeing how your computer works, listening to your music, and even being turned into a blind child. She loved it all.
She learned some pretty hard lessons that day too. Seeing the reactions on the faces of sighted people was very difficult for her. But, being that she was in the safe environment that you created, she was able to learn from what she saw.
Sarah, I am forever grateful for the time we spent together. You are an amazing woman. I know you won't agree with me when I say that you are one of the most courageous people that I know. You would tell me that you are merely doing what has to be done. But, there are plenty of people out there who would never venture into unknown territory like you have done. You are an inspiration to many.
I could not end my letter here. There are a few more people that I need to mention.
I really enjoyed getting to know you. You had no idea about this but you said something to me that brought tears to my eyes. The first day we met you said that you liked my blog because I "tell it like it is" and you were glad that I was out there talking about the issues. You have no idea how much that meant to me to receive such validation from a former preemie. I can't thank you enough.
I had so much fun spending time with you on Friday. All that laughing we did while walking the dogs was wonderful! You made us feel so welcome. I look forward to reading your journal and getting to know you better.
Oh where do I begin? You are one very special person. You are one of the most open minded people that I know. You treated me with respect after finding out (thanks to Paige's openness) that our religious beliefs are quite different. That's a rare quality nowadays. I really enjoyed our lunch chat! Oh, and your sense of direction... could I borrow it? If it wasn't for you, we would have gotten lost on our return trip from Target and our walk back after lunch. I sure will miss your sense of humor too!!
With much love to all of you,
Sunday, July 6, 2008
Now on to my good news...
For those of who need to be brought up to speed: Our daughter has very severe OCD. Her compulsions have ranged anywhere from counting objects, harming her brother, breaking things, all the way up to harming herself. Her most recent battle has been skin picking, which has been going on for over a year. Her psychologist worked with her and finally suggested that we see a pyschiatrist for meds. It took quite some time to find the right mix. She ended up on Zoloft and Resperdal. Her psychiatrist only wanted her on the Resperdal for a short time but she has been on it for almost a year because the skin picking was out of control.
At the worst part of her ordeal she had over 100 open sores. We really thought that she would never be able to stop. Medicine wasn't helping, cognitive behavior therapy wasn't helping, rewards weren't helping... nothing. Then she was getting ready to go on an overnight trip with Girl Scouts and we were afraid they may not let her in the pool because of the sores. She fought her OCD very hard and was able to stop picking long enough that they open sores turned to scabs. She went on the trip and had a blast.
Well, her psychiatrist was now convinced that there had to be some sort of congitive behavior therapy that would work. He had us go back to her previous psychologist and ask her to work with Paige.
The psychologist gave Paige a rubber band to wear around her wrist and told her to snap it whenever she felt the urge to pick. I was very leary because Paige likes pain. I was worried that she would snap the rubber band excessively, causing welts. The psychologist said that it was ok if she caused pain. She said that Paige has to replace the pain felt during skin picking with another pain, in order to surpress the compulsion.
At the start of the program Paige had over 40 open sores (and over 100 scabs).
It's been about 3 months now and I am thrilled to report that she only has 4 scabs! They aren't any open sores!! Only 4 scabs!!! We are so proud of her. We are seeing her compulsions come out in other ways but they are not harmful and they are quite manageable for her. They best part is that she is proud of herself too. We are headed to the psychiatrist this week. He will be so proud of her too. The next step will be weaning her off the Resperdal. Please wish us luck! We've heard some horror stories about the weaning process.
Now on to my thin skin...
I have been jumping out of my skin with excitement over Paige's amazing accomplishment with her skin picking. Since I hadn't had a chance to post the good news on to my blog, I had quickly mentioned it on one of the on line groups I am on. I had planned on posting a quick update on my blog the next day but then I got suckerpunched. I received an email from someone telling me to read the post of a fellow blogger. A fellow preemie parent blogger no less. My jaw dropped when I read the post. This blogger was basically saying that OCD was the fault of the parent. I felt it was clearly directed toward me since it was me who was just talking about Paige's success.
My skin has thickened over the years. Between my strong feelings about comfort care and my lack of belief in a supernatural being, I have been called lots of names and been in the middle of a ton of controversy.
But, for some reason, hearing people say that Paige's OCD was my fault knocked me on my butt for a bit. I never saw it coming. I shouldn't have let it get to me, but it did. I remember walking away from the computer, head about to explode and there was Paige, right outside of my door crying. She was devastated because of the permanent scars her skin picking had left on her arms and legs. I was devasted too. Her skin used to be so beautiful, like a porcelin doll. Now her skin has hundreds of scars. As I hugged her on the floor I thought to myself, "how could someone be so hurtful and accuse me of being the cause of this?"
A few days went by and I was still devasted. A few more days... still upset about it. A week went by and I was still thinking about it. I was beginning to think that I would be stuck in that funk forever. In that dark time I received a few emails from people who saw what happened. I will be forever grateful for those people because it was their notes that pulled me out of the funk.
I always knew it wasn't my fault but it still hurt. Foolish me! I actually chose not to update my blog with the good news because it would look like I was retaliating against my fellow blogger. Boy was I being childish! Never again will someone rattle my cage that way again!