Life with The Leivas

Friday, September 19, 2008

Night 1: No more pacifier

So just to keep myself extra busy while Mike is in the field I decided that this would be a great time to take Olivia's pacifier away. Olivia gave up the bottle promptly the week of her first birthday but the pacifier wasn't so easy. After her first birthday she was down to only using the pacifier for naps, bedtime, and trips in the car. There was one excuse after another to let her hang onto her pacifier a little longer--the 4 day drive/move here to Washington, my return to work and Olivia starting daycare, etc. Then I convenced myself it would happen right after her 2nd birthday but then we were flying to Hawaii. No more excuses! Sieze the moment! I ordered Olivia a replacement comfort item, a Nocturnimals Owl that lights up when you press it's foot. It arrived earlier in the week but I wanted the first pacifier-free night to be a weekend night so that Olivia wouldn't be too tired at school the following day. Tonight after her bath I let her open her package (Olivia loves getting packages and mail) then I explained that she could only have the new owl if she was a big girl and got rid of the pacifier. She wasn't happy about it but she really liked the new owl. At first she put up a little fight but then she continued to settle down into her bedtime routine. We snuggled on the bed with the owl and I read her a book. Then I went to tuck her into bed without the pacifier. She was still happy with her new owl and she gave me a goodnight kiss and said goodbye. That was exactly 40 minutes ago and she's still not asleep. She's not really crying but she's just sort of moaning. So far, so good. We'll see what time we all go to bed tonight....

Crusade Update: The Direct TV situation

My Sister has television! The Direct TV technician finally came today! She did have to spend over 3 hours on the phone with a customer service representative WHILE the technician was repairing the equipment. Lets hope that things are all settled because the customer service representative's last comment was "I think everything is correct now, but if by chance your next bill is for $249 give us a call right away". As if someone wouldn't call right away if they got a cable bill for almost $300 and they hadn't even had tv service for over a month!

Wednesday, September 17, 2008

My Sister's Crusade: War with Direct TV

My sister, Karen, has 2 adorable boys. My nephew Braden is almost 3 and Hunter is almost 2. She goes to school full time and her husband is away often for work. She's a great mom and I'm so glad that I have her to go to for advice about parenting! This morning on my way to work I had a long talk with my sister. She was venting about some of her frustrations with Direct TV. My sister hasn't had cable service since August 3rd!!!!! I would absolutely die, I love my tv time! Karen complained that she'd missed the entire olymipic games as well as coverage of two major hurricanes (this is particularly relevant to her as she lives in southeastern Louisiana) and the end of Project Runway. At this point she's resorted to calling the company as well as technical support (responsible for scheduling maintenance) on a daily basis. She's got both numbers memorized. I absolutely don't understand how companies are able to get away with providing such horrible service! I was watching The View earlier this week and apparently Whoopie Goldberg and Sherri Shepard are having the same issues. At least they can complain about it on national television and get thir issues resolved. Here's a link to a video clip where they vent about some of their frustrations. It couldn't come at a better time in light of my sister's situation.

Hot Topics 9/15: Mad Women Video

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MPS/Sanfilippo Syndrome

In October, 2008 Olivia was disgnosed with MPS III or Sanfilippo Syndrome, type B. MPS stands for: Mucopolysaccharidoses. It is a genetic lysosomal storage disease (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.

Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.