It's no secret that I'd love an iphone! Mike gave me his itouch several months ago and I LOVE it. I use it constantly. Really, I do. It drives Mike crazy. He completely regrets ever letting it out of his hands. Peter and Olivia both enjoy some of the kid friendly apps. I have a couple of cartoon episodes on the itouch that the kids watch when we're stuck in waiting rooms. Peter even knows how to play simple games on the itouch and he loves playing with it during Olivia's therapy appointments. But I digress...
Today I learned that there's a Confession app. I'm not kidding, it's approved by the Roman Catholic church. Here's a link to an article about it: Holy App!
At first I thought it was completely rediculous but then the more I think about it the more it seams acceptable. Is my initial shock just wearing off? I know that I can never remember the 'Act of Contrition', how is reading it off an ipod any different than reading it out of the prayer book. Thoughts?
Happy Chinese New Year! Welcome to the year of the Rabbit. To be honest we're really not very into astrology around here. But when we were at Epcot during Olivia's Make A Wish Trip I noticed these adorable Chinese zodiac t-shirts. I got them for the kids because the descriptions were surprisingly accurate for each of their personalities. Although the kids were not very happy that I interrupted 'Mickey Mouse Clubhouse' TV time to try and take pictures, they refused to look at me.
Olivia was born in the Year of the Dog. "Nobel and true, the dog will fight to mend all that is unjust. A loyal and faithful friend, they will make any sacrifice for the sake of another. A hard worker, they will never abandon their post. A genuine listener and confidant, the Dog is the keeper of all secrets. "
Peter was born in the Year of the Rat. "Full of charm, the rat is the object of admiration. A true sentimentalist, family and friends remain close to their heart. Their intellect and foresight bring success with money and work. Rats are constant seekers of new adventures and travel."
And in case you're curious about what the Year of the Rabbit will bring, here's the horoscope for the year. A placid year, very much welcomed and needed after the ferocious year of the Tiger. We should go off to some quiet spot to lick our wounds and get some rest after all the battles of the previous year.
Good taste and refinement will shine on everything and people will acknowledge that persuasion is better than force. A congenial time in which diplomacy, international relations and politics will be given a front seat again. We will act with discretion and make reasonable concessions without too much difficulty.
A time to watch out that we do not become too indulgent. The influence of the Rabbit tends to spoil those who like too much comfort and thus impair their effectiveness and sense of duty.
Law and order will be lax; rules and regulations will not be rigidly enforced. No one seems very inclined to bother with these unpleasant realities. They are busy enjoying themselves, entertaining others or simply taking it easy. The scene is quiet and calm, even deteriorating to the point of somnolence. We will all have a tendency to put off disagreeable tasks as long as possible
Money can be made without too much labor. Our life style will be languid and leisurely as we allow ourselves the luxuries we have always craved for. A temperate year with unhurried pace. For once, it may seem possible for us to be carefree and happy without too many annoyances.
Settle in for a long Olivia Update! It's been about 18 months or 560 days since her transplant (so many days that I had to google a date counter (www.timeanddate.com). So lets get on with the breakdown. Overall we've noticed some really positive things going on with Olivia lately. We're cautiously optimistic that these are more permanent improvements rather than random one-time occurrences. Sanfilippo syndrome is sometimes called Childhood Alzheimer's. It's a description that I find easier to share and discuss with strangers (and doctors, teachers, nurses, therapists, etc). People have a general understanding of Alzheimers which gives us a place to start from when discussing Sanfilippo syndrome. If you've ever spent any time with someone with Alzheimers (or any other type of deteriorating mental cognition) you notice that they do have moments of clarity. Olivia has those as well, moments where there are BRIEF glimpses of the little girl she used to be, singing a phrase of a song, saying a random word, purposefully giving you kiss. These moments are very random and very brief. They happened once every few months. She'll say a word once but it's impossible to get her to repeat it! Over the last couple of months we've noticed that Olivia is starting to do some things that we're excited about.
School Olivia continues to LOVE going to school. Her 1:1 aide started at the beginning of December and we attribute many of the positive changes we're seeing in Olivia to her. We are so blessed to have Ms. Tina! Olivia has started to wear her glasses to school again (we'd stopped because Olivia would pull them off and chew on them or drop them on the floor where they were stomped on). I know it sounds sappy but I know it was God's plan to bring Ms. Tina and Olivia together! They couldn't be more perfect for eachother if they tried! Ms. Tina previously worked with a little girl with Rett's syndrome. She seems to know just what to do with Olivia and she goes above and beyond. They work a lot on life skills together and she's helping Olivia to become more independent in her classroom environment. She's constantly bringing in new toys or little treats that she knows Olivia will love. (Here's a short video of part of our school drop off routine. Olivia's classroom is at the back of the school with a separate carpool. I'm able to park the car and then Olivia runs down the sidewalk and knocks on the window to her classroom. Olivia has started to knock on the window all by herself but its difficult to hear on the video).
Purposeful Play Olivia has begun to re-engage in purposeful play. She likes to play with simple toys (think 12-18 month age range). She still loves music and songs. She still loves to look at books. She and Peter often play together with their play kitchen. Peter does more pretend cooking while Olivia enjoys pushing the buttons, turning the knobs and banging the pots and pans. Olivia's attention span is increasing. She's able to enjoy a short cartoons and she'll sit or stand still long enough to enjoy them. Below is a picture of Olivia enjoying 'Winnie the Pooh'.
Communication Olivia has started to say "mama" again but only when she's sick or upset. She has started to use some signs for "food" "drink" and "more". She will say "hi" and "bye" 2 out of every 5 times (I love that term, it's on all the developmental screening tests, another parent reminded me of it lately). There is this one adorable little girl who attends therapy at the same place Olivia receives therapy. The little girl is seriously adorable! Olivia really seems to like her and she ALWAYS says hi to her by walking over and waving at her. The girl is about the same age as Olivia but she's much smaller. Olivia is also working very hard on mimicking motions for making different letter sounds. Here's a picture of us working on the "mmmmm" sound.
Physical Development Olivia received new orthopedic braces about 3 months ago. These new braces extend further up her leg to a few inches below her kneecap. I didn't realize until the first day Olivia put the braces on that she didn't quite walk in the normal heel-toe motion. Previously she would walk very flatfooted, she would trot around putting her entire foot on the ground at once. With the braces she now makes the proper heel-toe walking motion. She's also stopped "intoeing" or walking with her toes pointed towards eachother. Her range of motion in her feet is improving and she's now able to flex her feet past the 90* angle. Olivia is also able to go up and down steps independently while alternating feet and holding onto a handrail. Her posture is improving. We're also working on jumping, bouncing, and squatting. Olivia is much more aware of her surroundings. Last week at the park she went on the "big kid" swings and she actively held on instead of getting distracted and letting go and falling off. I even had to run rescue Peter and find his missing boot on the other side of the playground, and Olivia stayed swinging the entire time.
Overall we're pleased with how Olivia is doing. We are settling in a bit more to the Ft. Bragg area, using doctors and resources here instead of heading straight to Duke for everything. I've also realized recently that of the two kids it's Peter, rather than Olivia, who is a little more high maintenance when we're out and about. Olivia has settled into herself a bit more. She can amuse and entertain herself quietly during church or out at dinner while Peter is constantly trying to climb over pews or shout at the top of his lungs. Olivia is content to sit in the stroller during a walk or the grocery cart during a trip to the store while Peter has taken to having a total temper tantrum at the very suggestion of such things. Olivia simply is just a pleasure to be around, all the time! Her smile lights up a room!
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.
