A Long Overdue Olivia Update (day +560 post-transplant)

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!