V*I*C*T*O*R*Y

Thank you so much for your votes to help fund research to find a cure for Sanfilippo Syndrome! The final results were announced today and it's official! Team Sanfilippo will receive a $250,000 grant! Here's a link to the Pepsi Refresh Grant recipients in January: Pepsi Refresh Grant Recipients

Sunshine and High 70's

Seriously loving the North Carolina weather lately!

Undercover Boss

In case you missed it.........

The most recent episode of Undercover Boss brought national attention to Sanfilippo Syndrome. The CEO of Mack Trucks, Danny Slagle, went undercover to learn more about his company. In his undercover role he met with Al, the grandpa of our friends Waverly and Oliver, both of whom have Sanfilippo syndrome. CEO Danny is also a grandfather and he and Al bonded over the love that one has for their grandchildren. Al went on to tell Danny about more about the tragedy that is Sanfilippo syndrome. Al spoke eloquently! He brought much needed and appreciated attention to Sanfilippo syndrome. You can view the entire episode here:

http://www.cbs.com/primetime/undercover_boss/video/?pid=ntkp3mXNw_ZdTo7w1ocF2kWv_S6HdBQ7&vs=homepage&play=true

Mack Trucks also made a $5000 donation to the MPS Society that will go towards funding more research to find a cure for Sanfilippo syndrome.

So in the spirit of paying it forward I'm asking each of you for a favor. Please consider writing a quick note thanking Mack Trucks for their donation to the MPS society. Send to:

Denny Slagle
CEO Mack Trucks, Inc.
P.O. Box 26259
Greensboro, NC 27402

Someone got a haircut...

and a new pair of shades! (I know the pictures are terrible, I used my phone, but at least you get the picture, ha ha pun intended)

Weekend Bliss

We enjoyed the perfect 4 day weekend around here thanks to our Presidents. We didn't have any big plans for the weekend and it was wonderful, wait I take that back, we did have big plans but they involved things like trips to the park and walks around the neighborhood. It was bliss! And the weather was gorgeous, I love 70+ degrees in February!

Friday--Olivia had school so Mike and Peter were able to enjoy some special one on one time together while I enjoyed some equally precious time to myself.

Saturday--We headed off on a long walk around our neighborhood, we stopped by the paddle boats (picture to come later), we fed the ducks, we walked around the nature trail, we played at the park. Our expedition took hours and we didn't even have to leave our neighborhood! We headed into town for some errands, rather mundane stuff--Home Depot, Grocery Store--but it's so much easier to do when I'm not outnumbered by kids.

Thanks Presidents!

Sunday--We slept through church. I feel a little guilty but this guilt is outweighed by the fact that we SLEPT through church. I consider that a precious Gift from God so He knows why we weren't there. We played in the back yard and did some work to prep the back yard for spring. We watched Undercover Boss on CBS (more on that in a future post as well).

Monday--Olivia had a half day of school so we dropped her off and headed to breakfast with Peter at Chick-fil-A. Peter played in the play area by himself while Mike enjoyed quiet, uninterrupted conversation. We ran a couple other errands and went to the library before picking Olivia up from school.

A Coupon High

This week they doubled coupons at one of our local grocery stores. They doubled the amount of any coupon up to $1.98. I was hesitant to give it a try, preparing for this shopping trip seemed a lot more involved. It took me almost an hour to sort through all my coupons and look over the store's weekly flyer so I could prepare my list.

Here's a picture of the big haul.....



And the GRAND TOTAL: $11.21! I saved $47.36 in coupons.

I wasn't able to get everything I wanted from my list, the store had run out of a few items.

And because I'm so proud of myself I just can't help but share the breakdown.

-Butterfinger snackers--FREE
-Crystal Light Drink Mix--$0.92 each
-Nestle Toll House Cookie Dough--FREE
-Sweet Potato Fries--$1.69
-Pictsweet Frozen Veggies--$1.25 each
-Hefty Freezer Bags--$0.50 each
-Carrots--$1.50
-Green Giant Frozen Vegges--$0.50 each
-Sour Cream--$0.50
-DanActive Yogurt--FREE
-Kraft Cheese--FREE
-Philadelphia Cooking Creme--FREE
-Betty Crocker Potatoes--FREE
-Maxwell House Coffee--$0.50
-Old Spice Deodorant--FREE
=$10.52 + tax

Even though it did take quite a bit of work to prepare for this trip it was definately worth it! I can't wait for the next time the store doubles coupons!

End In Sight?

I am so ready for the end of winter! Despite being ready for warmer temps and more time outside I am beyond ready for the end of the cold and flu season! Last year the entire cold and flu season seemed to pass us by with little more than a sniffle. Of course we were still ubersensitive about Olivia's immune system and we didn't leave the house. This year has been a different story! I feel like we've spent the last 4 months taking turns being sick.

Peter is the one with the sniffles this week.

*Programming Note*

The stepfather of a friend of ours will be on the CBS show, Undercover Boss airing THIS SUNDAY, at 9pm (8 central). The stepfather, Al, is one of the trainers featured on the show and during filiming for the episode he mentions Sanfilippo syndrome quite a bit. Al is the stepfather of our friend Shannon, Shannon's children Waverly and Oliver both have Sanfilippo syndrome. You can learn more about their family from their blog here: http://www.familymctravels.blogspot.com

I found a few previews for this week's Undercover Boss episode. We're so excited that Sanfilippo syndrome is getting such exposure!

V-Day Love

Valentine's Day is one of those holidays that took on a whole new meaning once I became a mom. Before kids it was all about the romance. Now it's all about celebrating the little loves in my life. When I was little my mom always suprised us with something special on Valentines Day and now I love doing the same thing for Olivia and Peter.

I woke them up with special little treats.



Peter LOVED that he was able to eat candy the first thing in the morning!



Olivia looked adorable in her Valentines day outfit! She was blowing me a kiss but I couldn't time the picture correctly and we didn't really have enough time for a full blown photoshoot before school.



Olivia's classroom Valentines Day party



Olivia LOVES her 1:1 Ms. Tina and we love her too!

Military Anecdotes for the Week

Prepare yourself for complete randomness.....

• There's a large billboard that we pass almost every day on our way into Fayetteville, it is an advertisement for some type of martial arts training place. It reads "For those who have hunted armed men....training will never be the same". I hate this billboard.
• I learned that I get 15% off at the Walgreen's near our house every Tuesday because we're military. LOVE IT!
• Just as I learned to appreciate the sound of artillery at all hours of the day and night at Ft. Sill and Ft. Lewis I have learned to appreciate the sound of aircraft here at Ft. Bragg, I can even tell when they're slowing down and circling for jumps. Peter also can hear an airplane and then look around in the sky until he sees it. It's adorable!
• The other day when I went to drop something off to Mike at his office I noticed a coffin in the back hallway. I walked past it twice, I noticed it but didn't really think about it. As I got into my car to leave I saw several of Mike's soldiers lining up in the parking lot with said coffin to practice because they were on a funeral detail. There are 101 different things that I could say about the entire experience but what struck me was the professionalism of the guys as they rehearsed. May God be with the family and friends of the deceased.
• I saw a bumper sticker on a car the other day--"Only two things fall from the sky, bird shit and paratroopers, chicken shit stays on the ground". This bumper sticker annoys me on many levels. I don't really appreciate the suggestion that Mike is in the same category as bird shit. I don't like to think about his jumping as "falling from the sky" I prefer to think of it as a controlled and gentle descent from an aircraft. And finally I hate the idea that they are referring to other armed service members as chicken shit! What happened to the whole one team one fight concept!
• I completely appreciate the history and tradition of the military uniform but really, sometimes it looks so silly! Mike walked in from work the other day wearing his maroon beret, his dress blue uniform (which is a black jacket and blue pants) with his pants tucked in to his black polished boots! Who's idea was that? None of it seems to go together at all!

Love these two smiling faces!

Pulling it all together--A recap of our appointment at Developmental Pediatrics

Friday afternoon Olivia had her long awaited appointment with a developmental pediatrician here at Ft. Bragg. The referral to see a developmental pediatrician was submitted at the end of September and we've been on a waiting list ever since.

I was pretty apprehensive about this appointment, I'm so very tired of being the expert when it comes to Olivia's medical care. When booking the appointment they instructed me to bring all relevant paperwork to the appointment. I explained that Olivia's medical history was quite extensive, I asked if I could bring the paperwork the week before the appointment so the doctor would have time to actually review it. I was told not to because the provider wouldn't have time. That did not give me a lot of confidence going into our appointment.

We arrived 15 minutes prior to our scheduled appointment time, as instructed, only to discover that the office was closed for lunch. Again, not feeling very confident about the outcome of our appointment.

When the lunch break ended and we were allowed to check in for our appointment I handed over my folder full of Olivia's paperwork. We waited, and waited, and waited. After about 45 minutes a lovely doctor came over to tell me that she was almost ready for us, she was just finishing up reading through Olivia's paperwork, she'd already spoken to the nurse practicioner at Duke and was waiting on a call back from one of the doctors at UNC.

Finally about an hour after our appointment time we were taken back. The doctor came and took Olivia right by the hand as she escorted us to our office. I loved the doctor instantly and Olivia did too! Before the appointment I had prayed that we'd find a doctor who was somewhat familiar with Sanfilippo syndrome. The doctor we saw today was not at all familiar with Sanfilippo but she couldn't have been more perfect. An unanswered prayer in action!

She had personally cleaned the exam room and she'd pulled out specific toys appropriate for Olivia. I saw the notes and reports I'd brought on her desk, she'd read them thoroughly and highlighted sections and tabed items she wanted to discuss.

We left the appointment with 5 pages of referrals from everything from an ENT to a pediatric optometrist. We also have a new script for a special needs stroller and the paperwork for a handicapped parking permit. All in all we were there for hours! But well worth it! Whoo hoo!

New Specs

Seriously Adorable!

Future Career?

Sibling Love

 

Flowers worth the wait!

When we were admitted to the hospital for Olivia's transplant they gave us strict instructions about everything, including limiting Olivia's exposure to fresh fruits, vegetables, and plants. The medical team told us when we were allowed to introduce each new fresh fruit and vegetable for Olivia. We were also told we could not have any plants or flowers inside our home. Mike would often spoil me by surprising me with fresh flowers but that stopped after Olivia's transplant. He surprised me with this beautiful bouquet the other day. We didn't specifically ask Olivia's doctor at Duke but I'm pretty sure that at 18 months after transplant we're ok.

There's an App for that

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?

Warm and Toasty

Olivia knows the best spot to cuddle up with a good book!





If we ever move to a house with a less kid-friendly fireplace then we are in trouble!

Happy New Year

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.

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!