Tuesday, December 7, 2010

Is there anything cuter?

than tickles and matching footie pj's?







Monday, December 6, 2010

My Dental Superstar

A few weeks ago we headed to the dentist for Peter's very first appointment. I had an ulterior motive, I wanted to check out the dentist before I scheduled Olivia's appointment. I liked the dentist and their staff so I scheduled Olivia's appointment and we went last week. Olivia was a dental SUPERSTAR. I was so nervous and apprehensive about our appointment. Olivia hasn't been to the dentist in over a year. Olivia saw a dentist shortly before her transplant and then the transplant team at Duke recommended against having any dental work done while Olivia had her central line or port so we were long overdue for a dental appointment. The staff was fantastic but I like to think that I've come a long way too in terms of preparing and educating the doctors and specialists we see. I had printed out information about MPS and Sanfilippo syndrome. I'd had Olivia's previous records sent over from her dentist in Washington state. The staff was fantastic, they really went above and beyond. The hygienist saw that I had my hands full with both Olivia and Peter so she gave Peter a little iPod and headphones and Peter sat patiently and quietly and watched an episode of Diego (Miracle #1 of the day). Olivia sat in the chair all by herself and I held her hands. The hygienist was able to brush and floss her teeth. It turns out the dentist's wife had studied lysosomal storage disorders during her residency so he's somewhat familiar with MPS and he called his wife to get a quick run-down after he saw the paperwork that I brought (Miracle #2). Olivia seemed to really enjoy the extra oral stimulation. They were able to polish her teeth and she was quite cooperative. They even were able to take x-rays. We could see Olivia's permanent teeth on the xray but the dentist estimates that it should still be another 2 to 2.5 years until she looses her first tooth. Her teeth right now are very healthy. No cavities, the enamel looks good, so far she doesn't seem to have any of the enamel issues that develop as MPS progresses. The dentist was impressed with the size and spacing of Olivia's teeth. She has nice large teeth and they are not overly crowded, her permanent bottom teeth appear a tiny bit crowded on the xray but that often resolves itself over time. I am so thankful that I happened to find such a great dentist and I'm so proud of my little Dental Superstar. I was so dreading the appointment so I'm even more thankful that it turned out so well. I only hope that my appointment goes so well when it's my turn in a couple of weeks.

Sunday, December 5, 2010

Birthday Boy

We had a small birthday party for Peter. When I asked Peter what he wanted to eat at his birthday party he said he wanted snack. Of course that's not very specific but that's what you get when you ask a 2 year old what they want. Peter is really into dip lately, he likes to dip everything so we had chips and dip, veggies and dip, and fruit and dip. Peter loved sampling the buffet before the guests arrived.



Caught you! Lately Peter has decided that if he closes his eyes then no one else can see him so he thinks he's hiding instead of getting caught with his hands in the dip.



I borrowed the most amazing cake pan from a neighboor. They sell it at Williams Sonoma in case you're interested (and this cake was such a success we might have to buy one of our own). After the disaster that was Olivia's birthday cake I think I've redeemed myself.



Peter LOVED it!



He didn't want to eat it, he wanted to drive it around the table.



But then he saw how much his sister was enjoying it and he decided to give it a go. Love those big beautiful brown eyes!



Forget the forks, and the hands, just go for it!



Peter received this amazing train from his friend J, it spells his name! He loved it and as soon as they left Peter ran back over to the table to play with it some more.



All evening he kept going back to play with his train and then he insisted on telling it goodnight!

Thursday, December 2, 2010

A Special Needs Parent's Wish List

I saw this while I was in a waiting room this past week and it is so true that I just had to share!

A Special Needs Parent's Wish List
So you'd like to give me a gift? That's nice, but the things I really need don't wrap so well. Put away that paper, keep your card, and just give me one of these. All I really want is:
BABYSITTING
A few nights out this year will do me a lot more
good than another sweater or DVD.
HOUSE CLEANING
Oh, yeah. Come clean my house, Anytime.
Do you do windows?
HOMEWORK HELP
Teach my kid math. Help her write a paper.
Drill her with flashcards. Give me a break.
SOUNDING BOARD
Therapy? Expensice. Someone like you,
who I can call and gripe to for hours?
Priceless.
BACK-UP
Come to an IEP meetings and
doctor's appointments.
Bring tissues.
And maybe a baseball bat.
CHILD'S PLAY
My child wants to play
with me, needs to play with me,
all the darn time.
You take a few shifts, okay?
SLEEP
Offer to take my kids to
school one morning. Also wake them up,
and get them dressed and fed.
I'm sleeping in.