I am so proud of this kid!! She had a dentist appointment today and was so brave. So I’m taking her out to lunch to celebrate her bravery. And my relief that she doesn’t have cavities (which is what the dentist who visited her at the school told me). When in doubt, always get a second opinion.
The other day I posted the below message in Facebook. I thought it went up on the ‘My daughter has Rett Syndrome’ family group. But it was posted to the greater FB community as well. And I’m grateful for my error. I got so many fantastic recommendations from both groups. Now to choose which chair support to buy….
Here is the post:
So Lily is getting REALLY long. Which is not surprising as I’m 5’11” and her dad is 6’5″. But it’s starting to cause an issue for when we go out to dinner. Or go grocery shopping. Those Caroline’s carts have not made their way to Whole Foods in NYC (or any other grocery store for that matter). And when eating out, she can still fit in a highchair (she’s skinny) but she’s literally got both feet on the ground! If I don’t have her in the highchair, she will roam the restaurant looking for cute boys to steal food from. What do you do when you take your girls out to eat, who are roamers, and don’t fit into highchairs anymore?!
Those piggies are flat on the ground!
She’s yelling when she’s happy, when she’s sad, when she’s anxious, when she’s bored. Basically all the time. For the past month. And I thought teeth grinding was annoying. Ha!
One of her therapists thinks that it’s just another manifestation of her breathing issues. She’s not been hyperventilating or breath holding as much lately. (Yelling, teeth grinding and breath-holding are all unfortunately typical symptoms of Rett, among many others). I know of one Rett mama who got herself noise canceling headphones because her daughter wouldn’t stop screaming. I’m considering getting a pair.
It’s a good thing she’s so stinking cute!
Love this Psychology Today article. There’s nothing all that new in there for us Rett nerds, but it’s great that the message that Rett may be the first curable brain disorder is reaching the masses!
Strolling in the springtime
Lily and I are so excited that the flowers are starting to bloom! It fills us both with so much excitement and hope.
Here are a few Rett related things that have also been inspirational to me over the past few months that I wanted to share:
I hope to see some of you at the fundraising event next month!
Love,
C and L
blueberriesandgiggles 