Thursday, November 8, 2012

Kitchen Dreams and Pumpkin Smashing

Truthfully, I've not known what to write about a lot lately. Life is chugging along and I feel really blessed that, despite some challenges, we are doing really well. A couple of new things going on....

We are redoing our kitchen. This is something we've dreamed of since we moved in and we are so excited about it! We have been getting estimates and designers in to see how they see the space and to listen to us about what we envision here. We are leaning towards an open kitchen because it is currently a bit of a closed-in room. Also, from talking with other PWS families, it seems that the majority favor a more open kitchen so they can see when their child with PWS is in the area and can supervise a little more easily. The space is challenging when you're wanting to stick to a budget, but we have some really promising plans! Stay tuned. And if you have any favorite pictures of designs or colors, send them along! I love looking at this stuff.


Dean is actually starting to make some progress in speech. It's slow, but it's there. He can say his vowels well and is getting more consistent with some basic consonants. He's not saying lots of words or anything, but his ability to imitate is improving, and gosh, you just can't make any progress if you can't imitate. I'm not sure why this is happening now... I don't think it's anything we've done in particular, but maybe just a combination of all the supplements, frequency of therapy, Dean maturing and trying just that much more. Again, he's not really "talking," per se, but there are changes in his vocal abilities and patterns. For now, we'll take it.

Between Hurricane Sandy (which ended up being almost nothing here), parent conference day, election day, and a half-day on Halloween, it feels like the boys have barely been in school lately. Honestly, I've loved it. I'm so glad that they're doing well in school (had a conference with Cole's teacher recently and he's rocking Kindergarten. My heart is full), but I love having my boys with me. It's been fun to remember how great the summer was when we had no real schedule and could spend the days as we pleased.
This was a recent trip to Target, where I bought the boys some new hats and gloves:

This was our pumpkin carving (note, post-Halloween - oops!) adventure:

And then, we had an awesome time taking hammers to the 7 pumpkins we have and make a little pumpkin mess:

Ok, in truth, Dean got a little defensive about the pumpkins and refused to smash them. He stood guard by our biggest pumpkin, the one that the boys carved with Bob, and so we left that one for him for a little longer. Otherwise, I totally recommend the pumpkin-smashing activity! Reminded me of the comedian Gallagher and his sledgehammer-meets-watermelon act (click here if you have no clue what I'm talking about).

I love fall.
I love my family.
I love our life.

Also, tomorrow, Bob and I are heading to the conference for the Foundation for Prader-Willi Research in Philly. This is the first time that we are getting away in 3.5 years and we are a little too excited about it. My parents are hanging with the boys, and you probably won't hear from me until Monday. Have a fantastic weekend!!

3 comments:

Giulia said...

A 0.02$ question, but how do you think you'll lock the food for Dean ?
Okay, I know that it's an English stuff, but a UK family did use it : http://www.vivatec.co.uk/

I am pretty sure that something similar exists in US.

Like that, you prevent Dean from getting food without depriving the two other boys.

Even if locking food may not be your first and foremost thought at the moment, I am asking because it's a problem very likely to happen.

Do you need some help with finding ideas ? (my brain can overbrainstorm, so let channel it into something positive)

Ali Foley Shenk said...

Giulia,
Great question. The short answer is: we don't know. :) We will definitely lock up if Dean is extremely food-seeking and/or if he feels that his anxiety about food would be lessened by having it locked up.

I wasn't able to open the link that you posted? I don't know.

Giulia said...

The link did have an overload, but it sounds that their website does not work well.

The idea is a sensor, Dean wears a bracelet. At the moment Dean crosses a place where there is food, the alarm rings.
However, Emmett and Cole don't trigger the sensor and can take food when they need.
I know that a family used this system in UK.
You can contact the PWS association in UK to know some more.

The most important is finding a system which works. If the system prevents Dean from seeking food and gain weight without too much trouble for his brothers, then it's the right system for you.
There is no blanket solution which works for everyone. What works for one may not work for someone else.

I really urge you to think about this problem while you are redoing your kitchen. It's quite likely that you would need, someday, to lock the food for dean.
Better anticipating the problem now than running into big troubles later.

I will be happy to make a research about existing solutions for it. Then, you choose what best suits your needs.