One SMALL Step Richmond has already raised $11,450 toward our goal of $30,000 for PWS research!! We are #27 in the world among 72 walks. Help us toward our goal! And if you register to walk with us on the 26th, all you have to do is raise $40 and you get an awesome OSS T-shirt. It will be a great family event! Thank you to all those who have supported us thus far! http://onesmallstep.fpwr.org/dw/users/deanmachine/Richmond2013
I love supporting fellow PWS families and so wanted to pass along this opportunity to support Rebecca and her family! Read below...
Hello! My name is Rebecca - Mamma to Joey Paul (2 1/2), and Emil Franklin (6 months). My son Joey has PWS. Last month we moved from Delaware to Indiana because my PhD program in Philosophy.
After working at the University of Delaware for five years I decided to capitalize on this new adventure and stay home with my boys. For the last two years I have enjoyed exploring various DIY projects, and making handmade gifts for friends and family. I've toyed with the idea of opening an Etsy shop for a while and I decided that there's no better time than the
My shop, the roo pouch, has a handful of "washi canvases" with inspirational or motivational sayings. I would love to design a custom canvas with the saying of your choice.
You can contact me through Etsy, or at firstname.lastname@example.org to discuss the details. Creating something gives me the time and space to be with myself, engage in self-reflection, and enjoy a few quiet moments - which as we mothers know, is essential!
I hope you enjoy my shop and my "handmade cheer to brighten the soul".
DISCLAIMER: I am not a doctor and the following is NOT medical advice. Please consult with your child's physician(s) before making any changes in the direction of this diet. It is a medical diet and should be treated as such.
Since Dean was a baby, we have been careful about carbs in his diet, as I learned from another mom of a child with PWS (see pwsnotes.org) about how people with PWS don't seem to metabolize carbohydrates well for energy. As he has gotten older, we have reduced carbs even more and increased protein for Dean.
Recently, we decided to take the plunge and move toward the keto diet, or more realistically, the MAD (modified Atkins diet). This involves not only a considerable restriction in carbs (many are aiming for less than 20 grams of carbs per day - look at your nutrition labels and you'll realize how little that is!) and ALSO an effort to push fats. It's hard to train your brain to *add* fat to anyone's diet, so it's a big change in practices with food. I was initially quite reluctant to dive in (ironic given the name of this blog, right?), but I realized that if Dean can potentially run on 8 cylinders, he was maybe only running currently on 2, maybe 3. We know there is more in that little boy that can come out. It was worth a shot.
The keto/MAD diet is a *medical* diet and therefore needs to be followed by a doctor and/or a dietitian/nutritionist. There are some dangers and concerns that require monitoring. We will be meeting with a dietitian soon through our Children's Hospital of Richmond to make sure that we maximize results and get Dean all the micronutrients he needs. One of Dean's doctors is following the diet to make sure his growth and other factors (related to labs and medication) are not adversely affected.
The keto diet is most commonly used for people with epilepsy, as it can result in the improvement or even elimination of seizures. The article above explains that there are other conditions that can or can possibly be helped by the ketodiet. There is reason to believe that PWS is part of that.
What have we seen so far? We've been really mindful of this change in diet for a little over a week. There is a clarity in his eyes that we have not seen before. You can SEE Dean trapped in that little body, as I've said from the beginning that I know he is in there. His muscle tone has (oddly) improved a *lot*, his problem-solving skills are better, and he's talking a bit more. I know that the benefits will continue. Other PWS families who have had their loved one with PWS on the diet longer report everything from increased motor skills to cognitive improvements to being able to consume more calories while maintaining weight (all considerable concerns in PWS!). I took this picture after noticing the change in him:
This requires that we be really diligent about Dean's diet. We read labels even more closely now and it's amazing how carbs are in *everything.* We are testing Dean's blood ketone levels every or every other night. Last night, he was at 1.6, which is squarely in ketosis. We're aiming for even a bit higher.
Many of you know that I don't cook because I generally hate it. And planning ahead for food goes against my usual tendencies. But success with this diet requires both. Thankfully, Pinterest comes to the rescue! I have created a pin board called "Ketokid" that many are following. Check it out! http://www.pinterest.com/acfshenk/ketokid/
So that's where we are! We are feeling confident about this step and I will be sure to let you know the continued results!
The school year is three days away and while I'm sad, I also can't wait. Whereas last year I was nothing but reluctant to embrace the school year, this year's circumstances are a bit different. The boys thankfully adapted to the slow pace of our summer days, as daily plans to hit all the spots we didn't get to enough during the school year turned into free play in the house, long bounces on the trampoline, walks in the neighborhood, tons of time at the pool, and watching lots of (mostly Star Wars-related) movies. Yeah, we did go to the Children's Museum at times and various parks and such, but we let ourselves do it all at a relaxed pace. It was nice. Really nice. :) Cole had one (wonderful) week at Camp Hanover's Day Camp held at our church and the rhythm of getting him there and back reminded me of how busy the school year really is.
Definite highlights were our Florida trip, weekends to visit family in northern VA and Maryland, and Cole's birthday. It makes me smile to think of these memories.
The last week or so, it feels like we're all unraveling. Our babysitter got a new job and so I'm been scrambling to fit in 30-40 hours of work a week around taking care of the kids (because I don't want to work while they're awake all the time, obviously), the boys have been not sleeping well and then are getting up around 5 am (or sometimes earlier!), and everyone seems to be craving more structure. So, although I'll miss the boys, I'm embracing the new school year.
Cole is going into first grade, which is crazy, but, sigh... there it is. He expressed only once this summer that he wanted to go back to school, but other than that, he hasn't been too excited. We met his teacher yesterday and that seemed to alleviate some of his fears about what the next year might bring. We have worked some on reading this summer, but it's been quite reluctantly on Cole's part. I think he'll be happy to see his friends more regularly again, but I know the change of pace will also kick his butt for a bit until he gets reacclimated. Even though Kindergarten is no joke these days, 1st grade feels like "real school" for sure. My little Coley! I want to keep him small forever.
Last year, Dean went to his special ed. Pre-K class three full days a week and to a regular church preschool two mornings a week. This year, he is going the full four days a week to his special ed. Pre-K class and then was going to go one morning a week to the church preschool. Just last week, we decided that he's going only to his special ed. class. He's (still) not potty trained, and although his other school said it was ok and they would figure it out, it still felt weird. The dealbreaker was when his new private SLP who we are seeing had literally only ONE opening the whole week, and that was during the day he'd go to this other school. It felt like a sign (if that reasoning doesn't make sense, I can explain the train of thought at another time :)). We know that Dean will be sad when he finds out he's not going to this other school, but he LOVES his other class and we visited his teacher this week. He is very excited. :)
Of course, there's more to it than that for Dean, but I'm not sure how much I can wrap my head around right now. Our original thought in putting him at least part-time in a typical preschool last year was to expose him to age-appropriate models for speech and behavior. This year, while that still seems important, it's Dean's last year before Kindergarten (I'm going to skip over that thought for a minute...) and we want to make sure he's getting the full amount of support he can to improve his skills before then. And no, I have no clue what we're going to do for K for him.
Emmett is not 2, but 2-and-a-half, as he will tell you. :) He is ready for preschool and is going two mornings a week to the same church preschool Dean attended! I can't believe my baby is going to school. I'm going to miss him, but I am eager for him to make friends his own age (instead of just hanging with the big boys :)) and to enjoy new activities that we don't do at home. I think he will do well separating from me at drop off, and I don't have any allergies or health situations to worry about with him, so that's a relief (dear God, please keep that going, I can't handle much more in that department...). Also, as of mid-August, Emmett is potty trained! Hallelujah! Still some accidents, but he is doing so well. It wasn't a requirement for his class, but I'm sure his teacher won't mind it. ;)
So what's up for me? I will actually have some hours here and there where ALL THREE of my boys are at school. I will most likely use the time to do work, but I might nap, too. :) I'm looking forward to having some time just with Emmett again, some time just with Dean on the morning Emmett is at school (when Dean was going to be at school in plan A), and then to have more reserves to greet my boys at pickup. I like that we are eliminating some of Dean's outpatient therapies and/or consolidating them to Wednesdays so that I won't have to spend more than one day a week waiting in a waiting room. This will be the first time in over 4 years that that has happened!
That's it! That's the summer, and that's where we're headed for school this year. Praying for God's blessings for my kiddos and the kids/teachers/staff/etc. in your life....
Today, our Coley turns 6! It's been a very full six years, and we are so proud of him. :)
Dear God, thank you for Cole and how he made us a family. Thank you for his curiosity, his energy, his life, his humor, and his love for his family and friends. We pray that you would bless him richly and give him confidence and greater faith in you. He is a special treasure. Amen.
Today, we went with some friends and their kids to a new-ish place in Richmond called Jumpology. It's a trampoline arena, so you go inside the warehouse-type building and it's pretty much wall-to-wall trampolines. We had a blast! It was so funny to see adults alongside kids just bouncing all over the place. They were probably more dangerous than the kids! My legs were jello after just 10 minutes, but we kept bouncing and taking breaks and doing whatever it took to maximize our hour-long "flight time." Usually, we try to stay *at least* an hour when we do an activity with the kids, but an hour was sure a lot of bouncing!
Emmetty in the dodgeball arena. He looked like a little toy just bouncing up and down :)
Very funny, Jumpology, verrrrry funny....
The blur in the foreground is Cole, and the blur going up the wall trampoline is Dean (and I have to say, watching Dean run almost effortlessly up the trampoline wall was exciting!) :)
Bouncing with friends!
The boys especially loved the foam pit (no pictures, unfortunately), where you bounce off a trampoline into a pit filled with giant blocks of foam. Cole quickly figured out how to do a flip into the pit and Dean quickly figured out that he couldn't get out of the pit once he was in. Haha.
The staff at Jumpology take their jobs as referees seriously, but without being total killjoys. They blew the whistle at me for running between the foam pit and the main trampoline areas. Haha. But seeing how we've been to other places where there's a high risk for bodily trauma and the staff are less than vigilant, I was more than happy for them to ensure everyone's safety!
Just as an aside, Jumpology offers a lot of other events, including ones for adults and older kids. This was a specific jump time for kids 6 and under and their parents.
I can't tell you how many times people ask me how I handle three boys. First of all, they say it like it's a bad thing, but you all know how I love my little crew! The thing I say is just to run them whenever I can, and then they are happy! This is largely the case. Jumpology gets five Shenk thumbs up!
I've been feeling like I should write about the FPWR conference I went to the other weekend because that's what I usually do *immediately* after returning home. But there are other things on my mind, and I'm glad that it's not always just about PWS (as much as I loved the conference!).
In short, I am enjoying a quality of life that I didn't know would ever quite be possible. I have three kids and I'm dealing with that I think about as well as anyone could. :) I'm not perfect and I'm positive my kids would tell you that, but I think that applies to almost any parent.
I have been working out pretty intensely for a while now, mostly through workouts connected with Beachbody. I found that doing intense, focused workouts 5-6 times a week has done more for my mental health than low-to-moderate intensity workouts 3 or so times a week. I have incorporated yoga in my routine as well, because I'm at a point in life where I'm actually enjoying the time to sllooooowww down some.
I'm trying to be even more conscious about what I put in my body, because food is fuel for my body and my brain. Again, not perfect, but I'm aware of the balance that is needed and I'm finally in a place where I can have a healthy relationship with food that this is even possible....
Sleep is so crucial, I can't even tell you. In my mind, just thinking about this topic, I see large flashing signs that say, "WARNING! NEED SLEEP!" I had to drill this into Bob's head because he can't know what it's like to be in my head when it comes unglued and we are *both* very tired... seemingly always (our children are allergic to sleeping)... but after I read an article about how women with bipolar in particular have certain biochemical changes that occur with lack of sleep... and after my psychiatrist told me that sleep was something I was going to have to guard fiercely.... Since I'm on medication that is preventing the hypomanic episodes that used to pass me over night after night of limited sleep like a crowd surfer at a rock concert, I feel a lack of sleep even more than I used to.
And yes, medication. Lamictal has been working for me pretty well for about two years now, although I felt like there was something missing. I wouldn't have guessed it was an antidepressant, but once Lexapro was added to the mix, it was like it identified what was missing that I couldn't quite put my finger on before it.
There are lots of little tweaks that I make to make it all easier. Something stresses me out and feels toxic? I dump it. I almost only watch light-hearted movies. I have great friends who help me laugh. I ask for help with my kids. I let myself fall apart when I need to. I get right back up. I hug my family excessively. :) I'm lucky to have immediate and extended family members who "get" it. It's a mixed blessing of having something that runs in families.
And all jokes aside that may come around, we are D-O-N-E with biological kiddos. I cannot be pregnant ever again. When I was pregnant with Emmett, my hormones caused my bipolar struggles to go bananas and my options for medication were so limited. :( It was really, really hard. I had my tubes tied as a measure of protecting myself and the rest of our family. This was part of my taking care of myself (obviously others might not have to do this).
I have bipolar II, which is the less-severe form, but it greatly affects me nonetheless. I have worked really, really hard over the years to get to this point and I'm so blessed to have people who love me and haven't given up on me so that I could get and stay here. This is a lifelong issue, as bipolar typically doesn't just go away, and it runs in my family, blah blah blah. Every day, one day at a time!
And part of why I post is to give a voice to those who are going through the same thing. I appreciate your stories so much! Would love to hear from you on the blog or in private. I value your sharing!
I live in Richmond, VA with my husband Bobby, a Presbyterian minister, and our three sons: Cole (6), Dean (4), and Emmett (2.5). Dean was diagnosed with Prader-Willi Syndrome (PWS) at 3 weeks old and this blog is mostly about life with a child with PWS.
Currently, I work from home as a freelance editor and writer and take care of the boys. I am also a Team Beachbody Independent Coach (www.beachbodycoach.com/alishenk). Occasionally, I sleep at night.
I have an M.A. in Counseling (Marriage & Family Therapy concentration) and a B.A. in Early Childhood Education and Human Development, neither of which drive my current work, but both inform my daily life.