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You Make Me Smile With My Heart

Just a little belated reflection here on Oliver’s Valentine’s Day.

I’ve never been a huge fan of Valentine’s Day myself, but nothing like having a kid to really change your perspective on certain previously unacknowledged holidays. This was the first year Oliver had a Valentine’s Day party at daycare and the children created little mailboxes and exchanged cards/treats.

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Holidays that focus on food or goodies can be a little challenging and I do find myself vibrating at a bit of a higher stress frequency (higher than normal, that is). But I was surprised by the number of treats Ollie received from his friends that did not involve something I needed to hide away from him. Even the treats that involved something edible were mostly safe for Ollie to eat. I have been meaning to ask his teachers if they had given the other families a heads up on his restrictions or if it was all a coincidence. Either way it was a really pleasant surprise to let him enjoy all of the treats his friends were thoughtful enough to give.

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While I was out shopping around for something to go along with his Mickey Mouse valentines (we finally settled on Annie’s Organic Bunny Fruit Snacks, I came across a lot of fun items that were galactosemia friendly, for kids and adults.

Wegmans had these beautifully packaged dark chocolate mixed nut barks that I would not recommend for a two-year old, but I would really enjoy it. Only the dark chocolate option was dairy-free. They also had a really cute cherry pie with a heart cutout that I could easily eat in one sitting.

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Of course, the holiday section of Target had a wide variety of dairy-free or non-edible valentine items. I love that some companies are now offering something other than chocolate in the traditional heart-shaped box. Not all of these options were age-appropriate for our toddler, but it’s nice to have an idea of what we can start to do as he gets older.

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And, although we didn’t make it down to Lititz to visit my new favorite semi-local bakery, Sugar Whipped Bakery, they posted these AMAZING looking vegan/gluten-free cookies! I think they are just the cutest. Follow them on Instagram (@sugarwhippedbakery) or just stop in to see what they have available for the dairy-free/vegan/gf folks, in addition to their regular baked goods. Seriously, I’m in love with them.

Inevitably when one of these holidays or events passes, whether it has gone really well or we faced some tough realizations, John and I find ourselves looking toward the future. Will things go this well when he’s three? When he’s ten? What happens when he’s a teen and has to make good decisions on his own? I suppose this is true with most parenting wins or losses, but we still worry and we keep pushing forward, caught off guard sometimes by how the things that felt insurmountable in theory (constantly checking food labels, worrying about his childcare, challenges in his development, etc.) have actually  been a lot easier to navigate so far than we thought.

We try to remind ourselves of the little triumphs when the chips are down, and we are counting this V-Day as a victory for little O.

 

Here’s To Troubles Being Less and Blessings Being More

There’s a period of time from around the week before Thanksgiving until the new year begins when I basically fall off the grid. It is not intentional. Between travel and family obligations and work and the cold weather and the early sunsets and prepping for Christmas and a dozen other things I could rattle off, I tend to turn my attention solely toward our little family and finishing out the year in a way that feels tidy and…well, finished. I like feeling as if the next year is beginning with a clean slate.

So, here are a few highlights to show what we have been up to for the past few months. Thank you for everyone who has been checking in here on the blog, on our new Facebook page, and of course in person everyday. We are so appreciative for everyone’s love and support throughout Oliver’s galactosemia journey.

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We traveled to Richmond to visit our families over Thanksgiving and Oliver got to partake in some of my mom’s homemade Korean food. Fermented soy being moved to the occasional food list has been a really nice surprise this year. Sharing cultural memories through food with my mom and my son is an incredibly special thing!

IMG_4021 2My family as a whole has been really supportive and accommodating when it comes to meals with Oliver. With only a few modifications, we were able to make our entire Thanksgiving dinner dairy-free (for the second year in a row)! The only item that we made special for John, Oliver, and myself was the gravy. (I have not perfected this recipe enough for others to find it to be an acceptable substitute for the real deal.) My sister, Tammy, who has always baked all of the holiday pies for the family, goes out of her way each year to make multiple pies that are dairy-free (apple, cherry, pumpkin), as well as dairy-free oreo balls which are a Lucy family favorite! She even makes sure to pick up dairy-free whipped topping so we do not miss out on any of the experience!

Oliver loved every sticky-fingered second of it!

IMG_4098Speaking of sweets! While we were with family, we celebrated Oliver’s birthday a little early. My other sister, Maria, was able to make the trek from New York and brought a special birthday cake for Ollie! A beautiful and absolutely delicious pareve cake from a kosher bakery in Queens. “Pareve” food items are prepared in accordance with Jewish law and mean that they contain no meat or dairy. You can also find lots of products in the grocery store labeled as “pareve” or “parve” and are marked with a “U” which generally means they are safe for a galactosemia diet. However, I always (always!) check the ingredient labels to be absolutely certain.

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Oliver had his last check-up with his doctors in Philadelphia on Halloween day. Hospital days are always a little stressful, although we’ve learned to manage the anxiety a lot better as time has gone on. We received his latest numbers while we were in the car driving down to Virginia. Ollie’s blood tests are not your run-of-the-mill tests, so it always takes a while to get the results. Our team has been really great about contacting us with the preliminary results as soon as they can so we do not have to wait for the formal results to be certified before we find out where we stand. We were very happy to find Ollie’s downward trend for his Gal-1-P continues. He is down just slightly to 7.55 which is always what we are hoping for. We continue to want to get him down below 5 but everyone, including us, are happy he continues to make progress. The blood draw at his last appointment was especially difficult. Oliver is now very aware of what is going on and does not bounce back as quickly after the poke. When he was younger, he seemed to forget about the needle almost as soon as it was over, but this time around Ollie would point to his arm and start crying a few times over the next few hours. “Ouchy.” It is gut-wrenching. I know he will eventually understand why these tests are so important and hospital days will continue to be days we ply him with treats and fun activities well into the future. Whatever it takes to make these days go a little easier for him and to ease whatever discomfort he is feeling.

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On the ride back, we stopped at Trader Joe’s and started off the holiday festivities right with some of their Almond Nog. We drank it out of paper cups in the car. Definitely was a tasty little treat. Christmas is tough because, like many holidays, it revolves around food, and sweets, and traditions, and American delicacies seem to heavily include dairy products. We never want Oliver to miss out on any experiences if we can help it, so we continue to find ways to adapt, alter, modify, or out-and-out change whatever we need to so we can be sure we can create happy holiday memories and traditions and never feel left out.

 

IMG_3832Whether it be holiday parades where candy is being chucked at us from every direction, building gingerbread houses at school, or baking Christmas cookies for Santa, Oliver did it all this year! We are starting to explain certain things to him, even if he can’t quite grasp it all fully yet. “This candy has milk in it, so let’s have this other piece instead.” It helps us get in the habit of trying to educate him instead of just making choices for him. It is important for us that he understands the why as much as is age appropriate.

Some times are harder than others. Have you ever tried to explain to a two-year-old why he can’t have a beautifully frosted snowman sugar cookie? And it keeps us on our A-game to always make sure we have an alternative available for him, whether it be at school or with friends. Which reminds me…our Ollie has the absolute BEST teachers around! They go out of their way to make sure that he is always safe when it comes to what he’s eating at school and are constantly keeping me up-to-date on current goings on so I know when another child’s parents are planning birthday treats and whether Oliver will be able to participate. It makes a big difference knowing we are not in this alone and they are helping make Oliver’s experiences the best possible!

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We are ringing in the New Year at home, in our PJs, and O has been in bed since 8pm. Not the most exciting celebration night I’ve ever rung in, but we are so unbelievably happy to have another year of a healthy little boy under our belts. This time two years ago we were exhausted new parents who were running largely off of caffeine and anxiety and could not look confidently into the future to know better times were ahead. Fast forward to today and we are starting to feel a little more secure and a lot more confident…but still heavily caffeinated.

So from our family to yours, we are wishing you a very prosperous, joyous 2018! May it be filled with love and laughter!

There’s Something Good Waitin’ Down this Road…

It has been nearly a month since I ran the Hershey Half Marathon in honor of Oliver and to raise money for galactosemia research at the Children’s Hospital of Philadelphia. Thank you ALL for the tremendous outpouring of love and support. Your financial contributions are of course so appreciated, but I am also in awe of all of the emotional support everyone offered! Thanks to all of you, we were able to raise $1,750 for the hospital! I could spend my entire life trying to thank you and I would never be able to do an adequate job.IMG_3417

 

If I’m perfectly honest, I had a really tough time with this race! This is the third half marathon I have ever run and only the second since having Oliver. It isn’t that I thought it was going to be EASIER, I just thought I knew what I was getting myself into. But it just goes to show, you can be as prepared as you could possibly be and sometimes there are factors outside of your control. Some days just aren’t your days.

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The good news is that I finished AND managed to shave a few minutes off for a new PR. At this rate, by the time I am in my sixties, I should be an elite runner!

The day was beautiful, cooler in the morning but really warm by the time I crossed the finish line. I have met quite a few runners in this area who swear by this particular race and some have completed it multiple times. I have to agree that it was a fun run! Although hilly in spots, the course was scenic and the spectators were great, especially these two right here.

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It was so great having these two cheer me on! They caught me at around 7 miles and then again around 11! It was just the right motivation and pick-me-up I needed for the second half of the race!

During the toughest spots, I was reminded of how lucky I am to have our happy, funny little man to hug when I crossed that finish line and how fortunate HE is to have the love and support of so many people who are in his corner and who want to help make sure we see a day when there are therapies and a cure for galactosemia and other metabolic conditions.

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In the end, the struggles were all worth it. I finished (relatively) strong and avoided injury along the way. We are hoping to make this an annual fundraising event, but even if we decide to try some new ways to raise money for galactosemia research, I will continue rocking my galactosemia t-shirt at every race, large or small, to continue raising awareness!

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Again, THANK YOU THANK YOU THANK YOU! Thank you for your donations. Thank you for forgiving us for blowing up your newsfeeds. Thank you for helping us spread the word. Thank you for wearing your t-shirts proudly. Thank you for everything. You are all amazing and we could not do this without you all.

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Ollie wants you all to know what he thinks of you! You’re AWESOME!

 

 

 

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Sweets & Treats (& Eats): Richmond, VA Edition

One of the things I love the most about going back to Richmond for visits has been the pleasure of watching it evolve. I would say it has become an even more progressive, food-loving, family-centric city over the last ten years or so.

Whenever we are planning a visit, John and I try to include a few new stops at restaurants that offer dairy-free options, which has been surprisingly easy as the city and surrounding area have a lot of vegan and allergy-friendly businesses.

Unfortunately, while central Pennsylvania has a lot going for it, it does NOT have a lot to offer in the way of eating out with dietary restrictions. We have been faced with plenty of rejection here when we’ve requested ingredient info and it is rare to find menus marked with V, DF, Veg, or even G, although gluten awareness seems to be outpacing the other Big 8 common allergens. Also, if I’m being honest, a lot of the options that are available for the dairy-free/vegan set in the area…have a ways to go in the taste department (certainly not all of them, though). We hope to see this change in the years to come, but in the meantime we pay extra-close attention, and go out of our way to patronize, vegan-friendly locations when we are out-of-town.

So when we were in Richmond a few weeks ago, here were some of the highlights:

WPA Bakery:

IMG_2554WPA Bakery has two locations, but we opted for the Church Hill locale. We made it there *just* before they closed. They are not exclusively vegan but every Sunday they offer vegan donut varieties.

On this particular day, the base for all five of these donuts were the same, but each had a different topping: chocolate, cinnamon/sugar, caramel (my fave), coconut, and powdered sugar.

They were more cake-y than some vegan donuts I’ve had, and even though I tend to prefer the fried, yeast-y kind, these were pretty good. The caramel topping was exceptional! IMG_2555

All of their fruit pies are vegan and we were lucky that even though we arrived late that day, there were a couple of options still available. We chose raspberry-apple and a mixed berry. The great thing I have found about a lot of pies, even the ones I make at home, is you can make a delightful, flaky crust without dairy, and these slices with crumble on top were tart, sweet, and fantastic.

Overall we  really enjoyed WPA. The staff was incredibly helpful and friendly and I love supporting the local guy when we can. We will definitely be back in the future.

Sugar Shack Donuts:

Because we do a lot of cooking and experimenting with food at home, we have been able to replicate a lot of traditionally dairy-full dishes to scratch that itch when we need to. Pastas, mac and “cheese,” pizza, if it’s savory, we tend to have it covered.

Unfortunately, my dairy-free baking is hit-or-miss, and donuts have been my personal white whale. I’ve never been able to make a good donut when ALL ingredients were still on the table, so take a few out of the running and I end up with dense, greasy little messes. It is sad.

One of the only things I ever miss about having dairy in my life are donuts. Yeasty, light donuts with fresh glaze are some of the best things on the planet as far as I’m concerned. Enter: Sugar Shack.

IMG_2675We have been to Sugar Shack on previous trips because they have always put themselves out there as vegan-friendly and have had a vegan option for quite a while. However, previously it was an alternative to their “regular” donuts and, if I remember correctly, they were more of a cake-style. Don’t get me wrong, they were amazing, but like I have said before, I have been hunting for a good vegan yeast donut for a while.

According to a recent article in Style Weekly, nearly all of their donuts are vegan now and GM/dough-maker Mike Goins spent two years perfecting this vegan yeast donut. I cannot stress enough how amazing they are. And not amazing-for-a-vegan-donut amazing but truly, empirically delicious. I would bet next to no one could tell the difference between these donuts and donuts with eggs and dairy. They are simply that good.

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We went to the flagship Lombardy location and these bad boys didn’t even make it out of the parking lot.

There were six in this box. But they were freshly glazed soooo…let’s just say I showed great restraint by stopping to take any photos at all.

 

 

The Daily Kitchen and Bar:

IMG_2582I’ll be honest. When John first proposed this restaurant to me, I thought it looked a tad too fancy for us to roll up with Oliver. Even though he can be an adventurous eater, at 21 months, he is in full-on moody toddler mode most of the time. Unpredictable is an understatement. But we wanted to do some shopping in Carytown anyway, so we agreed to do a little fly-by and if the vibe wasn’t child-friendly, we had some back-up options in the area.

There are so many great things about The Daily, but the big one is they list their entire menu on their website and denote paleo, vegan, and even if it has a vegan option. With a focus on sustainable, local foods (they have a list on their website of where most of their products come from!), it is a really refreshing place with LOTS of vegan options for us and an easy vibe.

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Our waiter was very comfortable with our questions and for those he could not answer, he did not seem bothered at all to go back and ask the kitchen for clarification. We were in before their lunch rush so we felt comfortable taking our time and asking enough questions to feel confident in our meal choices.

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I opted for a BLT with avocado and a side of maple sweet potatoes. The sweet potatoes were probably my absolute favorite thing about this meal. They were sweet and perfectly cooked with a bit of a kick from the pepper. John had chicken tacos with a side of beans and rice. And our little O had a chicken and vegan cheeze quesadilla with sea salt french fries.

IMG_2585Overall it was a really hearty meal and we felt confident we were ordering food that fits well with O’s diet. Best of all, Oliver definitely seemed to enjoy his meal!

**I feel like it is important to reiterate here that we do not adhere to a vegan diet. I have a lot of respect for those who do, but for now we are only dairy free. Since vegan products by definition do not have dairy in them, we often use that as a barometer in finding eating out options.

Charm School Social Club:

IMG_2641Oh, Charm School! Where have you been all my life? This delightful local ice cream shop is just so perfect to me. From its mint green doors and accents to the minimalist decor to its vegan ice cream options. There are no words to describe how much I love Charm School Social Club. (I mean, can we talk about their Instagram…)

 

 

IMG_2629Baskin Robbins, it ain’t, and it is all the better for it. When we were there, they had about a dozen dairy ice cream flavors available, and another four or so vegan options. We chose the vegan sundae, which consists of two scoops, Magic Shell, vegan marshmallow fluff, nuts, and a cherry. We also had the option of vegan whipped “cream” but we did not see it in time so we did not get any #regrets.

I believe the four vegan flavors there that week were: vanilla, Mexican chocolate, peanut butter fudge, and cereal milk (Cinnamon Toast Crunch). We chose a scoop each of the peanut butter and cereal milk. They torch the fluff slightly for a toasted marshmallow effect. A subtle little flavor detail that really adds something special to this sundae.

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We miss our friends and family in the Richmond area daily, and now we have some memorable food options to add to our list of things we miss while we are away. Until next time, RVA!

 

T-shirts for One and All

Before last year’s race, I fell in love with the idea of a t-shirt to help promote galactosemia awareness. Unfortunately, I left it until the very last minute and ended up ordering a single printed t-shirt from an online company and let’s just say the quality left something to be desired. So this year, I decided to get an early start and plan on having several printed for friends, families, and supporters.

Thanks to a recommendation from my lovely friend Erin, I contacted Artistic Imprints in Camp Hill (who prints the shirts for her family’s nonprofit, Running for Rachel). The quality of those shirts is excellent, so it was really a no-brainer!

After working with them on the design and pricing, we have the final product (pictured below) ready to go!

Logo design: Shauna Powers T-Shirts: Artistic Imprints

Logo design: Shauna Powers
T-Shirts: Artistic Imprints

For anyone interested, the shirt alone is just $20 BUT if you are kind enough to donate $50 or more to our Team CHOP campaign for galactosemia research, we will send you a shirt for FREE! We have quite a way to go on the campaign and every little bit helps.

Please contact either John or myself through the website, email, phone, or social media with your sizes or we’ll be in touch if you make a donation through CHOP (please just make sure your name is visible to us on the back end).

Orders due by August 31, 2017. Thank you as always for your love and support!

xoxo

Leave the Brie, Take the Bulgogi

I apologize for butchering this timeless movie quote for the purposes of this post title. But it just popped into my brain and I was just so tickled with it, I could not let it go.

The point is, we received some really great news recently regarding Ollie’s dietary restrictions and felt compelled to share it.

The Galactosemia Foundation Task Force has updated the dietary restrictions for classical galactosemia. While Oliver still cannot consume most dairy products, with the exception of a few cheeses that are considered acceptable, fermented soy products have now made their way into a new “Foods used in moderation” category which means he can have some of those foods.

Fermented soy includes soy sauce, tempeh, and miso. For Korean cooking, this would also include gochujang and doenjang, two staples in many of our favorite dishes.

Most every person I have talked to for the first time about Oliver’s galactosemia has the same response when it comes to his diet: “I could never live without cheese. I just love it so much.” And, while there are plenty of meals and dishes that I do love that contain cheese, I cannot say I miss it very much at all. Just like store-bought pastries or ice cream cones on a summer day, not having it as part of our diets is inconvenient, but not something truly crave-worthy. Of course, it helps that we are able to cook with aged parmesan and aged cheddar, so our lives need not be completely cheese free.

But for this family (my caucasian husband included), Korean food and cooking is and has always been a big part of our lives. Faced with the prospect that Oliver would never be able to partake in many of the dishes I grew up on, the weight of the loss of that cultural connection for him was so much heavier than I could have known.

In the grand scheme of things, having or not having an ingredient be a part of our diet is not the worst thing in the world. There are plenty of families and children dealing with far worse predicaments and life circumstances. But still, receiving the news that fermented soy is acceptable in limited quantities for our boy, we could not help but feel a real sense of celebration.

When one of Oliver’s dietitians emailed us last week to give us the news, she knew how excited we would be, too. (Below is the newly revised list!) We had been talking about this particular missing part of our diet for many months, and even though they had an inkling this move was coming, we did not receive the official news until last week. Maybe it seems like a minor victory to most, but for us it opens up a new connection to his family and history that was missing before. And that is a true gift.

Dietary Restrictions Update for Classical Galactosemia - July 2017

Dietary Restrictions Update for Classical Galactosemia – July 2017

13 Weeks to 13.1

Thirteen weeks might sound like quite a bit of time to train for a half marathon, but with the added challenge of simultaneously trying to raise money for galactosemia research, we figured we could use all of the extra time we can afford.

First *official* long run of training was yesterday (July 16, 2017)

First *official* long run of training was yesterday (July 16, 2017)

In an effort to raise awareness and dedicated galactosemia research funds for the Children’s Hospital of Philadelphia, I have again signed up for a half marathon and we are asking for the support of our friends and family as part of Team CHOP. We have more than doubled our goal from 2016 and are aiming to raise $2,500 in 2017!

This year, I will be running the Hershey Half Marathon on Oct. 15. If you are able to contribute to this cause so near and dear to our hearts, we would be forever grateful. Whether you are looking for a use for the spare change in your couch cushions or you have a larger amount in mind, no donation is too small! Every little bit will help propel us over the goal line and we know we will not be able to get there without all of your love and support.

Please visit our donor page HERE or click on the “Make a Donation” on the right side of this page.

Check back here for updates on my training progress (spoiler alert: the key to my success is a lot of four-letter words) and for updates on fundraising progress. If you have any questions at all, please let us know!

Talking the Talk

There is very little about galactosemia that allows our family to act proactively. I almost entirely feel like we are living life on the defensive, constantly combatting anything that might encroach on Oliver’s ability to live a happy, healthy life. On the defensive about what he eats and what the ingredients are. On the defensive against (mostly) well-meaning adults who offer him foods and treats without checking with mom and dad first (think: grocery store sample-giver-outers and Great-Aunt Bertha who thinks every kid needs a cupcake in his life). On the defensive against companies who change ingredients in their products with little to no fanfare or acknowledgment just as we’ve gotten comfortable and added them to our regular rotation. And on the defensive against other young children who don’t understand that, no, Oliver can’t have that cookie you want to share with him (or suppress the urge to lay hands on them when they teasingly wave an ice cream cone in front of him to be “funny”).

Really his visits to all of the doctors and dietitians are more observational than anything else and I would say do not even rise to the level of defense, never mind offense. If we are being honest with ourselves, we (meaning John and myself) along with the medical professionals, are really just monitoring all of his systems, his numbers, and any signs of what developmental or medical hurdles might be on the horizon. Even if we provide Oliver with what we think is a perfectly restricted diet, that is absolutely no guarantee he will not still have some difficulties in the future and there is nothing we can do to prevent them. Individuals with galactosemia may still develop neurological conditions or movement disorders or speech/language issues or learning disabilities or any number of the other complications that have been linked to galactosemia. All we can do is watch, wait, and, if we are lucky, implement appropriate interventions that may or may not help.

I write all of this so someone on the outside of our situation might be able to understand why we would contact our local agency responsible for early intervention services when Oliver was only seven months old and why we would have him evaluated before he even turned nine months old. Despite not showing any development delays at that point, we jumped at any opportunity to be proactive given the circumstances.

We are fortunate to live in a county in Pennsylvania that offers free early intervention evaluations and, if your child qualifies, free intervention services. This is offered at the county-level from birth to age three, and then by the local Intermediate Unit, which provides certain services, including interventions, to area schools, until the age of five. These early intervention programs bring together parents, practitioners, and others to help provide support and services to families with disabilities and developmental delays. Children are evaluated for physical development, including vision and hearing, cognitive development, communication, social and emotional development, and adaptive development, which includes the ability to complete everyday tasks of living, like getting dressed or feeding oneself.

Working on identifying animals by name and by sound

Working on identifying animals by name and by sound

So our little Ollie was evaluated once when he was not quite nine months old and then again last month at 19 months. At his first evaluation, he scored within normal range under every category and the evaluator provided us with further information on what we could keep an eye out for in the future and also simple ways we could aid in Oliver’s development, particularly with learning language. At that point, we were offered the option of entering into an early intervention tracking program where the county would follow-up periodically with us to see if more evaluation would be needed and we would have the ability to contact the coordinator with any questions or issues as they come. Again, in the name of proactivity, we opted to remain in the tracking program.

Prior to Oliver’s most recent evaluation, John and I were becoming increasingly concerned about his development, specifically his language skills. The standards for what is considered normal for an 18 or 19 month old vary depending on the source you reference. According to the Centers for Disease Control, an 18 month old should be able to say “several single words.” Compare that to a source like, What to Expect the Second Year, which is more specific, stating that most toddlers 15 to 18 months old can say “10-plus words…[s]ome gifted gabbers may be able to use 20 to 30 words” and warns of a language explosion from 18 to 24 months, where children have anywhere from 50 to 200 words by age two (p. 258). Such a range of what is considered “normal” can make it nearly impossible for a parent to objectively evaluate how their child’s speech and language skills are progressing, particularly if those parents are already hyper-aware of the possibility there could be issues in store for their child.

When we initially reached out to the coordinator to set up Oliver’s evaluation, we had to tally up his current language skills to give the speech therapist a greater sense of where he was. We filled out the evaluation form approximately three weeks prior to his actual evaluation date. At that point, his approximate language skills were as follows:

  • Words independently spoken: 6
  • Words he would say if prompted or if asked to repeat: 16
  • Words we were working on but had not mastered yet: 3
  • Words he understands and can identify visually but cannot say: 13

We were especially concerned that he was only independently verbalizing those six words and did not seem to be moving forward at all. For example, if we walked by a flower or an apple, he would point and say the word without prompting. Try as we might, we just could not seem to expand his independent vocabulary. Just to give you an idea of what a difference three weeks can make, by the time we actually met with the speech therapist for his evaluation, the list of words he was using on his own had nearly doubled. That is a huge stride in a short period of time!

Again he was evaluated in all of the categories and, fortunately, he once again has scored within the typical range in each. We are not able to rule out anything entirely, but it does set our minds at ease, if only temporarily, to have a professional evaluator confirm he has no delays in these areas at this time. She also confirmed that children who have speech delays might require many more repetitions of a word before it “sticks” than a child who has no delays. The speech therapist told us to continue doing what we are doing concerning his language development but also provided a few practical suggestions as we move forward:

  • Put items of desire (food or toys) in a bag so he needs to ask for the item or ask for
  • Increase expectations-once he knows the word, expect him to say it
  • Pair words/sounds with actions
  • Have him attempt a word about three times
  • If it sounds like he said a word, acknowledge him to continue to encourage language
  • Repeat single words such as up, up, up
  • Set up the environment so he needs to ask (ie such as putting on a plate little pieces of food to ask for more)
  • Try to get him to say the word before giving it to him
  • Give choices of two to have him ask for it
  • Continue to model sounds and words
  • Predictable movements/sounds such as 1-2-3 Go! Allow him to finish it.
  • Focus on one or two words per week
  • Continue to encourage not allowing for the pacifier

I would be lying if I said our minds are set completely at ease after this evaluation. Sure, it helps, but that relief will begin to give way to doubt soon enough. For now, we are going to continue to work with Oliver as much as we can, while still making the learning process fun and with as little stress for him as possible. Our vow continues to be to view every word, every physical milestone, and every new “first” as cause to celebrate and rejoice! Some certainly may be hard-won, but those victories will be all the sweeter in the end.

 

Lucky Number 7(.88)

 

Now that Oliver is a little older and the doctors are satisfied that we have been properly restricting his diet, as well as his numbers trending downward, we have safely moved into only needing to head to Philadelphia a couple times per year. It’s both exciting and terrifying, like walking a tightrope without a net. Or maybe, with an invisible net that you know is there but do not have the comfort of seeing for the reassurance it provides.

Oliver’s last appointment was in early April and the day went swimmingly. Even though the visits are predictable, John and I both still get knots in our stomachs as the date approaches, and are on pins and needles the day of until we finally make it into that exam room. His team continues to be encouraged by his physical development and with his diet and our efforts as a family.

And then, of course, there is the blood draw. With age comes awareness so, as he gets older, we are never quite sure how he will react to the needle. But this kid of ours took it like a real champ this time around. (It helped that the phlebotomist this time was sooooo good; some people really have found their perfect calling!) He made his arm into a little muscle and watched the needle go in. And just as the needle was coming out and he was feeling the little sting and it seemed like he might cry, he caught sight of the Elmo band-aid and all was forgiven!

He may not cry when they poke him, but he wanted those balloons to come live with us.

He may not cry when they poke him, but he wanted those balloons to come live with us.

Maybe the universe caught wind of the fact that waiting 4-6 weeks after his appointment for his lab results is almost more than we can bear, his results only took one week this time around. Huzzah!

7.88

That’s his Gal-1-P. 7.88. Have you ever seen a number quite as beautiful? As I’ve mentioned before, we are aiming for below 7 (below 5 would be absolutely amazing) and at his last appointment, his number had crept up a little bit. We were anxious and a little discouraged to say the least. But this time, down down down it went.

We still know this number is not the be-all, end-all, but it has become this emblem. An emblem of all of our work — the reading, the research, the long talks, the tears, the fears, the anxiety, the explanations, the trips to the doctor, the endless food labels, the fundraising, the awareness-raising, and the second-guessing (and third-guessing, and fourth-guessing). So, when we see it heading in the right direction, it’s impossible not to feel like all of that *stuff* has been worth it. Of course, the opposite is true, too. When his number went the opposite direction last time, it was hard not to process that as a complete and utter failure on our parts. But if I’ve learned nothing else over the past year and a half, it is not to dwell on the negative. No good will come of it.

Knowing there are no guarantees or even predicting how things will continue to go, we will just be over here basking in the glow of 7.88 until he goes back to CHOP in October.

Sweets & Treats: Ben and Jerry’s Non-Dairy Ice Cream

One of the highlights of my childhood was spending summers with my older sister in New York City. I often tell stories about the new and exciting things I was exposed to through those trips. One of those early credits goes to meeting, and subsequently falling in love with, two of my oldest and dearest pals: Ben and Jerry.

Like any good big sister, she would ply my other sister and I with any number of sweet treats during these visits. Regular trips to Baskin Robbins, Italian ices and frozen lemonades from street vendors, and various sweet buns from the Chinese and Korean bakeries, were all staples of my summers. So it should come as little surprise that I had my first taste of Ben & Jerry’s ice cream in the late 1980s on one of these trips. Rainforest Crunch, to be specific (RIP, old friend). My life would be forever changed after tasting such a delectable sweet treat packed with more flavor and “goodies” than any other ice cream I had every had until then.

Fast forward twenty thirty(!) years and my love for Ben and Jerry’s has remained steadfast. From Phish Food and Bovinity Divinity (RIP) which guided me through many a late night study session in college (Freshman Fifteen, indeed) to their socially conscious activism, they could do no wrong in my eyes. So when dairy and the Lucy family officially parted ways, they were honestly one of the few treats I knew I would really miss eating and a company I would surely miss supporting.

But apparently Ben and Jerry’s heard my (and so many others’) plaintive cries and have developed an entire (recently expanded) line of non-dairy ice creams. Huzzah!

As you can see, I had to try one of each.

As you can see, I had to try one of each.

I have tried many non-dairy ice creams over the past year (probably more than any one person should)  and while most get the job done, few of them have the taste and feel of “real” ice cream. Ben and Jerry’s seems to have cracked the code, though. Perfect texture, chock full of tasty little tidbits, and the flavors are tremendous. You can find them here.

I loved the first four flavors so much that when word spread that they had a second round of flavors to be released, I stalked all of my usual haunts to try to nab them as soon as possible. Aside from specialty stores, like The Healthy Grocer, locally we’ve found the most robust selection of dairy-free products at Wegmans, with Giant running a close second. And although our local Target store’s selection of dairy-free products is pretty limited, we have been able to rely on them for this particular product, so I checked there often as well.

It took a little while  for it to find its way to the Central Pennsylvania market but they were absolutely worth the wait! I would have bet good money that the Coconut Seven Layer Bar was destined to be my new favorite since I am a massive fan of coconut treats, but the Caramel Almond Brittle won the day IMHO! Amazing flavor and the little pieces of almond brittle are exceptional. I can’t recommend these enough!

Little Oliver has not been introduced to too many sweet treats just yet, aside from his birthday cake, so John and I are continuing to taste-test plenty of options for him as he gets older and we eventually share more sweet treats with him. If they keep this up, Ben and Jerry’s will surely be a staple of Oliver’s childhood, like it was mine. Like mama, like child!