BWS Awareness Day 2020

I am a mom to a real life superhero…he is big, brave, strong, and even has a heart of gold. What more could any mom ask for? We have so much fun celebrating BWS day every year, from parties to family gatherings. This year, with COVID-19, we had to do a little social distancing.

We printed a book that he could share with his classmates. We also had fun decorating BWS butterfly cookies. He takes so much pride in sharing how God made him special. He knows he has some struggles, but we all do.

Our motto is: “In a world where you can be anything…BE KIND! I hope you enjoy his video. Leave a little comment to Jake if you would like to help him celebrate. We are so proud of him!

You can view Jake’s book we made here. We inserted pictures before sending it to Office Max to have it printed and spiral bound for a total of $8! He now has a beautiful book that is all about him. If you would like to create your own personalized book, you can download the template here and make it your own with pictures.

What are some ways you celebrate BWS day with your family? We would love to hear all the fun ideas.

4 Years After Tongue Reduction Surgery

If you are new to our Beckwith-Wiedemann family, you may be asking yourself what is TR? And why does every BWS parent talk about TR? If you are like me, it took me weeks to figure out what TR or TRS meant, and I was too ashamed to ask someone in our group so I waited until that one mom typed it out (thank you to whoever you were)! So let me save you some time:

TR/TRS= Tongue Reduction Surgery

 It took 4 years for this TR post. Not because it wasn’t important, but due to the emotions that are brought up when watching the videos or seeing the pictures from his surgery. It was a time in our life that I wanted to forget because it was painful to watch him go through it. But, I also think it is important to remember our journey. We have only come this far as a family through God’s grace and loving hands guiding us and strengthening us. And when I look back over those first few difficult years, I am amazed at how far Jake has come.

Image Credit: lekton.info/plus/i/isaiah-41-10/

When Jake was born with Beckwith-Wiedemann Syndrome, we knew one of the conditions of the syndrome was an enlarged tongue. In the NICU he was on a feeding tube due to his tongue size, but it was only slightly enlarged. By the time he was 3 months old, his tongue had tripled in size. He was having issues with breathing, sleeping, and being able to feed from a bottle. I still remember agonizing over whether or not to do the surgery. We had half the medical team suggest surgery, while the other half argued he may “grow into his tongue”. In the end, out of medical necessity we chose to have the TR surgery.

3 Months Old-before TR surgery

We flew to St. Louis to see Dr. Marsh. The recovery was the most difficult part to watch him go through. It was long and there were lots of tears having to force him to eat and watch him learn to use his new tongue. But, after the swelling went down, he healed quickly. I still remember the day he put his lips together for the first time and blew bubbles at me. I had streams of happy tears rolling down my cheeks. It was then that I knew we had made the right decision.

By 3 weeks post-op, he was able to feed from a bottle in less than 30 minutes (which used to take over an hour each feeding), his breathing improved, and he started making more baby babbling noises. Although the surgery allowed his tongue to fit inside his mouth, the lack of movement/flexibility and thickness of his tongue was still an issue. He was in feeding therapy starting around 9 months old. Eating pureed and solid food was a challenge for him as everything was pushed out by his large tongue.

3 Months Post-Op (9 Months Old)

Fast forward 4 years: His eating has improved tremendously and most people don’t even notice his tongue size anymore. We still need to cut his food into smaller pieces as he still has a slight open bite which makes biting things more difficult. We are constantly reminding him to chew as he gets tired of chewing and will resort to swallowing food whole (which at times has resulted in the Heimlich maneuver). I am now known in my mommy-group as the one who can finger sweep any child’s mouth for a foreign object in less than 5 seconds. The only other issue we are still working on is his speech. He is very delayed in speech pronunciation. He drops most ending sounds of words, and a lot of sounds are difficult for him to say. He is in speech therapy through the public school as well as private. We weren’t seeing an improvement in his speech until recently. But in talking with other parents who went through the same thing, they said their child was speaking clearly by 4th grade.

I’m so excited to share his TR results video with you. It was the most difficult decision we had to make and the results remind me every day that we made the right decision for him. I know the agony you are facing when having to elect surgery so I hope this video helps you see the other side of recovery.  Some of the photos are graphic post-surgery, but I promise, the results are astonishing. We are so thankful for his surgery which allowed Jake to eat, breathe, and talk like any other kid. Please feel free to ask any questions you may have regarding the surgery.
I truly believe BWS stands for: Babies With Strength!

Jake’s Tongue Reduction Post-op Video

You may also like to read our post from the week of Jake’s TR Surgery:

Tongue Reduction Surgery

Jacob's Journey

BWS Awareness Day

We always look forward to celebrating BWS day. It’s been a special day that we have set aside as a day to celebrate Jake and make him feel special in spite of his differences. Our hope is that it helps us shed a positive light on his syndrome.

The first year, we had an amazing friend who put together a BWS Walk around a local park.

The second year, we organized a BWS group at the local Bubble Run 5K to help raise money for the local children's hospital.

Last year we threw a fun BWS party with his friends! Everyone wore YELLOW for childhood cancer awareness and the house was decorated in yellow and green. We had yellow balloons, banners, streamers, and even yellow and green themed snacks!

But this year BWS day snuck up rather quickly with the birth of our second child just a few weeks ago. So if you are strapped for time like me, and need a quick and fun way to throw together a BWS day…here are a few fun ideas.

1. BWS Butterfly Snacks

I saw this idea on Pinterest awhile back and thought they would make a cute BWS themed snack. I purchased the sandwich sized ziplock bags and filled one side with 1/4 cup of goldfish and the other side with halved green grapes. Then placed a clothespin in the middle. Viola! A simple and fun BWS day snack! 

2. BWS Treat Bags

Jake had so much fun finding yellow themed items at the local dollar store and Party City. He chose yellow bubbles, balloons, gold necklaces, chocolate gold coins, yellow lollipops, and added one of the BWS Awareness bracelets. We then placed all the items in a ziplock bag and stapled a yellow tag at the top with a special note from Jake. He brought these bags to school and passed them out to his classmates. 

FREE PRINTABLE DOWNLOAD: If you would like to download and print the BWS Tags click here. Feel free to edit and personalize the tag. We printed ours on yellow cardstock. 

3. WEAR YELLOW for BWS

Every year we invite friends, family, co-workers and classmates to wear YELLOW and GREEN for BWS. We pass out BWS Awareness bracelets and take photos! It's a fun way to get everyone involved and raise awareness. 

FREE PRINTABLE DOWNLOAD: Click here for the flyer his teacher passed out at school. Please feel free to download and personalize. 

4. Make a BWS Shirt

We have so much fun making a BWS shirt every year. We buy a cheap yellow shirt (I've had the best luck finding one at Walmart and Hobby Lobby) and iron on a fun saying. His shirt last year read "I'm BIG and I know it!". We purchased the iron-on letters to make the shirt. This year we originally purchased those adorable gray shirts from Kim. We absolutely LOVE them, but his school was doing a yellow-themed party for him so I needed a yellow shirt and I of course waited until the last minute to find one. So instead of scouring the stores for a cute yellow shirt, we created the design online, and then printed it on iron-on transfer sheets.

You can use Microsoft Word, Canva.com (which is a free website where you can create a design, but they will ask you to pay for certain images/fonts and to remove the watermark). I purchased the Avery brand iron-on transfer sheets and used the Avery.com website to create a free design. Just make sure you use an ink jet printer! I tried to use our laser printer and the iron-on paper melted to our printer...oops! But luckily we have an amazing neighbor who let us print the design and it turned out so cute!

FREE Printable Download: Click here for a PDF file of the design. Feel free to download it and print it onto an iron-on transfer sheet to make your own BWS shirt. 

What are your fun ideas for celebrating BWS day?