Tag Archives: support

Undiagnosed: Medical Refugees Launches Kickstarter

Several months ago, I had the honor of sharing Braxton’s diagnostic journey with a crew who is currently filming a documentary about Undiagnosed patients across the country.

Braxton’s story is featured to speak about the importance of finding a diagnosis, how a diagnosis can give hope and direction for medical care.  Without a diagnosis, families are left in the dark with no way to plan for the future.  The not knowing is the worst part of the journey.  This documentary aims to bring light to this important population and revolutionize the healthcare industry.

The Kickstarter project for this film kicked off today.  Watch the trailer and please read the letter below and consider donating to help complete this film.  Share this with everyone you know.  The more money we help raise, the faster the documentary can be completed! Thank you for your continued love and support of Braxton.

 

——————————————————

Dear Friends,

Our Kickstarter crowd funding campaign to raise $150,000 to complete Undiagnosed: Medical Refugees, a groundbreaking documentary film, has now officially begun!

For those of you who haven’t yet heard about this remarkable feature film, Undiagnosed is the untold story of the millions of people just like you whose lives have been devastated due to unknown or unsolved illnesses. What understanding more about the predicament of children and adults in this difficult situation could offer to the future of medicine is astounding, yet this population remains virtually ignored. The creators of this film are dedicated to starting a movement to benefit individuals with undiagnosed illness, as well as the healthcare system they must depend on for assistance.

The success of this campaign  completely depends upon public support, so please donate what you can (BTW there are some great “rewards” your donations) and most importantly, forward this email to as many people as possible– family, friends, co-workers, and any networks in which you participate. Please bear in mind that we must raise every dollar of the $150,000, or else we receive absolutely nothing!

Our team has been shooting this movie for over a year – without pay, and funding everything out-of-pocket. We are now 80% finished with production and need your help to raise the funds necessary to bring the film’s vision to fruition.

You can see the powerful movie trailer and campaign video, as well as follow this documentary’s progress and success on the Kickstarter campaign page:

https://www.kickstarter.com/projects/792434652/undiagnosed-medical-refugees-a-groundbreaking-docu

From the bottom of our hearts, thank you for your generosity in supporting this great cause!!

 

Sincerely,

Crystal Shearman
“UNDIAGNOSED” I PRODUCER UNDIAGNOSED FILMS, LLC

Leave a comment

Filed under Kids and Family, Life, Special Needs Child

Feeding Tube Awareness Week 2014!

FTA Week 2014This week is Feeding Tube Awareness Week!! I have not been as diligent this year in writing as I was last year, but that doesn’t mean that FTA Week is not important, because it is! We proudly celebrate our tubie love.  Since I did not keep up with the daily topics, I’m going to do one post to catch up for the week. This will help me keep my answers short and sweet (ha, right!?)

Let’s do this.

Day 1: Share your Feeding Tube Awareness Week video and story.  

We did not make our own video this year, but we were a part of the video created by The Oley Foundation which celebrates people of all ages with feeding tubes! The theme for this year’s FTA Week is “Nothing Can Hold Us Back” which is clearly evident in this video.  Enjoy!

Most of you know our story, but if you are new, the short version is that Braxton aspirated at birth so it was not safe for him to breast or bottle feed.  Aspirating means that you are swallowing fluid in to your lungs instead of your stomach.  Braxton also had very poor coordination and low muscle tone in his face so he simply could not eat enough to sustain his weight.  At 2 weeks old, Braxton had surgery to have his G-Tube placed.  He quickly began to thrive and finally was sent home from the NICU the next week.  We have worked very diligently with our Speech Therapist on feeding and we are just now, at 2 and a half years old, seeing real success.  Braxton is eating pretty much all of his food by mouth now and we are only using his tube to give him water to keep him hydrated and supplementing his feeds just to make sure he is getting the calories he needs to maintain his weight and gain appropriately.  For more information you can read our post from Day 1 of FTA Week 2013 or get the full scoop on the Day Braxton Became a Super Tubie.

Day 2: Share your tips for feeding on the go or in public!

The best tip is: your kid HAS to eat no matter where you are so don’t be afraid to pull out your tube and feed your child! We were so scared in the beginning about what people might think of us or Braxton when they saw us using the feeding tube.  Would they think he was chronically ill or contagious? Would they think we were bad parents? That we MUST have done something for our child to be this way? It took a while for us to be comfortable with public tube feeding, but now it is really no big deal.

We have fed in restaurants, in doctors offices, while on a road trip in the car, at the park, anywhere! We always made sure we had the supplies we needed and we kept a few extra in the car, just in case! We were given a backpack from our medical supply company when Braxton first had his tube and required a pump.  It was easy for us to set up the feed and just go about our business.  We could go to the mall or the zoo and his backpack would hang on the stroller as the pump ran.

In the beginning, Braxton’s feedings were about an hour long and eventually decreased to about 20 minutes.  If we were going to be out long enough for two feedings, we kept the 2nd feed cool in a lunchbox or lunchbag with an ice pack.  We bought a portable bottle warmer for the car so that we could heat his food up on-the-go.  Many times, we would arrive at a restaurant and ask them to bring us a cup half-full of hot water and we simply placed the bottle in the cup to heat up.

Always plan ahead.  Think about where you are going and what you will need. An extra syringe? An icepack? An extra feeding bag? A change of clothes just in case the food doesn’t stay down? Make a checklist if needed, but eventually, you learn exactly what you need!

Day 3: Show how tube feeders can do what they love to do.

This was another thing I was worried about when we first got our feeding tube.  I wasn’t sure exactly how this might affect Braxton’s development.  I remember asking the doctor if he would be able to learn to crawl or have ‘tummy time’ since his tube was right in his abdomen.  The doctor assured us that it would not be a problem, and it surely wasn’t! Braxton didn’t crawl until he was about 15 months old, but once he figured that out there was no stopping him! Braxton quickly began crawling lightning fast.  One minute he was in the living room and the next he was in the kitchen pulling tupperware out of the cabinets.   We also worried about bathing and swimming.  I asked if we needed to cover his tube every time he bathed or avoid the swimming pool.  Again, the doctors assured us that he would be just fine.  So far, Braxton has not been limited in any way because of his tube.  He is thriving!
Here are some pictures of Braxton just being a regular kid!

Day 4: Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier?

Support! We became involved with a local support group and met other families whose children are also tube fed.  Seeing and truly understanding that we weren’t alone was a big help to us.  Connecting with virtual support was also helpful.  Groups like the Feeding Tube Awareness Foundation really helped us understand that we were not the only family with a child who needed a feeding tube.  We have really learned to love and appreciate the tube for a number of reasons.  When Braxton would get sick often, we didn’t have to worry about him dehydrating or not eating because we could simply feed him with his tube and adjust the speed as needed.  Using the tube for medicine has also been helpful, because making a child take medicine by mouth is no simple task! As we learned more and met others the ‘stigma’ went away.  Now, Braxton’s tube is as much a part of him as any of his limbs! At the end of the day, the tube kept Braxton alive and we are forever grateful for that.

Day 5: What are your tube feeding hopes and dreams for you or your child in 2014?

Yummy in my tummy!

Yummy in my tummy!

Well, of course, we hope this is the year we have a tubie graduate! Yes, we are thankful for his tube and we have learned to appreciate it, we would love for Braxton not to depend on it so much.  He has recently made some really amazing progress eating by mouth and we are so excited! The next step is getting Braxton to drink by mouth.  We are working on straw drinking from a cup and so far Braxton is doing well.  He has drank up to an ounce of water in therapy taking small sips from a honey bear type sippy cup.  I tried some apple juice and Braxton was not a fan! We will need to work on flavors and temperatures before we can get graduate from the tube.  I’m very happy with the success Braxton has made and cannot wait to see what he accomplishes this year!

 

Day 6: Share the tubie love! Share pictures of you or your child living life to the fullest. Today is about living and loving life.

This one is easy.  Just glance through any of our photos on our Facebook page and you will see that nothing holds this kid back! Braxton is so full of life and love and happiness.  His joy simply pours out of him and into the lives of others.

Day 7: Share your favorite Feeding Tube Awareness Week post, photo or video.

I think I just did! I was not able to keep up with the daily topics this year, but I think this “catch up” post is perfect for FTA Week.  This captures all of the incredible things Braxton has been able to accomplish because of his tube and shares our story.  Thank you to all of the people who shared our photos throughout the week and our posts from last year.  We are looking forward to an awesome year!

FTA Week 2014

 

————————————————————————————

Simply click to vote! It's THAT easy. Then feel free to browse some other really great mommy blogs. Thank you!

Simply click to vote! It’s THAT easy. Then, feel free to browse some other really great mommy blogs. Thank you!

Leave a comment

Filed under Kids and Family, Life, Special Needs Child

World RTS Day

World RTS Day

 

If you have been following our story from the beginning, you’ll know that over the past year we have celebrated many many awareness days along this journey to diagnosis.  In April, we finally got the diagnosis that has connected us with a fantastic worldwide support group and I’m very fortunate to share in our first World RTS day with this new family.

This doesn’t mean that we will abandon some of the days we’ve celebrated or stop trying to help raise awareness, because they are really all so very important.  We will continue to celebrate Feeding Tube Awareness Week, as Braxton’s feeding tube has become such an integral part of our life. It’s such a part of our life that it’s just “normal” for us, so much so that I forget to even mention it as part of Braxton’s medical condition sometimes, because that’s just the way things are. I don’t even think of it as anything different or awkward anymore.  Crazy how that happens.  We will still celebrate Rare Disease Day, and this time we have a name to represent as well.  And I will always, always have a place in my heart for the Undiagnosed community and Undiagnosed Children’s Day.  I will continue to help in that mission in giving these children a voice and helping them to find the resources they need in their journey to diagnosis.  Although we have an answer, there are still SO MANY searching and we continue to support them every step of the way.

The last few months have been full of so much research and learning everything I can about Rubinstein-Taybi Syndrome.  As I learn, I’m excited to share everything I can through our blog and our facebook page to help others learn about RTS. Awareness is the key to funding research and finding answers.  Thankfully, there is some research available, but there is still so much to learn about RTS, why it happens, and how it really affects an individual. I’m so lucky to now have the chance and platform to do my part in raising awareness.

The RTS community has been phenomenal in this short period of time since we have joined. I have had the pleasure of speaking to several parents who have a child with RTS ranging in age from an infant to adult. I’ve celebrated birthdays with them virtually and milestones and really have so much more hope for our future.  Having a support group to reach out to when you have questions is so important because you learn about so many different experiences. I’ve learned that this community is really like a family. Everyone is incredibly supportive and encouraging through everything.

I’m really looking forward to possibly attending one of the RTS reunions next year so that we can finally meet some other families in person.  Things just didn’t work out this year for us to attend, but I know to keep an eye out next year so we can make plans! You really don’t understand how exciting that is for us.  It’s nice to see the community coming together and making these meet-ups happen.  As Braxton gets older, it will be nice for him to be around kids who look like him and share his experiences.  Hard as we try to include Braxton in everything and not make him feel “different”, he will eventually understand that he is, so having the opportunity to interact with other children with RTS will be great for him in the long run.  It will also be a good chance for Aileen to meet other siblings and make friends who understand exactly how she is feeling.

Since receiving our diagnosis, Braxton has made some really incredible progress! I know now that the average age children with RTS learn to walk is around 2 1/2 years old and Braxton is almost there! He is very actively working on cruising around furniture. He’s tolerating standing a little more than he used to.  He used to just drop immediately and crawl off, but we’ve been able to get him to stand longer and even without support a few times! I’ve watched him cruise around our coffee table and transition to our couch without hesitation several times. It’s just a matter of time before he takes off on us! He is still working on verbalizing.  Braxton makes lots of sounds and loves to laugh.  He still hasn’t said any words, but he’s trying.  He’s also getting really good at using the iPad which will be great when we start looking at communication programs.

We’re still very new to our diagnosis, but we’ve learned a lot from research and through talking to other families.  I look forward to Braxton’s continued progress and getting to know our RTS family much better in the years to come.  I encourage you to learn more and share our story with others to promote awareness.  Every like, share, or comment is one more person who has at least heard of Rubinstein-Taybi Syndrome and that means so much to us. Thank you for joining us on this journey. I hope you stick around because you don’t want to miss all of the amazing things I’m sure Braxton has in store for us all.

To our RTS brothers and sisters, today we celebrate with you! Happy World RTS Day!

RTS Facts

3 Comments

Filed under Life, Special Needs Child

Full of Gratitude

We are now 2 weeks post-diagnosis.

Most parents will see life as life-before-kids and life-after-kids, and to some extent, we do too. But, for now, we’re definitely seeing life as life-before-diagnosis and life-after-diagnosis.

While nothing has physically changed, our mind state seems to have shifted.  2 weeks ago, our diagnosis was met with trepidation.  We were still uncertain about what the future held for our son, and sure, I still don’t really know, but I’m much more hopeful than I was in life-before-diagnosis.

2 weeks ago, the only people I knew with any relation at all to Rubinstein-Taybi Syndrome (RTS) were the few people who had contacted me via our blog to ask if Braxton had been tested for it.  When we received our diagnosis, I contacted each of them and told them their hunch was right and thanked them for bringing it to my attention.  That day that I wrote about our diagnosis and the new journey that lie ahead, someone commented on the post and told me they passed the blog on to a friend and that friend in turn contacted me and told me she knew several people with RTS.

Just 3 days later, she added me on Facebook and posted a status welcoming us in to the RTS family, and within a few hours I had new messages and friend requests from SEVERAL other people who had children or family members with RTS all willing to reach out and connect with me.  And just like that, I was hooked in to a fantastic support network with people all over the world ready and willing to walk with us on this journey.  Within a few days I have personally added and talked to 42 individuals who have some experience with RTS on one level or another.  I also found a Facebook Group with over 600 members.

I am repeatedly amazed at the advancements technology has made.  10 years ago, I would not have imagined getting “connected” so quickly.  I seriously don’t know how I would have handled this journey without technology.  The ability to reach out to others, write about life, instantly connect with people who share my experiences, is to some degree unfathomable…yet, here we are, and that’s exactly what has happened.

I’ve spent the past couple weeks researching and taking in as much information as I can.  Memorizing the stats and characteristics and probabilities of this, that, and the other, not because I believe those figures completely describe my son, but because I now I have a new responsibility to educate others and create awareness.  Rubinstein-Taybi Syndrome is pretty uncommon and almost none of our physicians know anything about it.  It’s now my job to tell them what I know based on research, and Braxton’s job to teach them the reality.

The reality is that most of the research is outdated.  The prognosis seems so grim from the research available, but I’ve learned from REAL people that the possibilities are endless.  Every child continues to write their own story, and I have no doubt Braxton will do the same.

Individuals with RTS are supposed to be almost completely non-verbal. I’ve spoken to parents who say their kid will talk your ear off.  And parents who say their child doesn’t have many words, but they are excellent with sign language or a communication device. Non-verbal? You’d never know that spending one afternoon with Braxton.  He has been babbling like crazy in the past few weeks.

You’d be surprised to learn that many of the children with RTS have a passion for “typical” activities.  I’ve spoken to parents who have children who are playing baseball, swimming, running, wrestling, cheerleading…things you’d never guess if you just took the research as fact.

One thing I’ve confirmed is that the feeding difficulties usually DO resolve.  Many of the parents I’ve talked to say their child did not need a feeding tube forever.  Most say by 5 or 6 their child was eating very well.  Braxton is making strides toward that goal, and I’m certain he will be a great eater in his own time.

I’ve also learned that Braxton’s lovable social nature will never go away.  I see pictures of 13 year old boys still willingly sitting on mom’s lap, content with mom’s hugs and kisses and my heart smiles knowing that I’ll still be able to hold him close as he grows older.

SillyMonkey.jpg

Making monkey sounds with mommy is hilarious

I’ve also ‘met’ a woman who is in her 30s and living completely on her own.

Are these things true for all children? Probably not.  Experiences vary greatly, but it’s nice to know it’s not as scary as the research makes it out to be.

Are there still hard times ahead? Absolutely.  The lifelong battles Braxton will have to face aren’t going anywhere.

The good thing is we are already monitoring everything that may present challenges, so we are proactively preparing.  Some days will still be more difficult than others.  Again, not every day is good, but there is something good in every day.  And for the days that aren’t so good, I hold on to hope.  I remind myself of these positive experiences of other families.  I reach out to the new support network I have to find the “seasoned” mom to help me through.  I cannot express enough how truly thankful I am to have such a network in my reach.

20130502-100553.jpg

The possibilities are endless, and Braxton intends to prove that.

So, so much gratitude.  My heart is full again.

3 Comments

Filed under Family, Kids and Family, Life, Special Needs Child