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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

 

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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

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Undiagnosed Children’s Day 2013

SWAN USA Banner

I wrote a little bit earlier this week (this post here) about some of our feelings about being undiagnosed and the upcoming genetics appointment looming in the air, but today I’d also like to share this video from SWAN USA (Syndromes Without A Name) featuring Braxton and many other children on the journey to diagnosis in honor of Undiagnosed Children’s Day.

Today, we celebrate Braxton and all of the children around the world who are still searching for a diagnosis.  Although all of our stories are different, we all share so many of the same joys and sorrows.  We celebrate every bit of progress no matter how small, because to us none of it is small.  We all know just how hard our child worked to accomplish things like tracking an object as it moves across a room, sitting up, rolling over, forming sounds, turning the page in a book, pulling up to stand, taking a few bites of food…everything that may seem so insignificant to the average person is cause for triumphant celebration for us.  And to those of you who have joined us on this journey and celebrate all of these steps with us, we can’t tell you how much it means to us to have your love and support.  We all worry about what tomorrow will bring, if our child will even see tomorrow, if taking our child on a play date will bring them life altering sickness, even if it’s not mentioned out loud, I guarantee it’s always in the back of our mind.  But, as I said in my last post, you can’t focus on the bad. You must make a conscious effort to hold your head high and keep moving forward.  One thing is evident to me as I read other stories of undiagnosed families..we all take it day by day and cherish today because tomorrow is not promised.  As I read through blogs or follow facebook pages, there are so many smiles and there is so much love in each and every child.  Despite their circumstances these children have so much to smile about and have a way of touching the lives of so many.

Today, I encourage you to keep them in your heart and celebrate their lives.  Every day, they are beating the odds. Every day, they are changing the world. Every day, they keep fighting. And every day, they fill the lives of so many with so much joy and happiness.  Braxton truly brings us more joy and happiness than we could ever imagine, and I’m certain the same is true for all of these children.  Don’t feel sorry for any of them. Celebrate them. Pray for their continued progress and the continued strength of their family. Take time to get to know them and share their stories.  Pray for the science and technology to catch up to them before it’s too late.  Pray for answers. Pray for courage if answers cannot be found.  Thank you all so much for joining us on this journey. It’s far from over, and your love and support help keep us going. I simply cannot thank you enough.

To our fellow families along the journey, today we celebrate with you. Happy Undiagnosed Children’s Day, keep up the great work with your child, you are truly doing an amazing job! Much love, from our family to yours! ❤

And just in case you didn’t know, our blog now officially has a page on Facebook.  Come on over and ‘like’ our page to see even more on our story every day and meet some of our other precious friends on their own diagnostic journey.

Happy Undiagnosed Children's Day!

Happy Undiagnosed Children’s Day!

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My Biggest Fear And How YOU Can Help

Stop the r-word.

Stop the r-word.

Sure, at first glance, Braxton doesn’t appear to have any medical issues.  In fact, most only see the handsome, smiling baby staring back at them, but things are not always what they appear to be.  That brings me to my first issue: What does “disability” look like? Does a person need to appear physically deformed before you consider them disabled? Before you knew Braxton, did you know “disabled” people could look…”NORMAL”? There is no standard of what people HAVE to look like in order to be classified as disabled, nor should it matter what they look like to deserve respect! That brings me to my next issue: RESPECT.  One of the ultimate forms of disrespect is name-calling and using words like “retard.” Mentally Retarded was once an official medical diagnosis used to describe many individuals who were “slowed or delayed in cognitive ability” (the official definition of “retard”).  Wait a minute…what do you mean “was once an official diagnosis” ? Yup, ONCE.  “Mentally Retarded” is NO longer recognized as an official diagnosis. The term has been stricken from legislation, healthcare policies, and diagnostic terms partially due to the extremely negative connotation the word now has.  Over the years, society has taken a medical term and the individuals it was ascribed to and transformed the word in such a way that not only is it mean and hurtful, it completely demeans the worth of millions of individuals.

Finally, this brings me to one of my biggest fears.  Eventually, Braxton has to go to school.  I am terrified of that day.  I’m not afraid of him being in school, but I am afraid of the other kids he will be in school with.  We are still so unsure of what the future holds for Braxton with whatever diagnosis he may have, but I’m certain he will have cognitive delays.  At 20 months, Braxton is actually more like a 10-11 month old baby developmentally.  It is possible that he “catches up” and maybe even has “normal” cognitive ability, but no one can tell me that with any certainty.  Who knows if his diagnosis may also bring physical deformities later in life – there is so much we don’t know right now, and most days I silence those thoughts and thank God for the blessings of today.  I’m so thankful that Braxton is doing as well as he is, but I know he’s still not where he should be.  I’m so scared of Braxton going to

Teach your children to be respectful

Teach your children to be respectful

school and being bullied.  I know it’s going to happen and there is nothing I can do about it.  And THAT is what terrifies me – the nothing I can do about it part.  I’m deeply saddened that as a parent I cannot help shield my son from the cruelty and hate in this world, that all I can do is help prepare him to face it, and hope he is able to actually defend himself when the time comes.  Braxton will be one who the term “Mentally Retarded” describes.  Actually, the official term is now “Intellectual Disability” and I know this is something we will have to deal with.  Braxton is more than likely always going to be behind his peers.  I don’t even know if Braxton will ever even speak correctly.  He makes many sounds, but none are real words with meanings.  He may need an assistive communication device to talk to us.  Hopefully he will learn sign language to communicate with us too.  He’s always going to be different.  We will do our best at home to teach him to embrace his differences and not be embarrassed by them.  We will teach his sister how to stand up for him.  She already loves him despite any disability, and I’m so thankful she will also grow up and be more tolerant of others because she has grown up in such an environment.  But hate, cruelty, bullying, ignorance, and a slew of other things no child should EVER have to deal with we will HAVE to prepare for, because it will inevitably happen.

I will admit (although I’m ashamed to) that yes, I once threw around the word “retard” like it was nothing.  I felt like if I wasn’t using it toward an individual with an intellectual disability in a mean way that it was no big deal.  I was wrong. Very wrong. It’s a HUGE deal. Sadly, it took having my own child with disability to get me to understand this.  And that’s where YOU come in.  I need YOU to help me bring this issue to light. To understand it’s importance in our life and how it directly affects us.  I can’t change the future, I can’t stop the hate my son will face, but I CAN attempt to educate everyone I meet and everyone who reads The r-wordour story about the terrible effects of the “r-word.” The word is usually used in a derogatory manner to mean any number of things including: stupid, pathetic, loser, moron, idiot – none of which is how I would want my son to be described.  This is so much more than a language change; it’s a culture change.   We as a culture have to change the way we think about people with disabilities and words like “retard” and ultimately strike that word from our vocabulary altogether.  You may not realize that your choice of words is harmful to people, but I’m here to tell you that it is.  The r-word hurts million of people and kids like Braxton.  If you wouldn’t want someone picking on Braxton, you shouldn’t stand for anyone slandering another child similar to Braxton.  When people are called out for using the r-word the standard response is something like “Oh, I didn’t mean YOUR kid” or “I didn’t mean it like THAT” or “well, you know what I meant” No, actually I don’t know what you meant.  From where I stand you meant to say that you did something stupid or foolish, or that someone else did something pathetic, or that someone is a loser.  Why not say that? Why not choose another word? Why not strike the insult altogether? The Special Olympics started the “Spread the word to end the word” campaign several years ago to tell people how harmful the r-word is and to get people to think about what their words mean.  Today is the national campaign day to spread the word.  There is still time for you to go to r-word.org and add your name to the list to pledge to STOP the use of the word “retard.” Little by little we can all make a difference for Braxton and all the children like him.

Spread the Word to END the Word

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Spread The Word to End The Word

So today is “Spread the Word to End the Word” What word might that be? The “r-word,” you know, “retard.” Although this post doesn’t specifically deal with the “r-word,” it’s about how words can hurt and ultimately has the same underlying goal: RESPECT! People of ALL abilities deserve respect no matter what. I will probably write more on the “r-word” later, but for now re-read this post I wrote last year about respect and tolerance for children with disabilities.

Journey Full of Life

If there was ever a question I absolutely abhor hearing, that would be the one. [Notice, I used abhor, not hate, not dislike, but abhor – extreme repugnance or aversion; to detest utterly; loathe – get the idea?] This one simple question can cause so much damage and most don’t even know it.

Let me first make clear, I don’t care what other people think or have to say about my kid. It doesn’t make US treat him any differently, love him any less, or change his plan of care. Kids, however, are another story. Sure, he’s not old enough now to understand the inquisitive eyes, but one day he’ll see just how cruel the world is and wonder what’s really going on. We took Braxton out a few times over the weekend after his surgery, and you would NOT believe the ugly looks he got. While I may just…

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