Tag Archives: parenting special needs

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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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!

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Finally, a Breakthrough

Yummy in my tummy!

Yummy in my tummy!

Ladies and Gentlemen, it’s safe to say Braxton has finally made a HUGE breakthrough in feeding!! After a very long 15 months, Braxton is eating again! AND he enjoys it!

When Braxton was about 10 months old we started working on solid baby foods and he took to them right away. He was eating 4 ounces of pureed baby food 3 times a day and even drinking 6 ounce bottles.  At 14 months old, he came down with pneumonia and was hospitalized for 5 days.  After that, he began vomiting everything that we tried to feed him and he made a huge regression.  He stopped eating completely.  As he was vomiting so often, he quickly learned that anything that went in his mouth would make him feel bad, so the natural solution is to not let anything near your mouth.

We have struggled for nearly 15 months for every single bite of food we could possibly get him to eat to overcome this severe oral aversion.  We tried so many different strategies to make feeding fun and enjoyable, let him dictate the flow of things, and nothing seemed to help.  We switched over to a homemade blended diet last December, and since then Braxton has completely turned around.  He hasn’t vomited in a year now, so he is learning that it is safe to eat again without having anything bad happen.  A few months ago, he started to eat in Speech Therapy with his therapist.  Then, he started to eat for his teachers, but still he would not eat for us at home.  I felt so defeated and like a failure. Mommy guilt hit hard when others were more successful at feeding my child than I was, but we kept working.  Occasionally, he would eat about an ounce, maybe two ounces for me, but not much more.  However, we finally have success!

Last week, our speech therapist called to say that Braxton ate TWO WHOLE pouches of pureed food that I had for him at daycare.  That’s EIGHT ounces!!! When I brought him home, we tried again and he ate another 4 ounces! The next day at daycare, he ate SIX ounces! Over the weekend, he ate at least 4 ounces for me each day and with every feeding, he is getting so much better.  He is finally actively opening his mouth, coming toward the spoon, and even searching for the food as if I’m not getting it to him fast enough! I am so overwhelmed with joy to see Braxton eating and actually enjoying it! We have waited so long and worked so hard for this moment.

We are still a very long way from having Braxton’s feeding tube removed, but he is making steady progress.  I can’t tell you how frustrating it’s been along the way, to see him make progress only to be setback over and over again.  We are hopeful this time that we will continue to move forward.  He is still eating mostly pureed foods, but as his success continues, we will move toward more textured foods and then hopefully more table foods.  We offer him lots of finger foods, dry cereal, cookies, biter biscuits, and things like that, but he still isn’t quite as successful getting those to his mouth and IN his mouth.  He will just hit them against his chin and then throw it down.  Right now, I’m just happy he is eating anything at all.  We are so excited! Yea, Braxton!

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Alternate Funding for AAC with an iPad

First and foremost, I have to say that this post is NOT sponsored/paid/promoted, etc.  I’m not receiving any kind of compensation.  This is simply information I have learned that I would like to share with other families looking to purchase an iPad with the intent to use it as an Augmentative Communication device.

Recently, I’ve learned about two different programs with two different mobile carriers that are actually a great options for purchasing an iPad.

First, I have Sprint for my mobile phone carrier.  I went in to see about an upgrade and learned about Sprint’s “One-Up” program.  For cell phones, the “One-Up” program allows you to purchase a new phone for only the tax on the device.  You then finance the remaining retail amount with your regular bill. Sprint also offers you a $20 discount on their Unlimited My Way plan for choosing this program.  At the end of the year, you can choose to upgrade to a new phone or keep the one you have.

Here is how this worked for me:

– I chose to upgrade to the 16GB iPhone 5c.  This phone retails for $549.99
– I only had to pay the tax for the $549.99 which is $45.37 (That’s 8.25% sales tax here in Texas).
– The $549.99 is then financed over 2 yrs which comes out to about $22 per month.
– I then had to change to the Unlimited My Way plan which is $85 per month.  However, Sprint gives you a $20 discount when you choose the “One-Up” option, which makes this only $65 per month and gives you unlimited talk, text AND data! Sprint is currently the only provider which offers Unlimited data.
– My total bill is now $65 for the phone plan + $22 finance fee = $87/ month which actually came out to less than what I was paying previously!

Of special note here is the fact that in 12 months when Apple release the new iPhone I can do this same program with the new iPhone. You DO have to turn in the old phone to get the new one.  No more waiting 2 years! Plus, if you do the math, at $22/month for 12 months, I’m actually getting the phone for about $264 which is considerably less than buying it outright.  If you choose not to upgrade after a year, you continue the finance payments another 12 months and then you own the phone.

So how does this help if I want an iPad??

You can do the “One-Up” program with the iPad!

The rep told me that I could add an iPad to my account for $10 a month plus the finance charge, which for a $649 iPad would be about $27/month and I’d only pay tax of $53 that day.

So, if you are wanting to get an iPad for your child and you have Sprint, you could go in to a Sprint store (has to be an official Sprint store, this option is not available at third party retailers like Best Buy, Walmart, etc) and ask to add a line to your plan using the “One-Up” plan.  Pay the roughly $60 tax and you walk out with a brand new iPad that same day.  Monthly, you would be paying roughly $50 for service with the option of using both cellular data and wi-fi.

Today, I learned that AT&T has a similar program.  AT&T has the “AT&T Next” program which is essentially the same thing, but they do not offer a $20 discount on an unlimited plan.  They price roughly the same.  Joseph upgraded to a 32 GB iPhone 5s for $37.  Talk about a deal! AT&T actually offered a credit for his old phone which is why that is less than what you would figure taxes to be.  For the plan, the unlimited talk and text plan was $25 per month and then he had to choose a data plan which came out to $45 per month just for data.  When all was said and done his plan plus phone charge came out $95 per month when he was previously paying $150.  The rep also confirmed the “AT&T Next” plan was available on the iPad with a $10 a month plan plus the finance charge for the device of your choice.

When you think about it, you are basically leasing the phone/iPad with the option to upgrade or own it outright at the end of the term.  Either way, it is certainly a worthy option if you are having trouble finding funding for a communication device as many agencies are starting to crack down since many people just want an iPad for the fun stuff and don’t always use it for AAC.

After some research, I see that T-Mobile has the JUMP! program and Verizon has the Edge program, which seem to offer similar options, but also offer a 6 month upgrade option. I don’t know the ins and outs of those programs, but definitely check with them to see if this is an option for you.

Some cons to this of course include the fact that this is JUST for the device and does NOT cover any accessories or communication programs.  Some of the funding options will cover a case and communication program for the iPad, which can deter you from the phone carrier option if you are looking at one of the pricer communication apps.  Many apps offer a free trial so you can see if it is a good fit before purchasing. But, really, you should have a qualified Speech Therapist with experience in AAC complete an evaluation to see what device and what app would be most appropriate.  Many therapists have all the apps and options to try with your child so you don’t spend $200 to find out your child can’t use the app you bought.  And believe it or not, the iPad is not always the best choice.

I hope this information is helpful to anyone looking to purchase a device for their child with special needs.  Even if you aren’t using AAC, there are a TON of apps that really help to improve cognitive skills, fine motor skills, and promote language development.  Check out Bridging Apps for app reviews as they relate specifically to Special Needs.  They also have great information on funding sources if you are looking for grants or other programs that will offer a device and communication program.

Brax and his iPadBraxton has really come a long way with using the iPad Mini and we are finally starting to use a free app to test out choice making using a very basic communication app.  He also enjoys many other apps that teach alphabet, shapes, numbers, music and a variety of other skills.  His understanding of Cause and Effect has greatly improved.  Initially, he would slam his hand against the iPad over and over.  Now, he knows to gently touch and then wait for it to do what it’s supposed to do.  With his communication difficulties, it is promising to see him understand how the device works and the potential it has to help him find his voice.

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Thankful for Team Braxton

Braxta Bear“It takes a village to raise a child” has completely taken on new meaning since Braxton came along.  From day one, we had a small army of people caring for him and working to keep him alive.  Two years later, we don’t have as many people on the “front line” so to speak, but they all stand ready when we need them.

Although there hasn’t really been one standout doctor for us, we are appreciative of them all.  I have heard some real horror stories about families dealing with some not-so-great doctors, and I thank my lucky stars we have only had one really bad experience.  While we have dealt with doctors offices not returning calls promptly, for the most part, they have all been extremely helpful.  I’m thankful our doctors have been proactive in caring for Braxton.  There were times that a test may not have been necessary just yet, but our doctor ordered it anyway.  For example, after receiving our diagnosis of Rubinstein-Taybi syndrome, we knew many kids were at risk for a tethered spinal cord (a condition where the tissue in the spinal column is abnormal which can affect gross motor skills and many other things).  I called our orthopedic doctor to relay this information and ask if it might be worth it to go ahead and get an MRI of the entire spine.  Although we didn’t have a lot of clinical evidence, our doctor wrote the order and Braxton had all 3 MRIs done.  Luckily, the MRIs came back unremarkable only noting very mild scoliosis.  Our pediatrician has also been very helpful and has pretty much ordered everything I brought to her attention or submitted referrals “just in case.”  We are thankful to all of the doctors on our team who have helped us along this journey.

Braxton in PTNow our therapists, are another story.  Each and every one of them is exemplary.  They have all at some point or another, gone above and beyond all expectations.  They love Braxton so much and it’s obvious that he loves them too.  Braxton has had Physical therapy and Speech therapy pretty much since the day we brought him home from the hospital.  He started Occupational therapy some time after, and is doing so well with her too.  We often talk about how far Braxton has come and all that he has accomplished under their direction is truly a miracle.  I love when our PT is visibly excited because Braxton stood without assistance for all of 2 seconds.  He really “gets it” and his excitement is truly genuine.  He is so kind and so gentle, but will totally roughhouse with Braxton when Brax is feeling feisty.  There is an unspeakable bond there and it’s beautiful.

Our PT supervisor has also been phenomenal.  She has taught me so much and is such a wonderful PT Supadvocate for Braxton and children just like him.  She sees so much potential in him that she made it a point to personally make some calls and make sure Braxton had a space at his current daycare.  We were worried at first, but we see exactly why she recommended this move and are so thankful.  She’s really been a guiding light throughout this journey and I thank God every day for bringing her in to our life.

IMG_0398Our Speech therapist has been so patient and determined when it comes to feeding Braxton.  Despite the huge setback and trying to overcome this oral aversion, I see just how hard she is working to help us and love that she is always excited when we see any progress.  She is now working with Braxton on using an iPad communication app to promote choice making, and Braxton is doing so awesome with it.  She is always keeping me updated on his progress and even calls just to check on him when she knows he’s been sick.  I so value her expertise and understanding.

Our Occupational therapist has been really great with helping Braxton really hone in on his fine motor skills.  His progress here is much slower than in other areas, but it’s progress and she’s always so proud of him.  Our daycare teacher made the comment that she loves that our OT doesn’t talk AT Braxton, she talks WITH him.  Braxton isn’t able to respond, but she talks to him as if he is going to talk back to her.  She, like all of our therapists, assume competence.  They don’t discount Braxton because of what he “might” not do, they all operate on the thought that he CAN and WILL do it, it just may take a little longer than normal.

We also receive hearing and vision therapy through our local school district.  They have both been awesome! It’s obvious that they care about Braxton and his progress and continually have “outside the box” ideas on how to promote his skills.  Braxton has especially taken to our hearing teacher as she is so kind hearted and fun to be around.  She has been helping us all learn sign language so that we can communicate with our sweet boy.

We are SO incredibly thankful for this simply amazing team of therapists.

We are thankful to the fans, supporters, encouragers, readers, kind hearted strangers…just everyone who has taken the time to read a blog post (or all of them!), visit the facebook page, like a post, share our story, share in our joy when Braxton reaches a milestone, say a prayer, or simply offer words of encouragement.  This outpouring of love really gets me through the hard days when I’m feeling lonely or isolated.  I can just look at our blog or at our facebook page and see so much love and so many people who do really understand and are hoping for the best.  This virtual support system is so needed and I’m thankful to have all of you on this journey with us.

We are also thankful to our physical support team; our family and friends.  We have had the pleasure of meeting some really great people on this journey who are walking their own path in this special needs world and their support and advice is much appreciated.  We all rally with each other and offer support and encouragement on this bumpy road.  Our family of course has been very supportive and help us whenever we need them.  Having all of these people to lean on during the hard times or cheer with us through the good times has been incredible.

We are so thankful for everyone in our life who has in some way or another contributed in the care of Braxton.  Our little village has helped this kid move mountains.  We didn’t know what to expect, but it’s obvious that a little bit of love and encouragement can go a long way.

Can’t think of anything more to say, other than: Thank you, Team Braxton. Just, thank you.

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Thankful For the Hard Times

I know that sounds crazy, but think about it. How can you ever really know good times without ever experiencing the bad times? If you never experienced pain, sorrow, and hurt, you would never know to recognize good health, prosperity, and joy.  Not to mention that learning to get through the hard times builds character and teaches you the courage and strength you possess.  We have been dealt our share of hard times and I’m certain they are far from over, but instead of being angry about them, I’ve learned to be thankful.

So, wait. You’re thankful that your child has a genetic disorder?  Well….yes and no.

BraxtonEvery mother of a child with special needs has wished their child’s syndrome away.  No child should ever have to suffer or fight for life the way our children do.  We learn to adapt, we step up and care for our children, wear the badge of “supermom” as both an accolade and a curse, and we love our children fiercely.  The sad truth is that we can’t simply wish the syndrome away or hope for a magic cure.  So in that respect, no, no I’m not thankful that Braxton has a syndrome.  I’m not thankful that he has significant delays. I’m not thankful that he can’t verbalize how he feels, what he wants, or what he needs.  I’m not thankful for the hours we spend in the doctor’s office, in therapy, or on the phone with insurance companies.  No child and no family should ever have to do those things.

HOWEVER, I AM thankful for what my son’s syndrome has taught me. Thankful for what he has taught me about myself, life, parenting, and truly unconditional love.  I’m thankful for the people we have met and the connections we have made.  I’m thankful for the love and support we have found in the special needs community.  I feel that I’m so much more thankful about everything than I would be if Braxton was ‘typical.’

The hard times have taught me patience.  I’ve learned to give Braxton the time he needs to figure things out, and while watching him instead of rushing him I see the wonder in his eyes, the intent with which he tries to accomplish a task, and the pride he has in himself when he does it all on his own.  I’ve learned to be more patient with others as well.  I’ve not perfected this yet, but I do notice that I lose my temper far less than I did before Braxton.  Sure, there are times that I just snap when I shouldn’t, but I recognize it and try to do better.

A single stepThe hard times have taught me gratitude.  I’ve learned to truly appreciate the little things and recognize that it’s the little things that mean so much to us.  I understand just how much work it takes for a child to learn to sit on their own, stand, roll over, pick up a cookie, put a toy in a bin, empty a toy box, wave – the list goes on.  EVERYTHING my child has done, he had to work for.  He had to be taught.  Hours of therapy were spent teaching him to do things many kids simply figure out on their own.  Braxton took THREE small bites of a cookie and I was so overly ecstatic and grateful for this incredible accomplishment.  Something I would not have experienced if it were not for the hard times.  I wouldn’t know THAT kind of joy and gratitude if Braxton was ‘typical.’

St. David's NICU ReunionThe hard times have brought my family closer together.  Joseph and I learned to really work together to care for Braxton.  Watching him hold Braxton, make him laugh, or simply watch him with pride has made me fall even more in love with him.  There is just something about seeing the man you love be an incredible father.  We have had our share of hard times, but we have come out stronger every time.  Our immediate families have also been more involved and learned to care for Braxton and spend time with us whenever possible.  Aileen has been an amazing big sister and now that Braxton is more mobile she is truly enjoying “showing him the ropes.” Seeing the two of them together warms my heart.

The hard times have taught me courage.  Never in a million years did I think 1) that I would have a child with special needs and 2) that I would be able to share our experience in such a public fashion.  I recognize the courage I had to build to be able to put our story out there for all of you to read.  The courage it took to share our experience with media outlets.  The courage it takes to stand in front of a room full of strangers telling our story hoping that even ONE person finds THEIR OWN courage to fight for what their child needs. The courage it takes to persistently call a doctor because you just KNOW something is not right and they aren’t listening.  The courage to question a doctor and ask them to take a deeper look.

The hard times have taught me about faith.  I’ve always held true to my faith and the values I learned growing up, but I took a step back some time ago.  It’s been about a year now since I’ve gone back to Church and pulled my faith closer to me.  I see the greater picture and I know the power of prayer.  I know God and see Him at work in my life each and every day.

The hard times have led me to find my purpose.  My life is not at all what I imagined for myself, but I know it’s exactly what I’m supposed to be doing.  I KNOW that I’m supposed to be sharing my story with you and reaching out to others to walk with them on this journey.  I can’t tell you the joy and gratitude I feel when another mom reaches out to me to say that one of our experiences helped her through an equally hard time.  Or when a mom reaches out for help to find answers or asks where to turn and I’m able to answer her or direct her to the right place.  The thanks she gives me for listening when no one else would makes me feel good about myself and makes me want to do more.  I want to pay it forward for all the help I’ve had along the journey.  I enjoy helping people. I enjoy listening to their stories and finding the similarities in our journey so that they don’t feel alone.  I know that this isn’t what I had planned, but it’s where I belong.

The hard times have taken me through every emotion possible, but I’ve learned to stay strong and hold my head high.  I’ve learned that it’s okay to grieve.  It’s okay to cry, sometimes for no reason at all.  I’ve learned that I’m stronger than I ever imagined.

I’m thankful that I’ve seen hard times because I now know a joy that I could have never experienced otherwise.  Hard times are not the end of the world.  They are opportunities to learn what you are made of and teach you to be thankful when the good times come your way.

Choose Joy Everyday

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