Tag Archives: special needs child

Texas Parent to Parent Conference

This weekend I had the great pleasure of attending the 9th Annual Texas Parent to Parent Conference.  The TX P2P conference is attended by families all across Texas to find and share resources.  There are also sessions to help families along the journey.  I met so many families and really enjoyed the sessions I attended.  I was able to attend thanks to U.R. Our Hope.  I volunteered to help man the table in the exhibitor room and also be part of a parent panel during one of the sessions and in return my conference fee was taken care of.  Truly incredible.

Thursday, I signed up to attend training to become a Parent to Parent Support Volunteer.  In the training, I met many other families who came in to this special needs journey quite unexpectedly.  As I listened to everyone share their story, it was obvious that although our children all had very different struggles, there were so many similarities in our paths and we were all connected by the love and courage to fight for our children.  I’m so excited to officially be a parent support volunteer.  I feel as though I have grown so much in the past 2 years and have a wealth of resources available to me and would love to pay it forward and help other parents in any way that I can.  I really look forward to receiving parent matches and becoming a mentor to families along the journey on a more personal level.

Thursday evening, I also attended a meeting with Dr. Bruce Cohen where he spoke about Mitochondrial disorders.  It was very informative and interesting to hear from one of the experts in the field.  Dr. Cohen gave a great overview about what Mitochondrial diseases are and some of the advancements being made in the research to help correctly diagnose so many children.

U.R. Our Hope TableOn Friday, I attended several sessions and also sat on a parent panel in one of the discussions.  First, I went to a session on “Grief and Stages of Adaptation” which is a continuation on the training in becoming a parent support volunteer.  The session gave really great insight to the process we all go through when learn about our child’s diagnosis.  Understanding the research behind the fact that all parents do grieve the loss of the life that might have been while coming to terms and building new dreams in the life that is now before us was so helpful.  As we learned about all the stages and processes in which we all go through, I recognized how true they were for my own journey and I know now that I can recognize these stages in the journey of others which will be essential as I help to mentor parents who are new to this journey.

After lunch, I attended the session given by Dr. Mary Elizabeth Parker, medical liaison for U.R. Our Hope.  In her session, she talked about the diagnostic journey and resources for obtaining a diagnosis.  Myself and one other parent were on her parent panel and told our stories about our children and how we finally came to a proper diagnosis.  We were able to share our experience and answer questions for others who are also on the journey.  Dr. Parker talked about several cases she has personally worked on and how the healthcare system failed some of her patients which ignited her passion to help other families so that they don’t have to go through that.  We had some really great questions and feedback from the families who attended the session, and I’m so proud to have been a part of the discussion.  I hope that these families connect with us or find the resources they need to finally attain the peace of mind that we have.

The final session for Friday, was given by our speech therapist and another therapist in Houston about Augmentative Communication.  We are so fortunate that our own speech therapist is so well versed in using Aug Comm with patients and can’t wait to get started with Braxton.  I was excited to attend to get an overview on what options were available and how to get started with the process.  I did learn a few things that I hadn’t already talked to our speech therapist about and hope other parents who attended did too!

Friday night, a few of our friends of U.R. Our Hope went out for dinner to chat and just hang out at a local restaurant.  It’s always nice to attend these meetings and talk with other parents about their experiences.

Dinner with U.R. Our Hope

Dinner with U.R. Our Hope

 

Saturday was a short day for me.  I helped to cover our table in the Exhibitor room while Dr. Parker held another session about Mitochondrial disease and Autism.  I’m sure it was great!

U.R. Our Hope

 

 

I had to leave at lunch to help Joseph DJ a wedding out of town. Needless to say, it was a very long couple of days for me! But it was so rewarding! I was able to make a lot of new connections with other resources and other families who are also on the journey.  I definitely plan to make this conference each year! I’m so thankful to have been a part of it this year and look forward to the new opportunities that have arisen from participating.

 

 

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Some Much Needed Fun

With so much turmoil in the world and our own stressful and emotional week, I was very much looking for a distraction to keep my mind off things.  Today, we joined our amazing friends of U.R. Our Hope at Morgan’s Wonderland in San Antonio.  While I wanted a distraction and to not think about our very recent diagnosis, instead I found myself willingly talking about it with the other families and by the end of the day, I had a reminder of how wonderful our life is and the gift we have been given.

After 21 months of being undiagnosed, we had truly formed a bond with many of the families we met who were on the same journey, so they had complete understanding of what we were going through every step of the way.  In U.R. Our Hope we have a second family and a strong support group. I love our monthly meetings and getting to see everyone and how well the kids are doing and just getting to talk about everything.  Although we have a diagnosis, we’ll still be very much a part of U.R. Our Hope and they will always have a special place in my heart for helping me heal when I didn’t even realize I needed to be.

Having formed real friendships with some of the other moms, they were genuinely interested in hearing our news about the diagnosis and talking it out with me.  The more I talked about it and said everything out loud, the more my understanding and acceptance grew.  Yes, there is still a long road ahead and I still have many questions, but for now, I’m content with the answers I have.   The other moms also helped me to see the good and hope that exists within our diagnosis.  I needed that outside perspective and I’m so thankful to have gotten it today.

In addition to talking, as I watched Braxton laugh and play I was reminded of my own words to embrace this life we have been given and take it day by day.  This loving and joyful child in front of me is such a gift and he is going to write his own story.  Everything is absolutely going to be okay.

I saw so much joy today and my heart is full again.  Not just Braxton, but the smiles on all of the other kids in our group was exactly what I needed.  Braxton loved the park and we’ll surely be going again! I was a little worried at first if he’d like it or even be able to do anything, but he was able to do everything! We rode on the carousel, he got to drive a car, he LOVED the swings, we rode a train through the park, and his favorite was the Xylophones set up in the middle of the park.  Braxton definitely has the love of music in his genes.  He was in the best mood today, and at lunch time we played peek-a-boo!

I’m so grateful to have a place like Morgan’s Wonderland to take him to! It was a fantastic day!

Picture Overload from today 🙂

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The Gift of Speech

I’ve often heard, “You spend your child’s first year teaching them to walk and talk, and the rest of their lives telling them to shut up and sit down.” – and yes, I thought to myself that is SO true! Until…I had a child who at almost 2 years old still cannot walk or talk.  Having a child with special needs causes you to completely re-evaluate everything and learn to appreciate all that is so magical about life.  Your child won’t stop gabbing about their favorite toy? Keeps demanding their favorite movie? Won’t stop climbing the furniture? Keeps you in shape by making you chase after him? I ENVY YOU! I WISH my child would say ANYTHING at all that is coherent.  I WISH my child could run and explore his little world.  I try not to dwell, but I do have days where I hold Braxton while he is sleeping and just cry thinking about all the things he should be doing but isn’t.  Or cry thinking of how far he has come.  Of all the things I wish he could do, I wish he could speak.  This poem beautifully captures that sentiment:

Sometimes when he's sleeping....

Sometimes when he’s sleeping….

 

Wishes in the Dark (for Abby) ~ copyright 1999 by Lisa Esmond
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sometimes when she’s sleeping
I can see in my mind’s eye
the little girl I thought I had,
the one who said good-bye.

Sometimes when she’s sleeping
hands folded by her cheek
I close my eyes and see before me
a child who can speak.

Sometimes when she’s sleeping
she seems so whole and well
I can’t believe she won’t awaken
with dreams of which to tell.

Sometimes when she’s sleeping
and the tears in my eyes overflow,
I steal what kisses I can in the dark
and wonder what joys she will know.

Sometimes when she’s sleeping
and my eyes ache with tears unshed,
I pray she’ll always be full of peace
as she slumbers in her bed.

Sometimes when she’s sleeping
I can almost hear her say
“I love you, Mom, with my heart
and my soul, each and every day”.

But always when she’s sleeping
I am full of pride
at the miracle that is my daughter
and the perfection that is inside.

What I would give to have Braxton look up at me and call me “Mama” or walk up to me just to say “I love you.” I don’t know if that will ever happen.  I believe in my heart and hope with every fiber of my being that he will, but at this point I just don’t know.  He is babbling and making lots of sounds, but despite all my efforts, none of those wonderful sounds will form in to the magical words I’m longing to hear.  I know he loves me, without a doubt.  But there is really something special about hearing those three little words.  What happens when your child doesn’t have the words to say what you want to hear? You have to learn to read their signals instead.  The eyes can truly say so much.  There are times I play with Braxton, or catch his attention and he makes eye contact with me and his little eyes light up and a smile flashes across his face and my heart melts.  There it is.  That’s my “I love you” and it is ever so special to me even though he can’t yet say the words. I can feel it.  I feel it deep within my heart.  One day, he WILL say those special words, and that day I may not be able to hold back the tears or ever forget that moment.  That is one moment I will hold on to for all eternity.

Until that moment comes, we cherish every day and learn to communicate by taking our cues from Braxton.  We are open to the possibility of Braxton needing an assistive technology device to speak to us.  We are also taking sign language classes so we’ll have a definite method of communication should Braxton not learn to speak, or should his communication device not work if we take that route.  Communication is fundamental and it’s important to us to be able to communicate with Braxton by any means necessary so I’m very excited to be taking sign language classes and hope with all my heart Braxton learns to speak or sign very soon.

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FTA Week, Day 6: Outreach

Today’s Topic: Outreach, what are you doing to doing to spread awareness?

In addition to our daily posts, Tuesday, we had the opportunity to visit our local news station to share our story. If you missed that, check here.

Tuesday's Interview

Tuesday’s Interview

I have to say that I absolutely did not expect the response we have received. My goal was to help promote Feeding Tube Awareness, and while we seem to have accomplished that, it seems to have meant so much more than that! I wanted to share our story so that whenever we feed Braxton in public, we could do so without the ugly glares from people wondering what the heck we were doing. None of it was for fame or any kind of notoriety. Since the newscast aired, we had almost 800 views that day and days later we are still getting quite a few. A number of organizations also shared the story on Facebook, so we received much more coverage than just locally. I’ve received countless e-mails and facebook messages from families thanking us for sharing our story, thanking us for giving kids like theirs a voice, thanking the news station for putting our story on in the first place, thanking us for giving them hope, for inspiring them to continue on their journey. Needless to say, we have been deeply moved by the response. This is all so much more than we ever expected. I honestly don’t think of us as doing anything extraordinary. I feel like most parents would rise to the challenge and do whatever it takes for their kids. But if by us living our “normal” life brings you any kind of hope or inspiration, I’m greatly humbled and glad that our story could be that for you.

A couple days after our news interview, I was contacted by an online publication in the UK to do an interview for their site, Success Circuit, which shares inspirational stories from all over. You can see that interview here: Braxton’s Journey – A Story of Young Bravery Many thanks to Michelle of Success Circuit for contacting us for the interview, and working quickly to have it published on their site.

We have had quite the journey thus far with many ups and downs. We’ve been physically, emotionally, and spiritually broken. Somewhere along the way, something changed. We gained acceptance of our situation and learned how to make the best of it. All you can do is take it day by day. Don’t get so consumed with the future that you forget to live in the present. Thank YOU all for reaching out to us and sharing your own stories with us. Thank you for showing interest in our story, I hope you continue with us on this journey. Never lose hope. And remember that you are not alone.

Never Lose Hope

Never Lose Hope

 

———————————————-

I promised a Q&A blog today, so here are a few questions we’ve received this week:

  • How long will Braxton need the feeding tube? Honestly, we don’t know. Braxton was doing so well eating by mouth and just regressed when he got pneumonia and started vomiting every feed. It’s been about 5 months since then and we are starting to see some progress with oral feeding, but certainly not enough to remove the tube. As long as Braxton is happy, healthy and growing we are glad to have him keep the tube. We are actively working with a fantastic speech therapist, and I’m confident he’ll get there one day, I just have no clue when that is.
  • Are there any activities he has to avoid because of the tube? NOPE! He can do anything within his abilities. We either remove the extension tubing or tuck it in his shirt so it doesn’t get caught on anything while he is crawling around, but there really are no limits because of the feeding tube.
  • How often do you change the button? The G-Tube has to grow with Braxton. We follow-up with his pediatric surgeon about 3 months after we change to a new button. In the beginning, we changed sizes quite a bit because he was growing so quickly. Now, we’ve had the same size for about 6 months. As he gains weight the button needs to be changed. The length of the stoma is the only thing that changes. The doctor orders us a new button with a longer stoma so that it reaches all the way to his stomach.
  • Do you change it yourself? We do actually. The Mic-Key button can easily be changed at home. The next time we have to do a button change, I’ll be sure to make a video and share it with you. The first time we had to put the button in was pretty scary because we pulled it out 😦 The good thing was that we got it out of the way early so we learned what needed to be done.
  • How do you make his food? I need to do a video for this too. Since we switched to the blended diet, we are now able to feed him real food. I was using pureed baby foods at first and still do, but I’ve also started to buy regular chicken and beef, boil it and then puree it in our blender. I freeze the meats in ice cube trays and then put the cubes in freezer bags until I need them. I do the same with fruits and veggies. For our other posts on the blended diet, click here.
  • Does Aileen help you? One of Aileen’s hopes was to feed Braxton with a bottle. That’s the first thing she wanted to do when I told her I was pregnant. When Braxton came home on the feeding tube, we had to have a different conversation. I explained to her that Braxton needed a special way to eat and we found other ways for her to help. At first, she helped me pour milk in to the feeding bag, later I taught her what to push on the pump so she learned to start it and knew how to stop it when it started beeping. Now, I do let her help with the syringe feeds, but ONLY under my supervision. I definitely don’t expect her to feed him all by herself. It has been quite the balancing act this whole time finding ways to keep her involved so she doesn’t feel left out since Braxton requires so much of our time. She’s been awesome though.
  • Was it hard to learn how to use the feeding tube? Surprisingly, no. It was just a lot of information. There is a steep learning curve when it comes to tube feeding, but it’s something that has to be done often, so the repetition really helps you learn what needs to be done. We have been able to teach our parents and even my grandparents!

I think that’s all the questions we received, I know we’ve put a lot of information out this week, so I thank you for reading! If you do have any other questions about feeding Braxton, we’re happy to answer. Just ask!

 

Tomorrow is the last day! Sometimes You Just Have to Laugh: Tubie humor

For all Feeding Tube Awareness Posts, click here!

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Who Flipped the Switch?!

He loves playing with his sister now

He loves playing with his sister now

In just a couple of days, (Jan. 24th) we will officially have a 19 month old on our hands! Braxton continues to make significant progress in all areas, and we could not be more thrilled.  Braxton is truly starting to come into his own person.  This little boy has developed an entirely new personality, perhaps not completely new, but we are starting to see new traits.  He is quite the little jokester.  He is really starting to do stuff like drop things on purpose to see if we will pick it up, all the while looking and grinning at us like he knows exactly what he’s doing.  He’s also developed purposeful play.  He will crawl over to a toy with intent and actually sit and play with it for long periods of time before moving on to the next toy.  You can tell that he is very focused and concentrating on the fine/gross motor skills required for the task at hand.

At the end of November, we sent his hearing aids off to be repaired and we JUST got them back about 2 weeks ago and he is adjusting to them again, but we’re definitely seeing improvement.  He is making new sounds throughout the day (naturally, he says and does nothing when the Speech Therapist is here – jokester, I tell ya) and laughing so much.  It is such a joy to sit back and watch him play and crawl around like I never thought possible.  Every single day I see him do something new and I just want to cry because I’m so happy to see him developing despite the initial prognosis.  He’s even enjoying playing with his sister more.  Aileen really loves that she can play with him and get feedback from him.  He laughs and squeals and is just overjoyed by the interaction. It just melts my heart.

Developmentally, I’d say Braxton is more on track with a “typical” 9-10 month old who is actively crawling and playing and making attempts at standing/walking.  He still has no real speech.  He makes sounds and babbles a little bit, but no words yet.  I get to sit and make silly sounds back and forth with him and am just thrilled to see him carry on the turn taking as he should.  Not quite imitating yet, but natural turn taking seems to be kicking in.  We are trying to focus on more sign language and even though he hasn’t quite developed the coordination, I’m hoping that seeing the signs over and over will help him to eventually pick it up.

We’ve even seen more cognitive problem solving skills develop.  He is actually thinking about things and how to do things differently.  For example, I’ve had to section off the living room to keep him from going to the kitchen and staring out the patio window.  I set his playpen between the couch and the wall so he can’t pass through. Well, Braxton will often kneel and try to push the playpen out of the way so he can get through! If I leave even a small crack and he thinks he can get through he will squeeze himself in and push and push until he gets stuck or edges the playpen out of the way so he can get through. Absolutely amazing.

Focused on his Xylophone

Focused on his Xylophone

There are significant advancements being made here and I’m so grateful to see Braxton reaching milestones left and right. It’s literally like a light switch flipped on in his mind.  He may still be quite a bit behind, but you can’t rush perfection 😉 He will do it in his own time, in his own way.  Keep up the great work, little man! Mommy and Daddy could not be more proud.

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