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February is Heart Health Month

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness

Well, it seems that Braxton is just a ball of awareness! Apparently I missed an awareness week…oops, I’ll get them all eventually! As they are all very important in bringing awareness to the prevalence of issues many of us are not aware of until we or someone we know is diagnosed with them.  February is Heart Month and Feb 7 – 14th was Congenital Heart Defect Awareness Week. [Click the links to learn more.]

One of the many things Braxton was born with is a congenital heart defect.  Congenital means that it was present at birth, it’s not something that developed over time.  Braxton has a Bicuspid Aortic Valve and Dilated Aortic Root. The aortic valve allows oxygen-rich blood to flow from the heart to the aorta and prevents the blood from flowing back from the aorta and into the heart.  A normal heart has three valves that help with this process, Braxton’s heart only has two valves.  Here is an illustration from PubMed Health:

Bicuspid Aortic Valve

The dilated aortic root means that Braxton’s Aortic Root is slightly enlarged.  Future complications could include congestive heart failure, leakage of blood flow back into the heart, and narrowing of the valve which does not allow proper flow. Unfortunately, there is no way to prevent a congenital heart defect.  It is usually something that runs in the family.  And there is really no way to for sure know if your child will have an issue if it does run in the family.  From what I know, neither of our families has a bicuspid aortic valve, but my side of the family does have a history of other heart defects.  Based on the information from PubMed Health, often a bicuspid aortic valve can go undiagnosed because symptoms aren’t very severe, so it’s possible other family members may have been affected and we just don’t know.

On my side of the family, I was born with a slight heart murmur, but over time my heart grew and the murmur resolved.  My sisters, however, required surgery to repair their heart defect.  I have sisters who are twins, and they both had an Atrial Septal Defect (ASD) which is a hole in the wall that separates the the left and right chamber of the heart.  The hole allowed “good” and “bad” blood to mix which affected their growth and could potentially cause more severe issues.  At 6 years old, my sisters underwent back-to-back open heart surgery.  The surgery went well and they both made a full recovery.  They are now 24 years old and one has graduated from college and the other will do so this spring!

We were fortunate enough to have discovered Braxton’s heart defect at birth.  There were no signs before he was born.  We underwent all the normal ultrasounds and screenings.  Each time the doctor listened for the heart beat I asked him to make certain he didn’t hear a heart murmur because I knew I had one when I was born. We never heard anything wrong.  With the other issues he had at birth, an echocardiogram was done to check all the bases and the bicuspid aortic valve was found.  As a result, Braxton is followed closely by a cardiologist to monitor the development of his heart and make sure there will be no complications.  The report is that for having the defect, Braxton’s heart functions “normally” and his aortic root is still enlarged, and as time passes it continues to grow, but it is growing with Braxton proportionately so there is not yet cause for concern.  We aren’t sure if there ever will be, or what the long term implications are.  Our cardiologist has been pretty optimistic thus far, and when I asked about complications he told me that I shouldn’t worry about them, that I should focus on the fact that Braxton is doing just fine.  I can appreciate a doctor not freaking me out unnecessarily, so thanks, doc.  Braxton has an Echocardiogram (ECG) every 6 months so the cardiologist can make sure that everything is continuing to work as it should. His little heart is full of so much love and joy, so I will enjoy this worry-free time.

Congenital Heart Defects are extremely common and there are a wide range of conditions that can affect children.  I encourage you to visit the Congenital Heart Information Network to learn more about screening, resources, and support available for anyone with a congenital heart defect.

CHD doesn't have to be as grim as it sounds.  There is absolutely a possibility for a full and happy life!

CHD doesn’t have to be as grim as it sounds. There is absolutely a possibility for a full and happy life!

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Remember the Moments

“We do not remember the days, we remember the moments” – Cesare Pavese

Today was a pretty amazing day.  Definitely didn’t start out that way, but something amazing happened that I will always remember.

Today, we had a follow up with our GI doctor; our first since having switched over to the blenderized diet.  Started out just as any other appointment, waiting room, exam room, routine height and weight, nothing special.  Braxton is now 26.3 pounds and 32 inches long! He has gained a little over a pound since we started the new diet 6 weeks ago.  He is continuing along his growth patterns just fine.  When our doctor came in, he went through his normal routine of questions to see what has changed.  For the first time, in a long time, I was able to tell him that everything had been great! Braxton has vomited maybe 4 times in 6 weeks (and each time was due to feeding him too quickly and not anything to do with intolerance of the homemade blend). This is a HUGE turnaround from having dealt with vomiting several times EVERY DAY! He took Braxton off his medications since his vomiting was under control and considering he hadn’t been on them in over a week anyway.  We were waiting on refills, so he was without them, but turns out he doesn’t even need them now. Yay!

FINALLY! Finally, we have found something that works! But, that’s not even the best part.  Our Dr continued to examine Braxton, and then he sat Braxton right in front of him to examine him and Brax reached out to touch the doctors face.  His pacifier fell and Braxton leaned over the edge of the exam table to see where it had fallen.  When he realized it wasn’t there (mom picked it up) he focused back on the doctor.  He held steady eye contact and continued to reach out for the doctors face.  Braxton has a fascination with glasses, so we knew he was trying to get them off the doc’s face.  As the doctor moved back and forth Braxton continued to follow him and reach with both hands for his face.  The doctor then grabbed Brax under his arms to move him back and Braxton instead stood himself up to start bouncing, and all the while he was smiling….he was playing with the doctor.

And then it happened…. our doctor made a comment about how interactive Braxton was with him this visit and that he had never been like that before.  He said he was so happy to see such progress from Braxton considering where he was when he first saw him.  He said he was so happy that he wanted to CRY.  As I sat and watched him continue to play with Braxton I noticed the tears well up in his eyes and heard his voice waver as he tried to hold them back.  He had genuine emotion and was truly happy to see just how far Braxton has come.  It was an amazing moment.  Amazing to see that this man was more invested in my child’s success than I thought.  And it wasn’t simply the eating part of it.  He was thrilled to see Braxton growing and thriving and reaching milestones they never thought possible.  It warms my heart to know we have such a great doctor who truly cares for his patients. I wish I had gotten a picture, but I was just as caught up in the moment….and yes, I had to fight back tears too.  This is one of those moments we’ll always remember.  We may not remember today, but we will always remember the moment one of Braxton’s doctors was literally moved to tears over the outstanding progress little man has made.  This kid is destined for greatness.

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Dad’s thoughts on Braxton

Hi all, Joseph here.  Vanessa has been telling me that I needed to blog something about Braxton so the world can have an idea my stand point on the matter.  First of all, I am thankful to have Vanessa as a mother.  She took such good care of herself during the pregnancy so I know that she did everything she could.  I mean the baby came out weighing over 8 pounds!  I will not lie, having a special needs child is rough and most people at my work do not understand, that on my week off, IT’S MY WEEK OFF!  They still call every week just about to ask if I can come in on rig move since it’s the new “rule.”  Granted, I want to move up to become a rig manager so I can provide for my family even more, but to be bounced around with the hope of becoming one is beginning to take a toll on the relationship with my family.  It’s been over 3 months that I have had my replacement in training, but still no word from my higher ups about the promotion.  They don’t see that every week Braxton has 2 home appointments of physical therapy, speech therapy, OT, vision therapy, and after all that we have our weekly check ups with our GI, Pediatrician, Endocrinologist, Cardiologist, and many more.  So roughly every day of every week we have 2-3 appointments so rescheduling all those because of a rig move can become quite the hassle.

On the other hand, I am also starting to get recognition as a DJ/event holder in the Austin area.  I could do shows every week if I had the time, but I see the toll it takes on Vanessa and our family so I try and space them out to be considerate of her feelings.  I love music.  I have been dreaming of doing shows since I was a little kid so I try and even mix all genres to make everyone happy.  Music is a way for me to release myself.  Whether it’s making a new song, doing a gig, recording a new beat, or just helping set up a show makes me feel accomplished, and I feel that everyone should do something like that in their life because it helps you find a brighter outlook on life.  Not saying that I am depressed or life sucks, just saying that if you have a passion for something in life, that you should do it no matter what.  I’m not saying to just drop everything and do it, the only time you should do that is if you are fishing and Jesus says to drop your nets and follow me.  LOL.  That is a true story by the way.

Anyways, what I am saying is that a real man provides for his family, loves his family, which in return reflects that he in fact loves himself too.  If I was to grind all night and day and hate my life then what message would I show to my children besides the fact that “Dad hates his job, hates working, and is always mad?”  I feel (and this is just my opinion) that you should chase your dreams.  It is better to fall short trying than to sit at home 25 years later and think “what if?”   That is why I am glad that we have so many doctors who are in our corner trying to help us get the best help that we need so Braxton can grow up and chase his dreams.  I also am glad that Vanessa has a job where she can rearrange her schedule to compensate for Braxton’s needs.  I wish I could do the same, but the fact is that when on a rig, you are there for the entire hitch.  I am thankful that Vanessa can handle so much because I do not know what I would do without my “ride or die” girl (haha).  She gets onto me a lot about things but I guess in every relationship, it is healthy to fight.  We both hold firm to our opinions and will fight to the death for them (so to speak).  I couldn’t imagine myself with anyone else besides her.   I love my son no doubt, I guess I have so much ambition inside of me to do new things, try new things, and acquire new things that I overlook some obstacles I am causing.  I am a proud father, whether Braxton gets a 400 on his SATs or a 1400 I will still love him to the fullest.  Honestly, I see how other kids his age are grabbing everything, acting crazy, screaming, whining when the parent leaves the room, and I am thankful that Braxton is so well behaved.

Braxton can hear without his hearing aids, he is not deaf, but at least the boy is so chill.  I know he does NOT get that from me HAHA.  I knew he could hear something before we got the hearing aids because when he would be cranky I would put some of my instrumentals on and he would just sit there completely quiet and listen.  He really likes my MPC (beat pad) because he kinda jumps and laughs/smiles every time he pushes the button and it makes a different sound.   With his hearing aids in now, I haven’t had the chance to try and play some more with him with it, but I’m sure he will enjoy it. I hope that if there is any family struggling with the same type of child that they find hope.  We are proud to have Braxton as our son, he is not behind, he is just simply taking his time and enjoying the scenery as he goes 🙂 Ok so that is a enough of random rambling from me .  I do appreciate everyone’s support and love.

 

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Braxton gets his Hearing Aids

Today was the day!! I have to admit, I was hoping that as soon as we put the aids on his little eyes would light up and he’d just start talking away…unfortunately that didn’t happen.  The Audiologist explained everything to me as best she could, but I’m more of a hands-on person. Experience is the best teacher, so it’s going to take some time for us to get the hang of it all.  Hey, I figured out his G-Tube, I’m pretty sure I can handle this too.

So, the entire time we were there waiting Braxton was just as wiggly as he could be! He was sitting in my lap just rocking back and forth and smiling like crazy.  As soon as the audiologist put the aids in, he just stopped.  He could obviously tell something was different, but he didn’t quite know how to react. Luckily, it wasn’t to just start shrieking and crying uncontrollably *whew*  He started looking around and just taking everything in.  Thankfully, he did not immediately grab for his ears and try to pull them out.  I really don’t foresee that being a problem with him, but only time will tell.  We stayed with the audiologist for a little while to make sure I had all my questions answered.  The entire time, Brax was just as wide-eyed as he could be.  Big sister came with us to help take photos and video, but  turns out a 6 year old isn’t the best photographer! There are more pics of herself than Brax on my phone! You can see her handy work below 😉

After the appointment, I had to go back in to work and took him with me to wrap up the day.  He was pretty calm there, just continued to look at his surroundings and really just take everything in.  He even took a little nap and didn’t really startle awake with normal office noise.

Anyway, this is a VERY exciting time for us all! This is the first step in really advancing Braxton’s speech.  Hopefully the aids bring him up to “normal” hearing and we start getting some meaningful words out of him…I can’t waitttt!!! He’s going to be talking up a storm in no time…I’m sure of it!

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“Little man with his hearing aids! I’ll update more later, but we finally got them and he immediately just started looking around. You can def tell he is hearing things he hasn’t heard before and is more aware of his surroundings. I’m super excited for him!! :)”

Here is Braxton and his aids, which are surprisingly much smaller than I thought they would be!

Braxton with hearing aids

Braxton wearing his new Phonak NioS H20 Hearing Aids

A few more pics…mostly taken by a 6 year old haha

For more detailed information on the hearing aids, see this post.

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