Benji's Broken Heart

Zebras can be complex

2021-08-26T13:08:00.000-05:00

Benji has had a rough year. Haven't we all?

In the last six months, we have found ourselves seeing several doctors. What we had thought was just an ankle twist that would heal with rest has turned out to be SO MUCH MORE.

It all started back in either November or December when Benj landed wrong while working out at TaeKwonDo. We didn't think it was that big of a deal and the next day he was fine. A couple months later, say February... he was rolling one or both ankles regularly and it was getting to the point that they just hurt.

The first visit to the doctor was to get some anti-inflammatories going and rest. When that didn't work we were sent to a Podiatrist. He tried different anti-inflammatories and physical therapy. Two months later and still no improvement. Shoe inserts helped but that restricts to having to wear shoes.

In May while the podiatrist was taking everything in and re-assessing, he noticed two very important things. The first was that Benj is VERY, and I mean VERY hypermobile. (How many sixteen-year-old boys do you know that can do the splits without stretching? And they are not in gymnastics?) The second was that the connective tissue in the ankles were not doing their job properly. At this point, we were referred to get an MRI and go to rheumatology. Neither of these appointments came simply.

Finally got into rheumatology and after the first assessment the possibility of a connective tissue disorder was agreed upon and that it was possibly Ehlers-Danlos hypermobility (type iii) most likely. We were still waiting on the MRI, so more physical therapy. We elected to go to a different facility than the first.

Physical Therapy has made a significant change this go around. Benj is able to walk better. He's also keeping up with the home exercises. The MRI was completed and based on all the information gathered, the medical team is convinced it is HeDS. You can get more information about HeDS here

While we feel Benji has enough to deal with considering his CHD and the ADHD spectrum concerns, anxiety, and sensory processing disorder, we also feel like this can explain a lot of what has been going on. Benji has ALWAYS been "floppy" or loose-jointed. It was one of the things that we worked on with TEIS and Foundations.

Over all, Benji is doing well. We are praying that these answers are leading us to a place where the pain can be controlled.

As you get older, life changes

2020-08-04T11:04:00.002-05:00

Hi, I'm Benji.

(Yes, this is my normal greeting.)

I am fifteen years old and have been home-schooled for three years now.

My interests are working with my hands, computer programming, and video games. I also play the guitar. Currently the acoustic but I am itching to eventually get my hands on an electric. For exercise I participate in CTF Taekwondo.

I have congenital heart defects. The coarctation of the aorta and patent ductus arterosis were taken care of when I was a week old. We are still monitoring the bicuspid aortic valve with stenosis. This will be my life long journey.

This blog is mostly used to update how I am doing and currently I am doing quite well. :)

Life with CHD, keeps you busy.

2019-10-09T11:46:00.000-05:00

It has been awhile since I've updated. I apologize to those that keep up.

In June 2018, I had a heart cath because the numbers with my bicuspid valve and the aortic insufficiency were not the best. The year leading up to the cath was difficult as I was put on full restrictions and had to limit what I was able to do physically.

For a preteen, that kinda stunk. I wanted to run around and ride my bike and climb trees, but I was told it wouldn't be the best. CHD has a lot of effects on a person that not everyone realizes.

I am diagnosed with anxiety disorder and one of the ways I have always combated it was by being physically active. When that was limited, there were repercussions. 7th grade was very difficult and I ended up being pulled from public school. Looking back, it was a good thing.

So!

After the recovery from my heart cath, I am told my heart is functioning the best it ever has. I am still not "cured", there will still be regular 6 month check ups for a while and maybe eventually going back to annual. I am now released with no restrictions as long as I stay hydrated and take rests when needed. (WooHoo!)

After my checkup in April, I signed up to do Tae kwon do. Yes, I did it in the past. When I was younger I worked all the way up to red belt with stripes and was 3 months from my black belt. That was WTF Tae Kwon Do. It is the discipline that participates in the Olympics. When I signed up in April, it is with CTF Tae Kwon Do. Both are good disciplines, both keep you active and help with focus. I am currently at a yellow senior belt. Being able to participate in a challenging physical activity really helps me. I love it.

TKD also qualifies for my physical education credit with home-school!

Homeschool is doing okay. I would rather play guitar or dig a hole though. 9th grade is a big thing.

So now we are here. October.

Had my heart checkup Monday. My bicuspid aortic valve has remained stable for the last year. There is aortic insufficiency but right now it is mild. The aortic arch has maintained its repair perfectly from its correction in 2005.

Wednesday I start rehearsals for the fall/holiday concerts I am part of with The Quest Center of Dickson.

It's good to know I am in a season of grace. Mom has said she won't put her guard down, but we will enjoy this season.

May Heart Checkup... The battle isn't over

2017-05-12T12:24:00.000-05:00

As a Congenital Heart Defect (CHD) Warrior, one learns that no day is promised. While today may be a good day, there is no guarantee that tomorrow will be. Interestingly enough, scripture tells us the same thing.

In the last couple weeks, congenital heart defects/disease got a boost on the awareness side of things when Jimmy Fallon shared about his son Billy being born with tetralogy of fallot (ToF) and having to have surgery. When Fallon went public, he also had Shaun White, famous snowboarder and skateboarder, share how he has survived with ToF. It is amazing and awesome that a Critical Congenital Heart Defect (CCHD) can be corrected so that the patient can live a VERY normal and non-restricted life.

But it isn’t always like that. There are some CHD that have life long complications and the quality of life is limited.

For those that follow my blog and know me, you are aware that I was born with Coarctation of the Aorta (CoA), Bicuspid Aortic Valve (BaV) with Stenosis, and Patent Ductus Arteriosus (PDA). The CoA was repaired by using my subclavian artery to create a flap around the aorta to allow blood flow and the PDA was fixed when I was a week old. The BaV was determined to be stable enough to leave so that I could grow and get stronger. I visited my cardiologist every three months, then every six months, and then once a year… up until this past January.

In January, the left ventricle of my heart (the lower chamber on the left side) showed a significant thickening in the muscle. This is caused by it having to work hard to keep the blood flowing with the BaV. Imagine if you only lifted weights with one arm, that arm would develop a thick muscle. While the muscle getting thick may be good if you are a body builder, it is not good if it is your heart.

This thickening, or stenosis, is not a surprise. When a child hits puberty there is massive growth everywhere! They get taller, their heart grows, everything gets crazy for a minute. In children that are born with CHD and CCHD, the heart has to be watched especially. Any repairs that have already been done and any existing defects can cause issues.

Fast forward to Tuesday.

After my visit in January, the cardiologist brought us back to 6-month visits. We did not know what to expect this visit. I went to the cardiologist knowing that there were several different scenarios that could play out. Rather than worry, we prayed. God is more than enough.

I was weighed and measured, had my blood pressure checked and o2 stats taken. Nothing odd or scary there except I am 5’7” and 12 years old. Brought up that I tend to stay cold and was told that we needed to pursue the issue with the pediatrician since my circulation and blood flow is good. Then came the echocardiogram.

Dad got to see that my ventricle looks like the sand worm from Dune, only slightly puckered. There is significant stenosis, but it is not notably increased since January. The aortic valve is regurgitating at about the same rate it has been. Pulse is strong in the 70s. Blood Pressure is good for a twelve-year-old. My cardiologist believes we are still going to wait, but she is going to run everything by the cardiac cath lab doctor.

No news is good news for now.

The downside is that I am now on physical restrictions. No running, only recreational swimming with breaks to rest often, no hiking… pretty much everything a twelve-year-old boy does during the summer. Thankfully mom is working on activities that I can do, and I have some friends that are willing to be patient with me.

We go back in November to see how things are. We are praying for the Lord’s healing touch.

It only take one. One in a Hundred!

2017-05-03T11:47:00.000-05:00

Dear friends and family,

I accepted the challenge of participating in the Congenital Heart Walk to raise funds for research and programs dedicated to fighting congenital heart disease—the most common birth defect in the United States. The Congenital Heart Walk benefits two great national organizations, the Adult Congenital Heart Association and The Children's Heart Foundation.

I am writing to ask for your help by supporting my fundraising efforts with a donation. Your tax-deductible gift will make a difference in the lives of many! It is faster and easier than ever to support this great cause - you can make your donation online by simply clicking on the link at the bottom of this message.

I challenge you to donate $25 and to share with friends and family.

Congenital Hearts Defects occur in approximately 1 out of 100 live births. These defects can be something as small as a hole in the heart or something major requiring a heart transplant for survival.

I was born with a Critical Congenital Heart Defect, the Coarctation of the Aorta (CoA) and a Bicuspid Aortic Valve (BAV) with stenosis. At a week of age, I had closed heart surgery to correct the CoA with a subclavian flap repair. This repair has been successful and I have been a mighty warrior for the last 12 years.

This success is because of PEOPLE like YOU and I making a difference and supporting research into Congenital Heart Defects. Not just in why they happen but most importantly how to correct them so the patient has a VERY good quality of life.

Thank you.

Benj
Any amount, great or small, helps in the fight again CHD. I greatly appreciate your support and will keep you posted on my progress. Thank you.

Click here to visit my personal page.

If the text above does not appear as a clickable link, you can visit the web address:
http://events.congenitalheartwalk.org/site/TR/Walk/General?px=1033401&pg=personal&fr_id=1703

Click here to view the team page for BenjisBrokenHeart

If the text above does not appear as a clickable link, you can visit the web address:
http://events.congenitalheartwalk.org/site/TR?team_id=13286&pg=team&fr_id=1703&et=MluFGHKMkQ8mdqT7lz6EXA&s_tafId=7669

Birthday Refelctions

2017-03-02T11:56:00.001-06:00

Twelve years ago today, Benji was born. The pregnancy and birth were routine enough.

Within 24 hours we were being rushed to the Children's Hospital and told a range of possibilities. Benji's heart was broken. The easiest way to put it. Not the worst condition out there, not the best either.

Benj was born with CoArctation of the Aorta(CoA), Bicuspid Aortic Valve (BAV), Stenosis, and a Patent Ductus Arteriosus (PDA). At a week of age, he had closed heart surgery where the surgeon performed a subclavian flap to repair the CoA and also closed the PDA. Since then the BAV and stenosis his being monitored regularly.

The peculiar thing about children born with congenital heart defects (CHD) is that it is not JUST their heart that is affected. Benj has had to overcome hypotonia (lack of tone), apraxia, lack of motor skills both fine and gross, and more. He was almost three before he was considered verbal. While milestones were met, they were delayed. In the first three years of Benji's life, there were SO MANY therapy appointments. We were always either going to therapy or it was coming to the house. That extensive therapy is why Benj is the overcomer he is today.

Benj still has to work hard. There are executive function issues, an ADHD diagnosis, anxiety, migraines, food intolerances, and sensory processing disorder. But he does work hard.

Benji loves Jesus. Loves to read. Loves video games. Loves learning to program. Loves to be a kid. Has a great imagination. Is so stinking intelligent he gives mom and dad a run for their money. This past year he has made friends that have similar interests. He also goes to music class at The Quest Center.

Our big thing this year is we are going to do the Nashville Congenital Heart Walk on June 17th.

Thank you for celebrating my birthday with me!

New Year, New Checkup, New Results

2017-01-06T13:13:00.000-06:00

Hi guys, I'm Benji's mom. Sharing my thoughts right now. Momma's have to process too.

Yesterday we went to the annual cardiologist visit. Benji was very tired because he didn't sleep the night before. Schedule changes cause issues with sleep schedules and we just went back to school on Wednesday after 2+ weeks for winter break.

The last month or so, there has been a feeling. I can't explain it. I just have had a feeling that change was coming and it is/was centered around Benj.

I need to say, I fully appreciate medical personnel, please don't think I don't. After I woke Benj up from where he crashed in the waiting room... the nurse took us back and proceeded to get his vitals. (Standard procedure.) Benj weighed 133.4lbs and is 65.5". (Major growth spurt.) His oxygen levels were at 99%. Blood Pressure in his right arm was 95/70. (Note he was resting, had been asleep.) Everything looked good; until the blood pressure in his right leg was read. It came back 111/75. Not a major difference, but I realized there was a problem when the nurse came back to check it again. The second time his leg was 126/103.

My mother's gut twisted. I knew something was going on. I started praying. Praying to know what questions to ask. Praying to be able to maintain composure no matter what news we were given. Praying to be Benji's rock if needed.

The doctor came in and she started reviewing his medical history. Asked a few questions about anything being different. I brought up his fatigue and headaches. She said she was pretty sure that would be his ongoing sleep issues. (Which the child stays up all night unless we are able to wear him out.) She noted that at birth the only procedures done was the repair to the CoA and the PDA, there was not a cath procedure. That mother's gut twisted a little bit more.

First step, the EKG. Benj laid down on the table and was asleep before he was completely hooked up. As he lay there lightly snoring and still, it was a moment of peace. It came out good. Rhythms are healthy.

Next, the ECHO. His aorta is nice and healthy. The repair is maintained. (Subclavian flap repair at one week of age.) His bicuspid aortic valve has moved into the mild stage where it was slight. The thickening of the left ventricle is concerning. There is a significant change, and our cardiologist is conferring with the surgeon as to whether we do a heart cath now or wait.

All of this can be overwhelming. For almost 12 years while Benj's heart has been monitored, it was stable and we had convinced ourselves that the big hurdle was done. We were fooling ourselves. Benj will always need a cardiologist and always keep an active role in maintaining health. As I research his condition (originally CoA, PDA, BAV with stenosis) I am seeing that this will be a lifelong medical concern.

I know what our journey is taking us to is a walk in the park for some of those in the CHD community and I will not take away from that. Yet, this is new and undiscovered for us.

How do you talk to your 12-year-old child that has Aspergers about what is coming?
How do you prepare siblings for the changes that will be coming?
How do you keep a level head? (hello?!? This is my baby we are talking about.)

I'm trusting in God, I know He will bring us through. He always does. He is always faithful. I ask that you pray with us for God's favor and provision.

~ Benji's Mom

My Heart

2016-02-09T10:33:00.000-06:00

This week is Congenital Heart Defect Awareness Week. I am sharing a video with you. (Please be nice, this is my first one.)

I would love subscribers and followers. I would also love to have discussions.

Final Friday

2015-05-22T17:58:00.000-05:00

The last day of school has come and gone for 4th grade.

This year has been anything but smooth. Personality clashes, bullying, and lack of desire for school. But positively, new friends, P.A.L.S., and cousins.

Fourth grade was hard work.

Math became a problem. Missed a week of school because of a strange illness. Being quirky got on some friends' nerves. Lost interest in reading after finished the How to Train a Dragon series.

All and all though, finished the year with over all As/Bs. No certificate because during the year there were a couple of Cs. Even with losing interest in reading, finished the year in second place for the fourth grade with 117 AR points.

In just over a week I get to participate in STEM Camp. It will be fun and I look forward to it. (It is a school sponsored day camp. I can't do overnight camps because of my food allergies.)

BTW, anybody have summer reading suggestions?

When Kids Get Hurt

2015-05-17T17:08:00.000-05:00

Before we go much further, this situation was taken care of quickly and all parties involved are fine. This is an informative article for parents and teachers to be aware of when a kid gets hurt.

We had an incident that happened while Benji was in the care of the school a couple weeks ago. His grade went on a field trip to the Tennessee State Capitol in Nashville where they toured the capitol building. Benji's big take on the tour was that they have dead people in the walls. (The tombs of prominent figures of Tennessee.)

From what Benji shared the tombs were the big thing that he took from the tour of the capitol. He does not impress much. (Seriously, he doesn't.)

After their tour of the capital, the kids got back on the bus and road to a public park that is about halfway between our school and the state capital so that they could eat lunch and play.

Benji rarely rides the bus. Our district has one schedule for all the routes for pre-K thru 12 and the route can be an hour ride easily. With his sensory issues, there is no way riding the bus would be a good thing. We don't have anything against the busses, our other kids ride. (They also go to different schools even though they would be on the same bus.)

For those of you familiar with children that have SPD you may also be aware that a change of routine, even if fun, can really take a lot out of a kiddo.

Once the busses got to the playground, the kids ate lunch and then were allowed to play in the playground. The playground is really a great asset to the community and is the center of many events that the community has. The incident that happened is not the FAULT of the playground or the field trip. The incident was a true accident and unfortunate. Even had we been there the incident could have happened.

The problem is that because of reasons unknown to us, Benji did not feel he was able to tell an adult or teacher her had gotten hurt. He told us the first time he tried to tell he was quietened and told to get on the bus. After that he tries to tell the music teacher when they got back to the school. She did not see injury and told him he could sit or just walk during the movement exercise.

When Benji was picked up from school, the moment he sat in the car, he informed his father what happened. When they got home I took a picture and emailed the teacher, principal, and the director of schools.

The injury on his back was an abrasion 6-8 inches long and it was bruised. He also had a small goose egg on his head and his leg was bruised. He was too big of a child to go into the area he was trying to follow his friends into and got banged up.

The principal responded and necessary steps were taken at the school. Hopefully an incident like this won't happen again. But parents of kids with sensory issues need to be aware. Parents of kids that have self esteem issues need to be aware also.

I skipped school...

2015-05-16T14:49:00.000-05:00

The end of the school year brings about all the award parties and the "field day" activities that typical developing kids absolutely enjoy. Many atypical kids do too.

My elementary school years have developed a tradition for me. About a week before school gets out and my fellow classmates enjoy "Beach Bash" at school, I stay home. I went my kindergarten year, and I absolutely did not like it.

At my school, Beach Bash consists of inflatable water slides, face painting, games, snacks, chaos of about 200 students at a time. Sounds great, unless you have sensory process disorder and food allergy issues. I don't like getting splashed. The water felt icky on the inflatables. The face painting made me break out the one time I tried it. None of the snacks are friendly to my diet.

*Note on the food allergies. I react with severe digestive issues with any dairy. I am allergic to food dye, I get sick and develop a migraine - the reaction gets worse every time. I have hypoglycemia and my body can not process non-natural sugars. This includes processed Stevia.

SO... instead of going to school on Friday, I had my own day of fun.

After about an hour of playing MineCraft on the Xbox 360, we got dressed and went to town.

Our first stop was at the new Bibb Civic Center. There is an Art Exhibit currently showing in the lobby and it is quite interesting. There were several large works that appeared to be made from paper-mache. There was a giraffe, and elephant, a tiger, and more. There were also some drawings on display too. What caught my attention was the old guy in the water trough.

He looked funny. Mom says he was wearing longjohns and must have fallen in. I don't know that I agree, he has soap in one hand and a scrub brush in the other.

As you might be able to tell, my brother (who also decided to stay home for similar reasons) liked playing in the fake water. There was this blue gel stuff that felt sticky and cold. It was weird. I had to wash my hands after touching it. It made my skin crawl.

It was neat to see it though. At first I thought the guy was real. Behind him is an old engine of some sort and it had some really old looking fabric/leather belts. It was kind of interesting.

Our next stop was at the Jennie Woodworth Library. It is inside the Bibb Center and is a brand new facility. They moved here from an old house that had been converted for their needs when the Bibb Center opened a couple months ago. It is a really nice library considering its size and that it is run solely by volunteers. There is free wi-fi available, four public access computers, a children's reading room, and the general library. A brilliant gem for our small town.

While we were there, mom found some books for her to catch up reading on and I got on the computer to play on Poptropica. It really was fun and I am getting a library card next time we go.

After the library, we grabbed lunch and took it to dad. He was happy to see us. Daddy works hard at the local state park and appreciated having a relaxing lunch with us.

We were excited for lunch and also after lunch.

Before we left the house mom found out that the swim area at the park had just opened. It didn't hurt that it was a good warm sunny day. We got to enjoy another beautiful gem that our area has that not many are aware of.

The beach was clean and had fresh sand. The volleyball net is brand new. The geese stayed away for most of the day. (Pretty much until some people came down with food.)

We enjoyed running up and down the beach and swimming quite a bit too. Mom didn't want to get in the water though. She said we had to be good and maybe next time she would get in with us. (She did get her feet wet.)

There are some days that is just great to unplug and have fun. This was one of those days. I was able to get in the water and play. While I don't like getting splashed and my brother did splash me a few times I was able to control my typical reaction.

I see where I can tolerate some things better now than I used to. For me I think it is awesome. I remember when there was no way I would get into the water. Even bath time was rough. We had a lot of fun getting fresh air and exercise. mom brought some apples and water for us to snack on (much better snack than they had at school). Brother and I had some good bonding time.

Towards the end of the day, my oldest sister and her boyfriend met us there too. It was good to see her. We don't see her very often since she moved out last year. She's a grown up now though and has a job and all.

Another chapter to write

2015-01-01T06:00:00.000-06:00

This past year has been a year of growth and a year of challenges.

An increase in silent meltdowns have been challenging. Health issues have left us concerned. Emotional maturity has brought some relief.

We know there will always be challenges to overcome. The road traveled is not smooth, yet it is not as rugged as others that we know.

The silent meltdowns have mostly appeared in instances that are uncontrollable. (Don't they usually?) There will be too much sensory or mental input and the switch turns off. There just has to be understanding and comfort when this happens. We do still get those other meltdowns where all the emotion comes out. We are thankful that most times it just takes a calm loving voice with favorite essential oils to calm him.

Early in the year we were having daily migraines at school and were put on medication to help sleep. While the medication helped with the sleep and ultimately the migraines, hyperactivity and lack of focus became a major issue. We tried medication for the sake of academics. It did not last long when anger and lashing out developed. Over the summer, we stopped medication and started using essential oils. The results have been amazing and we don't have a set protocol yet.

This summer we had an amazing time at camp thanks to Ranger Josh and the Montgomery Bell State Park. They have a yearly camp for those with special needs and it was great! There was archery, canoes, rock climbing, learning about nature, making some great friends, swimming, and more. It was really an amazing time of being able to be true to myself. Then I was able to join PALS for baseball in September. It was amazing! But it was hot and I got tired easy.

This fall we have had some health issues. After a dental cleaning we developed an unknown infection that attacked the lymphatic system. Misery does not quite describe the situation. There was blood-work and an ultrasound on the lymph nodes in the neck. Everything came back clear aside from a high white cell count. After two different antibiotics and essential oils, the infection FINALLY decided to go away. Unfortunately, this has made it easier to become ill.

Once I got back to school from the lymphatic infection, I was able to go to a Vanderbilt Girls Basketball game with the school field trip. It was, overwhelming. I wouldn't mind going back with a much smaller group and after I learn a bit about basketball.

The last couple weeks I have been fighting what we believe is the flu. It is not fun. I haven't ran fever in a little over a week, but the fatigue and cough is hanging on. Yet, not sure if the fatigue is new or not. I have been getting tired easier.

This year may be ending on a low not with my health, but there has been a lot of growth. There are still a lot of sensory issues I deal with like noise levels. There are a lot of food sensitivities and allergies that I have to deal with. Mom's essential oils help with my sleeping and usually keep me pretty "normal" instead of hyper. I would rather read a great book or play video games any day, but I am doing okay in school.

Looking forward to a new chapter in my life that we pray will involve a lot more progress!

Stimmy Day

2014-06-14T16:00:00.000-05:00

Summer is always a challenge.

No schedule, some schedule, no schedule, strict schedule, no schedule. It can be very difficult when you thrive on routine.

Today has been a day that I just need my own space and need to be left alone in my swing.

The soothing action of swinging helps me center myself. That and the wonderful essential oils!

Mom had already put the Balance on me. After I got upset with my brother and came back in the house, I asked for my swing. (Mom pulled it out of the attic too... that is huge! She hates the attic.)

Swing helped me calm down. After a couple minutes I asked her to bring me a pillow and put some Lavender on it. I loved it. I rocked back and forth for about thirty minutes and calmed down.

My stimmy kind of day results in me being VERY emotional, easily upset, deep pressure seeking, and proprioceptive seeking.

This can result in me being very rough with my playmates. Mom does not let me blame my stimmy behavior for breaking the rules though. I understand. She wants me to overcome the sensory issues as much as possible and instead of making excuses on why I behave a certain way, it is better to adapt and attempt to eliminate the unwanted behavior.

It is hard. But when I am able to take a moment and chill out. It is all good.

By the way... we get our essential oils from here... doTERRA. We do not receive any retribution for sharing this link. Just being a supporter to a friend.

Sleep update, another diagnosis, and hope

2014-06-13T13:47:00.001-05:00

The last few months have been remarkable.

In the end of January I was put on prescription medicine to help me sleep. I have had issues with sleeping pretty much all of my life. Mom would use lavender epsom salt, lavender soap, lavender laundry softener, lavender everything just to try to get me to relax enough to sleep. And up until about a year ago, the lavender would work in calming me and relaxing me in the evenings.

There were other things tried to and a bedtime schedule has always been a must.

As I said in the end of January I was given prescription medicine. It worked. I would sleep. Apparently, from nine years of not sleeping well, the ability to sleep all night made me very well rested and all of my active behaviors became aggravated. Aggravated as in I became less focused, hyper, and messier. This resulted in another medication a few weeks later.

While the Sensory Processing Disorder is quite evident, I gained another diagnosis.

It appears that while normally when a child is given a sleep medicine, the hyper-ness and unfocus will go away along with the headaches. Obviously I am not normal. Ha!

The other medicine helped a lot during school hours with a lot of my existing and newer problems. I was able to hold it together at school. Once I got home though I was very easy to get upset and moody.

So... for the summer, I am off of the daytime med completely and only take the sleep med when needed.

Meanwhile, mom has found some essential oils and they are helping. In the past when mom used Lavender everything, she tried essential oils from a couple brands and they would work for a little while and then stop working. We have finally found a Lavender that works and has been working continuously for a few months now. The brand is doTERRA. Mom has been AMAZED at the quality of the oils.

In addition to the Lavender at night, I am also using Balance during the day. And for the most part we see a big difference. The best part about the oils is that they are all natural, which means they are a lot safer for my heart than the prescriptions. Although, we do still have to watch how I react.

Help me support others with heart disease!

2014-02-05T09:45:00.000-06:00

I have been participating in the Jump Rope For Heart campaign at school. My donation page is http://jumphoopsgsa.kintera.org/bensbrokenheart

As we have learned about why we need to take care of our hearts, I developed a passion to support Jump Rope For Heart.

We have been taught that it is important to stay active and exercise so that our heart muscle is strong. We have also been taught that we have to eat healthy and stay away from the junk food. (Mom already tries to do that with me.)

For those that follow my blog, you know that I am a Congenital Heart Defect Warrior. At one week of age I had Coaractation of the Aorta repaired and since then have been monitored for a Bicuspid Aortic Valve with Stenosis. I am doing well as long as I exercise and eat healthy. I have met other children that have similar CHDs and they have had to have more surgeries or are weak and sick.

I am blessed, so that means I need to advocate for others.

We have to turn in our Sponsor Form Friday morning (February 7th) and I know I am late getting this out, but I also know that you care about those fighting heart disease and those born with heart defects.

Thank you in advance!

Sleep, precious sleep

2014-01-15T10:17:00.000-06:00

For those that have known me, it comes to no surprise when sleep issues are brought up. I don't sleep. Or, perhaps I should say, I do not sleep much.

Up until a few months ago, my sleep didn't really matter too much. I was getting enough rest to go to school and do my work. I was a pretty good kid with some hyperactivity and a few quirks.

Then the headaches/migraines started up again. (I say again because I had a flair last spring, but it only lasted about two weeks.)

This headache/migraine flair has been going on since the middle of November. There are a couple of ideas floating around as to why, but we started with keeping a diary. Turns out in the month of December I had 11 bad headaches. (This is not good.)

I went to the doctor yesterday. Mom pointed out the fact that I don't sleep and asked if that could have an impact of my headaches. While at the doctor's office, I was bouncing all over the place and talking a mile a minute. The doctor thinks my sleep problem may be causing other issues with me, based on my behavior.

So, starting last night, I am on a tight regimen at bed time in order to get me to sleep. We do realize this may be quite an adjustment, but in order to get everything else under-control, effort now will be worth it.

My new regimen is the following:
• 8:00 Bath time w/ lavender epsom salt
• 8:10 Sleep meds
• 8:20 Laying down in bed with a book or TV on quietly.
• 9:00 Lights out
Prior to my bath, my room has to be cleaned up and school work done. It worked last night. I was asleep by 8:45 and I felt so good this morning. I hope that once my schedule is set I will be feeling a lot better.

Being a SPD kid can add its own quirks to the equation to. This just means that we are grabbing hold and hanging on during this ride.

Oh, we did talk to the cardiologist about my headaches when I went for that check up two weeks ago, she is of the opinion that my headaches are not related to my heart at all.

Focus vs Chaos

2014-01-08T12:56:00.000-06:00

Everybody can benefit from a structured environment. Even an individual that is a creative spirit needs structure in order to provide boundaries with their time and energy.

This last week has been rough. Winter break started December 20^th and we were scheduled to go back to school yesterday, January 7^th. We were unable to go back to school because of the frigid temperatures and ice on the roads, here in Tennessee it is difficult to prepare for such a cold snap when they are rare. For Benji, not only did the anticipation of going back to school get disrupted, it was also too cold to go outside and play in what little snow we had. (It was single digit temperatures for about two days.)

In addition, prior to winter break we had an ice storm come through that messed up the last week of school.

So, for Benji, structure and focus has flown out the window for a good month. Don't forget the annual heart checkup last week. There is nothing like a doctor's appointment in a different city to shake things up.

We've noticed with the chaos his sensory issues are much more prevalent. When Benji is trying to focus on something, even if it is simply trying to play a game, background noise is very distracting to him and it gets him angry. He is even sensitive to touch.

It appears that because of the chaos, Benji has become hyper-focused. Right now, as I am writing he is locked in on one of his books. Nothing is distracting him at all. The cat (Neko-chan) that thinks he is a lapdog decided to sit on him and Benji just ignored him. Yet, if that focus did get broke, we would have a major nuclear level meltdown that SPD and ASD parents know all about.

Ahhh, the world of chaos.

We much prefer focus. When the structure of day to day living is somewhat predictable, the chaos is minimized and focus increases. Structure and schedules. Boundaries. All kids need it, especially kids with sensory issues and focus problems. This includes children with hyperactivity.

There has to be rules. There has to be some predictability. Get spontaneous in the activity but predictable in the activity time.

New Year Refocus

2014-01-01T19:09:00.000-06:00

The last year or so has been an unfocused jumble. I have not stuck to a routine like I should and it has shown.

It does not matter what label the doctors put on me or whether I am considered to have issues. First and foremost, I am me. God made me just the way I am.

What my family knows is that I need structure and I need to learn discipline. Along with that, I need to refocus my exercise and dietary needs. When looking at what needs to be done written in black and white, the realization is that this will not be a small task. Fixing my diet will not be that hard because we haven’t strayed too far, the problem areas are the exercise and structure.

I was in Tae Kwon Do, but I quit last year. I had some problems I needed to work through and now I don’t want to go back just yet. So, we need to find something else to replace that structure and exercise.

As far as my health, my heart is stable. I have a bicuspid aortic valve with stenosis. Right now it is considered mild stenosis. This is nothing short of a miracle considering after the surgery for my coarctation we were told I would probably have to have at least an ablation by the time I was two.

Dietary wise, I am hypoglycemic and my body does not process any artificial sugars. This means all natural for me. Plus, I have a few interesting allergies and sensitivities that make life interesting. Lactose intolerance, red and yellow dye allergies, and the list gets odder from there.

Here is to a refocused new year!

I did something amazing!

2013-09-29T21:32:00.000-05:00

Before the GovRun

Saturday, my mom took me to her school for a color run that she was participating in. When we checked in, they had an extra ticket for her so I was able to participate too... if I wanted it to.

When I first heard about it, I was yeah! I can run! Then I was told they throw paint at you while you are running. I will be honest, that didn't sound too fun.

Mom told me to think about it.

We had the day. There was a fun carnival with 'stuff-a-bear' activities and inflatable bounce houses. After lunch was when I had to make the decision so that we knew who was going to go with mom.

We talked about it and mom told me that there was an option to walk or run around the paint stations so that we didn't get covered in paint. There was also the option to walk instead of run, mom preferred this one because she has a bad knee. So after much deliberation, I decided to do it.

Mom told me that after the run we could leave because they were going to have a loud party with music and more paint throwing that would involve people bumping into each other and getting paint all over us in addition to it just being loud. I was fine with that.

Then it was time for the race to start.

I am not sure what came over me, but when they did the count down and said go... I ran. Dad said I finished the mile in less than ten minutes, with not a speck of paint on me. I just ran too fast for it to land on me.

Once mom caught up to me I begged her to go into the after party and we had a blast. We threw paint, tossed huge beach balls, got sprayed with paint, and danced. It was fun.

But when it was all over, I was done. I was tired and more than ready to go home and go to bed. I did tell mom that the reason I could handle the silliness was because I wanted to have fun. It is all a matter of focus for me. If I focus on having fun, I can enjoy myself. That way the fact that the music was crazy loud did not hurt. And while I changed clothes as soon as we got to the truck and took a bath as soon as we got home, I was okay. I am slowly adjusting to life with sensory processing disorder.

At the end of it all.

Sensory Processing Disorder and summer

2013-06-19T09:48:00.000-05:00

Most kids look forward to getting out of school and enjoying summer break.

Most kids revel in the lack of a set schedule during the summer.

Most kids love to be able to sleep in and stay up late.

I am not most kids.

Do not get me wrong. I enjoy not being in school and I enjoy being able to sleep late in the mornings. The problem is, without a schedule I do not know what to do with myself.

See, if I am unsure of what is happening I get anxious. The anxiety builds and then I am hyper and things that I can usually control start bothering me.

One may ask how that has anything to do with sensory processing disorder and that is a very good question. The reason I need some sort of schedule, even a flexible one, is so I can regulate myself. The goal for me is to be able to live as close to a normal life as possible and the sooner I learn to do that, the better. Learning how to control my sensory issues, which include auditory, visual, and tactile defensiveness, is key to being able to function in society.

I mean really. It is not like I can start throwing myself on the ground or against a wall when I need vestibular stimulation. It is much better for me to swing or jump on a trampoline. Yet, those activities are not always an option depending on where I am.

Through trial and error we have discovered that for me it is quite beneficial to be active first thing in the morning then have a break where we work on some summer school activities, after that more activity.

The activity ranges from playing outside on the swing set to organized play to going to a playground or even swimming. There are some activities such as baseball, football, and soccer that I am unable to play because of my heart, but other than that I can play most games outside.

I have a bicuspid aortic valve with stenosis, so we have to be careful about contact sports and activities.

The key to relieving anxiety and minimizing SPD issues is being flexible and acknowledging limits. There are mornings that I wake up and I just do not want to do anything, thankfully my mom can see that and she is flexible with her schedule most days to be able to accommodate it. When she cannot, she has a backup plan. Mom seems to always have a backup plan.

Camp… Anxiety… SPD… and Me, Part 2

2013-06-15T10:13:00.001-05:00

The best way to face any challenge is head on, at least in theory.

As preparation for camp, mom made sure I had a lavender bath Sunday night and that I went to bed at a good time. Unfortunately, I was so worked up I still could not sleep and ended up keeping her up most of the night too.

Monday morning finally got here and the anticipation was made worse when we had to drop my brother off at his camp 30 minutes before me. So we sat. And I was anxious. What if it was noisy? Would I have any friends? Would they like me? Would it be too loud? Would it be fun? What if I could not handle the music? Would the teacher be nice?

And then, it was time.

Mom took me in to meet Ms. Beth. She was in charge of the art and she already was aware of my sensory processing disorder from what mom told me. When I met her she seemed nice; there was a lot of stuff going on in the art room, but that is how art rooms are supposed to be. I told Ms. Beth that this was the first time I was doing anything without my mom besides going to school or kids church. I think she noticed I was nervous.

After I got to see the art room, we went to the music room where everybody was waiting to start the day. Ms. Jackie was in there. I met a couple of the kids, but I was a little shy and stayed to myself at first. I did relax some, to the point that I did not realize mom had left until after we started our art project of the day.

When I mom picked me up I was happy to share that I made a friend and we had a couple things in common. I really enjoyed art! We painted pottery pieces with *Spots Pots Mobile Pottery*. Music was a little hard for me because it was loud and it hurt my head.

Tuesday morning when mom took me to camp she spoke with Ms. Jackie and let her know about my sensory processing disorder. She understood and told me that if it got too loud to just let her know and she would let me sit in her office. It really felt GREAT having a teacher understand my needs.

The anxiety subsided after Tuesday and while there were still some sensory issues going on, things went great. It was really difficult for me to not eat the salt that we were using to make texture with on one of our paintings. It felt so odd, too.

The best thing of camp was that I made two friends; one wanted to stay in touch and made sure my mom had his dad’s information. I thought that was cool. Plus, I want to do it again next year! It was fun. Camp is not as scary as I thought it would be.

We also got to have an art show and a concert to show our family and friends what all we did this past week. It was fun. Mom and Dad got to see me sing and play an instrument or two. That was so cool.

______________________________________________

These past two posts may not seem like much, but for those that know Benji you know how taxing it is for him to adjust to something different. He absolutely hates change. In a realization this week, because of me always being there and helping him when his SPD flares up, I have caused Benji to grow up in a sheltered bubble. He is not one of those children that always gets his way and such, it is just a matter of his experiences have been limited because as his mom I have been concerned, afraid, terrified, whatever to let the chips fall where they may. True, he is only eight, there is nothing wrong with your child being a child. Lord knows too many kids grow up way to fast these days anyway. All I am saying is that, my eyes were opened along with Benji's. - Benji's mom

Camp… Anxiety… SPD… and Me, Part 1

2013-06-14T10:48:00.004-05:00

Mom signed me up for Summer Arts Academy this week.

When she told me about it, I was worried. The first thoughts that went through my mind were that my mom was sending me away. I did not want to be sent away. I had never been anywhere without my mom except church and school and that does not really count because with church mom is in the building and school we have to go. I mean I have gone to friend’s houses but only a couple and my mom, or dad, usually stays because I like it that way.

Needless to say, the thought of camp was scary at first.

Mom told me all about the art stuff we would get to do and then that there would also be music. I was excited about the art, I love art. It is so much fun to make stuff and all. The music part, I was not so excited about.

I have sensory processing disorder. I am auditory, visual, and tactile defensive. I have gone through a LOT of occupational therapy when I was younger, and mom has continued, to desensitize the tactile. However, what I see and what I hear cannot really be desensitized. There are ways to cope, but if it hurts, it hurts.

All of this to say, music is a gray area. I love music, as long as it is on my terms. It is something that I need to be able to control or be able to remove myself. But hey, I am eight, I sometimes do not handle situations correctly and when I am already anxious about a situation it can make it worse.

The anxiousness was evident when we went to church Sunday. I could not tolerate the worship music and had to wear my headphones. Mom started to get concerned; she knew that if I did not relax that camp would be a wash.

Things my mom does to calm me

A few tricks that mom does to help me when I get anxious or ‘hyperkinetic’. No one thing works exclusively but it does seem to help.

A warm lavender Epsomsalt bath – Epsom salt allegedly helps remove impurities from your body and then lavender helps relax you.*

Lavender soap – we use a homemade lavender soap that has lavender and evening primrose oil in it. In our experience the soap aides in calming Benji down. (Lavender Lullabyfrom Neika’s Naturals)*

Lavender Deodorant – this is new to our regimen. There needed to be something that could be used during the day that would not put Benji to sleep, but would help calm. So far, it seems to do the trick.*

Exercises – Proprioceptive feedback helps, such as: Jumping Jacks, Wall Pushups, doing Sit-ups on the exercise ball, jumping on the trampoline, and running. All of these exercises give feedback into the nerves and joints that perhaps everyday activity does not necessarily give.

Massage – deep pressure massage. In Benji’s case he prefers a deep massage, the brushing technique as we were shown does not help, it makes him worse.

Hug Vest – A silicone pressure vest that gives hugs essentially. (Personally, I would talk to your therapist before trying this.)

Weighted Blanket – We have an old homemade quilt that is HEAVY. On Benji’s bad days I will usually find him in his room, under his bed in the corner wrapped up in this quilt.

*Be cautious with Lavender, some people are allergic to it.

Congenital Heart Defect Awareness Week, GO!

2013-02-07T13:01:00.001-06:00

This week, February 7-14, is Congenital Heart Defect Awareness Week. There is a very good chance social media will become bombarded with many individuals and organizations posting to bring awareness to the number one birth defect in the United States.

I am 1 in 100

Currently, the figures for congenital heart defects are as staggering as 1 in 100 births, yet many women of childbearing age are unaware of the risk of having a baby with a defective heart. While in recent years there have been children born to those with celebrity status which has drawn some attention to this medical crisis, it is not enough.

Newborn screening in EVERY state should be MANDATORY, not optional to check with pulse oximetry. While pulse ox does not catch every heart defect it does catch more than doing nothing and it does save lives, this warrants the cost of a $15 dollar test on a piece of equipment that can be reused numerous times. Ask any parent that has found out about CHD from a coroner.

Newborn screening is not enough, however. We need to know how to prevent congenital heart defects and in order to do that we have to find out how they happen. Research needs to be funded. With the community that has formed in part to the accessibility from the internet, genetic links should be able to be established along with environmental and nutritional clues.

We can not stop with screening, we have to press on and move further. We have to look at the future. The survivors today will have children tomorrow and those children will need answers.

Annual CHD check up!

2013-01-08T01:32:00.000-06:00

Today I went to my cardiologist, Dr. Hermo at Children's Hearts in Nashville. We got there a little early, but I didn't mind. I knew mom needed to allow time for traffic and everything since Nashville can be crazy at times.

My oldest sister came with this time, but she pretty much stayed quiet. I think she just wanted to get out of the house. And she sure did not want to get caught in a picture.

Anyhow, we ended up getting there about thirty minutes early which I guess is better than being late. That was fine with me, I brought my LEGO Ninjago: Character Encyclopedia with me plus there was the fish tank and a few toys there to play with. Which, as mom skillfully captured, I had to fix the blocks. Can you believe somebody had mixed the colors up? I of course had to put them where they belonged.

Once we were taken back to the exam room we had to wait a few more minutes, but I was able to humor myself there too.

So, for review... At a week of age I had a subclavian flap repair for CoArctation of the Aorta and to take care of the patent ductus arteriosis. In addition to that my Aortic Valve is bicuspid with stenosis.

There are a few things that Dr. Hermo does to make sure my heart is working well. She starts with a basic exam that involves listening to my heart and checking for my pulse in the extremities, that tickles sometimes. After that she checks my blood pressure, which was excellent (87/62). Then she uses the pulse oxymeter to measure the amount of oxygen in my blood and my heart rate which oxygen was 98% and pulse was 76, although I was wiggling my finger. I did not like the machine she used this time because it is the one that clips onto your finger and I thought it was going to pinch me.

After that, I went and got measured. I am 4ft 6in and 65lbs. Mom asked where I am hiding my weight.

Once that was done I had an EKG(?) where Dr. Hermo put 10 pads and wires on me and this machine printed out some lines. I did not like the way the pads felt. They were gooey and sticky, that made it hard to stay still for the machine to get the information it had to get.

After that I had the echocardiogram, which is an ultrasound of the heart. My aorta was checked to make sure everything looked good, which it looks beautiful! And the valve was checked to make sure there were no significant changes. Current diagnosis is mild stenosis with negligible change from last year. Treatment is to continue what we are doing and if any symptoms show up call. Other than that, we go back next year.

Praise God for another awesome year!

So, what? It's Strep Throat.

2012-10-02T11:57:00.000-05:00

This past week I've had strep throat. To many people, that does not mean a whole lot. You go to the doctor, get some antibiotics and be done with it.

There is just a slight problem when it comes to me.

Because of my sensory issues, I am not able to explain to mom and dad that my throat hurts and that it feels like I have razor blades cutting me every time I swallow. Instead I get cranky and whiny. Also, because I suffer from allergies the symptoms are masked and it is hard to tell. It really is funny to hear mom talk to the doctor when he asks why we are there for what appears to be allergy issues.

"I am not seeing any symptoms other than what appears to be allergies, why are we here today?"

"He's sick."

"Why do you think so?"

"Try living with him."

I imagine only families with kids that have sensory issues would fully understand that conversation. Because at the end of the conversation the nurse stepped in and relayed to the doctor that the strep test came back positive.

Then this leads to why strep throat can be dangerous for a child like me.

If untreated, strep throat can sometimes cause complications such as kidney inflammation and rheumatic fever. Rheumatic fever can lead to painful and inflamed joints, a rash and even damage to heart valves. - MayoClinic.com

See, I have a bicuspid aortic valve with stenosis that leaks already. The walls of the valve were already thickened when I was born. You say you thought I had surgery to repair my heart? Oh, I had closed heart surgery to repair my aorta. The part of my heart they repaired was outside of the main muscle. I had a CoArctation of the Aorta that was repaired with the subclavian flap, a technique where they used the artery that led towards my left arm to provide tissue for the aorta because it was too narrow for blood to flow through to the rest of my body.

I apologize, I digressed slightly. Strep throat can be dangerous in anybody that has a heart condition, especially a person with a problem with their valves. Obviously, the strep would have to progress in to rheumatic fever. The key is to stay healthy and as soon as symptoms present get to the doctor. With a sensory processing disorder child, it is not always so easy. In that case, there needs to be an understanding from those around the family that the child's health is extremely important. Rheumatic fever can lead to heart attack or stroke.

We do not share this information to fear monger. It is for enlightenment. At our house, my mom and dad pray over us and before we go to the doctor we are prayed over. Mom believes in us eating a healthy diet and getting plenty of exercise. All of these things promote health. Unfortunately, sometimes I get sick. When that happens, I go to the doctor and take medicine. It is not the end of the world, but if it takes longer than normal to get over something then my parents get concerned. Their concern isn't because they doubt God, it's because they love me and don't want me to be sick.