Life with CHD, keeps you busy.

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

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!

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

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

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

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.

Another chapter to write

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

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

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!

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

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.

New Year Refocus

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!

Congenital Heart Defect Awareness Week, GO!

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!

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.

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.

Finding the Trigger and Fixing the Problem

Angry over stimulated Benji

The last two or so weeks have been quite trying for Benji. (By the way, this is Benji's mom posting today)

Second grade is a big adjustment for him. There is a lot of homework that involves a lot of writing. He probably has the strictest teacher he has ever had. (I think this is a good thing.) He only has a couple friends in his class from previous years, so he is having to make new friends. (This is hard on Benji, but better he learn how in second grade then as an adult.)

All of these changes has had an affect on Benji that we expected. We have learned that there is always an adjustment period. However, this go around things were not proceeding normally. Benji was getting very emotional. He was constantly on the go and could not focus. If he got upset, it turned to an aggressive anger very quickly. This was very unlike our sweet, loving, compassionate Benji. After one episode of him getting angry, we got him calmed down and he told us his heart was hurting. This told me that we had to find out what was going on.

Poison for Benji

I started asking questions. I would ask about his day and get basic answers that really did not get me anywhere. That is, until Monday. After I went over his homework with him and we had our chit chat I noticed that he was hiding his jacket. I asked what he had. There, in his jacket, was a roll of sweet tarts. Nice bright colored candy with bright pink/red, blue, purple and orange pieces. If I had the ingredient list I already know what is used for the coloring. Red 40, Yellow 5/6 ... In fact, doing a quick search.

These candies are poison to my child. He is sensitive to MSG (which is cleverly mislabeled ALL the time as maltodextrin), allergic to RED 40, sensitive to Yellow 5/6. In addition, he is only supposed to have natural sugars and this has corn syrup solids. (http://www.foodfacts.com/NutritionFacts/Hard/Wonka-Sweettarts-145-oz/10320)

Now, the part that upsets me is that Benji has an IEP and the last copy I have (I say that because I am a cynic) says that he is only to eat the food we provide. Also, as a parent of a special needs child (Benji's dietary needs and medical needs) I write an introduction letter EVERY year for his new teacher. This year I gave that letter to his teacher at open house and covered the bases with her. This still happened.

Benji was getting these "rewards" daily for good behavior. He would get the candy at the end of the day and eat it without me knowing he ever got them. (He knows he shouldn't have them but it is like he craves them. Kind of like a drug addict that knows it is bad for them but can't help it.)

The good thing is I have gotten in contact with the teacher and explained the situation more thoroughly and stressed the importance. Benji now has his own treat bucket with "Benji safe" rewards. Which this works better than his plan once we explained to him the situation. Tuesday he got in the truck and told me, "Momma! I got a card pulled today, so I couldn't get any candy!"

The importance here is making sure to have communication with the teacher and the principal. The key is, when the communication fails (because it will), to not attack like a momma bear but to confidently advocate for your child in a manner that is not brash. You have to know what your child's rights are, know what is in the IEP, know what you have informed the school and the teacher of. You also have to be prepared to take the next step.

Our family is hopeful that this is the only "problem" Benji has this school year. We are understanding in regard to it being the beginning of the school year and chaotic, but it does not excuse it.

I pray that through our experience, somebody else is helped.

Much to do About EVERYTHING!!

Here where I live, we start school on August 1st. We have an extended year schedule that gives us a fall break, winter break and spring break while shortening our summer break. It works pretty good. I like it, most of the time.

An Overwhelming Day!

Last week, mom found out who my teacher was going to be for 2nd grade. It is the same teacher one of my brothers had two years ago. His experience was difficult and he started telling me all of this scary stuff about homework and how strict she is in class. Honestly, my brother scared me.

I was already concerned about going to 2nd grade. I do not write very well, and sometimes I get picked on for it. Mom thinks it is from muscle tone or something to do with scar tissue. (MOM NOTE** On Benji's right wrist is where the PICC line was when he had the closed heart surgery to repair the CoArctation of the Aorta at one week of age. His right hand has always been a little weaker when it comes to grasping.) I am also worried about reading. I have read all the Dr. Seuss books in the library and what if there isn't anything else that I can read? Somethings are hard for me to read.

Most of all, the biggest thing I am worried about? What if I don't have any friends in my class? What if nobody likes me? What if my teacher don't like me? What if the class is loud? What if the teacher yells? What if? What if? What if?

Tuesday night mom made sure we went to Tae Kwon Do and I got a good work out in. I think it helped some. I fell alseep before we got home. I did sleep pretty good to. I did not want to go to school Wednesday morning though. I was too anxious. I was very worked up.

Then Mom reminded me again (she had told me a couple times) that just because my brother had the experience he had with this teacher, it did not mean that I would have the same experience. After all, the teacher I had last year, he also had and the experience was different.   (MOM NOTE**  Big brother likes to exaggerate and get under Benji's skin, the teacher is a good teacher. Homework was an issue but that is because big brother was lazy when it came to homework. Teacher is strict and organized, should work well.)  After that reminder, I decided that my day was going to be better. Then when we got to school I saw a couple of my friends and found out some of them were in my class!

The first day went mostly well. There were a couple bumps. I was very tired after school. And mom said I was a little stimmy when I got home. I was crashing into things and falling on the floor. At church I did stay with her and dad because my day wore me out.

Now, I feel better... still a bit anxious. Tonight's Tae Kwon Do workout will be needed. I just need for those around me to understand that I get overwhelmed, and when I do I need a break. I don't expect kids my age to always get it, but I need for adults to be understanding.

Maybe you aren't an adult around me, but you are around a kid like me. The best thing you can do is just try to be understanding. Picking on a kid and saying things like "Aww... you had to stay with your mommy." is mean. It's being a bully. Especially if you have already been told the kid is special needs. Be loving and nurturing. Lose the hate.

Congenital Heart Defect Awareness

One of the things we use my blog for is to draw attention to congenital heart defects (CHD). I was born with coarctation of the aorta(CoA), bicuspid aortic valve with stenosis and had a patent ductus arteriosis (PDA). At a week of age my cardiac surgeon removed the PDA and repaired the CoA with a subclavian flap. One of the reasons the doctors were able to find the CHDs was because a simple and inexpensive test called a pulse ox. Its a little device that measures the oxygen levels in your blood along with pulse.
My parents were blessed, Tennessee did not have a law concerning pulse oximetery at that time. Approximately 1 in 100 babies in the U.S. are born with a CHD. You have to be aware.

Growing Up, 1st grade

1st day of school for Benji!

August has brought a change in life. Started first grade at the beginning of the month. It is very different from kindergarten.

While 1st grade is very different, I think I like it. I read my first story to mom pretty well. She only had to help me a couple times. I am having to make new friends, only two classmates are in my class from last year. I like my teacher and she has a bobcat in the classroom. It is real, but it is not alive. (I love all cats!)

On August 11th I went back to the dentist again. I did NOT like it. Both mom and the dentist tell me that the "habit-breaking" appliance is good to do. The dentist said it might prevent me from having to get braces. All I know is that I do not like it. (What I did like is that I got to eat applesauce and pudding for a few days. Mom even made her chocolate homemade pudding.) Oh! I also lost a tooth on the 7th!

This past week I had to go in during recess because while I was outside running and playing my heart hurt. (I think it's just I get going so fast that I get tried, plus it is really hot outside.) I told mom and she says to let her know if it happens again. She seemed worried about it. It must be because of the bicuspid aortic valve with stenosis. Since then, mom is limiting how much I am outside and making sure I drink a LOT of water.

(Mom Note:: He is okay, it is just his body telling him to slow down/stop. Making sure he takes breaks and is hydrated is the key. This is also why Benji does not play little league baseball.)

I also went to a birthday party for my friend Lilly. She is so cute! She likes me and I like her, but I do not want a girlfriend, I just want a friend. At her birthday party she had a bounce house and I really liked playing in it! We had a lot of fun.

And now we start a new week. I already know it will involve a lot of Tae Kwon Do because I didn't get to go last week with our crazy schedules.

Have a good day!

Baby Ashley Part 2

Continuing from earlier...

-------------------------------------

And then we got the shock of our lives. Dr. Finley, Ashley's cardiologist came in for her pre-op exam. He commented on how much better her heart sounded, and said he had to go look over her echo photos, and then he'd be back. 

An hour later he returned. He started talking as he was walking into the room but for the life of me I can't tell you what he said. I knew what he was saying, but I couldn't register the words. All I know is that he was telling us that surgery was canceled.

Mark and I started crying, as we held Ashley. Dr. Finley went on to explain that her echo showed that the VSD was getting smaller. That combined with the fact that she improved so much with the extra medication, meant they could cancel the surgery, and just wait and see what the VSD did.

We cried the whole way back to the hotel. We went and told the roomful of waiting grandparents and relatives the good news. Then we all went out to dinner to celebrate. It was the first time that the four of us: Mark, myself, Thomas & Ashley had ever been out to dinner together like a "normal" family.

We were amazed, since Ashley's VSD is a type that is rare to close. She has a membranous VSD with an inlet extension, meaning it involves her Tricuspid Valve. Only 5% of VSD's involve the inlet area, and it's very rare for them to close. Also, doctors had been telling us for months, that it was impossible the hole was ever going to get small enough to avoid surgery, and that her heart failure was too significant. Yet here we were, surgery canceled.

Only two days later, after also seeing a GI Specialist to rule out mal-absorption problems, given her slow growth, we were on our way home, a week earlier than planned.

Since she showed such improvement, the cardiologist cut Ashley's medications in half, however, within a week of being home, she was back in heart failure: her liver was swollen, her weight gain dropped and her breathing rate was picking up again. Over the next two weeks her medications were adjusted until finally, she was on more medication than she had been previously.

Once the medications were increased, we started seeing some improvements - Ashley became stronger and more active. She was much more alert than she used to be. We honestly didn't realize how lethargic she was as a baby, but we received numerous comments from friends, family and neighbors on what a huge improvement there was. We couldn't see it, because we were around her all the time, we didn't see the difference.

Shortly after coming home, we were able to get rid of her NG tube. She had increased her intake enough, that while she was just meeting her daily minimum intake, she was doing it. We had to feed her every two hours, but it was worth it to be able to see her beautiful face.

I wish that the story could have ended there, that things would have just continued to get better and easier, but they didn't. Ashley's weight gain continued to slow down. Her liver continued to swell, and she started drinking less again. They increased her Lasix yet again. Doctor's also started talking about surgery again. Her cardiologist said that while it was worth giving her every chance to let the hole close, that it was likely she would still need surgery. Her family doctor also thought that surgery would likely still happen. Shortly after the last Lasix increase, one day I noticed that Ashley wasn't peeing as much as she used to. However, at that time, I didn't really think anything of it. However, after a week, her output volume continued to drop. Babies generally adhere to the rule of "what goes in must come out". If they take in 750 ml in a day, then roughly 750 ml should come out. With a baby on diuretics, it's actually expected that even more should come out, than goes in. I knew Ashley wasn't peeing enough.

We started weighing her diapers as we had been shown to. She was peeing out only 1/3 of the volume that was going into her. Eventually it got so bad that she was only peeing out 1/4 of the volume going in, which was getting near the dangerous levels, in that her kidney's were no longer able to filter out poisons such as creatine.

Her pediatrician finally ruled that the Lasix was the problem. She was on too high of a dose, and it actually dehydrated her. The purpose of Lasix is to reduce fluid volume in the body, which reduces blood volume, thereby reducing the workload of the heart. Unfortunately, her last dosage increase had reduced her blood volume too much, and it reduced the amount of blood circulating through the kidneys, which in turn, reduced her urine output.

Her Lasix was cut in half immediately, and she had to undergo blood work to check her kidney function, to ensure that her poison levels were okay. Thankfully, we had caught it early, and all was well. Left untreated, it could have led to kidney failure. It took a couple weeks, but her output did eventually pick up. Not as much as it had been a month or so ago, but more than it had been after the Lasix.

We had no sooner gotten over this scare, when it was decided that her NG feeding tube had to be reinserted. Ashley had gone from drinking 25 ounces per day, to only taking 18-20 ounces. Her family doctor felt one of the reasons that her urine output wasn't back up to normal amounts was because she just wasn't taking in enough fluid volume. Also, her weight gain had dropped significantly. She had gone from gaining an average of 13 ounces per month to only having gained 12 ounces in the last 2 months.

I was devastated. Part of me felt guilt, as it was our decision, with the doctor's okay, to take the NG tube out in the first place, and see how she did. Granted her gain had slowed even before it came out, but still... Also, I'll admit, I was enjoying truly seeing my daughter without a yellow tube coming out of her nose, and her cheeks covered in tape. But the main reason my heart broke was for Ashley - she hated the tube, and was a much happier baby without it.

The NG tube re-insertion did not go well, and it only lasted a week and a half, three or four of which days the tube was actually out. She screamed, she cried, she didn't sleep well, and oddly enough this time around, as soon as it went in her nose would get instantly congested, to the point that she actually couldn't even breathe while eating. She would want to nurse, but couldn't breathe, and would cry and scream.

I finally had enough, ripped it out one morning, and the next time she saw the doctor, I told her they will never put another one of those things in my daughter again. She said the difficulties this time around were likely due to the fact that she was so much older, and much more aware. Again, I felt the guilt. Perhaps, had we just left it in, she would have remained conditioned to it, and it wouldn't have been a problem.

Finally, on December 21st, 2010, Ashley had her follow up with cardiology. Two months had passed since the canceled surgery date. We were both anxious for this appointment, as we knew we were going to be informed about the likelihood of surgery being needed. We honestly didn't know what to think. On one hand, Ashley was the strongest and most active we had ever seen her. She was not only meeting physical milestones, she was meeting them early! At 6 & 1/2 months of age, she was sitting completely on her own, she was crawling, and able to pull herself up to stand.

On the other hand, she was still on three different heart medications, her weight gain was slow, and she wasn't eating very much, two of the major criteria for if surgery was indicated. We went to the regional hospital located three hours from our home, where the cardiology clinic was being held. Ashley underwent her 5th echo, her EKG having been done a couple weeks earlier at home. We went through all the normal preliminaries, weight and height check, and blood pressure check. We were then left to wait for the doctor.

I will never forget December 21st, it will always be a special day in my heart, for it is the day that Christmas came early for us.

Dr. Chen, the cardiologist who we were seeing that day came in, and did his thorough exam of Ashley. He talked in depth to us going over details of what had been happening the last couple months, where we were at now. And then he got down to what we were waiting to hear, the echo results.

Once again, we sat stunned, and I in tears, while listening to what the man in front of me had to say. Ashley's ASD was gone, and her VSD had closed significantly! Her VSD was now so small, they hadn't even bothered to measure it, and the pressure gradient had increased from 64 to 108! There was no sign of either her tricuspid or aortic valves leaking. Her echo and EKG were perfectly normal, her heart function was perfectly normal, and it was back to a normal size.

"Your daughter is never going to require heart surgery," he said. Tears ran down my face as I thanked him for the news. Tears ran down my face the whole way out of the hospital.

We were also advised that she was completely out of heart failure, and were told to remove all medications, that she didn't need them. He said he expected that her VSD would close completely - a true miracle, since we had been told by numerous doctor's that that was a complete impossibility. He cleared us for a year, at which time they would bring us back just to check and make sure the VSD had closed okay, and without complications - of which he didn't anticipate any.

When we got to the car, I started sobbing, absolutely sobbing. I can't even begin to tell you all the emotions that were flooding through me at that moment. It was the culmination of six months of agony, fear, frustration, anger, worry, love, stress, exhaustion. Of hospitalizations, endless doctor's appointments, tests, blood work and feeding tubes. It was tears of thankfulness and praise to God, whom I credit fully with Ashley's healing - though I do also think that a large portion of her miraculous healing is her own spirit and determination, but that too, was given to her by God. It was the relief and utter joy of knowing that she would never require 

 open heart surgery. It was the release of a lifetime lived in only six short months.

 
♥

Ashley did phenomenal coming off of the medications, and within days not only did her appetite pick up, but her urine output is now back to normal. She continues to remain on concentrated calorie formula, as she still doesn't eat enough in a day to take in the required amount of calories, and her growth is still slow. 

At her December appointment, the cardiologist told us that Ashley's weight issues no longer have anything to do with her heart, and probably hadn't for a month or two. She is going to be evaluated by a team of speech, occupational and feeding therapists in January, to see if there is a physical reason for her poor eating and slow growth. Depending on the results of that, she may go through testing to see if there is a problem with how her body absorbs and/or breaks down proteins and nutrients. I, however, remain optimistic that there really is nothing else wrong, that she's just playing catch up from her very rough start.

Ashley also continues to battle GERD (gastro-esophageal reflux disease) and is on daily medication for this, as well as special pre-digested, hypoallergenic formula. We are hoping that she will eventually outgrow this.

While many times this journey has broken my heart, and certainly brought me to tears, it has also taught us so much. We have learned the value of family and friends. Without the emotional support and physical help of our family and friends, be it in the form of a meal dropped off, housecleaning or childcare, we could never have gotten through this.

I have learned more about faith, prayer and God in these months, than in my entire life. God is real. He is my source of strength, peace and comfort. I truly believe that he has a plan for all us of, in all things, good or bad, and I know that he has something special in store for Ashley.

And Ashley. She is the strongest person I know. She has been through more in her short life, than some will go through in a lifetime.

She has taught us the meaning of unconditional love. There were days when I was restraining her to insert her NG tube or perhaps her father was holding her while lab techs drew yet another blood sample. She cried and screamed through these painful procedures, and yet, when it was all over, she would look up at us and smile through her tears.

Even though we have caused her repeated pain, she loves us. Who else, besides God, is capable of that kind of love?

God knew we had lessons that we needed to learn in life: patience, faith, trust, perseverance, humility, strength, love, dependence and many more. So, he wrapped them up and sent them in the form of Ashley. She is my angel here on earth.