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!

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!

Echo Update

Cardiologist visit was uneventful. Praise the Lord.

Pulse-ox was 96% and Blood Pressure was 98.

Stats from right leg were 88 over 72.

Stats from right arm were 80 over 57.

This is without meds! The aorta looks great, no problems from the repair. The valve (aortic) is leaking but there has been little to no change since May.

Benji behaved wonderfully! He told Dr. Hermo all about his transformer Bumblebee. He stayed calm for the blood pressure and pulse ox. He was very curious about the echo but did as he was asked and laid still.

Benji has been okayed to do the Miracle Ball sports and T ball as long as the coaches understand he will need to rest more than normal and that heat will have a significant affect on him. (No problem there considering I am momma bear.)

OT went good. Robyn was impressed that he was willing to play in the shaving cream while "washing" the cars in the car wash. He was tired and distracted but it was expected some. She got him reined in and today was productive.

We have regressed heavily on potty training at home and out and about. He doesn't want to go. As I said a couple posts ago.. with family and friends, schedule changes and the Holidays... I don't think I will really push until January. I will be glad when the diaper chapter is over. He also is coughing this evening... hoping it's just drainage. Little guy hasn't ever really been sick.

Echo...ECho... Echo...

Okay... not funny. I know... It's still early to my brain.

We, Benji and I, are currently getting ready to go into Nashville.

Our first stop will be at Childrens Heart where we will see Dr. Hermo. This is Benji's six month echocardiogram. We got good news back in May, we are praying for even better news this go. He's been off of the propranolol since the May visit.

We are praying that Benji will be able to stay calm during the echo. With his Sensory Processing Disorder all the gel and the actual echo wand tickles him ALOT. It gets him worked up and he doesn't like to lay still for it.

The echo is at 10am.

After the echo we have Occupational Therapy at Bill Wilkerson. That appointment is at 1am. I am feeling sorry for Robyn. If Benji is predictable, he will be a handful for therapy.


Little man also has drainage and a cough. So... praying that clears up soon.

I will send an update as soon as I can!

So, Mom is thinking...

I was thinking about Benji's diagnosis' here lately. And it's not that I am worried, more so concerned and there is a difference. Something in my gut is telling me that we are missing something. Let me explain.

Benji was born and at about 18 hours we got the notion that something was wrong with his heart. The resident pediatrician at Baptist heard a murmur and was concerned. He wanted to have it checked immediately instead of waiting a few days. That led to the craziest week I think I have ever had in my life. Within 10 hours Benji had his first of many echos, the cardiologist discovered that Benji has a bicuspid aortic valve which resulted in the murmur. That in an of itself is not a red alert, people live their entire lives with the malformed valve and are okay. His has stenosis too so that gives him yellow to orange alert. It has to be monitored. The red alert was his aorta as it come out of the heart, he had what was called a CoArctation of the aorta. The aorta was too narrow to allow the blood to flow to the lower extremities. So at one week of age Benji had closed heart surgery. The surgery used a process of subclavian flap to fix the aorta. They also closed the patent ductus arterious. So... symptom one, Heart defects.

While he was in childrens it was suggested that he be monitored for hypotonia especially with his hips. His first pediatrician didn't think anything about it. But we got hooked up with Early Intervention and Foundations and they were concerned with it. Kept referring to him having low tone. I have just recently come to understand this. It doesn't mean that he's not strong. It means that neurologically the muscles aren't working the way they are suppose to. So.. symptom two, hypotonia.

Once Benji was home and settled, we noticed that if I nursed him after drinking milk or eating cheese, or ice cream little guy would get really bad gas and sometimes throw up. So we removed milk products from my diet and he did great. He nursed for 14 months after the doctors told me that he probably would have to be a bottle fed baby. But, he was definitely allergic to milk. So... symptom three, lactose & casein intolerant.

We also noticed Benji was particular about fabrics. He loves satin and smooth fabrics where the rough fabrics upset him. When he was little little he LOVED going to the store and such, you know when babies typically get overwhelmed? Now he gets overwhelmed... now that he is 3. A few months before his third birthday he was diagnosed with Sensory Integration Disorder and borderline PDD-NOS or Asperger's The problem there is that he matches AS except that he also has Speech Apraxia according to the SLP. So... SID, possible autism, and Speech Apraxia.

Then to make things fun last December we got the dx of ketotic hypoglycemia after he had a hypoglycemic seizure when his sugar dropped to 22. They at first thought that maybe his propranolol could have contributed to it but he's been off since May and over the summer we had two incidences where it dropped to the 60s after play outside in the heat.

And the last thing is he is flat footed and bow legged. LOL... seriously now... his ankles pronate and he is to wear inserts that help him ALOT.

Anyhow... my concern is with all of this going on with him and all the therapy he is getting, are we missing something? Is there a bigger dx that includes all of this? And no, he doesn't have Downs Syndrome and it's not Cerebal Palsy. My concern goes along the lines of it being something neurological. My dad has progressive super nuclear palsy (Parkinson's Plus), my great aunt had MS, and my grandmother has essential tremors.

Anyhow... I am going to get him back into the peds here within the month to push for neurological testing. I think that is the next best step. I know when we went through the genetic testing they had asked if neurology sent us to them.

Gotta go... gotta leave in 15 minutes...

Heart Month

It's that time of year again. You know all the Valentine Cards and candy and parties and such with school and Banquets at Church and all. Everybody is focusing on love.

Well, this is our third year that we have put aside February for Congenital Heart Defect Awareness. March 2, 2005 Benji was born with CoArctation of the Aorta and Bicuspid Aortic Valve with Stenosis. On top of that he had a patent ductus arteriosis. We had no idea that his heart was defective, and to this day we do not know why.

Benji had closed heart surgery on March 9, 2005 to repair the CoA and close the PDA. Dr. Carla Christian did the surgery using the subclavian flap plasty. He has thrived and as of November 2007 it was declared his aortic valve is stable.

Along with Benji's heart defects we also are dealing with speech apraxia, hypotonia in his ankles and feet, sensory integration issues, lactose intolerance, and good old fashioned stubbornness. LOL..

I hope to post daily in the month of February about CHD's in order to bring more awareness to Congenital Heart Defects. Do join and pass a link on to those that might be interested.