Zebras can be complex

 

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.

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.