The Journey has Changed

As I mentioned in 2018, no updates on the blog is a good thing.  It means we are living life without any major interruptions in Thomas' medical journey.    If you follow Thomas ~ A Journey for Rare Syndromes  on Facebook, you know that our journey has changed quite a bit but I wanted to share in more detail as I always have here on our blog.

Over the last year, maybe year and a half, Thomas' pain has increased from an occasional hurt now and then depending on activity level or movement, to a constant level of pain daily that increases for those same reasons.  It has been quite gradual and we have tried to change different things in his regular routine, met and worked with the school trying to provide more suitable options, etc.  On top of that add some social issues of threats and bullying.  We had a world wind of a year that was not only physical but emotional for Thomas as well.  Thomas also had a significant increase in urination frequency that was alarming.  It started in September and have not seen any relief, but have noticed certain patterns.  Due to these issues we were seen by his pediatrician and am MRI was ordered by his Nuerosurgeon.

We had an appointment with the Orthopedic Surgeon the end of February and he was concerned about what he saw on the x-rays in regards to Thomas' mid/lower back.  This area has hemi vertebrae, scoliosis and kyphosis.  We discussed him starting physical therapy to work on relieving his pain and providing stability to the area.  As instructed we got him evaluated for PT but then coronavirus hit.  So, we got the evaluation and then never heard back from the PT clinic we went too as everything was shut down and we were quarantined at home.  The MRI was also pushed back due to the shutdown.

The blessing of being home is Thomas did find some relief from the severe back pain from not being at school.  At home he has a desk that fits and supports him properly, the school does not have that.  He also did not have to carry a bookbag around, etc.  We learned that the strains of normal daily activity at school was contributing to his pain.  

Fast forward to May, we started Thomas in physical therapy and have been going three times a week.  The goal is to strengthen his core muscles without agitating his back, strength his ankles, calves, hamstrings to increase strength and balance to provide more stability.  Thomas has worked really hard and tries at every session.  It's not easy at all and there are some sessions that has really increased his pain level.  But to us, it is all data.  The more we learn the more we can address the issues.  We also learned about wet heat and how good it is to relieve his pain.  As seen here, Thomas is able to get wet heat at PT that really helps relieve his pain for a long period of time.  

Thomas also had a check up with his cardiologists, he was born with a heart murmur and it had to be checked and cleared before the MRI.  So, we were able to get that done and all was good.  It is still considered a benign, innocent murmur.

Finally, we got the MRI after rescheduling twice.  Once for the coronovirus shutdown and the second time because Thomas broke out in hives from the steroids he was on for the poison ivy.  Fun stuff!

We finally were able to get the MRI completed on Friday, May 21st through Day Surgery at CHOA.  Due to him needing to be sedated and the complications his neck provides for incubation, they felt more comfortable at Day Surgery.  They were absolutely wonderful with him and although it was not something he was happy about, I think we made it through with mild trauma for him.

The neurosurgeon has reviewed the results and shared that the spinal cord is in tact and is not causing the current issues, which is a huge releif.


Our last appointment was on Tuesday with the Shriners Hospital in Greenville, SC.  Thomas went to the Shriner's hospital in 2012, when we were at the beginning phases of Thomas' journey.  They are extremely knowledgeable and thorough when it comes to kids with bones anomalies, pain, etc.   Thomas is sponsored by a local Shriner here in McDonough who is always loving and encouraging to Thomas and our family.    Thomas was seen by the doctor who in 2014 became one of the first surgeons in the nation to use the Magnetic Expansion Control (MAGEC) spinal bracing and distraction system to benefit scoliosis patients. He has special interest in spine deformities includes scoliosis, as well as spondylolisthesis, congenital scoliosis and kyphosis.  He took his time with Thomas and really reviewed where we were and where we are.  He stated that based on the slow change in Thomas' curvature that he wouldn't go in an perform surgery at this time.  From 2012 to 2020, we have seen an increase from 22.4 degrees to 34.6 degrees.  He did state that we should continue with the physical therapy for strength and stability purposes. 

 Unfortunately, we were unable to deliver him the scans from the MRI so he was unable to address the situation at the site of kyphosis.  He did mention that based on the reports of the findings from the MRI that there could be an additional source of pain being generated at that site and could also be causing urination problems depending on the nerves that are being compromised.  He did want us to share follow up xrays and the MRI imaging with him and return in six months.  He also suggested we move on to a urologists for additional testing.
The Shriner Hospital was amazing to both of us and we definitely feel more confident and more informed in where we are and what we can actively be doing to help Thomas.  They also gave him this super soccer ball which helped distract him and entertain during our wait times.

We have our follow up appointment with our Orthopedic Surgeon here in Atlanta on Tuesday, June 30th.  We should know more definite, the results of the MRI and how we will proceed.  We are also going to fight the insurance company to keep him in physical therapy for as much as he needs and will work with his urologists to determine if there is anything going on specifically with his bladder or kidneys.

One last thing I did want to mention, Thomas is in counseling to work through his medical trauma, bullying, etc.  We understand and recognize the importance of mental health and know that this is a long journey for our sweet boy.  We want him to have the skills to be able to handle this the best way possible and through it all find joy and happiness throughout all of his life!

A fun fact, during quarantine Thomas started raising chickens.  He has two bantam Silkies, named Roodle and Noodle. 

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. " Romans 15:13