2/21 Living with Ehler’s-Danlos is always an uphill battle, but they are determined to fight on. They have been waiting for a treatment plan for the failed shoulder procedure which revealed the scapular dyskinesia. This plan will likely require moving several hours away in order to live near a facility that can work with his condition. Unfortunately, this morning Thomas was sent back to the hospital with a collapsed knee. This will delay the ability to stabilize his right shoulder as he needs stability of his lower body first. Please continue to lift up this young couple in your prayers and share their story.
1/31 The infection cleared so there is no need for a skin graft! He is currently trying to allow his body some rest before making any other decisions going forward. He has been diagnosed with Scapular Dyskinesis which is basically a sick scapula. This is likely playing a role in the instability of the shoulder. Once again there are more questions than answers and prayers for guidance are always appreciated.
1/18 Unfortunately, Phase two did not bring the success we had hoped and prayed for. At the end of December, less than a month after the second phase of the treatment was completed, the supporting structures around the shoulder replacement failed. The new joint slipped and was pinned under the collar bone and remained in this position for several days. On January 1 it became necessary for Thomas to be admitted to the hospital for treatment while the surgeon put together a course of action. On January 8, Thomas underwent a resection of the shoulder (removal of the replacement joint). Thankfully, he was able to return home the next day, but the recovery is not going well. Thomas has been battling an infection at the site of the incision even with antibiotic treatments before and after the procedures. A skin graft may be necessary in the very near future. It is uncertain as to whether there are any other options for stability and function of the shoulder, but for now his body needs rest in order to recover.
Although this is very disappointing, Thomas and Chalie are determined to keep a ‘chin up’ and move forward with whatever God has in store for them.
With a new year comes a new medical deductible. We ask that you pray for this young couple, share their story and please consider making a donation.
12/5 The second, and hopefully final, phase has been completed! We arrived in Dallas yesterday for pre-op appointments. Thomas underwent the procedure just before noon and was in post-op by 2:30! The pain management has been more successful this time and the surgeon was pleased with the results of the first phase done in September. Only a partial replacement was needed, for which we are very thankful.
10/1 Phase one is complete. The recovery so far has had unexpected challenges and the first few days are the hardest but they are coping. He is being administered antibiotics for 6 weeks in order to prepare for the next phase. If all has gone well he will then have the reverse shoulder replacement.
9/26 Phase one of the procedures has begun. This will involve repairing tears, removal of the top portion of the shoulder and inserting a temporary spacer, installing a PICC line and anything else they deem necessary to repair. We continue to be encouraged through the prayers and generosity of friends, family as well as people we do not know. Thank you for continued prayers.
9/16 We are one week away from leaving for Dallas! God has been providing in ways we weren’t expecting. There are some tests being run this week and they will be meeting with the surgeon the day prior to the procedure. If all goes as planned, Thomas will be in the hospital for several days for post-op care before traveling back home.
9/8 Update:
We are thankful for the progress thus far. We know the Lord will provide just what we need, when we need it! Pre-registration has been completed and lodging plans are in place for the end of the month.
We continue to ask for your prayers in the days leading up to the first phase of his shoulder replacement. If you can, would you please help us spread the word.
Thomas suffers from a rare genetic condition known as hEDS (hypermobile Ehler’s-Danlos Syndrome).
Ehler’s-Danlos Syndrome is a connective tissue disorder. Hypermobile EDS is a disorder caused by defects in collagen or the inability of the body’s cells to absorb collagen. This affects the elasticity of the connective tissues. Think of an elastic waistband that stretches but doesn’t fully recover. Over time it becomes ‘stretched out’ and can’t hold the pants up anymore! It often causes chronic musculoskeletal (muscle and bone) pain. Although hypermobile EDS is considered a genetic condition, the cause is still unknown because they have yet to identify the gene that is responsible. Hypermobile Ehlers-Danlos syndrome – About the Disease – Genetic and Rare Diseases Information Center (nih.gov)
Thomas began displaying symptoms of loose joints at an early age. He was a very active child, loved outdoor activities and participated in soccer and basketball leagues, but rarely made it through a season without injury. He often complained of joint and muscle pain which we dismissed as ‘growing pains’. The first shoulder surgery took place when he was 14 years old. He recovered quickly and was back to normal activities. During the next basketball season, he began to suffer from frequent dislocations of the opposite shoulder which led to another surgical procedure. Over the next couple of years, each shoulder was worked on again in an attempt to ‘tighten’ the joint. It was during a physical therapy session, that the therapist mentioned the possibility of a Connective Tissue disorder. We took the information to the orthopedic surgeon but he denied the likelihood of such a condition, insisting that he would grow into his joints and his tendons would tighten up with age. Unfortunately, he was wrong. At 27 years of age, he now stands at 6′ 7″ and continues to experience difficulty with his shoulders and knees. Thomas has been most impacted in his knee and shoulder joints, but deals with subluxations in other joints as well.
Due to all of the repeated injuries, procedures, recovery times and limitations, he has only been able to work for short periods of time. The debt continues to mount with each surgery. Although he has a disability, he doesn’t qualify for SSDI because he hasn’t been able to contribute enough funds. He doesn’t qualify for unemployment because his reason for not working is related to his medical disability.
That brings us to the reason for this request: Thomas has numerous surgeries/procedures coming up on his shoulder, which has been subluxated for several months and is now affecting the nerves in that arm. The final outcome will be a shoulder replacement. It will be necessary to make two or three trips to the facility, which is nearly 700 miles away over the next few months. This will require even more funds for travel and lodging, as well as out-of-pocket expenses in relation to each procedure.
God has provided much through the generosity of friends and family over the years, and we know He will continue to do so, but maybe it will come through the giving of people we don’t even know. We would like to thank everyone who feels led to help us with these medical expenses and ask that you share the story with others.