Josh’s Story

Site created on July 15, 2022


All of his life, Josh has known he has HHT (Hereditary Hemorrhagic Telangiectasia) a blood vessel disease. It runs in his family and they affectionately refer to it as "the bloody nose disease". When Madalinn (our daughter) was diagnosed with Pulmonary Hypertension she was tested for the genes that cause HHT and was positive for ACRLV1.  It has been determined that that gene is what caused her PH because of disease in her pulmonary arteries.  


Once she tested positive, Josh and our two sons were also tested and found positive for ACRLV1.  With HHT it is highly recommended to have a brain MRI, lung scans, and blood work to check the liver so they can find any malformed vessels (AVMs) that may need fixed to prevent future problems.  In April Josh and the boys went to Cincinnati to have all the recommended scans done. 


After the scans on April 29th in Cincinnati, the neurologist met with us and told us that Josh has a large AVM in the left frontal lobe of his brain.  It measures 7cm x 4.9cm x 4.5cm, the size of a clementine.  We were told his was born with it and that it is amazing that he has lived with no symptoms for 40 years.  If left untreated Josh would have an 80% chance of stoke in his life.  So, we found a vascular neurosurgeon at Ohio State University Hospital who felt confident that he could do multistep procedures to get rid of this AVM.  


On July 14 we went in for Josh's first procedure.  It went well and the doctor came out and told us he was about to shrink the AVM by 30% and Josh was recovering well.  However, not too much later everything changed.  The AVM began to bleed and Josh suffered from an inter cranial hemorrhage (AKA Stroke).  He became unresponsive.  At the start of keeping this journal of updates he is in the Critical Care Unit in a coma.  One doctor said, "this is very critical, but not without hope."  We know that's right!  Jesus Christ is our Hope!  


We know that thousands of you are praying and we are so very grateful!  Thank you for loving and caring for our family in yet another health crisis this year.

Newest Update

Journal entry by Chloe Glenn

Josh and I will be celebrating our 20 year anniversary in May.  Sometime last year Josh started to ask about our plans for a trip to celebrate.  He has always (before brain hemorrhage) talked about wanting to go back to our favorite vacation spot in Key West for our 20th.  Unfortunately, Josh can't do many of the things we loved most about the trip like bike riding and snorkeling.  Instead I planned a cruise to the Bahamas for the beginning of April.

We had a wonderful time, just the two of us.  Everything went very smoothly and it felt like God orchestrated many of the details.  Because of Josh's fatigue we spent a lot of time in our cabin.  I was thankful that I had the foresight to get a room with a balcony.  The morning we arrived at the Bahamas I opened the curtains and saw the most beautiful view of blue green water, crashing waves, and palm trees.  I sat on the balcony most of the day with a book!  We played putt-putt, went to two shows, enjoyed formal dinners, took naps, and read books!  It was a wonderful time of connection and relaxation.  

Update on Josh:
Today we went to Vision Therapy after a 5 week break.  Josh's therapist noticed huge improvements and was so pleased with his progress.  During his last visit before break they made a small change to the prism strength in his glasses.  This change has made a huge difference!  Josh prefers to wear his glasses all the time now because they help so much.  The glasses help his eyes work together and his brain is able to make since of what he's seeing much easier.  Because his brain doesn't have to put so much energy into his vision, it has more energy to put to other things like his memory.  

We have seen improvements in his short term memory, increased capacity to think about things, and more robust conversations with people.  
He still really struggles with expressing his thoughts.  Today we spent over a half hour trying to figure out what restaurant he was wanting to eat at after therapy.  He kept saying "it has crab and sea food."  After lots of guessing, questions, and conversation I figured out he was wanting to eat Orange Chicken at Panda Express.  
Often when asked what he's been up to, he responds with, "work."  He is implying working a job, but in reality he's doing the work of recovery and healing.  He's not always able to respond appropriately in conversations but he is really trying hard to connect with others.

Tonight at kickball he decided to participate in the kicking lineup.  He gave a strong kick (similar to my kicks) and jog-walked to the base.  He kept commenting about how "pathetic" he was doing, but everyone was cheering him on and I think he was actually enjoying it.  One of our friends said to me, "boy!  I think he needs to go on vacation more often because he has made so much progress!"  

Next steps:
- He will continue vision therapy once a week.  Today we set new goals to work on. (Mental Flexibility, Vestibular Ocular Reflex, Reading)
- We are trying to find ways to build his confidence in doing things.  He often says, "I'm not ready for that yet." or "I need to heal up first before I can do that."  

Ways to Pray:
- Pray that God will create streams of water through the dry, desert parts of his brain (new neuro pathways)
- Pray for confidence and willingness to try "new" things
- Pray for energy to increase and fatigue to decrease
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