Help Us Help Sarah Hoder
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We are Stephen & Cathy Hoder. We have three children: two sons in their 20’s, who are married and our sweet girl, Sarah, who is 25, and our middle child. She is funny and sassy and has always marched to her own drum.
When Sarah was 13 she was diagnosed with Wegener’s Granulomatosis (a.k.a. GPA). It is an autoimmune disease where the immune system overreacts when there is an infection and sometimes attacks the body when there is no infection. For most of her life she managed it and lived a normal life with multiple doctor visits every 3 months and multiple medications/infusions. She was slowly progressing to more powerful drugs when in 2015 she lost hearing in her right ear due to too many ear infections.
The summer of 2016, she was 22, enjoying her photography business (portraits and weddings), working in a daycare (she loves kids), and starting classes for an Early Childhood Education degree. In September 2016. she complained about her hearing getting muddy (like a really bad cold) with no relief from over the counter medications. Her ENT felt it was a Wegener’s flareup attacking her hearing. After 2 steroid injections directly in her ear (ouch!), 3 high dose steroid infusions, and a chemo infusion, she started going downhill.
Sarah ended up losing her hearing and suffered from side effects from the steroids (no longer able to stand, easily irritable, confusion, and saying/doing things she wouldn’t normally). We brought her to UCONN ER where her tumble downhill increased. Chorea movements started where her arms and legs started swinging around on their own. She said “Mom, Dad, what’s happening? I can’t stop it.”
During the weeks of testing and multiple doctors scratching their heads, she got worse and worse: inflammation in her brain increasing, totally losing her hearing, unable to speak, stand, or feed herself. She had a blood clot running up 75% of her right leg so an IVC filter was implanted. The doctors at UCONN eventually said that they didn’t know what was wrong and wanted to do a brain biopsy.
We said we wanted a second opinion and brought Sarah to Yale for more tests, MRIs, EEGs, x-rays, CAT scans. The Drs said we need to do a brain biopsy, so we agreed with concern. They started treating Sarah with IVIG every 3 weeks which helped reduce the inflammation. In November 2016, she got a large subdermal hematoma (brain clot) on the left side of her head. It was easily removed but not before it did some damage. The chorea movements reduced to seizer like twitching. As she was improving medically, she was receiving therapy. She was starting to use her hands, arms, and sit up on the side of the bed (with some help). In December she was medically stable enough where she was transferred to The Hospital for Special Care.
At The Hospital for Special Care, Sarah received PT, OT, and speech therapy. In January 2017, she was able to use bike pedals with her hand. :-) As she was getting consistent therapy, she showed improvements, albeit slowly. Then Sarah had trouble breathing, went to the ER, they panicked (in my opinion), and put in a trach tube. She ended up being at Yale for a few weeks with bronchitis. When she returned to HSC, she had regressed with her therapy progress. This happened a few times as she got bronchitis again and pneumonia. During 2018 she started sleeping a lot. We think it was due to medication side effects. During this time her therapy went down to almost zero except for what we could do for her and occasional OT and speech. PT gave up mid 2017.
In February 2018, we found out that we could bring her home through the program Money Follows the Person. It took 6 months to get approval for nursing care at home after a bit of back and forth over how many hours she needed. Then it took 5 months to get approval for a grant to update the house for Sarah’s needs and choose a contractor. After another 3.5 months for the contractor to start and complete the work, Sarah finally came home on April 15th of this year. A 14 month long frustrating process.
Sarah has been through a lot and has had to deal with many painful things, including Drs and therapists who told us, sometimes in front of her that she would not get better. But she didn’t give up and neither have we, and she is improving today (albeit slowly).
Now that Sarah’s home, she is visibly happier, she is getting PT, OT, and speech therapy a total of 5 times a week (more than she ever got before) and she is showing gradual improvement in all areas. :-) She is relaxing out of muscle spasms, intentionally moving her hands and arms, using switches and basic eye gazing to answer questions. This success has come with a hefty price tag for uncovered equipment and doctor visits. It is all worth it. Sarah is improving.
Sarah has gotten new therapy prism glasses that help focus her eyes and help her to move better. It has been a very expensive 3 months, some big expenses have included, eyeglasses- ($3,100), equipment-($2,500), wheelchair van-($3,500), etc. We are also saving for a generator ($12,000) to power Sarah’s equipment in case of a power failure. If we lose power, she would have to go to the ER and stay there until power came back.
We have resisted starting a GoFundMe, but others have encouraged us to do it since expenses have gotten very high and we're having difficulty paying the bills. If you feel lead to donate, God Bless! Thank you for all of your prayers for Sarah. We are believing she will improve! God has blessed Sarah and us through all of this. Thank you for all your help. Any mailed donations, please send to The Hoders, 53 Tunxis Path, Plantsville, CT 06479.
When Sarah was 13 she was diagnosed with Wegener’s Granulomatosis (a.k.a. GPA). It is an autoimmune disease where the immune system overreacts when there is an infection and sometimes attacks the body when there is no infection. For most of her life she managed it and lived a normal life with multiple doctor visits every 3 months and multiple medications/infusions. She was slowly progressing to more powerful drugs when in 2015 she lost hearing in her right ear due to too many ear infections.
The summer of 2016, she was 22, enjoying her photography business (portraits and weddings), working in a daycare (she loves kids), and starting classes for an Early Childhood Education degree. In September 2016. she complained about her hearing getting muddy (like a really bad cold) with no relief from over the counter medications. Her ENT felt it was a Wegener’s flareup attacking her hearing. After 2 steroid injections directly in her ear (ouch!), 3 high dose steroid infusions, and a chemo infusion, she started going downhill.
Sarah ended up losing her hearing and suffered from side effects from the steroids (no longer able to stand, easily irritable, confusion, and saying/doing things she wouldn’t normally). We brought her to UCONN ER where her tumble downhill increased. Chorea movements started where her arms and legs started swinging around on their own. She said “Mom, Dad, what’s happening? I can’t stop it.”
During the weeks of testing and multiple doctors scratching their heads, she got worse and worse: inflammation in her brain increasing, totally losing her hearing, unable to speak, stand, or feed herself. She had a blood clot running up 75% of her right leg so an IVC filter was implanted. The doctors at UCONN eventually said that they didn’t know what was wrong and wanted to do a brain biopsy.
We said we wanted a second opinion and brought Sarah to Yale for more tests, MRIs, EEGs, x-rays, CAT scans. The Drs said we need to do a brain biopsy, so we agreed with concern. They started treating Sarah with IVIG every 3 weeks which helped reduce the inflammation. In November 2016, she got a large subdermal hematoma (brain clot) on the left side of her head. It was easily removed but not before it did some damage. The chorea movements reduced to seizer like twitching. As she was improving medically, she was receiving therapy. She was starting to use her hands, arms, and sit up on the side of the bed (with some help). In December she was medically stable enough where she was transferred to The Hospital for Special Care.
At The Hospital for Special Care, Sarah received PT, OT, and speech therapy. In January 2017, she was able to use bike pedals with her hand. :-) As she was getting consistent therapy, she showed improvements, albeit slowly. Then Sarah had trouble breathing, went to the ER, they panicked (in my opinion), and put in a trach tube. She ended up being at Yale for a few weeks with bronchitis. When she returned to HSC, she had regressed with her therapy progress. This happened a few times as she got bronchitis again and pneumonia. During 2018 she started sleeping a lot. We think it was due to medication side effects. During this time her therapy went down to almost zero except for what we could do for her and occasional OT and speech. PT gave up mid 2017.
In February 2018, we found out that we could bring her home through the program Money Follows the Person. It took 6 months to get approval for nursing care at home after a bit of back and forth over how many hours she needed. Then it took 5 months to get approval for a grant to update the house for Sarah’s needs and choose a contractor. After another 3.5 months for the contractor to start and complete the work, Sarah finally came home on April 15th of this year. A 14 month long frustrating process.
Sarah has been through a lot and has had to deal with many painful things, including Drs and therapists who told us, sometimes in front of her that she would not get better. But she didn’t give up and neither have we, and she is improving today (albeit slowly).
Now that Sarah’s home, she is visibly happier, she is getting PT, OT, and speech therapy a total of 5 times a week (more than she ever got before) and she is showing gradual improvement in all areas. :-) She is relaxing out of muscle spasms, intentionally moving her hands and arms, using switches and basic eye gazing to answer questions. This success has come with a hefty price tag for uncovered equipment and doctor visits. It is all worth it. Sarah is improving.
Sarah has gotten new therapy prism glasses that help focus her eyes and help her to move better. It has been a very expensive 3 months, some big expenses have included, eyeglasses- ($3,100), equipment-($2,500), wheelchair van-($3,500), etc. We are also saving for a generator ($12,000) to power Sarah’s equipment in case of a power failure. If we lose power, she would have to go to the ER and stay there until power came back.
We have resisted starting a GoFundMe, but others have encouraged us to do it since expenses have gotten very high and we're having difficulty paying the bills. If you feel lead to donate, God Bless! Thank you for all of your prayers for Sarah. We are believing she will improve! God has blessed Sarah and us through all of this. Thank you for all your help. Any mailed donations, please send to The Hoders, 53 Tunxis Path, Plantsville, CT 06479.
Organizer
Cathy Hoder
Organizer
Plantsville, CT
