September 10, 2024
FIRST FULL WEEK BACK AT HOME :)
Good Morning Friends and Family,
Today marks a full week since Harmony returned home from the Shepherd Center for the second time, and it’s been a week filled with joy, emotion, and reflection. One of the most touching changes has been in our girls, Maya and Riley. While I knew they missed their mom, I hadn’t realized how deeply they were affected. Since Harmony’s return, their smiles, laughter, and overall happiness have been a powerful reminder of how much we all need her presence at home.
Though we are incredibly grateful to have Harmony back, this week has been a rollercoaster of emotions. The modifications to our home, made possible by your generous donations, were a heartwarming surprise for her, especially the remodel of the main floor bathroom. Harmony shed tears of joy during her first shower, as it was the first time in over four months she could roll in easily and enjoy a warm, comforting shower. It was a truly special moment, and none of this would have been possible without your kindness and support (see attached pic). A huge thank you also goes to my coworkers and friends who donated their leave, allowing me more time at home to complete modifications and to care for Harmony and our family without having to also worry about work during this very difficult time.
As we settle in, we’ve realized there’s still a lot more to do. To help Harmony live a more comfortable, happy, and independent life, we need to widen several doorways, remove the carpet, and install new flooring in the formal living and dining rooms to create better accessibility. We’re also working with contractors to get quotes for building a decent sized patio/deck ramp at the front entrance. Currently, Harmony can only access the house through the garage ramp, which was kindly built and installed by close friends.
We’ve also discovered that our kitchen, in its current setup, won’t allow Harmony to easily engage in the homemaking and motherly duties she is so eager to return to. More pressing is the need for a stairlift so Harmony can access the second floor, where the girls’ rooms are. Recently, Riley told Harmony "how much she misses her tucking her in at night and their special chats before bed." When I tucked in Maya last night, she also mentioned how much she "misses Mommy’s bedtime hugs and kisses." It’s heartbreaking for Harmony to hear, and we’re making it a priority to get quotes for a stairlift, though it’s a costly project due to the design of our stairs.
Harmony is making excellent progress with transferring between her bed, wheelchair, couch, and even her Jeep. However, because the Jeep is so high off the ground, it’s exhausting for her to manage these transfers for every appointment or outing. This weekend, Harmony will attend her first Camp Creek Elementary football game since her injury, to cheer on Riley, our rapidly growing 5th-grade cheerleader! This brings up another significant need—a more accessible vehicle. We plan to lease or purchase a van equipped for easy wheelchair access, which will also allow Harmony to learn to drive using hand controls. With our Jeep lease expiring in February, we aim to secure an accessible vehicle by then.
We are beyond proud of Harmony’s progress and continue to be inspired by her resilience and optimism. We’ll share another update in about a week. In the meantime, we ask for your continued prayers, thoughts, and support. Please keep spreading the word about our fundraiser—we couldn’t do this without all of you.
Fundraiser link: https://helphopelive.org/campaign/24108/
Warmest regards,
August 30, 2024
Harmony's Recovery Update #25 - Returning Home Soon!
Hello, everyone! We wanted to share an update on Harmony’s journey as she continues to recover from her second spinal stroke. It has been a whirlwind of emotions, especially with Harmony returning to the Shepherd Center (SC) for a second time. She’s been there for 19 days now after spending 13 days at Gwinnett Northside Hospital. This time around, the stroke has been even more challenging, largely due to the severe pain, which she describes as feeling like "razor blades raining down on her legs and back." :( We were thrilled to have her back home for a bit (6 days), even though we had to isolate due to COVID. But, unfortunately, her time at home was brief.
A lot has happened since Harmony has been away again. The girls have started school, and Harmony was unable to attend "meet the teacher" and the girls' first day of 3rd and 5th grade. Riley’s cheerleading season is also in full swing. For those who know Harmony, you know how much she loves supporting Riley at her cheer events, being a former cheerleader herself. So far, Harmony has missed the cheer showcase and Riley’s first two football games. My parents and I have been there to support and cheer the girls on, taking lots of pictures and videos to share with Harmony so she doesn’t feel left out and, we all attend church as a family with Harmony at the Shepherd Center every Sunday. We love and cherish these Sunday visits, as it gives us time to catch up and pray together.
When Harmony was home, we quickly realized that the setup of our main floor bathroom wasn’t accessible enough for her to use comfortably, even after widening the door. I promised Harmony that I would make this a priority and ensure the bathroom is remodeled for her return. I'm happy to report that we found an amazing contractor who understood the urgency. He completed the demolition and accessibility remodeling just yesterday, and Harmony is going to love the results. While the contractor worked on the bathroom, I focused on our back deck, replacing boards, power washing, and re-staining/painting it. This will give her more outdoor space to relax, especially since she can't access the upstairs or the basement right now. None of these improvements would have been possible without the generous help and donations from friends, family, and coworkers through the Help Hope Live and GoFundMe pages. Thank you all so much!
There's still a lot more to do. We need to make the kitchen more accessible, install a stair lift so Harmony can get to the second floor where our daughters’ rooms are, and build a front entrance deck and ramp. Accessible transportation is another big concern. We've raised a good amount so far, but not nearly enough for everything Harmony needs to thrive when she comes home. Donations have started to slow, and we're working with Help Hope Live to brainstorm new fundraising ideas. Unfortunately, we were recently notified that insurance has denied Harmony’s request/prescription for a power wheelchair, which could cost upwards of $25,000. We're working with our SC caseworker and the doctors and therapists at Shepherd to appeal this decision. As things stand, Harmony may have to return home in a manual wheelchair until we find a solution. Given her various autoimmune conditions and the muscle weakness caused by the treatment of these diseases with long-term steroid use, a power wheelchair is essential for her mobility and safety.
Despite these challenges, Harmony has been working incredibly hard, making great strides in her therapy. I’ve seen so much progress in her daily living activities, especially with her transfers and growing independence. Her schedule at the SC is packed with therapy, classes, and outings from 8 a.m. to 4 p.m. most days. I spend my days at home taking care of household tasks/preparation, making phone calls, and advocating for her care, and then I visit her in the evenings, while my parents care for our children so Harmony and I can catch up and spend time together. Harmony’s doing so well that we even managed our first independent outing to Home Depot to pick out fixtures for her new bathroom. It wasn’t easy, but it gave us a glimpse of what life will be like when she comes home, and I know things will get easier with time and practice.
Our hearts are full of mixed emotions as we look forward to Harmony’s tentative discharge from the Shepherd Center next week. While we are excited to have her home, there’s also anxiety about adjusting from the 24/7 care she’s had at the Shepherd Center to managing at home. We still have a lot to figure out, including transportation to and from outpatient therapy and scheduling numerous follow-up appointments with her doctors but we are making progress.
Thank you all for your continued love, support, and prayers. We couldn’t do this without you! Please continue to keep us in your thoughts and prayers, and spread the word about our fundraising efforts.
August 12, 2024
Shepherd Center Round 2
Good evening family and friends,
I will post a more detailed update when time allows.
Harmony has been at Gwinnett Northside Hospital for 12 days and will be transferred back to the Shepherd Center tomorrow, Monday August 12th, 2024 for another acute inpatient rehabilitation stay. The neurologists at Gwinnett Northside confirmed that Harmony had a 2nd spinal stroke on July 30th when I initially brought her back to the hospital. After 4 MRI's, a spinal tap, MRA and numerous blood tests the doctor's still don't have a clear answer on why this very rare spinal infarction has happened again, which means they don't know how to prevent it from happening again. The only treatment plan at this point is for her to return to acute inpatient rehabilitation, while we await some more test results and rely upon the doctors/neurologists at the Shepherd Center to investigate further. To add insult to injury, maya has not been feeling well and recently tested positive for COVID, which complicates things further. Hopefully, she has a mild case as Harmony and I did a few weeks ago and she recovers quickly.
Harmony and I feel blessed that the Shepherd Center has accepted her because it truly is a special place and we know how hard it is to get in to. Our faith remains strong that this will get better but there is still so much to do, and to figure out.
The Perez household has had a very rough time since this all began back in April, but we will get through this with our faith in God and the help of our family and friends. Please continue to keep us in your thoughts and prayers and I will continue to keep you all updated through this platform. Please also continue to spread the word about our fundraiser so that we can provide Harmony all of the equipment, modifications and comfort she deserves. Harmony remains strong and hopeful throughout this all.
If any of you live nearby please feel free to pay her a visit. She needs all of the support she can get and it provides me a chance to spend time with our girls and work on getting the house ready for her return once again. If you have trouble reaching her, please feel free to reach out to me to arrange visits.
Thank you
August 3, 2024
The Test(s) Continues…..Urgent Update! Spinal Stroke #2 :(
As you all may remember from my last post, Harmony came home from the Shepherd Center on Tuesday, July 23rd. On Wednesday, July 24th, Harmony and I felt ill, and both tested positive for COVID, which meant we spent her 1st 5-6 days at home in our “relocated” bedroom on the main floor in “isolation” from our kids and my parents. We had been waiting patiently for the moment we would all be together at HOME. We had that moment (Praise God!), the day she came home, with lots of love and hugs and kisses and hope, and the eagerness of us all to embark on the journey ahead and conquer these new challenges. These initial moments were so joyous; however, they were cut short. We didn’t let this keep us feeling down for long, as we continued to take things day by day and celebrate every success, no matter how small. My parents continued to take care of, and keep the kids busy/happy, while preparing meals and providing us anything we needed, from a short/safe distance away…. the kitchen where they donned masks and gloves, as did I, whenever I left the room, in order to prevent anyone else getting sick. My sister, who lives in Tampa even sent a “care package” of goodies for the kids, our favorite snacks, and over the counter medicine, and items to help with our symptoms. We were just starting to feel better and looking forward to ending isolation and re-uniting fully with our family.
On July 30th, Tuesday at 5am, I woke up to hearing Harmony calling my name from the bed next to mine for help because she was in pain. She was tossing and turning her whole body by moving her legs with her arms because she was so uncomfortable. I tried re-positioning her and even helped her get into her wheelchair so we could try sitting on the couch to see if that would alleviate her pain. Instead, her pain got worse, so I helped her return to the bed, I woke my parents and decided to call 911. Harmony has an extremely high threshold for pain, so I knew something was really wrong for her to be continually crying and moaning like she was. We even tried an additional dose of her nerve pain meds prescribed to her, but nothing helped.
The Fire Department arrived first and EMS shortly after. They could see Harmony was in distress and I had given them the whole sequence of events, since this all started back in April. They quickly loaded Harmony into the ambulance while I gathered our things, as well as her wheelchair and prepared to hop in the Jeep to follow her in the ambulance. We debated back and forth on where they could and couldn’t take her, because initially they wanted to take her to Piedmont Eastside due to it being the closest and they had to stay IN the COUNTY (Gwinnett). We had such a bad experience at Piedmont Eastside back in April, that we insisted she be taken further to Gwinnett Northside in Lawrenceville.
We arrived at Gwinnett Northside shortly after 7am and Harmony was taken straight back to a room where they treated her pain the best they could and conducted multiple MRI tests to find out the cause. Late on the day of our arrival we still had not received the reports from radiology but the hospitalist on staff was concerned, so he admitted Harmony to the hospital, however there were no beds available on the “Neuro” floor where she needed to be evaluated further. Harmony remained in the ER for 3 days until a room finally became available late last night. I stayed with her as often as I could to advocate for her and keep her company, however during this time we also had “meet the teacher” at school and Riley had her “Cheer showcase”, so I ran back and forth to try and keep some kind of normalcy and parental support for our girls. Harmony was very disappointed that she could not attend either and that she was in the hospital yet again Despite all of this, we continued to try and look on “the bright side of things”. Maybe there was something all of the other hospitals and doctors missed that could make this better? How could it hurt to have more eyes and brains trying to help Harmony?
This morning, I had breakfast with the kids and my parents, we talked about the plans for the day, and I left to go spend some time with Harmony and hopefully talk to the doctors as they do their rounds. We 1st met with the hospitalist who showed us the MRI images and explained that there were some areas to be concerned about and that the neurologist would be in shortly to explain it all. At this point, Harmony was still in pretty bad pain, with few periods of relief between the time she arrived in the ER to finally getting a room on the Neuro floor. The hospitalist made some adjustments to Harmony’s meds which seemed to work well for the rest of the day as long as they stayed on top of it, and administered her meds every 2 hours, on the dot.
The neurologist came in to see us about 20 mins later and confirmed that Harmony had a 2nd Spinal Stroke, except this time it was in the lower thoracic part of her spine around vertebrae T10. The doctor explained that she did not know what caused it but that her focus would be on identifying why this is happening and preventing it from happening again. She also ordered more tests, like a lumbar puncture/spinal tap to check for inflammation of her spine, as well as another type of MRI that will inspect the veins and nerves, in-and-around her spine to see if they can identify any issues there. This was news we were not expecting to hear, and it scares the daylight out of us!
As a result of this 2nd spinal stroke and Harmony being in bed, for the most part, since leaving the Shepherd Center, she has gotten weaker, and today, she was unable to perform an independent board transfer from her hospital bed to the reclining chair in her hospital room as she was able to do the day she discharged from the Shepherd Center. Gwinnett Northside PT/OT staff assisted Harmony with the transfer and recommended she return to an inpatient acute rehab, once the doctors finish their tests, figure things out, and we eventually discharge from here. Immediately after they made the recommendation, we asked that they send the referral for Harmony to return to the Shepherd Center since we loved that facility so much. I also immediately reached out to Harmony’s care team at Shepherd to alert them and ask them if they will have her back if necessary. I received no promises, however I received some good feedback from them and a very good feeling that they will take her back, if her condition warrants it, upon discharge from Gwinnett Northside.
I stayed with Harmony for the rest of the day/evening before returning home to take Skye for a walk, write this update, and get some rest before returning to the hospital tomorrow. Maya is going to accompany me tomorrow, so she can spend some time with Mommy and brighten up her day. The next step is the lumbar puncture/spinal tap which may occur tomorrow or Monday depending on the radiologist’s hours of operation.
Throughout all of this we have had some weak moments, but our faith remains strong, and Harmony continues to fight and keep a positive attitude. She is the most resilient, bravest, strongest person I know, and she continues to show these qualities every day!
That’s all I’ve got in me to write today, and we ask that you please continue to keep us in your thoughts and prayers. Please also continue to spread the word about what we are going through and our fundraiser website: https://helphopelive.org/campaign/24108/
When we get through this, we will have the strongest family ever! Nothing will be able to get in our way or stop us! God Bless!
July 31, 2024
Hello friends and family,
I wish I had good news about how things are going at home but around 5am this morning I woke up to Harmony crying in agonizing nerve pain in her legs and could not do anything to help her (I tried!) but call an ambulance and have her taken to Gwinnett Northside Hospital in Lawrenceville. We arrived around 7am and they took her and I back to a room in the the ER immediately. They have been administering meds to help her with this agonizing pain while we wait for her MRI results to be read. At around 11pm they advised us that she will be admitted, however we are still waiting on a room on the neuro floor. The only good news I have at this point is that her COVID symptoms are over and this hospital visit seems to be unrelated.
We are hoping and praying for answers and relief from all she has been through in the past 3+ months. She has only been home for 6 days after being discharged from the Shepherd Center, and more than half of that time, her and I have spent in isolation in our own home unable to hug, kiss and spend time with our girls and my parents.
Dear God please make this all go away! I know you are capable of miracles and we really need relief so that we can continue living happy lives with our family. Family and friends please continue praying for us. We will get through this!!!!
July 27, 2024
We have been so busy preparing for Harmony's return home that I didn't have a chance to post Harmony's graduation ceremony from inpatient rehabilitation at the Shepherd Center, which took place on July 23rd, 2024.
My parents, the girls, and I are so proud of her and how far she has come despite all of the challenges she faced throughout her stay. The Shepherd Center Atlanta is a special place and we feel blessed that Harmony was able to complete her inpatient rehabilitation, and are so thankful for the loving and caring staff, as well as her fellow patients/friends she made while there. Enjoy the video below!
July 24, 2024
Hello Family and Friends, I will post some more pics and updates soon. Things have been very hectic and overwhelming and we are still taking things day by day. Harmony was discharged from the Shepherd Center yesterday and returned home, however this afternoon she tested positive for COVID :(
The Perez household is doing our best to take care of Harmony and stay healthy. I don't know what God has in store for us, but this sure has been difficult and doesn't seem to be getting easier. :( Please continue to pray and keep us in your thoughts.
July 11, 2024
Update #20: July 3rd - 10th, 2024 - Preparations for Harmony's Return Home Begin
Dear Friends and Family,
I know I promised everyone an update over the weekend, however I just haven’t had the time to sit down and capture all that has gone on since my last post.
Maya’s B-Day and the “I-Can Studio":
With the help of friends and family, we were able to successfully host Maya’s surprise 8th birthday party at the Shepherd Center, which was a wonderful and joyful moment for our family. Harmony and I also spent quality time together in the Shepherd Center’s (SC) I-Can Studio, practicing what we have learned, and what life will be like at home, post-discharge. I am so grateful that the SC offers the I-Can Studio, because it really gives patients and their caregivers a snapshot of what life at home will be like before they are discharged.
July 4th Week:
After our experience in the I-Can studio, it became apparent that I needed to shift my focus on preparing our home for Harmony’s return, however, with it being July 4th week, it made it difficult to make any significant progress.
This year, the holiday felt very different without Harmony at home, but we made the best of it. Harmony was able to have the true ATLANTA experience, waking up early (5:30am) with her friends at the Shepherd Center to attend the 55th annual Peachtree Road Race to cheer on the wheelchair competitors, as well as the runners who came afterwards. The Peachtree Road race is a 6.2-mile race that happens every year on July 4th for the past 55 years. This year there were approximately 50,000 participants even though it was extremely hot and humid outside with heat index levels reaching 105 – 108 degrees!
Harmony and her friends had a great time at the event, returned to their rooms for some rest and recuperation, before they all decided to head up to the roof-top parking lot to see the various fireworks going on around the Buckhead and Atlanta area.
Although the kids and I missed spending the 4th and watching fireworks with Harmony, we were extremely happy to know she was spending time and having fun with her fellow friends/patients at the SC. While harmony was watching the fireworks, my mom, the girls and I went to our neighbor Alice’s house for a tasty dinner, some great company and some fireworks of our own, thanks to the Lingenfelter family.
Support from Family & Friends:
Harmony has had many visitors over the past few weeks, including friends, such as Kim, Megan, and members of the Lilburn Mom’s group, who have been her friends since Riley was born…. over 10 years ago. They all showered her with love, support and gifts, which included a “Prayer Bear”. Harmony wanted me to let you all know how meaningful it has been to her, and how grateful and thankful she is for all of the calls, texts, cards, gifts and visits. Although she may not respond or reply, it doesn’t go unnoticed. These past couple of weeks, Harmony has been struggling physically and mentally…adjusting to all of the changes taking place…and your support has helped her push through. Please keep it coming!
Home Preparations and Future Plans:
Between Harmony being so busy with therapy, all the intense training, a few setbacks, and the holiday week, I have not had much time to prepare our home for Harmony’s return. Since my last update, we’ve learned that Harmony's tentative discharge date is set for July 23rd, 2024. This exciting news brings both joy and anxiety as we prepare for her return. With my parents' help, we’ve started decluttering and making necessary adjustments to our home. My parents moved upstairs to our master bedroom, to allow us to work on the main floor guest bedroom.
On Sunday, a friend of Harmony’s brought us dinner at home, and offered their assistance with the immediate modifications that need to be made. This was a huge help because I have been overwhelmed in general, and in a state of analysis paralysis, thinking about everything that needs to be done and how to pay for it. They helped me prioritize what needed to be done to get Harmony in the door and temporarily set up, until I can hire a contractor for the bigger projects.
Looking Ahead:
This past week, I’ve focused on clearing the playroom and decluttering the garage for the upcoming modifications. Over the next few days, I will be working on clearing out the guest bedroom, so that I can remove the carpet and install adequate flooring, just in time for Harmony’s medical equipment to be delivered.
Today, we had a discharge planning meeting with Harmony’s care team to finalize the details for her transition home, but we're still sorting out outpatient rehab and transportation logistics post discharge. I’ve been on extended leave from work since April 22nd and will eventually need to return, so we’re figuring out how to manage everything. Despite the challenges, we’re taking it one day at a time and keeping our faith that everything will fall into place.
Thank you all for your continued support and prayers. Your kindness means the world to us.
Warm regards,
