Andre Xavier's Blog

Update from Charlie

Hello there! It’s me Charlie with the first ever update straight from the source. Exciting right?! Don’t get too excited though because life is as busy as ever and I have no idea how often I will be able to update. But after hearing some chatter that some of you have been itching to find out how I’m doing, I thought I’d give it a try. I appreciate all your continued support and am glad some of you stuck around and understood that my family needed to take some time to focus on our time together.

On Thursday, I had surgery at John Hopkins to release the two main contractures under my right arm and my inner elbow which I never knew what the term was for until now when my curiosity got the better of me. That part of your arm is actually called the cubital fossa or the chelido which I think is kinda funny. Anyway, my burn surgeon also did a release at my neck with several z-plasty revisions because I still had a few scar bands that were pulling. Surgery lasted 5 hours which was a little longer than any of us anticipated, but all went well and my surgeon was very happy. I’m sure she just wanted everything to be perfect. My Aunt Laurie drove up from Georgia to help me while I recover and I’m relieved she has no issues with driving because she sure did a lot of it. After making the 8 hour drive up, she then turned around and drove through traffic to Baltimore, waited for me all day in surgery and then drove me back home (in more traffic) same day. We arrived a little before midnight so it was a long day and she’s a trooper.

Two days post I am doing well. My right arm is casted straight and I am not to use it by bending or raising it but it’s not terribly painful. I do however have a wound vac system hooked up to drain fluid which you all can probably guess I am not so ecstatic about. I don’t like anything tying me down and am currently counting the days that I’ll be able to have my arm back and won’t have tubing connected to me and a machine to carry around. My neck is looking good and like it’s healing well. They used dissolvable sutures so that will be a breeze. For my arm however, they ended up using a skin substitute and so those wounds will require more attention and will take longer to heal. But I look forward to having more range of motion when all is said and done and will hopefully have an easier time getting dressed and reaching things.

Last Friday, I actually had the opportunity to go to Dallas! Avita medical, the company that developed RECELL which was the spray-on-skin substitute used on me, flew me down to kick off their annual sales meeting. It was amazing to share my story with so many people within the medical and burn community. They don’t often get to see the results of their life saving hard work and I truly hope my story of survival and hearing how I’m thriving gave them a renewed motivation. While I was away, the kids stayed back enjoying the snow days they had.

As you well know, my life is about more than what happened to me with my burn injury. Since early October following the last update here, it’s been just me and my boys. André and I are separated and he currently lives an hour away. Adjusting to this new normal hasn’t been easy, especially with London just beginning to process the feelings surrounding my accident, but it is what’s best for all of us. I am so grateful to have progressed to a point in therapy where I am able to take care of them with a little help from friends and family. The boys get to see André weekly for a few hours but in time once he’s settled in Charlottesville, they will see a lot more of him. As anyone could expect, there have been some lifestyle changes to adjust to including London switching schools but he is loving his new school and gets to ride the bus with all his neighbor friends.

Understandably, this news may catch you by surprise. And I’m aware it doesn’t go along with the fairytale story that’s been building for 2 plus years but in life, not all things are as it seems. Marriage is stinking hard and it’s ever changing. In my case, things weren’t great before I had my accident so one can only imagine what throwing a traumatic injury in the mix could do. But was it the ultimate reason for our demise? The end of a 15 year run? I guess we could never know for sure, but I’m fairly certain in my heart of hearts, this outcome would have been the same even if my accident had not happened.

This is not a sad story or an ending to a great one. This is the beginning of a time where I can be truly happy, where I can be authentically me. A time where if you’re reading here, it’ll be my voice you’ll hear.

I do still want to maintain a certain amount of privacy especially at this time, but please know I have plans to create a blog in the future.

Thank you all for your support and for reading this far. It means a lot to me.

The attached photos are of my underarm before my surgery, the after of my neck z-plasty, me in Texas and me momming hard.

Day 731 | September 11, 2023

Hello friends,

I intended to post this yesterday, but I could not do so. Here it is:

Two years ago, life as we knew it ceased to exist; today is a day of mixed emotions, lots of gratitude but also anger, sadness, and grief.

This year feels different than last year. This year, we can look back and see how remarkable Charlie’s progress has been, but we are also reminded of how much more she still has to go, and it is not easy or fair.

One of the biggest gifts is to have Charlie here with us and see her stepping back into her role as a mother, which makes it all worth it.

I don’t feel like writing, sharing, or being vulnerable today. Still, I remember how empowering and healing my journals were to me during those first few weeks and months of complete darkness. I am not afraid to spend some time in darkness today, and as I have learned, there is no shame in allowing the not-so-positive thoughts and feelings to come into my mind and soul because I know only when you enter darkness can you see the light.

As I contemplate today’s memory of a tragic and painful day in our history, I remind myself how blessed we are to have Charlie alive and at home with our children. She was given a 3% chance of survival!

This is the miracle God has given my family, and I am forever grateful.

Life is not the same and will never be, and that is okay because we have been given a second chance at life, and we will continue to choose to be positive and grateful.

We have some ideas for celebrating the next Burnaversaries; I will share them when we have a concrete plan.

Thank you for being there for us when we needed the most.

May God Bless You

Andre

Day 589 | April 22, 2023

Good evening, friends. Today is April 22 in our new and amazing life!

It has been almost a month since my last journal entry; we have had a hectic spring!

Let’s start with Easter, we had a very blessed time, and this was a very special Easter for us because last year Charlie was at Sheltering Arms Institute, where she performed her epic escape, and security came to get her; I highly recommend that you read back on last year’s Easter post for a good laugh.

This year, Charlie worked hard preparing the cutest Easter baskets for the boys, alongside their Easter outfits, Charlie loves decorating, and our house looked beautiful; it is hard to capture into words the feeling of seeing Charlie at our home, cooking alongside me, when just 12 months ago, she was not able to do much, while in rehab, it is unbelievable how much she has progressed in the last year, it is a mixture of gratitude with excitement and wonder that I felt during our Easter weekend, it was a very special Mass that we attended, we have so much to be grateful for.

After a joyous Easter weekend, we couldn’t prepare to the next few weeks ahead, as we start a busy schedule with the boys, on April 4th, our beloved cat Bluey, went missing , that day, I was out for meetings, and between Charlie’s aide and our nanny getting the boys loaded into the van, the garage door was left open and Bluey escaped, when I got home around 3pm , I didn’t see the cat, so we started looking everywhere in the house, no sign of him, we began to get worried, since he is an indoor cat, declawed, we knew he couldn’t really defend himself in the outdoors, we quickly made our neighbors aware, and by the next day, lots of our friends and neighbors were looking for Bluey, we searched for him early in the morning and late at night, he had just vanished, we couldn’t find him anywhere, we had contacted the SPCA, our vet, and every possible online lost pet group, two weeks went by, and we were close to have accepted that Bluey was gone, we were so grateful for the time we had with him, he was indeed part of our family, he helped us heal, we loved him so much and we will miss him dearly, but when we lest expect, on the 13th day of his disappearance, Charlie received a Facebook message request, she looked , and clicked to accept and there it was, a picture of our Bluey!

We rushed to contact the person, and after a few phone calls, I got the address of the person that had him; he was found trapped inside a roof in a parking garage! He was located near McGuffey Park, downtown Charlottesville which is almost 3 miles from our home; when I picked him up, he looked a little skinny and was limping, but he was eating and drinking; next day, I took him to the vet, and after few tests and exams, they determined that he suffered a heat necrosis injury on his right posterior upper leg, a big and deep burn wound, he also had few burns on his paws and few cuts on his body, when we learned that, we were beyond shocked, how could that be possible, our sweet Bluey is now a cat burn survivor! How is this possible? His meds are like some of Charlie’s, like Gabapentin and antibiotics.

He has been back home with us now for a little over a week, and he is recovering very well; he is more loving than ever, we are so grateful and happy to have him back, and I am still trying to understand what lesson is life showing us with the disappearance of our cat. His getting burned and surviving for two weeks without care; makes me wonder.

Charlie is continuing to push herself in therapy, she continues to get stronger, and she is doing so much more at home; it is just amazing to be witness to her progress; her big news is that on the second week of May, she will be having her first-hand surgery, her hand surgeon at UVA will fuse her left thumb, in a fixed position that will hopefully allow her to perform a pinch and pick up things more firmly, sadly right now, that thump is overextended and is continuing to do so, causing incredible pain and making impossible for Charlie to pinch things, so it is a necessary surgery, we kindly ask you for prayers.

We have returned to have aides from an agency; it is too early to evaluate; we are keeping our fingers crossed in hopes that we have consistent and reliable service; only time will tell.

Tomorrow, we will be attending our first Annual Burn Survivor lunch at VCU Burn Unit, this is an annual event hosted by the Burn Unit, and we are very honored to be invited to attend; Charlie is excited to meet new friends and fellow burn survivors, she has becoming more involved in the Burn Community, and is starting to have an impact in some of the survivor's life.

Next week, Charlie will be the keynote speaker at a Red Cross event in Richmond, and she is beyond grateful for the invitation; I can’t wait to hear her talk; every time I have seen her do a talk, I am just awe of her gift of storytelling, there is not a dry eye in a room by the time she finishes her story.

I am keeping busy and slowly rebuilding my businesses and book; I almost lost her and continue to be on the top of Amazon's list; thank you so much for your support!

I am enjoying my weekly blog post at Casa X Publishers; I enjoy sharing with you the research I do on my issues or topics that interest me; I am happy and grateful that we continue to be blessed every single day by God.

Thank you for your continued support and prayers; I want you to know how important each of you has been in Charlie’s recovery.

May God bless you, and have a good night.

André

Day 563 | March 27, 2023

Good evening, friends; today is March 27th in our new and grateful life.

It has been a minute since my last post, life has been busy, and honestly, my time has become scarce lately.

But I have mostly good news to share, and I am grateful for your continued support; we; greatly appreciate it.

Charlie is continuing to make significant progress; she is getting stronger and will soon start hydrotherapy; yes, she will get into a pool! She has been waiting for this moment, and she is so excited about it; it will be a moment of discovery; her Dr. has cleared her, but also told her to watch her skin and make sure to hydrate very well after the pool, the chlorine and other pool chemicals will dry her skin very fast, but it will be well worth, to once again feel the water around her body and float on it, it has been a long time, and Charlie always loved the water, we are both scuba diving certified. We hope to dive one day again, but first, let’s start with the pool and see how it goes.

Now, with the pool, we will enter an entirely new world of exposing her wounded body; I can assure you that it is not an easy step. She is working very hard mentally to overcome all of her fears and preconceptions about exposing her burned, scarred body in public. It takes an incredible amount of courage and vulnerability, and once again, Charlie is an inspiration; she is facing this new challenge head-on.

I am so grateful to be beside her as she overcame this next challenge.

The last few weeks have been a blessing, we have managed to enjoy many family outings, and as I still struggle with good and bad days, I am starting to see how blessed I am to have the beautiful family that I have and how much I have to be grateful, and just looking at photos of the past few days, I can see how much we have overcome, and this has been so helpful to help me to refocus and get back in being present, I am happy to feel happy again, I have learned and implemented new tools to my self-care belt, I take more breaks. I purposely find time to be alone and write in my journal.

I realized how much I missed those 30 to 45 minutes a day that I used to write when in the hospital with Charlie, now I am using my writing differently; I have been writing on my new blog Casa X Publishers, where I use my passion about research and write about relevant topics about mental health, and it has been very therapeutic to me.

Our boys are doing fantastic, London loves his time at Drama, and Julien loves his mornings at school and spending afternoons with his mommy; they both are mommy’s boys, and she loves every single minute with them and, of course, Bluey, our Cat.

Oh, Bluey, he has become a crucial part of our family, and for no good reason; he is obsessed with me and always follows me around and hangs out at my office during the day; I am starting to like him.

We have consistently excellent child care; we have had some issues with the Aide agencies, and for the last month or so, we have hired someone privately until the insurance decides what they want to do; this has been the main issue we have been dealing in this past month, but I am confident that in a getting to a resolution sooner than later.

Well, that is about what I have to share with you for now; life is becoming exciting, and soon, we will have new adventures and memories to share; thank you for your continued support and prayers, and thank you for your support of my Book, looking back, it is just amazing to see how far we have come!

May God Bless You!

André

Day 537 | March 1, 2023

Good evening, friends. Today is March 1, 2023, of our new and grateful life. Things are starting to get into a more stable pace since last Monday; we have had consistent aides for Charlie, and our new nanny is doing great! This is very promising. Charlie is continuing to work very hard with PT and OT, both at home and outpatient, she now has her new tennis shoes, and earlier this week, she got fitted for braces and pads for the tennis shoe; it is fantastic to see how much better she can walk when wearing those shoes. She also had a minor procedure done at the podiatrist, cutting part of one of her nails; sadly, the burns have altered the bed of her nails, and they get ingrown very quickly, which is excruciating, even for someone like Charlie with superhuman pain tolerance. I have been struggling with my PTSD. The last few weeks were very stressful, and I have reached a new low in my mental health, and I am so grateful for Charlie's support. She has been there for me, it is not easy, and there is no shame in asking for help when we need it; trauma is trauma, no matter how big or small, direct or indirect, it affects people differently; I am grateful for the support system that I have, and I Know, all the difficulties that I am experiencing are temporary, and soon things will change to better, the future is exciting. I want to emphasize that it is ok not to feel happy or well, but it is essential to talk with someone and know that you are not alone; there is always someone there for you. I am happy that in the last week or so, I am out of the darkness; with the love and support of my family, and a few of the technics learned at therapy, I can be in a better place mentally; self-care has been of enormous value to be, thank you, Charlie, for giving me a break when needed. This is one of the reasons why I haven't posted in a while, I have been writing as part of therapy, but I was not motivated to write here and share our progress and struggles with you. Still, as I started to write this post, I realized how important it is to share the ups and downs because I will never know if one person here may be in the same dark corner that I was, and reading that this will pass, and it is temporary may give the encouragement needed at that time. The boys are doing so well and growing up so fast, and it is such a gift to see them discovering the world with their mommy by their side. I appreciate your continued support; thank you for praying for us. Have a great night, and may God bless You. André

Day 512 | February 04, 2023

Good evening, friends. Today is February 4th,2023, in our new and grateful life.

To say that I have been busy in the past two weeks would be an understatement; between running my business, advocating, continuing without childcare, and undergoing a change of home care agency for Charlie's Aides, life has been beyond busy. Still, as you will see below, no matter how hard it becomes, there is always something to be grateful for.

Let's start with the changes we experienced, there has been a change in the agency that provides Aides to Charlie at home, and the initial assessment was so promising and exciting to us; we learned that the new Aides would be able to drive, that was such a positive change, Charlie will be able to have more independence and go to the store and such.

However, very quickly, we realized that this change would not be so easy or smooth; on the second day, there was a called-out, and no Aide came, so I had to step in on a new role, the one that I had for the most part, not being needed, the role of a caregiver.

I had been trained, and Charlie is a fantastic instructor, so her bath and whole-body skincare routine went very well.

Very quickly, I realized that on that Tuesday, I would not be able to work since Charlie had no aide, the boys had no nanny, and it was just me to be the sole caregiver that day; before I could think, it was time to get breakfast ready for the boys and take them both to school.

I am so grateful to have the ability to jump in as needed, but sadly that was not the only day we had issues with the new Aides; we keep having different Aides every day, and sometimes two in one day; it was beyond exhausting for Charlie to tell how her accident happened, explain her care routine daily for a whole week, by the end of last week we were drained, physically and mentally, we requested a meeting with the agency to address our concerns, for now, let's say that we still dealing with some issues. Still, we are hopeful that soon, we will have some consistency in Charlie's In-home care.

Charlie has also been doing her best to help me with the boys; she is getting up extra early to pick up their clothes and assist me to the best of her ability in getting them ready for school.

Besides all the challenges, Charlie continues to progress with her PT and OT therapy; she can now use a cane on her left hand and walk short distances.

She continues to inspire me daily, the next day after her cane arrived, Charlie wanted to visit Patch, and once there, she took a courageous step; she walked into the outdoor pavilion and stood right where the accident happened, taking over any fear that she may have over that place, I must confess, I am not as brave as she is, to this day, I can’t step foot inside that pavilion without dealing with severe PTSD symptoms, I don’t know how she does, see the picture below.

I still remember the day her surgeon told me Charlie would never be able to walk again, and to see her now, climbing stairs and walking with a cane, is beyond amazing.

Medically speaking, she is doing the impossible. Still, nothing is impossible for God, and I thank him daily for the miracle we have received.

Charlie is now working with a PT and OT at home in addition to her outpatient therapy, and soon, she will transition her PT into ACAC; another exhilarating step was the fact that Charlie can now wear a tennis shoe to support her feet and hopefully make her gait ( walk) more stable, a big thank you to Ragged Mountain Running Shop they are a locally owned shop in Charlottesville, and they made Charlie feel so welcome at their shop.

The following 60 days will be crucial for her mobility; we are so excited, it won't be easy, but if anyone can do it, Charlie is the one.

We had two critical medical appointments, one with her skin surgeon and one with her hand specialist, both went well, and in the immediate future, there will be no surgeries planned; once we have established reliable childcare, she will revisit her options.

I continue to deal with PTSD symptoms, and as I learn to deal with my new reality, I remember how much writing helped me when I decided to create a new company; yes, I know, as if I am not busy enough.

You must also know that I have ADHD, and I love to “ multitask, “

The mission of this new publishing company is to create journals and planners that can offer some help and guidance to anyone interested in improving their mental health since I know the benefits of writing, and keeping a journal can help anyone, even if you are not dealing with a mental health issue.

It is incredible how powerful our words can be when they form from our troughs into our reality when we write them down.

I have been working hard developing our first three journals, The Self Care Journal, The Gratitude Journal, and The Organizer, a Planner for the ADHD brain.

I took the time to used scientific proven principles when creating our journals and have also focused on the quality of the design and, in particular, its affordability.

Our journals will be accessible to as many people as possible because mental health crises do not discriminate, so access to improving them should not either.

The name of my publishing company is Casa X Publishers. Casa in Portuguese means house, and X is the first letter of our last name Xavier.

I would be very grateful if you took a moment to visit our website; I have written a few blog posts there, and they are all related to mental health; I will be posting there initially weekly if you are interested in scientific-based content about mental health, Advocacy and other topics that are important to me as an Author and Advocate, I would encourage you to sign up for our blog. It is a new site, and we are still working on it.

I have the Journals for sale on Amazon and our website, and I hope you can benefit from our journals as much as I have from my journaling; they are all priced under $7, and my goal is to keep all of them as affordable as possible, I will keep on adding new Planners and Journals often, you can also sign up to never miss a new release, they make great gifts as well.

As you can see, we are keeping our selves busy.

I am so grateful for the opportunity to be a caregiver to my wife. It gives me even more admiration for the many family members out there that are full-time caregivers. Even in the face of challenges, we don’t slow down. May God continue to provide you with the necessary strength to keep going.

I remain grateful to see the many blessings we continue to receive.

Thank you for your prayers and support; I appreciate you checking Casa X Publishers.

https://www.casaxpublishers.com

May God Bless You and Your family!

Day 493 | January 16, 2023

Good evening, Friends; today is January 16th, 2023, on our new and grateful life.

We have started the new year with a few changes; some are very exciting, and others not as much; I will begin with the positive changes.

Charlie is now back in our main bedroom; she goes upstairs in the evening and comes downstairs in the morning; this has been a significant step towards normalcy; she is now sleeping on our regular and comfortable bed.

Also, part of the reward of her effort to come upstairs is that she gets to snuggle with her babies and visit them in their rooms, which is just an incredible gift; a few weeks ago, we didn't know if that would ever be possible again.

Charlie continues to work with her PT and OT; She has a new doctor now; Dr. Jones from VCU is her physiatrist; we are very grateful that he is willing to take Charlie under his care; we have been in search of a physiatrist for months, UVA didn't have one available due to the complex maintenance care she requires; you may wonder why this is exciting, it is because now, Charlie has one Dr. That is now the facilitator between all the different disciplines responsible for her care, we are so grateful for that!

She will continue her PT and OT Therapy at UVA, but her primary doctor is now at VCU.

As you may remember, we lost our nanny, so Charlie and I decided to send Julien to school, and it is hard on Charlie because she has missed almost a year with him. Still, at the same time, he must socialize and develop; he will start next week for half a period.

I am keeping myself busy with work; the travel agency is bustling at the moment, and I have also been working on an exciting new project; I am hoping to reveal it soon; it has to do with writing and mental health; stay tuned.

There is a lot that is happening, but if I am being honest, the last few weeks have been challenging psychologically and physically; the lack of childcare is taking a toll on us, and there are many things that Charlie would like to be doing that she can't yet, like bending her knees. The cold weather is also brutal on our mental health, but no matter how hard life is right now, I can never forget what we have overcome, what Charlie has overcome; we have so much to be grateful for; I need to keep reminding myself of it daily.

The next few months will be hard, we know it; Charlie will likely require additional surgeries to release some of her scar’s contracture, which will require hospitalization and temporary loss of mobility; as much as we would like to be done with all the surgeries and medical needs, we now know that Charlie has a lifetime commitment to her burn care, not sure if there will ever be one last surgery. Still, I am grateful for our access to provide her with the best care possible.

One cute thing happening now is that Charlie comes upstairs and doesn’t have her chair; Bluey, our cat, is becoming best friends with Charlie, and she loves it!

That is what is happening with us, busy with life but grateful for many things.

Thank you for your continued support, thank you for your support of my book, and thank you for your prayers.

May God Bless You.

André

Day 478, January 1st, 2023.

Good evening friends; today is January 1st, 2023! in our new and grateful life.

I hope you and your family had a blessed and happy Christmas and a happy new year because that is precisely what we had.

Charlie loves Christmas, as you know, and this was an extraordinary one for us because Charlie was at the hospital last year. We had no way or idea when she would be home or what her mobility would look like, well fast forward to just a few days ago, Charlie was here with us, and she was beyond active, wrapping gifts, and together we cooked a delicious meal.

On Christmas Eve, after we returned from Mass, Charlie surprised me when she said, I want to try to go upstairs!! I was shocked!!

That is right, she, very carefully and with help, was able to claim upstairs, and she surprised both boys during their bath time it was the sweetest moment; she proceeded to London’s room, where she got on his bed and read a book to the boys, and for the first time since the accident, she tucked them into bed, a true Christmas miracle, and I am still amazed that has happened.

Our new year's eve was very quiet, on purpose; we just stayed home and watched the ball drop on TV, and we reflected on the year that had just ended, and we have so much to be grateful for; the list is enormous, and I am sure you know almost all of you know how far Charlie and our family have come, and please know you are a huge part of her recovery as well.

As we start 2023, we remain grateful; we know we will continue to face challenges, and we are also known to focus on small accomplishments each day; we pray that God continues to bless us.

I will continue to do my best to update you here and on our blog; we have a few exciting projects in the works; please continue to pray for us.

Thank you, Happy New Year, and May God Bless You.

André

#Burnsurvivor #Christmasmiracle #gratitute #cheeringoncharlie

Burn survivor celebrates being home for the holidays and sets impressive resolutions for the new yea

Good evening, friends. I almost forgot to share this sweet news story our friends at WVIR NBC29 did last week; you will see the fantastic accomplishment I wrote about in my last journal. Thank you for your continued support.

A Caregiver's Guide To A Burn Injury

Good Morning; as we prepare to celebrate Christmas, I am happy to share with you my latest book project; this was done in partnership with our friends at the #Phoenix Society; it is an E-Book that will serve as a guide on how to navigate the complex healthcare journey faced when someone is hospitalized, I have learned few lessons on our Journey, and it is very humbling to have the opportunity to use my new found talent of writing to help anyone in need of help.

Please visit the Phoenix site below if you want a copy of the E-Book. You can download it for free; this is a small way to give back.