Andre Xavier's Blog, page 10

Day 303 | JULY 10, 2022

Good evening, Friends, today is day 303 of our new and amazing life!

Oh Sunday! Our favorite day as a family.

Today I was up at my normal time, 7:30a and the boys were already downstairs with VoVo by the time I was out of bed.

Breakfast was uneventful today, and by 10:30a I was on my way to Mass.

It never gets old to me, the incredible feeling of peace and reverence that I feel when in the presence of God.

I have so much to thank God for, and yet I continue to ask for his blessings.

After church, I came home and with London took a trip to the grocery store, we managed to be in and out in under 30 minutes

Today Charlie had a very special visit, friends from her past, the couple that Charlie worked as a Nanny 17 years ago!

They had a very good visit and so much to catch up! Charlie really enjoyed their time together.

Charlie and I talked briefly today, I was very busy with the boys today, we played outside finally!

They had so much fun outside and by the time we got back inside it was almost dinner time!

After bath and dinner, it was time for bed time stories and prayers.

Today, the gospel talked about the Good Samaritan parable, and got me thinking about its meaning, and truly it is a message of Love, how we should Love everyone.

Today I invite you to ask yourself, have you loved the people around you lately?

Thank you for your love, prayers and support!

May God Bless You!

André

Day 302 | JULY 09, 2022

Good evening, Friends, today is day 302 of our new and amazing life!

Today I had an early start, thank you baby Julien.

I was up by 7a, and when I checked my phone I had a text from Charlie, she said, I am sleeping in tomorrow, call me after breakfast:)

I am glad she texts me; I normally call her first thing in the morning.

Today it rained all day here in Charlottesville, and I decided that we would take a low key, slow indoor day , that included, playroom imaginative play, ball throwing games, wrestling, Disney+ and PBS Kids.

Charlie was up by 8am, and she was in a great mood, lately that is her normal , her pain still being managed, she was visited today by her Surgeon and he inspected her allografts and so far, so good.

Charlie and I talked about the recent media requests. We are being very intentional on what media we talk to, since we do have a purpose in sharing Charlie’s survival story and we want to inspire and help the folks that need or want the most.

Next week will be one filled with meetings in our discerning journey to identify the most effective way to start the giving back phase of our journey in the near future. We have been so blessed that we know that God wants us to give back in many possible ways.

Charlie enjoyed a visit from a dear friend today and also enjoyed the sweet treats that her friend brought in.

I am not sure if you know, burn survivors endured the Hyper metabolic state and are at a very high risk of developing insulin resistance and consequently Diabetes, that is why, Charlie really must watch her sugar intake and she does a very good job, but once in a while it is ok to treat yourself;), her levels are under control.

Once Charlie returns home this second time, we will start a very regimented nutrition plan.

I am so appreciative of your prayers and support!

Thank you for supporting our book, if anyone here is part of book club and would like to order a bulk order, please message me and I can talk with you about a special price for bulk orders, and if you are local, I would love to schedule a visit at the end of the book reading to answer any questions the group may have

Have a good night and May God bless You!

André

Day 301 | JULY 08, 2022

Good evening, Friends, today is day 301 of our new and amazing life!

Oh, baby Julien, once again I was up at 4am to put him back to sleep, this time he didn’t go back until 5:30am.

When that happens and London doesn't have school, I can try to get more sleep by waking up at 8am.

Charlie did call me at 6:30a to say that she was going into the OR at that time, and I was very happy to see her smiling face, it is always nice to say I love you, before your loved one goes into surgery.

I made a special breakfast for the boys! London has been asking for cinnamon rolls, and today was the day I made it for breakfast:)

Charlie’s surgery started early and lasted longer than we expected, Charlie was not finished until around 1pm.

Thank God I didn’t feel nervous or anxious today, but I was very relieved when I got a call from the OR nurse telling me that all went well and that Charlie was breathing on her own.

I had a busy and productive day at work, and the time went by fast, I talked with Charlie and she was in a good amount of pain, but as usual she was just her happy self, we talked with her surgeon and he was pleased with the surgery, he replaced all allograft ( cadaver skin ) and also excised the openings, none of them were ready for the autograft ( her own donor skin) , the main purpose of the allografts is to stimulate the wound bed to produce granular tissue and to provide the best possible set up for the autograft to succeed.

The reason for today's delay was because her surgeon worked on her alone, normally they have two surgeons.

Now we wait until the next procedure to check the wound bed, tentatively it could happen next Tuesday and only after that we will know when the autograft will take place, sadly it takes time and we have to be patient, and pray that Charlie doesn’t develop any infection.

We are also waiting on the hand surgeon to consult with Charlie, sadly her left hand now is showing signs of scar contraption and if they don’t intervene very soon, she could lose mobility in that had as well, which would be devastating for her.

I kindly ask you to pray that God guide her surgeons to act quickly and with certainty, Charlie can’t lose mobility in both hands.

Besides this very scary future ahead of us, we choose to really focus on now, we have so much to be grateful for, and this evening we had a great time talking over video as a family, and the cutest thing happened, Charlie said, oh look at you guys? Let me take a picture, baby Julien without anyone saying anything started to smile for the picture, and Charlie was able to capture it, look at how cute!

Today we are grateful for our family, we are grateful for you, your prayers and generosity are so amazing!

Please continue to donate, purchase your shirt, reserve your book, and pray.

We appreciate and need all of your help.

Thank you and May God bless You!

André

Day 300 | JULY 07 2022

Good evening, Friends, today is day 300 of our new and amazing life!

Wow, it is hard to believe that we have reached 300 days into this new life and I also can’t believe that I have been writing for that long and I can’t also believe that so many of you have been following us since day 1! Thank you!

Today I woke up early, 6:10am, I was anxious, I texted Charlie to find out if she knew if she had an OR assigned, as I waited for her reply, my mind started to race, for a moment I reverted back to the early days when her daily surgeries terrified me, the fear was real.

It is incredible what time and experience can do for us, in my case, I have learned that I must turn down my expectations, and my desire to control the situation, I am able to remain calm and wait, it is not easy, but it is necessary, within 5 minutes, Charlie replied back and said, not yet.

I hopped in the shower right before baby Julien woke up, and I left London in bed. He came over to my room at 2am, after having a nightmare, poor London.

By 7:30a I was downstairs with the boys having breakfast, and Charlie called, she wanted to see the boys before going into the OR, but as we were talking, someone walked into her room and said, well Charlie we don’t have good news, your trip to the OR has been canceled, we are just beyond busy at the hospital and we must prioritize life or death cases.

I couldn’t help but to feel this initial feeling of frustration, but very quickly we looked at each other and said, well now you can have breakfast:), we just as quickly started to talk about the positives of having her surgery moved to tomorrow, she would be the first case in the morning, she would have more time to improve the wound bed of her openings.

We managed to see the positive and not let our expectations cloud our feelings.

The day went by fast, I was super busy with work, and Charlie was also busy talking with the Burn unit staff, loss of new people that wants to meet Charlie

One of our friend’s came over and did a very sweet art project with London, they created a paper Chain, and it will work as a countdown to when Charlie will come home once again , London is so excited, to remove a link each day!

Around 5pm, I ended my work day and went upstairs. Julien was so happy to see me in London.

I took London to run some errands and also to get our bi weekly haircut. Baby Julien's hair is so thin that it is not ready to be cut yet.

We always have such a fun time, and it is one of the things that I hope he will remember as he grows up, we have been going to the same barber every two weeks since London was barely 2 years old:)

Today I was in recharge of bath and bed time, to give it a break to VoVo and also to have my time with the boys.

Julien really tested my patience today, after one and half hours of rocking him, he still was not asleep, and when he is almost falling asleep, London opens the door of Julien’s room and wakes him up! Oh God!!

I was able to remain calm, but I had to ask for Vovo help, sometimes switching arms can help the baby sleep.

Well, today was a blessed day, and I am so grateful to God and for his mercy towards us, we have learned and grown so much in the last 300 days!

I remember vividly how upset I used to get when a surgery was canceled, and now I am able to see the positive and think about the people that needed a surgery the most, the VCU OR is used by the entire hospital, not just the burn center.

The lesson I take from today is, if we can think about others when we are suffering, it makes it easier to find the positive aspects of things. The key is to not be selfish; I have to learn that the hard way.

Thank you for your prayers, let’s continue it until tomorrow.

Have a good night and May God Bless You!

André

Day 299 | JULY 06, 2022

Good evening, Friends, today is day 299 of our new and amazing life!

Today we return to my journal entry

This morning one of our friend’s, offered to pick up baby Julien at 7:20am and keep him until 11am, to give a break to VoVo.

Normally Julien wakes up around 5am, but guess what time he woke up today?

7am and only because I went to wake him up, yep the one day he has to be awake early, he doesn’t:)

Once Julien left, London was still in bed and VoVo was getting ready.

I made my way into our kitchen, I called Charlie and when she answered, I said good morning! Let’s just take it all in, the silence in the kitchen was something that I haven’t experienced in a long time, it was so refreshing! We both laughed.

Charlie had a very good day, she met with her surgeon and they discussed in detail tomorrow’s surgery, Charlie will undergo tomorrow morning hopefully a surgery to collect donor skin from her head and back, that autograft that will be used to cover the open wounds, there is a chance that not all wound beds may be in optimal condition and if that is the case, the doctor will not apply the autograft and instead he will excise the wound once again.

That means that this will not be the final surgery to cover all her wounds, and tomorrow Charlie will likely have her head shaved once again, she is at peace with it, she knows that her hair will grow back.

Today I had a very special visit with Charlie and we also had a friend joining us, and I am so grateful for our conversation. It is just amazing how when we slow down and because we are aware of our surroundings, we are able to be sensitive to ours and other’s feelings.

This morning, London was so excited his first tooth came out, and he is so happy! Well tooth fairy, please be good to London tonight;).

I would like to remind you that the only limitations in your life are the ones self-imposed! Be bold and dream big!

I also would like for your prayers, we ask God to protect Charlie and bless her team of surgeons, nurses during her surgery tomorrow.

I must confess that I am anxious for tomorrow’s surgery, even when it is surgery number 60, I believe that feeling of what if something happens is always present, the difference now is that Charlie has an amazing track record!

May God Bless You!

André

Day 298 | JULY 05, 2022

Good evening, Friends, today is day 298 of our new and amazing life!

Well, today I was talking with Charlie and I said, I think folks are getting tired of just reading about my boring life, how about we treat them for a very special update directly from you! Now that you're exclusive with People is no longer in place .

Be sure to leave your reply to her question in the comments ;)

Here you have, Charlie

Thank you for your love and prayers!

https://video.wixstatic.com/video/94cd1a_0abf7f16961149979eb02a46a18b4121/720p/mp4/file.mp4

Day 297 | JULY 04, 2022

Good evening, Friends, today is day 297 of our new and amazing life.

Today was a good day.

I woke up at 4am with baby Julien, but I was able to get him back to sleep after changing his diaper.

I got to bed and woke up for good at 7am.

The boys were the usual handful in the morning, I am coming into terms that this is how it is going to be for a little while.

After breakfast, I sat outside on our back deck with the boys and finished my coffee as they played with their toy cars on the ramp, we have for Charlie’s chair to access the deck.

London has been easy going the last few days and I am so proud of him for being a good big brother to Julien.

We talked with Charlie today and she was happy, she was having her hair washed today, since she arrived at VCU burn unit, she can’t shower due to the skin grafts procedures, and that normally is very bothersome for Charlie, but she has not been upset or even bothered too much this time around.

Today I stayed back and spent some quality time with Julien. London had a fantastic day, thanks to our amazing friends that “adopted “him for the day and he went with their family to Keswick Vineyards 4th of July celebration!

I took advantage to really have fun with Julien and that we did, we started by playing outside, but shortly after we went out, it was lunch time.

Baby Julien is choosing cold and soft foods lately, so after his quick meal he went down for his nap.

At that time, VoVo and I had lunch together, it was great just to talk with her without any interruption, I am so grateful for my mom!

I told her, go ahead and get some rest, I will be here for when Julien wakes up.

Julien woke up around 2:30pm, and I scooped him up and we went to play downstairs. He loves cars, so we liked cars. I think we played for almost 1 hour.

Charlie had the visit of one of her favorite friends, they had such a good visit and Charlie was so grateful for her friend time!

When London arrived home around 5:30p, he was so happy, he had a lot of fun! And here is my proud moment? Our friend said that he was so respectful, kind and curious, she said to what his curiosity was so fun to watch, for me this is a huge compliment, because I really encourage curiosity in our house, I tell the boys that curiosity is the pathway to intelligence and they should always be curious

I took London to take a bath as soon as he arrived, because he needed one after such a fun day!

We had dinner, VoVo made a delicious fresh meal for us, rice, black beans and chicken breast and shortly after it was fireworks time!

I took this opportunity to really teach London fireworks safety, sadly tonight VCU burn unit may see an influx of burn victims due to fireworks accidents, and the sad part is that most of them could have been easily prevented.

Charlie had an enjoyable day and her pain is under control.

Thank you for your continued support and prayers and also thank you for keeping our book on the best-selling list of Amazon since we launched the pre-sale!

Have a good night and May God bless You!

André

Day 296 | JULY 03, 2022

Good evening, Friends, today is day 296 of our new and amazing life!

Today London woke me up early, at 6am he wanted to finish the movie we started last night, since I was awake, I decided to start my day at that time.

Charlie messaged me around 7:15am today that she was back in her room and the procedure went very well!

I also decided to attend the 8am mass instead of the usual 11 am we normally go to.

I went alone and it was great to be able to focus on the mass and really feel the peace that God can provide.

When I got home, the boys were finishing breakfast, baby Julien was not happy, he was having a very difficult time with his teeth, so he just wanted to be held and whining nonstop.

Charlie called right when I was in the middle of trying to get the boys under control and she could see how overwhelmed I was becoming.

I didn’t lose my patience and eventually I was able to get Julien to calm down and London to finish his breakfast, but I did feel like I was very overwhelmed, and I absolutely hate the fact that I am not able to handle the kids like Charlie and most mothers do without a sweat, I was just mad at myself for my inability to care for my children, I felt weak!

I shared with Charlie my frustration, and she in the most amazing way, made me feel so loved and cared for, she told me that I should never ever feel weak, she went on to tell me that what I have endured and overcome, no weak person could do, so she knew I was not weak, she really builds me up with her kind, and encouraging words.

Truly the feeling of being loved, is the most comforting and precious feeling one could have, and I am so grateful for Charlie’s love.

After her pep talk, I felt better and I took the boys outside and we played, shortly after one of our kid neighbors joined London and it was a fun morning!

Julien was tired and ready for his nap around 11:40am, and I told London that we would go to Sam’s to grab milk, fruits and other things and he and I made our way to Sam’s.

Once there we grabbed lunch, pizza , and that is when we met some of you today, thank you for saying hi and sharing your incredible testimony in how Charlie’s story is inspiring you, thank you for sharing.

As we moved around Sam’s, London saw the People magazine rack, and he asked me to please buy him the magazine where mommy and him were on it, so that I did and he was so happy to see him at the magazine, he even asks me to take his picture holding the magazine

After returning home, Julien was still sleeping and after I put our groceries up, he woke up.

That was lunch time for him, he woke hungry, and VoVo had his favorite food ready, rice , beans and pork loin.

I decided that I would visit Charlie today, since I will not be going tomorrow, and we had the best visit! We ate dinner together and I read to her my newest batch of Chapters from our book, I am really close to finish it, we are now at the last few chapters, and I am so proud of the work so far, there is so much incredible stories in there, it is almost surreal to be back at VCU burn unit as I am reading some of the chapters where we had incredible challenges and to read about them as I am back in that space is very surreal, it almost feels like a movie.

Charlie was in great spirits, telling me jokes and just very happy!

Now we wait until her surgeon scheduled her next surgery, it should happen by the end of next week, we think.

Charlie is experiencing a good amount of pain, and her RA is also really acting out, please pray for her joints, she can’t afford any more damage caused by her RA to her joints.

We started to watch the final episode of Stranger Things, but we had to stop before it ended because Charlie was very tired, this was a special visit, because I was able to tell Charlie in person how she made me feel loved, and how grateful I was for her making me feel that way!

Tonight, I thank God for his infinite mercy towards us!

I encourage you to really make someone that you love, to feel loved! It is easy to love, it is harder to feel loved!

May God Bless You!

Happy 4th of July tomorrow, please be very careful with Fireworks! Be safe!

André

Day 295 | JULY 02, 2022

Good evening, Friends, today is day 295 of our new and amazing life!

Today I was able to sleep. My mom was kind enough to get up with the boys around 6a and let me stay in bed until 9:30a. It was so nice and I needed it!

After my late start, I went downstairs and took over the boy’s care from my mom, today was truly a full day with daddy

We had a really fun day today, we stayed mostly indoors because it was a humid and hot day for us.

London had fun, we watched a movie together, the Bad Guys and he loved it! This was the second time he watched the movie; the first time was with Charlie at the movie theater.

Julien on the other hand, had fun but also, he really tested the waters with dad.

We played for a good amount of time, the 3 of us, just playing with cars. Julien has an incredible imagination and he loves to play with his little cars, and he was so happy to see London and I joined him:)

London and I played with magnet tiles and Legos, and he also is very good at building things.

Charlie was supposed to have her procedure today, but sadly it didn’t happen, and she only found out after 2pm, poor Charlie went the whole day without eating or drinking in preparation for the procedure, but is ok, the reason why it didn’t happen was due to the surgeries of other patients took longer than expected.

Tomorrow the procedure should happen in the morning, let’s pray that it does.

Charlie was part of our day via video, she had so much seen the boys having a fun time with dad

My mom helped me with Julien’s bath, and I took care of London. After putting London to bed, I also had to put Julien to bed.

Today I had fun with the boys, I also did not touch my work at all, it was 100% dad duty.

I am drained, I have no idea how single parents do, I am sure many people are able to do it day in and day out, just for me it takes a lot of effort and by the end of the day, I am just tired.

Hopefully Julien sleeps through the night, and tomorrow it will be another blessed day!

We took this selfie today and sent it to Charlie in the morning, me and baby Julien.

Thank you for your prayers and support.

May God bless You!

André

Day 294 | JULY 01, 2022

Good evening, Friends, today is day 294 of our new and amazing life.

Today my day start at a regular time , Julien slept all night and London was slow to wake up

Our morning was very special, because Charlie called in early and pretty much was on a video call with us the entire morning, She had so much fun “being” there and seeing the boys having breakfast, I also took her with us on the car when I took London to school, and for the first time, Charlie participated on my morning routine with London, when I ask him for the 3 things he is grateful for today, than I said my 3 things and today Charlie said her 3 things, it is very important to me that our children learn from early on the value in being grateful.

I also have been talking with London about what it takes to be happy, and we think that a big part of being happy is to focus on things that we have, not what we want, or what we lost. If we can just focus on the present, there is so much to be happy for.

I had a difficult day in terms of my ability to concentrate, I think part of my struggle was having to be responsible for the boy's morning routine solo, since currently we don’t have child care, our new nanny will start on July 18, until then it is just me and Vovó.

I am still learning to deal with my derealization “spells”, I know it is something that I have to be constantly working on, and it takes a lot of focus to not fall into the dream. The word dream may sound nice, but trust me it is not!

I am aware that I am being extreme vulnerable by sharing my mental health issues, and the only reason why I am doing it so publicly is to let anyone that is struggling with any mental health issues, that it is ok to talk about, it is ok to ask for help, don’t fear judgement, you can only get help if you ask for, I know that is not easy to talk about ,in my case , losing my mind, there is a lot of shame on mental health issues, and it should not be this way.

Please don’t wait you have an extreme incident, like I have experienced, it can be as simple as, feeling sad for few days, feeling fearful or ashamed, things will start small, and it is easier to deal with a small issue than to let it grow into something huge, it is ok to ask for help, always.

Around 4pm, I made my way to see Charlie, but I made a stop at the grocery store to pick up Charlie’s breakfast items, snacks and coffee drinks

When I arrived, Charlie was in her wheelchair, and had the biggest smile. She was so happy to see me, I was also so happy to see her.

Charlie had a busy day, she met with one of her surgeons, tomorrow she is having a procedure, where they will take down the dressings, inspect the allograft (cadaver skin), and if all look , clean, infection free, they close it up and in 5 days, she will have her actual second surgery, to harvest her donor skin, and cover her openings with that skin.

She also had her first session with her new psychologist, Charlie is also seeing the hospital psychologist, this time around she is getting excellent mental health care

Charlie remains so positive and grateful, it is just remarkable how strong she is, and I love her new positive attitude.

We have spent our visits just talking, Charlie has started to journal and she is starting to enjoy, it is very therapeutic to write, I highly recommend anyone to write.

Today I end my night grateful, I am grateful for my mom, she has been working so hard taking care of the boys, I am also grateful to Charlie, she has been so supportive of me, and I am grateful to the few friends that have reached out and offered their help, I am so blessed to have such incredible support system.

I kindly ask you for your prayers, for Charlie’s procedure tomorrow.

Thank you for your generosity, prayers and support!

Charlie is looking great for having surgery just a few days ago, she is wearing her birthday gift, earrings.

Thank you,

André