June 29, 2020:

This morning Memphis's physical therapist sat her up in the bed for the first time! At first she didn't like it much but after a few minutes she asked to sit up again! She's all set for her trach surgery tomorrow and they are thinking by Wednesday they will try to get her in a wheelchair. They just don’t want to dislodge the breathing tube. Iggy, the service dog came for another visit today- just at the right time too! Memphis is very scared about tomorrow and with lots of kisses and an abundance of reassurance tonight I’m sure she will be just fine. We’ve been reminding her all day that this is a good thing- a step in the right direction and it’s ok to be scared but we still have to move forward. We got this baby girl!

July 1, 2020:

Today was another busy day for Memphis. The biggest, most exciting event was her swallow test though. And she killed it!!! She went from swallowing water from a spoon, to sipping water out of a straw to eating some Italian ice all in a matter of like 10 minutes I am so incredibly proud of her! Her tenacious and fiery spirit is what’s going to keep her going. She has been silently chanting “ice cream, sherbert, French fries” all throughout the day 🤣 she has a little bit to go before she can do that, but we are on the way and she couldn’t be happier!

Update July 10, 2020:

This has been quite a busy week for Memphis. On Wednesday she had her trach change. She was able to hear her voice a little- she wasn’t a huge fan as the device forces her to breathe a different way and her voice doesn’t sound the way it did before the accident. But with time and practice she will get used to it! I have the utmost faith in her. She wasn’t eating much until Wednesday either. We tried dang near everything and she either hated it or wouldn’t even try it. Now she’s discovered she likes candy- all the sour things, hot dogs, oatmeal, popcorn, peanut butter, munchkins/donuts, and funfetti cake. So far. Will be adding more to this list soon! Wednesday was also the first day she sat in her wheelchair! She was in it for 2 and a half hours. She did great. She didn’t even want to get back in her bed.

Thursday, from the moment her eyes opened she asked when PT would be there to get her back in her chair. She was so excited. When the time finally came and we got her in her chair, she looked and me and mouthed, “ok mom I’m ready! Let’s go!” Sometimes I just can’t handle how cute she is 🥰 this time we were able to not only leave her room and the unit - we were also able to go downstairs and see the garden from inside! She loved being able to get out of her room for the very first time. She hadn’t left in the 34 days we’ve been here (other than surgery and X-rays). So far it’s been a pretty good week! I’m so incredibly proud of her and happy when I get to see that beautiful smile of hers #memphisstrong

Davis Deshong, Furry Friends Adoption, Clinic & Ranch to her team:

" A few weeks ago I was contacted by Lori Griffith, Chasin A Dream requesting info to obtain a service dog for Memphis who was badly injured in a car accident. Coincidently, that same day, Juliet a Golden Retriever puppy left a Wyoming breeder as a gift to Summit for our service dog program. We had no recipient for this puppy at that time but we had the goal for her to be a wheelchair assist service dog.

When I received this request I was with Jason and we were very moved by Memphis’s story and we knew we wanted to help.

Tonight Lori and I spoke again and along with Summit are working on Juliet becoming Memphis’s service dog.
She is in St Mary’s and will be transferred possibly next week to another facility to begin her long journey towards her rehabilitation.

When she leaves the hospital, can we arrange to have the media present when we introduce Juliet to Memphis and her family as she leaves the hospital? Prior to Covid this could have been arranged inside the hospital.

Picture this little girl, her family and this adorable puppy meeting for the first time."

Monday July 27

This is "Their Day”. Memphis and Juliet meet for the first time. Memphis will now go to Shriners for rehabilitation and Juliet will continue her service dog training. They will stay in touch on Zoom until they meet again!

August 6, 2020:

Memphis Rose, along with her service puppy Juliet will travel to Shriners Hospital in Pennsylvania to begin the next phase in her journey. We are all sending love and prayers their way

August 11, 2020:

Whew! 5 hours of therapy today- took a lot out of her. She is exhausted. I’m praying and hoping this girl will sleep tonight. She needs it and lord knows I need it too! Since we’ve been here I think I’ve had a total of 10 hrs of sleep. I don’t know how I’m functioning- sheer will perhaps. And coffee- lots of coffee ️ Going into this I knew it was a lot of care and time and equipment that went into taking care of her but holy crap it didn’t hit me until today I think just how much. There will be no such thing as a “quick trip “ with her anymore.

Everywhere we go we have to bring a portable vent, a portable suction machine, an emergency bag with extra trach supplies (two extra trachs, gauze, a manual resuscitator, an extra vent battery), panties- she’s hates when we use the word “diapers”, wipes, and the portable oxygen tank. Although I think we will be rid of the oxygen tank soon. We’ve been putting her on room air and she seems to be doing fine. We just have to have her on it more and more.

I also need to re up on my CPR certification gotta keep those skills fresh. It’s a lot. It’s overwhelming. It’s daunting. It’s a life overhaul. For both of us. I feel like she is dealing with it better than I am. They say God won’t give you more than you can handle- he must think I can handle a hell of a whole lot! Because I feel like I’m crumbling under the weight of it all. But I will wake up tomorrow and put one foot in front of the other, smile, be Memphis’s #1 cheerleader and probably drink a few cups of coffee to keep myself awake and just keep on going. She is my hero and she told me the other day that I am hers. We make quite a team, that’s for sure. I still cry myself to sleep a few nights a week because my heart is still broken. Do I wish God would perform a miracle here? You bet I do- 10000000%. Do wish I could change what happened or take her place? Without a doubt. But what I don’t wish is that someone else was here with her instead of me. I am so grateful that I am the one to be on this journey with her though, as hard as it is. Being her mom is my favorite

August 30, 2020:

Tomorrow is exactly 3 months post accident. And holy crap what a long 3 months it’s been. It’s like time has stopped but also sped by. It’s a weird feeling. We are in our own little hospital world while everyone else is continuing their lives per usual. Parents are getting their kids ready to start up school, people are going to work or going on vacations, living their every day lives. I don’t even know what day it is most of the time. Time is basically irrelevant unless it has to do with one of Memphis’s therapy sessions, med times or bathroom times. I miss home. I miss my life, my family, my friends, my bed -these hospital cots and recliner chairs have not been friendly to my neck and back! But as much as I miss all of that I miss our old way of life the most. I miss hearing the pitter patter of Memphis’s feet as she would sneak into my room at 3 am to cuddle with me. I miss her wrapping her arms around me for a hug. I miss seeing her ride her bike and asking me play hide and seek with her. I miss seeing her swim and run and do cartwheels and handstands. I still cry most nights. I still beg God to take this cup from Memphis and I- I plead for a miracle. I would give every last limb of mine to have Memphis be whole again. I have days where I feel super hopeful and days where I feel a little less than. Everything’s changed. Change is scary and a lot of times it’s not very fun and pushes you completely out of your comfort zone. And boy am I out of mine. Memphis and I are both excited to go home whenever we are ready but also scared. We are in a very controlled environment here. At home it’ll be different. As a parent you are always in charge of your child’s life but this is even a little heftier. One missed vent alarm or one hesitation on my part could be her life. It’s a big burden to carry. It’s a lot of weight and I just hope and pray that I am the best mom/nurse/respiratory therapist for the job! Any and all prayers, positive thoughts, good vibes accepted!

October 20, 2020:

Hey y’all and happy Tuesday! Today is the day- we are FINALLY going home! We are going to be discharged from St. Mary’s early this afternoon! Wow has this been one hell of a roller coaster. We didn’t think we would be here for this long and this transition has been a bit rocky and Memphis has definitely had a hard time and her spirits frequently have been down. I’m hoping that being home and in a more comfortable environment will help. Although, this will be yet another change and she will be in a new house but I’m hoping this adjustment will be a quick one.

Yesterday most of her medical equipment/supplies were delivered and as i looked at my living room full of that stuff I kinda lost it emotionally. It kind of just solidified everything. Made it that much more real. This isn’t a nightmare that I am going to wake up from. This isn’t a quick recovery thing. This is happening and whether I like it or not and whether I am prepared or not this is life right now. I don’t know if I will ever really be able to feel ok with where we are at or feel at peace. I don’t know if I will ever feel adequate or like I am doing enough. I don’t know if I will ever be able to really wrap my head around the fact that this is life as we know it. I can only imagine how she is feeling.

She hasn’t said much but I know she is both nervous and excited. Scared but hopeful. I am still in awe of my beautiful and courageous daughter. Every single day she blows my mind with how much of a badass she is. She’s sweet and kind. Funny and so extremely smart. Intuitive and brave. Loving and sassy. She’s got a fire that i hope will never be burned out. She’s a bright light and I am just so thankful for her- even when she wakes me up at 3 am to ask me random questions

Please keep Memphis and I in your prayers. Send us all the good vibes and thoughts. We are grateful to y’all! Let’s keep the hope alive!

January 1, 2021:

Hello and Happy New Year y’all! Wow...2020 was quite year for everyone I think. For me, the best word I can think of to describe it would be “challenging”. It was a year of weirdness, tragedy, heartbreak, loss but also a year of growth, learning, making new friends and rekindling old friendships. It was a year that we will never forget that’s for sure. There are a few dates in particular that stand out and will forever be imprinted in my mind. The most important date though would be Sunday, June 7th 2020. Memphis’s “life day”.

I remember every detail of that day, from beginning to end. Every day I wish I had the ability to turn back time, or the ability to be able to switch places with someone. I still play “if only” in my head several times a day. I still plead and bargain with the big man upstairs. I still cry, I still grieve. But I am also learning to find joy in the midst of all this pain. I am learning, very slowly, that although life is different, difficult and sometimes downright shitty right now, that I still have Memphis with me. She is still extremely bright, loving, sassy, kind hearted, bossy, and stubborn. She is a force to be reckoned with. She is my best friend. The love of my life and my baby girl. Even though she may not be exactly who she was before, she is still right by my side. And for that I am grateful. I am grateful for every breath she takes. Every word she whispers. Every blink of her eyes. Every twitch of her muscles.

I didn’t think that our lives would ever be changed this much. And once they did, I wasn’t sure I’d be able to get through the rest of the year. Slowly but surely, day by day, we made it. And here we are, greeting another year. I can’t say that I am exactly thrilled with where we are at but I can say that I am not going to let our circumstances stop us from living beautiful lives. I will not let Memphis sit by and watch life pass her by. And I won’t let myself do that either. Life is too precious and the world is too beautiful To let sorrow and frustration and unfairness keep us down.
I have big plans for this girl. For me. For us. I have thought a lot about words and the power they hold. The written word. The spoken word. A single word can change the outcome of someone’s day. Good or bad. This year, I have chose a word for Memphis and I to live by. Not a resolution but a promise. A word to guide us throughout every day. And that word is “Grit”. The dictionary defines that word as: “firmness of mind or spirit ; unyielding courage in the face of hardship or danger.” Today and every day I will remind Memphis and I that we are strong women who possess this wonderful quality and will live up to this word! We have the power to change how are lives are lived. We see the world based on our beliefs and I believe that Memphis will move mountains. God has a plan for her and although I am not sure what it is, I know it’s big.

Thank you to everyone who continues to follow along and support us in every possible way! We appreciate y’all!

#memphisstrong #warriorprincess #PrayForMemphis #will2walk

February 16, 2021:

"Hey y’all” and happy Tuesday! We had quite the weekend which bled over into the last few days. We are on our way down to Miami to iAm Able Fitness for one of our bi-weekly physical therapy sessions. We are so grateful to them. What an awesome facility! Memphis will be having her post-op follow up with the urologist tomorrow. Hoping all is well and that all the stones are gone and that the stent can come out. Fingers crossed

While my mom was out of town this weekend we had the opportunity to spend lots of time with Juliet (Memphis’ service pup), Nala (my pup that’s being trained) and the dog trainer, Summit Earhart with Tidal K9.

Summit is not only their trainer but him and his wonderful fiancé have become great friends! They are two of the most incredible human beings I’ve ever come in contact with. Memphis has a hard time admitting she likes people and making sincere connections and she has taken a strong liking to both of them and we are so grateful to have them in our lives Lori Griffith with Chasin A Dream even came over to do a little photo shoot she is also an incredible and kind person- we are super grateful for her and the team over there as well!

In preparation for next month’s nerve transplant/device implant procedure, I have started talking to Memphis about everything a little more in depth and she has expressed anxiety and sadness and frustration over the whole thing. She is tired of all the hospital stays, the being poked and prodded at, all the different medicines, new routines and al the times we have to get re-acclimated to life after all the new things. She is smart and very inquisitive and wants to know all the things. You can’t sugar coat things, leave things out or beat around the bush with her. She’s a straight up kinda girl. She doesn’t like being treated as someone who isn’t capable of handling hearing the truth or getting the waters down version. She is a human “bs detector”. As we get closer and closer to this she needs more positive vibes, well wishes, and prayers! “

April 11th, 2021 From Mom:

Good evening and happy Sunday y’all! This week has been a rough one for us emotionally and mentally. Still getting used to all the changes in nursing, therapists and trying to juggle doctor appointments. Trying to regulate eating habits, figuring out what works for us with schoolwork, wacky sleep schedules, the list goes on...

I met a mom of another special needs kiddo the other day at Memphis’ first baseball game as a part of The Miracle League (great organization by the way- it provides children of all abilities the opportunity to participate in playing baseball ️) and she told me that being a medical momma/momma of a special needs kiddo never really gets easier, it just becomes more normal and a little more manageable. And I’m seeing that she’s right.

On the 7th of this month it marked the 10th month after Memphis’s accident and it hit me hard, like a freight train. I think it hit me so hard because I realized that the longer this goes on the realer it gets. There’s no waking up from a nightmare. This is real. This is life. This is some heavy shit. Life will forever be different than it was before. There’s no going back. No wishing different circumstances into existence. Do I still pray and beg and plead? Yes, yes I do. But do I realize that unless God sees fit to bestow upon us a miracle that this is life as I know it? Also yes. I don’t know if I will ever be 100% ok with it but I can and am learning to live with it.

I’m tired. Mentally, physically, emotionally. There are no days off. Some days and some nights I’m all by myself. Just Memphis and I. And although I’m confident in my abilities to take care of an emergency should one arise, there’s always a slight fear that something could go wrong. I’m never able to fully relax, always on edge. Every beep, every alarm, every breath that sounds different from her vent- I’m always slightly anxious even if I don’t show it. Being a mom of a special needs child has been hard and I know I have a long road ahead of me. But no matter what I’ll always be grateful for Memphis. Thank you to everyone who’s been a part of our village and everyone who continues to pray, send positive vibes, and check in on us. Even if it takes me a while to get back- I appreciate y’all more than you know it! - Couldn’t do it without everyone!

January 2022, Memphis is featured in this article by People Magazine, please click on the link below to read it.

People Magazine

Update July, 2022

Hey y’all and happy Wednesday! Well it’s been a heck of a week…being in and out of the ER/being admitted to a room seems to be our normal as of late.

In this weeks episode of what hospital will we end up at this time- over the last few weeks Memphis was having a large quantity of blood in her secretions. Sometimes it was blood and nothing else. And no matter how long we kept her on her heater for the ventilator it just wasn’t keeping her airway moist like it should be. We were prescribed different nebulizer treatments, etc and it wasn’t making a difference.

We ended up needing to go to the ER down in Hollywood at Joe DiMaggio Children's Hospital last Friday due to an excessive amount of blood being coughed up. Turns out there was an infection (hard to avoid with these situations), excessive dryness in the airway which was causing the inside of her throat to basically molt and slough off which was in turn causing all the bleeding.

We are still here and both the ENT and Pulmonary departments are happy with how she’s looking. Thank God. This has been an ongoing issue and we are happy to be getting things under control.

We will be here through the weekend and for at least another week, maybe two. Memphis was slated to have her plastic surgery procedure for the wound on her bottom done at another hospital in St. Pete in mid August, but it turns out we will be able to have the same surgery done here on Monday. She will be here to recover for a week or so then be bed bound for another 2-3 weeks at home to recover in a more comfortable environment.

This admission was a blessing in disguise. We have been so disjointed with Memphis’s care the last 2 years. It’s been so hard to find the right doctors, therapists, social workers, etc and it finally feels like we are putting together a great team for Memphis and it feels good to have some continuity.

Update July 18th, 2022

Hello and happy Monday y’all! Whew- what a ride this has been so far. We have learned so much on this journey & we continue to learn new things every day.

As some of y’all know, Memphis was scheduled to have her bladder and kidney stones removed at the end of this month but the procedure had to be pushed back to the middle of August due to her pressure sore surgery. Last night the Dr. decided to go ahead and put two stents in her kidneys to prevent further blockage and buy us some more time for the procedure. That was done this morning. That procedure went well. She will have a Foley catheter in for about 2 weeks or so.

This afternoon she was wheeled back into the OR at Joe DiMaggio Children's Hospital to have her hamstring myocutaneous flap surgery. Basically what that consists of is they took a large chunk of vascular tissue along with muscle from her hamstring and brought it up to her wound on her right booty cheek and covered it. The surgeon showed me a picture of what it looked like and I have a strong stomach but because it’s my baby girl it made my stomach churn. It was a lot bigger than I expected and there were so many staples. But this procedure was necessary and they were confident that she will heal nicely and fairly quickly

This girl is a trooper. She is such a blessing and a joy. She was cracking jokes with the drs and nurses and all the surgical staff. She had such a great attitude and calm spirit about her. She said “mommy I’m nervous but I know that I need to do this and I’m going to be ok”! She is so smart and aware of everything. Just a few of her questions for the surgeon- “how big will my incision be”, “what will my recovery look like”, ”how can I prevent things like this in the future”? As much as I love that she asks all the questions, I wished she didn’t have to.

The staff here have all fallen in love with her and enjoy taking care of her. She brings a smile to everyone’s face and her sweet spirit and firey personality draws everyone in my girl is a fighter!

She is on strict bed rest for the next 3 weeks. This is gonna be rough. Especially when we are given the go ahead to go back home. Not being able to leave her bed will suck. She loves being outside and shopping and baking and all the things so this will definitely put a damper on things but we will make the best of it!

Update September 2022:

Good morning and happy Tuesday y’all! Took a longer hiatus from social media updates than originally planned- I was getting extremely burnt out from everything thing and I just needed some space but we’re back!

I feel like there’s so much to say but I’ll do my best at keeping it brief- so first thing’s first- Memphis has officially started homeschooling last month. We meet up with other homeschool families using the same curriculum 1x a week for learning, science and art projects and lunch/recess. Memphis is enjoying it and since the traditional school method is just not working out for us in this season of life it’s been good. Memphis will also be trying out the school at The Arc of Palm Beach County this week and seeing how she likes that as well. It’s a charter school dedicated to children that have more intense needs than the average kiddo.

We had the majority of her kidney/bladder stones removed at the end of last month but there are a few stubborn ones that they couldn’t get out. She will be going in for that same procedure again at the beginning of next month and if they can’t remove them by blasting them then they will make a small incision through her stomach and have them surgically removed. Praying this isn’t necessary but we shall see.

Memphis is healing nicely from her hamstring flap surgery from earlier in the summer and she pretty much has no more restrictions regarding being in her wheelchair other than more frequent pressure reliefs. She cannot move herself around to offload pressure to her booty etc so we have to just do that for her.

Memphis will hopefully be going back up to Shriners Children’s Hospital in Philadelphia for some extensive work using her diaphragm pacer coming up here soon so that will be great! Looking forward to getting her off the ventilator part time!

We will be going up to NextStep Orlando Paralysis Recovery Center at the end of October for a weeklong intensive PT stint. Super excited to meet the team up there and put in some work.
We have pretty much been without PT and OT for a few months now- super frustrated with that but we are back to square one where no one will take her because she’s on a ventilator. The only place we can get her in is at a therapy place allll the way in Melbourne. A hefty drive but we will make it work if we need to.

Memphis is still absolutely loving being a big sister and just adores her little sister, Ella Jane. She can’t wait to go on all kinds of adventures with her and explore and all the fun things with her.

Memphis’s service pup, Juliet, is still her trusty sidekick and is a welcome addition to our family. Still trying to work out some kinks as she’s still young but we are hopeful that they will be resolved soon!

Update October 17th, 2022:

Good morning and happy Monday y’all! We hope everyone had a beautiful start to a new week
So it’s been a very eventful couple of weeks for us. Not that that’s unusual for us at all. Quite the opposite actually- but so is life! I’ll give everyone a quick-ish update on everything going on over here.

We will start with the good…Memphis has really been struggling with reading and we had been on the hunt for someone to help us out with her confidence and her skills and finally found someone to help us out. We start this week and are really looking forward to finally getting the assistance she needs.

Thanks to a a recommendation from a fellow sci survivor and now friend, we have found a great PT that comes to us! We started with him a few weeks ago and it’s been great! We are lucky to Hebrew been able to add him to Team Memphis! Still looking for OT options and are exploring the possibility of adding aqua therapy as well!

Making friends and keeping playdates has been a struggle for us but over the last month Memphis has been able to cultivate a few new friendships and we’ve been able to keep the play dates so that’s been great for her. Hoping to keep up the trend!

Now to the not so great….Memphis has been struggling once again with some depression and feeling like she has a purpose. She’s getting older and doesn’t quite know where she fits in. Plus I think the reality of her situation has finally started to kick in and she’s feeling a little lost and losing some hope. She’s having a harder time with being motivated and quickly loses interest in things. She could use all the prayers, good vibes and encouragement you can send her way!

She made a few trips to the ER and we had a big scare last weekend. We continue to ride this emotional roller coaster that we don’t want a ticket for. Respiratory issues, reoccurring UTIs, etc are just killing us. It’s been a struggle to say the least.

Our big scare- On the 7th Memphis went in for a scheduled kidney stone procedure where they were just going to remove the rest of the fragments left over from the last procedure the month prior. (Side note- her kidneys were given the all clear now!) We ended up at a new and different hospital then we usually go to because both her Dr and the machine were scheduled to be there. The procedure went well but then came the recovery room. Memphis was struggling some to like be like herself. She has never had an issue with anesthesia before and her usual behavior is waking up after an hr, being a little tired but in a good mood. This was not this case this time. Worth noting that after they bring her to recovery they ask me to look at her vent and the settings looked a bit off to me but was assured that they were fine. They had a little complication with her trach in the OR, had to give her a breathing tube and change her trach but all was ok.

We gave her some extra time but after a few hrs they were like ok we gotta wrap it up so we got all her stuff ready and we headed out. On our way from the recovery room to the car, she was like “I can’t breathe, I’m struggling”. We do our usual stuff but she wasn’t really getting any better so we go right back in and head to the ER. They rush her back, we get X-rays, check her vent again, they keep and eye on her and she seems to be doing a little better. They said that she was good to go after a few hrs and we are sent home. The ride home was fairly uneventful just super restless and her breathing was still off and I could just tell she wasn’t herself. But still couldn’t quite figure out what it was that was going on.

That night and into the morning her HR was sky high, her O2 says we’re all I’ve ether place, her respiratory rates were going from 6-32, her blood pressure was all wonky, she started hallucinating, her anxiety was through the roof. We tried to manage the best we could with the new at home nurse we were given but early Saturday I knew in my gut that we needed to get her to a hospital. We called 911 and they rushed her to the ER close to home. While we were there has had a fever then her body temp dropped to 93. They gave her some warm liquids, gave her an antibiotic and heating blanket. They were treating for sepsis. Meanwhile she remained not very responsive and her breathing was still off and she was just not ok. We knew we wanted to be transferred to the hospital we were most comfortable at which is Joe DiMaggio CH. So finally their critical care team got there and transported us to their facility.

We make it to JD and the staff knows her and the respiratory team are aware of what her settings were supposed to be, etc. Not long after getting there it was discovered that her vent settings were not what they were supposed to be and that it was causing her some major issues. They changed them back and after a little while she started coming back to a more normal state. Our stay there was extended a few days due to some bacteria growing in her trach causing a slight infection - unfortunately the nature of the beast with the trach

We ended up coming home a few days later and she’s is much better. It was so scary and traumatic for her, myself and my family. I remember on the way to JD in a moment of being more aware Memphis looked at me and said “mommy I’m scared and I don’t want to die yet” and I reassured her she was ok then she kinda slipped back into her weird state. I hope to god that nothing likes this happens again. I don’t know if my momma heart can take anything more.

Memphis H.

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