Rhanas Journey
Strength is not always measured in muscle
 
 

"A positive attitude makes all the difference."

-Rhana (December 26th, 2012)

Rhana Serene Fleming - Age 12 - Suddenly Paralyzed from the neck down, December 15th, 2012 

What's happening to Rhana and Updates (newer updates are at the bottom of the page)

 Please refresh your browser page for new updates

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On December 15th, Rhana Serene Fleming was running her warm ups in gymnastics when she started feeling her arms grow heavy. Within 4 hours her diaphram stopped working, she stopped breathing on her own and her arms and legs were unable to move.

This is the beginning of her journey.

We don't have a diagnosis yet. The doctors are describing her situation as Transverse Myelitis.

"Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflammation, that is, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body"

As it stands she is undergoing PlasmaPheresis

"The basic procedure consists of removal of blood, separation of blood cells from plasma, and return of these blood cells to the body's circulation, diluted with fresh plasma or a substitute. Because of concerns over viral infection and allergic reaction, fresh plasma is not routinely used. Instead, the most common substitute is saline solution with sterilized human albumin protein. During the course of a single session, two to three liters of plasma is removed and replaced."

She is also being hit with 1G of Steroids a day.

She has had 4, 3 1/2 hour MRI's, all showing swelling and inflamation of her spine. .

She has had 2 spinal taps.

We still do not know what caused this reaction in her body. We may never know.

She's gaining the attention of Neurologists and the CDC and the international medical community due to a few factors:

1. Her age. She is 12 years old. Myelitis usually affects older people with various immune issues.

2. Her good health. She is an athlete that takes her nutrition and exercise very seriously. She did NOT have an immunization or a flu vaccination prior to the episode.

3. The speed in which she deteriorated. She went from A to Z in hours.

4. Her Spine. Normally with similar conditions only parts of the spine are affected. Her entire spine is swollen. C1 to L5.

5. she did not respond to aggressive treatment

Her case is so rare they have no medical papers from which to pull information from. There are similar cases but none like hers. Doctors are currently writing about her case from all over the world.

We do not know the extent of her damage. We will not know until the swelling goes down.

Will she breathe on her own again? We do not know. Will she be able to move again? We do not know. We know we have a long road ahead of us. We hold faith that she will be back in the gym. She makes progress every day and every moment is celebrated!

As she said on day 10, Christmas Day 2012, "I did not become a gymnast overnight, it took a lot of hard work. I'm not afraid of hard work, Mom."

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Update December 28th, 2012

Today is Rhana's last Plasmapheresis treatment. She asked the nurses if she could keep some of her plasma. She wants to do a video report for her Science class.

After this treatment we will begin her IVIG (an antibody treatment)

 

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December 29th, 2012

RHANA MOVED LAST NIGHT!!!!! SHE MOVED HER RIGHT FOOT!!!!

The whole ICU Cheered! I sob as I write this.

Dear Lord, I drop to my knees!

She's resting today, when she's quiet and staring at the ceiling I worry she's pulling away but she was using her energy to concentrate! Tears of joy are flowing all around! We have a ways to go but this is a huge step! It means her spine is getting signals all the way to her toes :)

December 31st

Sorry I haven't updated in a day. We've been busy! Rhana was able to kick the Physical Therapists hand away with her right foot. Her range of motion is phenominal. Her left foot needs a bit more work but her muscles are engaging! Tomorrow they are going to attempt some breathing trials. She's getting impatient with the progress, that it's not moving fast enough, but she's using that momentum to push forward. It is awesome to watch her hard work and dedication. Her strength is awe inspiring.

Her family, PT team, doctors, friends and even strangers are all rooting for her. She is a rock star.

Thursday we trade out her temporary trache tube for a new one. Then we move on to swallow tests which I don't think will be an issue, she's been swallowing this whole time. That coca cola is getting closer, baby!

Oh! Her shoulders are shrugging more and more every day. Today has indeed been a great day!

Thank you to all of you who are taking the time to follow her progress. Your words of encouragement mean the world to her. We read them every night and regardless of her mood they put a smile on her face. THANK YOU!

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Today is January 2nd, 2013

She had a therapy dog come and sit on her bed with her. I think I'm going to get our dog's nails clipped and bring her in. She is a Chihuahua named "T". Rhana smiled and said she needs to take some serious classes first as she can be quite hyper and loves to lick nostrils!

We continue with physical therapy and OT. She's getting stronger everyday. I think PT is the key as she feels like she's doing something, moving forward. We're looking forward to rehab. The sooner we get there, the sooner we can bring her home. The day we bring her home will be the happiest day of my life.

Tomorrow she gets her first trache change(the breathing tube in her throat). This is exciting because it means she is mobile. Tomorrow we can start her swallowing tests.She changed her mind from a Coca Cola to lemonaid. I don't blame her, lemonaid is my favorite too.

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The fabulous people at Children's Hasbro have given us the vet info to bring T in! T is Rhana's Chihuahua. I know that seeing T will bring her great joy. I think I'm going to make it a surprise. I know T misses her terribly and will be very excited to lick her face! hehe Get ready Rhana! T's got a lot of pent up love to give! :)

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Today our dog Titty (yes our dog's name is Titty) was able to visit. I was nervous because T is an anxious dog with a tendancy towards the high strung. She approached Rhana with such gingerness and care. She stopped and checked out her ventilator before giving her the most tender of kisses. She then went to town licking her hands and arms and fell fast asleep.

You can see the video here:

http://www.youtube.com/watch?v=fCugSUoha4s&sns=fb

Titty the therapy dog? Who knew. Might have to change the spelling of her name to Tiddy though, just for formal records ;)

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We were informed that in order for her to do her swallow test she'd have to be sitting up. The last time she was sat up her heartrate took a scary dive. She asked to be raised up immediately. They raised her bed a little at a time. They stopped at 40. She asked to go to 50. All the while in level 10 unimaginable excruciating pain. She is determined. She asked what angle "wheelchair" ready was.

Today is January 6th. We've been here 22 days. Her right leg gets stronger every day. She's also shrugging her shoulders really well. I watch her at night. Flexing and testing. Trying and visualizing. She can point her right toe and lift it back. She does this even in her sleep.

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She was put on her mobile ventilator today. It was uncomfortable. They wanted her to manage at least 10 minutes, she went for 30. She knows this portable vent is her ticket out of here and she can't wait.

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When we first came in anything cold on her hands and arms burned like fire. Ice cubes burned her. Today she asked me to put an ice cube on her hand and it didn't burn. she said it was warm. Progress :)

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January 7th

She's in the pink chair! She's sitting up :) They deflated the cuff (balloon filled with water) in her trachea a bit and she's able to make sound! Her first words, "I sound like a monster, think I can get a job on the simpsons?" ha! She's having a great day! We're still not sure what time the swallow test is but the nurse said that seeing as she's in the pink chair with wheels... and can tolerate the mobile ventilator....let's go for a spin?! yay!

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 The swallow test was a huge success! She was able to drink fruit punch and eat a whole container of chocolate pudding! Best. Pudding. EVER!

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Today we're dressing in warm clothes. She wants to go outside and feel the air. Off to walmart I go to find some warm woolies!

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January 13th - Rhana is able to eat real food now.  She is eating pizza, spicy chicken from 99, and all the things she loves. I make red velvet and cookie runs at least twice a day!

Liquids have to still be thick, and we use a powder to make them thicker. It's called "Thick eez" and the only thing she can enjoy with it is cranberry juice. The milk, eh, not so much :)

She also has been on a "tilt table" where she is strapped to a board so she can "stand up" - she kept saying "higher, higher" which nearly gave me a heart attack. She joked that she was as tall as her daddy now :)

We have a new room in the ICU at the hospital and it is a bit nicer.  There is more room and she can keep an eye on the nurses.

The pain is still the main issue and the doctors are working on that as a priority. There is little improvement in her movements but the movements she does have are getting stronger everyday.

This recovery will take time and hard work on her part.

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With regards to the pain I think we're getting a handle on it *crosses fingers* She can focus on her recovery instead of the pain now...and red velvet cupcakes ;)

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A few days ago she was in the pink chair and sprung from her room. When asked where she wanted to go she asked to go to the gift shop. The nurses asked what she wanted to buy she said she wanted to, "get a stuffed animal for all of the other kids in PICU" We bought 8 and delivered them.

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January 15th

Yesterday they asked her to try and push back when they sat her up and she did! The physical therapist was speechless :)

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We were in the middle of eating chocolate chip cookies dunked in milk when smiled and said, "Look!" and low and behold she was moving her left foot! I nearly choked on my cookie.

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She is very worried about falling behind in school so the great people at http://techaccess-ri.org/ are working on getting her set up with a machine that she can manipulate with her eyes to keep up with her studies. How cool is that? Then maybe she can "update the site herself" she says! It bothers her that she can't respond to everyone's wonderful comments. She won't let me do it for her, she wants to do it herself. Someday soon you'll get a message back from her and that will be a wonderful day because then that means she can communicate aside from quiet whispers and lots of lip smacking :)

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Today in PT (Physical Therapy) they hoisted her up and put her in a rockin' wheelchair.

 

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As Rhana lay sleeping a nurse in training gave her a manicure. The air in the hospital is so dry, keeping her moisturized is a concern. Rhana woke up delighted! She will make a fabulous nurse one day.

1/18/13 Today we checkout a rehab hospital for Rhana, we will be glad to get her out of the ICU.  Thank you all for your donations and words, it helps a lot.

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A local tape artist came by and jazzed up her room a bit :) Thanks http://www.facebook.com/TapeArt

Thank you!

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She was able to hold her head up and look left and right for a total of 25 seconds!

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She is able to arch her back and the neurologist noticed muscle movement in her right arm.

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 She pushes herself so hard and the cost is so high with regards to pain. I think tomorrow I'm going to insist on a quiet day. Minimum intrusion, light stretching. She had a rough one today. She was in the pink chair all day yesterday and the wheelchair all day today and the price was head popping pain.

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Her gym is selling t-Shirts for her care fund

http://www.sierrasstudio.com

T shirts her gym is selling <3

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She has been approved for popcorn! Tomorrow I'm taking in some and some nacho cheese too. She loves dipping the popcorn in the cheese :)

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January 19th

Yesterday we toured a rehab facility. Hospital For Special Care in Connecticut. http://www.HFSC.org

What a beautiful facility. With the many pools, gyms, library and media rooms it's a place built to promote healing. It's open and airy and most of all it's QUIET.

I think it will be good for her to talk to someone that actually knows what it's like to not be able to move or breathe. There are people there with similar stories.

She has been in the ICU for 42 days now and it's starting to show. It's not a place where your privacy is respected. It's not a place of rest. It's time we got her out of there.

This mural will be outside her room at rehab

 January 21 - We signed the contract for Rhanas elevator, the cost was $36,000 but contractor donations (Thank you Jeff Smith) have brought the cost down to $19,000, we still need $12,000 in donations to pay for this essential item.  Please help us get Rhana her elevator donate today.

 

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January 22nd, 2013

Today was our last day in ICU! She has been greenlighted to leave for rehab tomorrow!

with her PT and OT team. To hold her head up and smile took such effort but she did it. She's a bit nervouse about leaving the ICU, this has been her home for over a month and she's grown quite fond of some of the staff. Our Christmas card list has grown substancially!

To hold her head and smile took such effort. We're green lighted for rehab tomorrow.  Thank you ALL for your many blessings. There are no words..

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January 23rd, 2013

 IT'S REHAB DAY!!!!!!!

Here she is with our most favorite Dr. Dr. Anderson.

(You better come visit us, Dr. A!) We love you!

We love you Dr. Anderson! <3

Rhana and her favorite nurse, Nurse Jess. We love you, Jess!

Thank you nurse Jess we love you!

Rhana and her 2 favorite Marks <3

The 2 Marks <3

Nurse Maureen and Nurse Tara

Photo: Nurse Maureen and Nurse Tara

Getting ready to get our hair washed and get our jammies on for the 2 hour drive to Connecticut :)

 

We're bustin out of this joint!

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Welcome to Rehab, honey.

The longest wait in my life...

Waiting for her

She has arrived!

Welcome to Connecticut honey <3

Welcome to Connecticut, beautiful!

Checking out the new digs.

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January 26th

Nurses and Nurses assistants know how to position you so well here. They put you in such a comfortable spot you slept better than you have since this started. Your first night here they assessed you and let you sleep. You woke up today looking better than I've seen you look in a while.

Today they gave you a new trache. They also have a chest strap so your tube doesn't move and they also tape down your trache so it doestn't pop off. Your first night they gave you a call button so you can call the nurse. When your alarm beeps there are 5 respiratory therapists there in a heartbeat.

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January 27th

When you got here you were very dehydrated. They are giving you fluids. Your secretions are no longer pink with blood. There is no water in your tube that is dumped down your trache whenever you're moved. They took you off oxygen and have you at room air and your number has remained steady at 99.

Your heartrate at rest is the lowest I've seen in a while.

You are not only well cared for but loved here. These people all love you and are eager to get you well.

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January 28th

Today was the first day you asked to leave your door and curtains open. The fellow tennants have been wheeling by in their various mobility devices. Patiently waiting for you to emerge. You are the new kid on the block and they are eager to meet you.

You asked if you could get into a wheelchair today! The nurse said, "I was hoping you'd ask that" and immediately they got you into one and in the common room. Yours isn't as snazzy as everyone elses but it has a spot for your vent and it's got wheels!

The process for getting you into and out of bed is so seemless and stress free here. These people have got it down.

Your pain has diminished signifigantly. I don't think you'll be needing that IV for your breakthrough pain med for much longer. Thank God for this place. I truly believe the care and the compassion and the competence in which they handle your situation has made your stress decrease and therefore your pain is subsiding.

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Last night you and a fellow tennant "K" had a chocolate chip cookie date in your room. You guys watched Annie. You asked "K" questions that only she could answer. "Are you bullied in school?" "yes, some kids are very mean" :( As a mother I wanted to hug that girl tight. How do you explain that some people have handicaps far beyond the physical? I gave them both another cookie. Rhana and K are becoming fast friends. K is also 12 and in the 6th grade.

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She passed her final swallow test!!! You know what that means? She can now have that Del's lemonaid! If only it wasn't January ha!

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Since she got here they have given her breathing tests. Today her inhale was 20. She came in with a 5. They are gearing up to start her on a breathing regimine that includes time off the vent. Today the Dr. asked, "You ready to get off this vent, Rhana?" you looked at him with tears and nodded yes.

 New jammies, net trache, new beginning :) the people here are beautiful and know what they are doing. Her lung function is already improving.   She met a fellow tenant who is also 12. Rhana and she are going to sing karaoke. <3  They've already begun teaching her breathing techniques, one for using the breath activated wheelchair which she is excited to get into. She asked what happens if I sneeze? lol

The Ocupational Therapist asked if she would be interested in a system that used a blow/sip technique to turn her tv on, change the channels and turn her lights on and off. She lit up the room with her smile.

They are working on getting her into a motorized wheelchair. Because she only has slight movement in her arms they are going to get her a "blow/sip" activated chair. This is the first step.

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They set her up with an ipad and a stylus

 She is able to watch netflix, tonight she wants to watch the shining. eeeek!

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Her uncle Shawn came to visit from Los Angeles. He is a guitar teacher at http://www.truetonemusic.com/ and is friends with Sinbad. Sinbad did facetime and made her smile while Uncle Shawn played guitar for the whole unit.

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January 30th

Today they got her into the shower. Because her condition causes cold things on her skin to register as hot, the water temp was tricky. They figured it out though and got her comfortable and clean. They braided her hair and did her nails, too.

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Her breathing test this morning came back with awesome results. Her numbers have quadrupled since she came in. They are eager to get her breathing on her own again and her lungs and diaphram are ready.

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They took out her final IV! This is huge. She no longer needs break through pain medication <3

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Monday February 4th, 2013

Today is vent weening day! Despite tears she was able to be vent free for 45 minutes! For the first time since December 15th our beautiful daughter breathed all on her own. She said it was a lot like that day, lying on that bed with her breath winding down. Only this time her breath was winding up :)

We can't thank the staff at HFSC.ORG enough, if it wasn't for their process she would be on a vent for the rest of her life.

It is an exhausitng process. When she was done she napped for 2 hours. She was upset she had missed her afternoon PT.

Sleep well baby doll. You worked hard today. <3

Sleep well, darlin. You deserve it, you worked hard today. Physically, mentally and emotionally <3

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Tuesday February 5th, 2013

Today she went vent free for 2 hours! She is determined to get off this thing :) She was reluctant to go back on but she was barely able to open her eyes she was so tired. Relearning how to breathe and using all those muscles takes its toll. Just like her legs and neck and back and arms it's just a matter of building up her endurance.

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Thursday February 7th, 2013

Since we arrived here there was a certain amount of chair envy. Hers wasn't motorized because she is imrpoving with her feet and arms and neck, the staff didn't want to set her up with a system for locomotion that didn't suit her. There is a wonderful boy here "C" that drives his chair with his toes!

Well today that changed! She's mobile now and so happy! It's a loaner chair but it has all the bells and whistles. She drives it with her chin!

She's mobile ;)

Here's a video on her facebook page

 

 

She has a lot of work to do to get better.  We are trying to get our house set up with the elevator she will need and a bathroom she can use.

DONATE ONLINE AT (all donations matched by the eMarketing Association, made through its site) http://emarketingassociation.com/TeamRhana.

2/12/13- Rhana is breathing on her own for about 4 hours a day now.  It is hard work but eventually will get her off the vent. We are working hard to try to get the house ready for her.  The elevator, special bed, van and special bathroom are big projects. Yesterday she was in a lot of pain so she could not go in her chair, but did her breathing rehab in bed anyway. Thanks to everyone for the support we love you.

 

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February 14th

Happy Valentine's Day <3

Today they have her off the vent for 12 hours. It is exhausting but she refuses to back down. They are also setting her up with a valve so she can speak while off the vent.

She continues to get stronger every day. We have new muscles engaging every day. Most recently it is her right bicep. It will take time to rebuild strength but the fact that her body is making the connections is huge.

2/18/13 - She is scheduled to be off the vent for 16 hours today.  She has a slight infection though so that may have an effect.  Please go to Facebook and search for Rhanas Journey and join.  Thanks to all for the support and donations. 

 

This is just ONE bill estimated expenses this year are now over $2,000,000.

 Your donations are really important, appreciated and will allow Rhana to have the wheelchair upgrade she needs and the rehab to her future.

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February 24th, 2013

She is vent free for 12 hours a day now. Her stamina is growing. She is also able to speak, albeit softly, with her Passy Muir valve. Her voice gets stronger everyday.

Next week they are going to go for 16 hours. While this is an exhausting process she is doing everything they ask. Her numbers remain strong and we're moving forward.
Yesterday they put the electro stim on her left arm and got a response from her left bicep! Her left arm up until now had shown no connection but it is coming back as well.
This is not a fast process but things are moving in the right direction. Her body is making those important connections. It's just  a matter of gaining strength and building endurance.
She was singing kareoke with the other patients the other night. Her voice was so sweet and soft. A beautiful voice!
<3
We've started on her new room. Next week the construction of the elevator begins. I created an inspiration wall. All the beautiful cards and notes everyone has sent are here. We're quickly running out of wall space! <3
Rhana's new room transformation begins. Inspirational wall of love and support.
Her cheeks get flushed if there is any pain or any issue in her body. It can be anything from a headache to socks that are too tight. This is an autonomic response common in people that have had spinal chord trauma. Headaches are a daily occurance. Motrin and a nap are in order. Take a break, darlin. You're working hard everyday. It's important to rest too.
Her cheeks get flushed when pain is coming on or if there is any issue. it's an autonomic response common in spinal chord injuries. In this case it was a headache and Motrin took it right out. Whew!  The blanket was a donation from the local Girl Scout troop <3
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February 28th
T gets into the Team Rhana spirit :)
Team Rhana :)
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March 1st
Today was a rough one. Her Co2 levels were quite high. Meaning she is not taking deep enough breaths. She had to go back on the vent. Needless to say this upset her a great deal. We explained that like her muscles she needs to condition her lungs as well. Vent weening is a process and we want to do it safely. Tomorrow we'll take her off the vent but really monitor her levels closely.
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March 14th
We have wiggle in the left hand! As with her right it started in her pinky and ring finger. Her right hand she can now turn over and back and reach across her chest.
Her right leg is strong. She can kick up and point her toe higher than I can. We joke that her right side is in Rockettes shape. Her left leg gets stronger every day.
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March 15th
Her co2 levels have been erratic. With high co2 you become tired and have flushed cheeks. While she is capable of breathing on her own she sometimes hits high co2 numbers and has to go back on the vent. Like everything else it will come back at its own pace. It's frustrating but a process we need to be patient with. We don't want to take big steps back but rather little steps forward. It's important she be safe and healthy and if that means being on the vent for the time being that's ok too. We'll get there :)
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March 16th
We have a demo van coming to show us the ramp system. I have 1 more trache change and I can take her out of the unit. It's 1 step closer to bringing her home.
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Next week she has an MRI. Not her favorite thing to do as she has had rough experiences with them in the past. She was able to talk to some of the other kids on the unit about MRI's. They were trading war stories. I'm glad she is able to talk to kids her own age that have similar needs. Most people don't have any idea what it takes for these kids to get up every day. The process alone takes anywhere from 30 minutes to an hour. And every day they do it with a smile.
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Her Dad is setting up a foundation in her name that she can run. When all is said and done we want to be able to help others. Giving back has always been on our minds. Being in a position of needing help isn't an easy one. When we told her she got very excited! She said, "I can turn a negative into a positive, Daddy! I really want to help kids, especially kids with traches" Our focus will be pediatrics. Hopefully, one day soon, we can have a simple velcro strap in every PICU so trache tubes don't pull, dump water down kids' throats or pop off.
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She is starting to take interest in her phone again. At first it was hard for her to reconcile her old life and her new life. She's sad she is missing so much school and gymnastics meets. But she's starting to turn the corner on that. Working on her foundation is giving her purpose. We're going to get her a voice activated recorder so she can dictate what she wants to say as typing with your mouth can be slow.
She can still play Angry Birds though ;)
She's trying to text ;) we offered the iPad but she wanted her phone. There's a learning curve but she's determined.
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We are off Prednisone! Yay! her last dose was 3 days ago. It will take months for the effects of it to finally leave her body but it's one less pill and her "puffy face" will start to subside. We're coming down on all her medications. We're getting closer to being on a chewable vitamin only. That will be a great day! All these medications have horrid side effects and the withdrawl has it's own effects but we're getting there.
Inch by Inch, we're getting there. :)
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March 26th
Today we're taking a ride in the ambulance again to get an EKG. Her heartrate has been a tad wonky lately and we want to make sure everything is ok. We're also going for her MRI on Friday. Some pain is returning and her appetite is down but we're taking it as it comes.
 keeping the momentum. While her legs and arm and back get stronger the price is muscle spasm and pain. That's an unfortunate part of this journey. Trying to ween from the methadone will be a long process and methadone is a respiratory depressant so trying to find the sweet spot of minimal pain and progressive therapy is a tough one.
We try to break up the days with visits from her dog T
Dog therapy
T always puts a smile on her face. Nothing like dog slobber to take your mind off things.
Kisses <3
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March 27th
Her heart is strong! The EKG test came back very well. No issues and her circulatory sysyem is in tip top shape. All those running laps in Gym her coaches made her do really came in handy. ;)
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March 28th  Admitted to Hartford ICU critical with bone and kidney issues. Acute.
:(
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April 1st
Rhana still in ICU. Administering a calcium binder to bring her calcium down. Her kidneys are struggling. Being in bed and not in her wheelchair is driving her nuts. Appetite still down.
MRI of her brain came back normal! :) Her spine came back "Markedly improved" yaaay!
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April 2nd
She woke up hungry!!!! Her calcium is now normal as is her kidney function! My girl is feeling a lot better! They are readmitting her to rehab! It's great to see her smile! No more belly pain, no more searing muscle spasms, no more awful headaches. High calcium really does a number, finally something we were able to diagnose and fix! <3
<3
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April 4th
It's back to rehab day! :) She is looking forward to seeing her friends and the wonderful staff at Hospital For Special Care. She can't wait to get back in her wheelchair and she's even looking forward to PT and OT ;)
Getting ready to head back to rehab :)
Much like the crab in Finding Nemo, when Nemo first enters the fishtank, the staff will set her right and she'll be clean and happy and well taken care of :) It is indeed, a GREAT day.
April 9th
 Today my daughter really showed me what it means to be selfless. There is a new patient in rehab. She didn't want to do her PT, to get up and walk a few steps. Her mother and therapist were trying to coax her and Rhana wheeled up to her and said, "you can do this, I'll walk with you, you got this. We'll do it together." The girl got up. Walked many feet with Rhana right by her side. Coaching her and cheering her with every step. I was amazed and so proud of my strong, beautiful daughter.
April 12th
The wonderful people at https://thefairwayfoundation.org/ have donated a wheelchair  

accessible van!!!!

This is HUGE!!! This means we can bring our daughter home safely and the money saved can go towards her wheelchair and hoyer lift! We got wheels!!!!

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April 13th

The spaghetti supper was overwhelming. Seeing the support of my community made me realize just how much I love Rhode Island.

Photo

Rhana was able to attend via ipad

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Thank you South County Movement Center and Miss Donna and all of the wonderful volunteers.

Your the best Miss Donna

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There are no words. Rhana asked her daddy, "How can we thank them all?" We'll find a way, honey. <3 There are more pics on her facebook page.

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April 18th

Her elevator has arrived!

Elevator delivery

 It's here! When this gets done I can finally start on her room. Can't wait to bring her home. We're getting there darlin!

Construction begins tomorrow. Once this gets in we can focus on her room. One step closer to bringing our girl home!

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Her legs are getting so strong now! Her right arm she can bring her hand to her mouth enough to bite her nail! Her nails are so long and pretty now and it's been driving her nuts! Last week she needed the assistance of the myomo to do that! Now she can do 2 reps of 10 without it :)

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At the end of last week her calcium number started rising again. She was very disappointed in that. She felt she had beaten it, cleared the hurdle.Thankfully, we caught it before the symptoms of high calcium became too apparent. We've given her a second dose of the calcium binder and her numbers are normal. It's something we'll keep an eye on but for now, her numbers are normal! We'll take normal!

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Her wheelchair has arrived!

Photo: New wheelchair

It's a lot more compact and since she is able to move her legs she has switches at the knees.

She can also access bluetooth, a computer etc. We're working on getting the seat just right but this is the one we'll be able to bling :)

 

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April 24th

Today they sat her at the edge of the bed. The PT said, "ok, I want to see what you've got. Find your center and I'm going to let you go" She found her center and she let go. My girl sat unsupported for 30 seconds. Back, head, neck...all on her own!!! The smile on her face brought me to my knees. The pride she felt in herself was amazing. My girl is getting stronger every day. She is finally seeing the progress. She said, "I feel stronger, mommy. I can see my recovery now and how far I've come since December 15th"

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April 29th

 Construction has begun on her elevator! Because of the generous donations from people like you we will be able to bring our daughter home safely. Out of the rain, sleet and snow. This is a big step in bringing her home. <3

Photo

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April 29th

HAPPY BIRTHDAY ROBERT!

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May 7th

Today the pedi unit had a Poppin Pedi Picnic. :)

It was a beautiful Spring day. Feeling the sunshine on our faces felt so good. Rhana rocked the shades and notice the lack of tubing? That's right. outside and off the vent. She is up to 12 hours vent free with no co2 issues <3<3<3 We can only pray this trend continues.

Enjoying the sunshine :)

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May 10th

 Today is going to be a rough one. We have been monitoring her calcium levels and they are trending up again.

She will have to stay in bed and have an IV treatment again. It's so disheartening because once she starts feeling strong and well this issue comes up again. Once we think we have a handle on it, it rears it's ugly head. We're using a different calcium binder this time, one that will hopefully stick. Her body will eventually figure it all out but in the meantime high calcium causes muscle pain, upset stomach and lack of appetite. They haven't seen levels like hers. She continues to baffle top doctors. She is trying so hard.

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May 16th.

Rhana has been off the vent for over 30 hours, a major milestone! She's been plugged. The vent is out of her room. She was very nervouse sleeping off the vent, afraid she would stop breathing. I told her, "Honey, mommy is right here, I won't sleep" With that she fell into a deep sleep and I stayed up all night. Watching her, marvelling at her courage and strength.

No more tubes, she's been plugged <3

Notice the plug? That's right. And because I can amboo and suction and do emergency trache care, I can take her anywhere. We walked the grounds looked at the koi and sang. It is a beautiful day to be alive.

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May 28th

Sorry for the delay in updating this page. Rhana is making such strides we're running around like chickens with our heads cut off trying to get the house ready. At this point she is out pacing us and it's making me a wee bit frantic. The elevator is installed, the bathroom gets started this week, the ramp and pavement are starting next week. A lot going on. My baby girl is coming home!!!!!!!!!!!

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June 22nd

I have been remiss in updating this site. For most recent updates please check out her Facebook page. The link is at the bottom.

There have been many things going on. First and foremost she is coming home in 4 days! I've been running around like a chicken with my head cut off trying to make things safe and clean and ready for her.

It seems like the last week she has made great strides in her recovery. She took 10 steps today! She stood up! There is video on her facebook page. We are so excited to be have her home. He older brother sips off to Basic (RI National Guard) on July 3rd so she will be able to spend some time with him before he leaves. I can't wait to get her fed and laughing. There's nothing like home and I know she will recover faster being here.

Once we get her settled we're having a big party. Everyone is invited. We'll have a bonfire and a band! Lots of food and love to go around. I hope you can make it.

4 more days and she's coming home!!!!!

She's very excited to be coming home! ?

_________Rhana has been home now for three weeks and loves to shop.

______________________________Rhana with her mom and at the Rhody Rocks for Rhana Concert

Rhanas with the Gymnast team.

 Rhana nad her brother on July 3rd right before he went for Basic Training for the National Guard at Ft. Leonard Wood, Mo.

We him and are proud of his service to his country.

Rhana and her friend Trevor at the Rhody Rocks for Rhana Concert.

 

Rhana taking a break in front of her new computer, she uses her toes to operate it. July 23, 2013.

 

Right before her speech at Rhody Rocks on July 7th. It was a great concert.

JULY update: Rhana home.  The folks at Home Depot, donated a new bathroom, and is is fantstic.  Her elevator is working, and is doing well.

 

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September 19th, 2013

It's been a while since I've updated this site, my apologies. Rhana is home now. She is making great progress and finally eating well. Her younger brother is still pestering her and that is refreshing to see. We're about as normal as we can get.

We are having a hard time finding adequate nursing so her dad and I have been managing her care (hence the delay in updating her site) it is exhausting but we're finding our groove. Insurance (Blue Cross Blue Shield of RI) initially approved 24 hour care when she was discharged and after 12 days they cut it to zero even though our policy clearly states we are covered for 8 hours. Trying to deal with insurance, lack of nursing, care for Rhana and her younger brother and work and home has been a difficult process to say the least.

Rhana's progress continues to move in the right direction. She has had her trache removed and her GTube. Both were very emotional days for all of us. That battle has been fought and won. Her trache scar is a badge of honor and if you ask her to she will show you how she can make it wink ;)

She is attending middle school twice a week, she's upset because she wants the full schedule. I have no doubt she will get there but we need to make sure her stamina is where it should be before we push any harder.

PT and OT continue to be amazed at not only her progress but her attitude. Her drive to succeed far exceeds anyone I've ever met. I often laugh and say that if I had her drive the house would be a lot cleaner! She is able to stand and walk with assistance. Her legs are strong but we still need to work on trunk and core strength. Her right arm is making great progress, she can itch her eyebrows which brings her great joy. As of last week she got some wiggle in her left fingers. Her left arm has been a slow poke but it's showing signs of recovery as well. I have no doubt this girl will be up and dancing in now time. It's just going to take time and hard work. I often say it's like watching grass grow. If you sit and watch you'll never see it grow, if you go away for a week and come back you will see it needs mowing. We try to set goals, small and large. We utilize her right foot to draw, paint, type and write. We listen to a lot of music, we laugh a lot and we try not to take things too seriously. Nothing is a set back if you continue to move forward. That is our motto. Life may not be easy or what we planned but life can still be fun.

Now that things have calmed down a bit, we have our schedule, I will try to update this site more frequently. Her journey is not over yet. We still have a lot to share and discuss. I encourage you to join her facebook page as it's easier to post videos of her progress there. In the meantime, we thank you for the support and appreciate your kind words. All the best, Cheryl.

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November 12th

This morning as we were getting Rhana ready for a theatre field trip to Trinity Rep Low and Behold she stood up all on her own!

 

December 15th, 2013 (One Year Anniversary of onset)

What a difference a year makes! When I think about where we were 365 days ago I look at my beautiful daughter now and stare in awe. She has overcome so much. She went from not able to move, in excruciating pain no medication could touch, unable to breath or eat with 2 tubes down her throat, a machine driving air into her lungs, 5 IV's, and totally aware. We didnt know what our future was. She coded at 3:20 in the afternoon. I watched my daughter stop. I had lost her. By the grace of God I got her back. Every day since is a blessing. Even those tough days. days spent with pain. Days of calcium treatments, days of hoyer lifts, days of CO2 issues, spent sombulent and out of it. Nights awake and alone and in pain in a hospital or rehab.

She became strong enough to leave rehab and come home.

She overcame the breathing machine and said goodbye to her trache.

She learned to eat again and said goodbye to her gtube.

She's learning to walk again and has stood on her own. Last week she took 2 steps. Unaided.

She has come far. She goes to school, the movies with her boyfriend, the mall. She grocery shops and still manages to give us all a run for our money. ;)

I do not look back on that day and mourn what was lost..I look back on that day and thank God my daughter made it through that awful day.

Today she spent her "Crappyversary" at the movies with her boyfriend. They saw the Hobbit and she gave him a birthday present. She came home, had dinner with her family and is getting ready to have a nice hot shower. I told her, "this time last year you didn't have a boyfriend

 

Our life will be forever changed because of that day. We do not mourn, we are thankful she is alive and try to focus on the good. The accomplishments, the time spent together. We have a life to live. Whether they are good days, bad days, hard moments and pain, exhaustion and heartache, frustration and dissappointment, joy or sadness... it's still a beautiful life.

 

"She taught us to be strong in what we do. Now she needs the same in return"

The Fierce Five - the artistic gymnastics team that won the second ever gold medal for the United States in the women's team competition at the 2012 Summer Olympics in London.