Momma Fran: daily update

Hello Everyone !
Marqus is still hanging in there. He is on the medical floor trying to walk with PT daily . Bone Necrosis is painful and his hip and lower back are very painful.
Good news his sister is working her magic in his room . Often folks don't realize all the changes that are need when a persons mobility is affected by injury or illness.
Dead bone depending on location is fragile painful and can be debilitating.

Good news is they let us bring the pups to the healing garden area to see him!!!
Chewy wanted to jump in his lap Trinity was wagging her body.
I'm sure if they could have gotten their 90+ pound bodies in the wheelchair with him they would have.
New mission to prove medical need for Marqus to keep the topical Oxygen therapy boot. This device healed his skin in 6 weeks . The horrible pain was reduced in the ankles. The right ankle doesn't even hurt anymore.
Just like when he needed knee surgery we may have to fight .
Sickle Cell has for many years borrowed treatments from other illness and hope they work. Certain therapies readily used for other conditions per the insurance can possibly be experimental
for Sickle Cell persons.
Sickle Cell has generated over 1 Billion dollars in health care costs to me that says better care, more research and more recognition for the illness is needed. Please keep following I will try my best to keep up with posts.
More pup pictures to follow.!!!! Thank you!!!

News: He's Very Protective

Very informative. Our trainer is excellent at educating us on dog signals and behaviour. Thank you Lisa. Consumate Canine Inc

https://paws4udogs.wordpress.com/2013/01/07/hes-very-protective/

Photos: Happy Birthday Marqus!

Happy Birthday Marqus!!!!!
So grateful for this day!!!

Marqus turns 32!

Marqus turned 32 yrs old. Thank you GOD!!!
The last time we had a hospital family party was 29 years ago when he was 3!
This time he was able to eat the cake!!!
We are so grateful!!!
Thank you for coming out to the hospital. He was truly surprised!!!

Momma Fran: daily update 7/23/2015

My daughter flew in a couple of days ago. She was able to cancel her vacation when her brother went into crisis
I'm so glad she's here.
She makes us remember to eat lots of vegetables and take care of ourselves
She reminds us that we are no good to anyone if we fall apart. She tells her dad eat less sugar ! And reminds me to walk more and stretch.
My husband complains but eats when she cooks even if he hates onions !

She even came up with a Broadway musical song for Marqus to make him laugh his way thru the deep breathing and coughing.
Her friends from DC sent make the most beautiful flowers. Makes the room feel sunny!!
Thank you so much
I know it was hard to be so far away
On vacation and hear that Marqus had went into one of the worst crisis ever.
He keep saying stay on your vacation but she come hear him and all the ICU background noise and there was no way she wasn't coming home.
His older brother was home for 5 days too.
He works outside the USA so it was good everyone was here.
All Ashley's homemade food will help him heal faster.
Also her jokes and funny songs.
She has that quality from her dad.
Marqus aunts friends and cousins came by he was very happy.
I'm pretty stressed out and beat down so
I am so grateful for family and friends.
Good night everyone. I will keep updates coming.
He is in room 422 Edwards Hospital
Naperville

Video: Trinity & Kaleb

Trinity giving Kaleb Marqus nephew a body wag. Lol!!
https://www.facebook.com/sickcells/videos/10155911098210171/

Momma Fran: Marqus is out of the ICU

Hello family and friends
Marqus is now on out of ICU!!
He is still in pain but it's more manageable.
His left hip is painful from the AVN
avascular necrosis.

Saturday July 25th is his birthday he will be 32 years old.
Often when we discuss a person we think of their accomplishments such as home ,job ,degrees etc.
Marqus has spent 31 yrs living with A disease that heightens the thoughts of a person's mortality.
I remember once when the kids were small and I had just completed a complicated ER shift they told me I didn't smile anymore.
My kids now adults shared their stories of taking turns to stay awake when I worked the night shift to make sure I came home.
To this day Marqus will care for himself
Even sometimes in distress so as not to wake me. He doesn't want my asthma to flare up.
My son with a condition whose pain and
Damage to the organs is unthinkable is always concerned for others.
We tackle this disease head on
This time I'm reaching out for support
We never complain and just keep going and going so much so that sometimes we forget people do care .
Somewhere in the midst of working to stay alive we fit in living.
Our IV pole makes and excellent clothes rack to dry hand washables.
The medications and supplies have grown quite a bit so I made a spread sheet. We have more medical supplies than furniture that cup is more than half full !!! We are blessed that Marqus has access to quality care.
The hyperbaric boot and concentrator sound like a ventilator pretty good sound effects to play video games to !
And the scooter will be excellent for running the dogs LOL my husband was driving it up and down the street and I do admit it looked awfully funny. No more missed the arboretum , national mall , comic con etc for difficulty walking.
Everyone please know that your support is appreciated !!
Chronic illness can render anyone lonely
Because they are not out and about doing daily things.
The hospital becomes like family and
Medical care to stay alive is top priority.
Health can not be taken for granted
If nothing else is learned from Marqus suffering please be good to your body ,mind and soul .Be sure to stop and relish the small things.
Often I'm bogged down by what I can't
Change its too much and can suck the joy right from my soul. That can not happen. I'm working on staying positive
Even in the face of catastrophe .
My grandson asked me why his Uncle Marqus was so sick
I explained about the sickle cells blocking all of his blood vessels stopping circulation.
He answered in the most matter of fact way.
"Grandma tell them to just take the cells away"
One day that will be the case.