Momma Fran: keep following the daily updates

Please keep following thank you so much
This is his dream and we want this film to finally be done . He is a Hero for allowing
His very personal often painful journey to viewed by all to help others.
Our gratitude to the team keeping his
Terrible pain at bay, helping breath, watching him from head to toe.

Please also follow an awesome place
Www.braveheartsriding.org
Support them as they Help persons with special needs and our Veterans !
The folks their wonderful!
True blessings Marqus can let go of the many years of pain the pain with each foot step when riding a horse .
Onyx is 15 + this year and she carries Marqus his Oxygen , IV pump in the bag ,
She doesn't care if he has a cane saddle or no saddle she just does her job !
Peaches at Bravehearts gave Marqus a chance to ride western for the first time!!
It is awesome !
Please stay safe in the high heat and humidity !!!
Remember you may not feel thirsty BUT the body still needs water !!
Prevent heat stroke!!
Good night

Momma Fran: Daily update

Hello everyone the daily update is a bit late . Marqus is hanging in there. New test in the am it is called a WBC test or white blood cell test to look for osteomyelitis in the left hip.
That is a bone infection. We are still working to control the pain. As the sepsis improves (blood infection) the crises will subside . He is still in the ICU.
We are keeping his spirits up and I keep sharing all the posts with prayers and with funny and beautiful posts.
Please continue to follow share and encourage it's helping and we thank everyone.

Photo: breathing technique

Breathing treatment with PEEP

Momma Fran: Photo Update

Today Chaplain Olive came the ICU to see Marqus. She gently talked him thru more awful pain. We said prayers she anointed us with oil.
She asked if we knew the ABC prayer
It is thanking God for something in your life starting with each letter of the alphabet . We started with apples , breathing, chewy (the puppy), dogs , and the list kept growing. We talked about Gods wish and plan are not always apparent. Chaplain Olive was so kind and so compassionate while helping us both find hope and good in the midst of pain and uncertainty. She reminds us that thinking about positive instead of lying in wait for next ruthless jab of the Sickle pain helps ease the effects. Just like my friend said the other day replace fear with hope.
The last chapter of our book is not at its end. I have to continue my ABC prayer

Today I tried to go home for a shower and lunch instead I played with our pups even my very old guy found the strength to jump around.
We gave them baths they rolled around in blackberries and looked polka dotted.
I forgot to eat lunch but rendered the shower. I'm sure the ICU staff appreciated that LOL!! And headed back to the hospital.
My husband is cleaning Marqus room. In matter how bad he feels he try's to pick up after himself but the pain wounds dressing treatments medications etc
Are a ton to keep in order.
Martha Stewart would have a nervous breakdown in my house. Lol!
Here's the thing at least we still have a house!!!therefore when I get a chance
I will have more to clean...
Thank you to everyone that's following
This page has been dormant for sometime and we have to change that.
Good night and I will keep the updates going. I'm praying tonight thanking God for my husband whose sense of humor makes smiles and Chaplain Olive whose gentle calm spirit eases the soul.

Message from Marqus: Horseback riding

At my first lesson can't wait to see what horse I'm going to be on. I'm doing this for the sickle cell community. This is my lead and I hope the rest will follow. I'm at a point where I can say something about the connection between a sick person and a horse is amazing so follow me on this new journey I am on because I might be the first person with sickle cell to ride in the special Olympics world games. My trainer has a rider who will be carrying the Olympic torch in the world games next weekend. I hope to get there and shine so bright that everyone with sickle cell will feel it and be proud. I do this all for our community. Marqus

Sickle Cell Anemia Petition: 30-day readmission rule

Please sign this petition. Sickle Cell Anemia is unpredictable deadly and can't be subject to a 30 day readmission rule. Diseases that are incurable with very few treatment options leave patients vulnerable. Care for SCA has many hurdles the patient's suffer and can ultimately die
all why tying to justify that they are very ill. The often have to spend a great deal of time just having to prove they are ill. Please support our petition.http://petitions.moveon.org/sign/to-have-sickle-cell-disease.fb47?source=s.icn.fb&r_by=13054411

Please, sign this petition: 30-day readmission rule

PLEASE SIGN THE THIS PETITION TO WAIVE THE 30 DAY READMISSION RULE PERSONS WITH SCD CAN NOT PREDICT THIER CRISES!!!!
To Have Sickle Cell Disease Waived from 30-Day Readmission Rule
Petition by Bonnye Johnson FROM UIC PLEASE HELP

To be delivered to The Illinois State House, The Illinois State Senate, and Governor Bruce Rauner
"We the undersigned urge Illinois State Legislatures to support HR 0255 which urges the Department of Healthcare and Family Services to waive the 30-Day Readmission Rule for those with sickle cell disease.

There are currently 2,651 signatures. NEW goal - We need 3,000 signatures!
Petition Background
The 30-Day Readmission Rule states: Patients readmitted into a hospital/ medical institution within 30 days of discharge; the discharging hospital/ medical institution will be fined in the form of a reduction in reimbursement from the State for the patient's hospitalization. We DO NOT support the policy of penalizing hospitals who care for patients with sickle cell disease and the 30 day readmission penalty imposed on sickle cell disease. People suffering from this life long disease frequently have unplanned, unpredictable and recurring needs, such as controlling severe pain episodes that can only be managed in the hospital requiring multiple hospitalizations and readmissions in a 30 day period.
Current petition signers
http://petitions.moveon.org/sign/to-have-sickle-cell-disease.fb47?source=s.icn.fb&r_by=13054411