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Savannah’s Story

Savannah is diagnosed with Selective IgA Deficiency, Cystic Fibrosis, Asthma, Perennial Nonallergic Rhinitis, Chronic Lymphocytic Thyroiditis (Hashimoto's), Pituitary Adenoma, Esophageal Reflux (GERD), Gastroparesis, Arthritis, Carnitine Deficiency, Cerebral Palsy (mild incoordination abnormalities), Atopic Dermatitis, Restrictive Lung Disease, Recurrent Infections, Anxiety and Depression.

Savannah takes multiple medications daily and has multiple hospitalizations during the year.

http://fightcf.cff.org/site/TR/GreatStrides/113_Sooner_Tulsa?team_id=38506&pg=team&fr_id=3502


Latest Journal Update

New Wheels....

Hello Everyone,

Savannah finally received her new wheelchair. She is LOVING being more independent!!
I hope to get a picture posted soon.

Savannah has had two surgery follow up appointments.
The first one she got to have the dressing removed and
was shocked to see she had staples. She was so HAPPY to finally get a shower
independently. She still is using a shower chair.
The second one the staples were removed. She is still on Toe Touch Weight Bearing. (TTWB)
Since our bathroom does not have bars we invested in a bedside commode
and just set it up over the toilet so now Savannah can use the toilet independently. 

Savannah has a new aide that will be here three times a week to help her.
Today they spent most of the time just getting to know each other and figuring out what her duties will be.

Savannah has had a very productive cough again. Today we got a call and she is growing the same bacterias that
are common for her so started her on medications.She saw her PCP and her PFT's were down. We pray that with
getting up more on her crutches and moving in her new chair will help bring her numbers up.

I have been Savannah's aide at school. They do have handicapped restrooms but not on the floor her classroom
is on. So I sit outside the door just in case she needs help. I'm just THANKFUL she is continuing taking Japanese.

Have A GREAT weekend.

Take Care,
Julie (Savannah's Mom)

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Comments

5 Comments

Bonnie Ermilio
By Bonnie Ermilio
Hi, Julie. It's great that Savannah has her new chair!!! She also has a new aide to help her.

I'm praying the medication gets rid of the cough she has - quickly.
I'm so glad she's continuing on with her Japanese class.
They should have a handicapped restroom on every floor in a school!
Savannah is ALWAYS in my thoughts. I'm sending her HUGE hugs and prayers. Love you guys!
Lynn Worley
By Lynn Worley
So glad the wheelchair finally got there!
It's a blessing to be able to pray for you!
Psalms 71:1-3 In thee, O LORD, do I put my trust: let me never be put to confusion. Deliver me in thy righteousness, and cause me to escape: incline thine ear unto me, and save me. Be thou my strong habitation, whereunto I may continually resort: thou hast given commandment to save me; for thou art my rock and my fortress.
Pamela Finch
By Mrs. Pam
glad you finally got your chair and that you are able to continue w/ Japanese.
sure hope that cough gets resolved asap!!!
You are on my church's prayer list, so lots of folks here are praying for you, Savannah,
Rhonda Lawes
By
So enjoyed seeing you yesterday! Love the new wheelchair - the pink is soooooo S!!
Rhonda
Lucel-Melody Wings
By Lu
HOORAY for your new wheels!
HOORAY for increased independence.
HOORAY for Aides, that give you a different kind of independence.
HOORAY for Moms who sit outside the door!
HOORAY for tenacity and the ability to focus on Japanese and for continuing to inch steadily forward!