Tag: family

Acceptance and the LOVE of Football

 

We all want to be accepted for who we are in this life.  Right?

As a special needs mom, I want this for my son. ACCEPTANCE. I have never seen him so excited than this very day (other than at church) Ha Ha! Some of Brent’s classmates, his teacher and coach, all came over to our home, as well as the local newspaper, and presented him with a team jersey. Go Lions!

My Kind Of RARE

 Loving2016-02-09 17.05.06 someone who is RARE is a precious honor.  I am thankful God has given me the privilege to love 2 special RARE people in this life.  This RARE condition is a Chromosome and Neurological Disorder called L1 Syndrome. The ins and outs of daily struggles makes it worthwhile when the smallest little grin comes across their face or hearing the laughter and seeing the silly faces they make when they think no one is watching or listening or even signing a new sign after teaching it to them over and over and over again and you feel like your not winning this battle and all of a sudden…. he signs….

L1CAM Family

I never thought I would see the day of being able to meet other families that walk in my shoes daily.  For so long I begged and pleaded with God to help me find someone…surely I can’t be the only one in the world?

Feeding Tube Awareness

Placing a feeding tube is a relatively simple surgery, but it is only recommended for complex conditions.

Tube feeding is a way to provide nutrition to people who cannot or will not eat and/or drink enough to keep their body healthy. Tube feeding is sometimes used on a short-term basis until a patient’s condition improves. Other times, it is a permanent method of feeding and is impossible to stop without resulting in malnutrition, dehydration, and the eventual death of a patient.

Tube feeding usually is given directly into the stomach or intestines (enteral tube feeding) or in some cases via a central vein, called parenteral tube feeding. Tube feeding is important to improve or maintain the health of some patients. Whether or not a patient is a candidate for tube feeding is a personal decision that involves the patient, family, and medical team..

Once a tube is placed, a special liquid formula is run through the tube and into the body. The tube-feeding formula contains a complete blend of nutrients. Extra liquid and medications are given through the tube. If the tube is attached to a pump, it runs continuously. If the feeding is given in a larger amount several times per day, it is known as a bolus feeding.

It is necessary to make a careful decision when deciding whether or not to use a feeding tube for the elderly or a chronically ill patient. Not every person who cannot or will not eat is a good candidate for tube feeding.

Tube feeding is ordered by a doctor and reviewed by a registered dietitian and others to make sure that the correct amount of nutrition (protein, calories, fluid, vitamins, and minerals) is provided. If needed, a special tube-feeding formula for diabetes, kidney disease, or lung disease is ordered. The patient’s weight, laboratory values, and bowel habits are monitored closely for tolerance to the tube feeding and adequate nutrition.

 

Brently is a fighter! He is a very strong-willed teenager who stops at nothing.  This feeding tube is a set-back, but we keep on striving and thriving everyday to continue to make progress in all areas that need the most work.  I am thankful for my son.  He is L1 strong! He loves trying to help me insert the tubing and he loves to pull his tubie button out from time to time. We laugh it out because he thinks it funny. This is real life! If it wasn’t for this feeding tube, my child would not survive.  It must be working great so far because he is 85lbs. and climing.  Love my boy!

 

 

Spastic Paraplegic (SPG1)/Shuffling Gait

Hereditary spastic paraplegia  is a general term for an expanding group of rare genetic disorders characterized by slowly progressive weakness (paraplegia) and increased muscle tone and stiffness (spasticity) of leg muscles. Other symptoms can occur in the pure subtypes including bladder dysfunction or abnormal sensations in the lower legs or feet. HSP is classified as “complex” or “complicated” if additional symptoms are present such as an inability to coordinate voluntary movements (ataxia), seizures, intellectual disability, skin disease, dementia, and hearing and vision abnormalities. Individual forms of HSP are caused by a mutation to a specific gene. 

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