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I never dreamed this emergency room visit would be our last. A statement that I have always heard through the years is that “a person never realizes what they have until it is gone”. Well, tonight I completely had a meltdown. I believe that statement is true. I was wanting my dad to come back and tell me that he was no longer sick, and that he was going to take my… Read More
A tear silently rolled down my cheek as I opened a letter that was addressed to my son today. I looked at my husband and said, “I’m sure he could care less about his Medicaid and everything going on in this world today because he is free of all the chaos and why would the State want to send a letter in the mail for him to vote? Do they not know that almost… Read More
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),… Read More
Brent started off his day today not feeling good. He has been very quite. As the day went on, his Aide came today also and he cheered up some. We have a new Aide and she is doing a wonderful job with him. She is a very sweet lady and has fit in with our family great. We were happy to get a few hours in to do whatever we wanted while… Read More
I will probably never understand Seizures. Every time Brandon had one, It would throw him back into learning what he had just learned. It broke my heart to see him in such distress when I couldn’t do anything about it. He would be unconscious for days.
SURVIVING TWO THRIVING...with L1cam Syndrome 