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Crazy Kind of Day

Today has been another day of clinging on to hope and having faith that God will help us through this storm we are in. I had to take Brent to the Doctor today. He had a blockage and I just knew we would end up in the hospital. They were able to do the procedure in the office and gave instructions on what to do when they sent us home. I was… Read More

Category: Faith, Hardship, Parenting, Special Needs, L1Syndrome Tags: #l1cam, #l1strong, anxiety, awareness, better me, Chromosomes, devastation, diagnosis, disability, Encouragement, FEEDING tube, food, formula, genetics, Hardship, Hope, life, Love, love of a child, Mom, sick, Special Needs, stress, surviving, thriving

Choose Joy!

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

Category: Uncategorized Tags: #hydrocephalusawareness, #l1cam, #l1strong, #thankful, awareness, better me, Chromosomes, diagnosis, disability, Encouragement, Faith, family, genetics, Grieving, Hope, Hydrocephalus, Joy, Laughter, life, Love, love of a child, Special Needs, surviving, thriving, X-linked

When you wake…..

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.

Category: Disability, L1syndrome, Hospitalization, Seizures Tags: #globalgenes, #hydrocephalusawareness, #l1cam, #l1strong, anxiety, awareness, Chromosomes, death, depression, diagnosis, disability, Encouragement, Epilepsy, Faith, genetics, Grieving, Hardship, Heaven, Hope, Hydrocephalus, life, Love, love of a child, Mom, PTSD, Seizures, Special Needs, stress, surviving, thriving, X-linked

Simply Amazing!

It has been an “OK” day. Brently had surgery 2 weeks ago this past Monday. He had to have a G-tube – (feeding tube) revision because of infection that spread throughout his abdomen due to some complications in changing out the tube. He is home bound for 5 more weeks due to more infection and I can’t risk him getting any worse.

Category: Feedings, Gastrostomy Tags: #hydrocephalusawareness, #l1cam, #l1strong, anxiety, awareness, Chromosomes, diagnosis, disability, Encouragement, Faith, family, genetics, Hardship, Health, Hope, Hydrocephalus, L1syndrome, life, living, Love, love of a child, sick, Special Needs, stress, surviving, thriving, VP Shunt, X-linked

Being Accepted

It has been 20 years since I have been out of school and nothing has changed about Special Needs… I will probably make some people upset but ya know, it does hurt to know that special needs children are left out of everything. The only thing they get to look forward to is Special Olympics that happens once a year. There should be more structure and involvement within the school system and… Read More

Category: Acceptance Tags: #globalgenes, #hydrocephalusawareness, #l1cam, #l1strong, anxiety, awareness, better me, Chromosomes, death, depression, diagnosis, disability, Encouragement, Faith, family, friendships, genetics, Grieving, Hardship, Hope, Hydrocephalus, Joy, life, living, Love, love of a child, Mom, Special Needs, surviving, thriving, X-linked