SURVIVING TWO THRIVING...with L1cam Syndrome

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Life has a way of lifting you up in the most exciting times and tear you down in some of the most horrific times.   Some say it’s whatever road you choose to follow.  Whether good or bad, YOU choose!  I think that God somehow, someway saw fit that He chose me for this specific unique life with my boys.

 Loving someone who is RARE is a precious honor.  I am thankful God has given me the privilege to love two special RARE people in this life.  This RARE condition is a chromosome disorder of the L1cam gene and it’s a neurological disorder called L1 Syndrome. Daily struggles make it worthwhile when the smallest little grin comes across my sweet boys faces or hearing the laughter and seeing the silly faces they make… Read More

Today has been another “ok” day.  Brent is so ready to get back in the swing of things with going to school and doing his routine.  He loves a schedule and if it gets off track, he does not like it. He is thriving and I am so happy for him that he is still fighting his disability He is one tough teenager!

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… Read More

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

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