SURVIVING TWO THRIVING...with L1cam Syndrome

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We are definitely battling with the feeding tube on a daily basis.  But, what’s new?  I was sitting here pondering on how long it has been that I learned how to work with feeding tubes and I have to say that I am a genius! haha.  It has been 18 years. What is up with that? I should have a medical degree of some sort by now.  Don’t you agree?

I am numb.  I don’t have any words of wisdom or encouragement for myself or to give anyone this very minute. My brain is trying to stay positive but in my heart I know that another battle is about to begin.  I know God will be with me through this. There is no doubt about that. I am just scared.  We received some bad news and I am having a hard time… Read More

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

It has been a full day at the Emergency Room at the Children’s Hospital.  I do not understand why things happen the way that they do but there is a reason of some sort for it.  I am looking for answers.  I want to know why my child is hurting and no one can fix this problem.

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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