SURVIVING TWO THRIVING...with L1cam Syndrome

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Budd–Chiari syndrome is a very rare condition. It is an uncommon condition induced by thrombotic or nonthrombotic obstruction of the hepatic venous outflow and is characterized by hepatomegaly, ascites, and abdominal pain. It is caused by blood clots that completely or partially block blood flow from the liver. It usually occurs when a clot narrows or blocks the hepatic veins, which carry blood out of the liver.

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

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.

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?

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