The topic I’m covering today I hope will help you better understand the complexity of Congenital PHP. There are several ways someone can acquire PHP through tumors both benign and malignant on or around the pituitary gland. However, for a child that is born with it, the lack of development of the pituitary gland can pose all kinds of development issues that fall along the midline of your body. When I first learned about it, I thought to myself, “what… Read more

Well, today marks the day that Von came home from his crash, and the moment our lives really changed.  Our new normal began, and our little boy was a whopping 8 lbs 8 ounces at 3.5 months old.  He was just over 20 inches long, and he was basically starting his development as a newborn at 3.5 months old.  We missed the months of massive weight gain and growth while he had no growth hormone or thyroid in his system…. Read more

Von is busy playing and happy! Finally a Saturday where he is not sick! Read more

When I can’t breathe and feel so emotional that I can’t think straight, I go to his room when he sleeps. I rub his back, and I listen to his gentle little moans. It is then I know this fight is worth it. Good night. Read more

We are only human, and we can only handle so much, right?  Right!  So why is it that as a mother, full time employee, wife, daughter, sister, and friend I feel like I have to be perfect, I have to achieve, I have to say all the right things, I can’t be wrong?  I just want people to like me.  I want to be liked, and in an effort to be liked, I achieve and I do things for people… Read more

Von loves daycare because he goes to one that a lot like a school. Yesterday he had music class, and today is art projects! Read more

 I am so, so grateful to all of you that are reading this blog, and helping me bring a face to a very rare disease.  Our time here is so, so short, and I was given a voice to make a difference.  I have always been an advocate for people.  It’s just a part of my nature.  I work in the education field, and I help people enroll in to Bachelor’s programs.  It gives me the chance on a daily… Read more

Hi. Someone just messaged me to let you know cortisol is not adrenaline. I used that term because it’s what our doctors have described it as. Apparently this is not accurate. Either way cortisol helps you in stress which is a lot like what adrenaline does Read more

Von woke up with a low-grade fever, and he coughed nearly the whole night long.  It seems like he has the never ending cold.  Everyone says that kids are sick for the first 2 years, but I never imagined it to be like this for him.  He can’t seem to catch a break.  A friend of mine asked me yesterday does his PHP make him more susceptible to illness.  The short answer is that his immune system is fine.  He… Read more

Every mom has one, right?  I’m seriously going crazy because Von is so out of sorts.  The whining and the constant crying is just a lot for my brain to handle.  He’s been running a fever for 4 days now.  The doctor says he has a virus, and we just have to let the virus run its course.  Unfortunately, my patience level for this fever ended on Sunday around 1 pm.  He’s been a hot mess.  He won’t eat, he’s… Read more

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