What's a MOM to do?

Hyperinsulinism…how I ended up with a blog

Posted on: July 6, 2009

I guess the way I ended up with a blog began on June 12, 2008. My youngest daughter, Annalise, entered the hospital that day for what would be an 18 week hospitalization, including 3 hospitals. To keep family and friends posted, and to decompress and process everything at the end of the day, I began writing a CaringBridge site for Annalise. I found the process of writing down the days events and my feelings, very cathartic. I also received positive feedback from others, so here is my continuation of that process, but not limited to Annalise’s illness.

Just a bit about that journey, for the first 11 weeks, she was undiagnosed,  or rather, there was a “possible” diagnosis almost every day. On Aug 19, 2008 we were transferred to the Children’s Hospital of Philadelphia (CHOP). Annalise was diagnosed with Hyperinsulinism, also called Congenital Hyperinsulinism, and various other names but all meaning she had chronic, uncontrolled hypoglycemia. We were blessed that she had what is called Focal instead of Diffuse disease. On Sept 11, with the help of an 18 F dopa assisted PET scan, the area of islet cells was located in the tail of her pancreas. On Sept 18, God worked through the hands of an amazing surgeon, Dr Adzick, who removed 2% of her pancreas, the smallest section ever removed I believe. This, we believe, cured her.

During this time and the time following it, I believe I have learned some things that may be helpful to share with others such as:

  • not being afraid to be the patient’s advocate, ie asking lots of questions and pushing doctors and other health care providers to provide the best possible care
  • working with and fighting insurance companies to get appropriate care and testing and transportation covered
  • navigating the tax implications of huge medical expenses, greater than 7.5% of Adjusted Gross Income
  • living at Ronald McDonald house
  • trying to keep a family together
  • relying on the blessings of others, the hands and feet of the body of Christ, to get through
  • knowing what you can do for someone when they are in this situation
  • reaching out to others with sick children
  • trusting God, even when it seems like he is asleep in the boat

So, with this I start this blog which will include the above as well as all the other glorious challenges and blessings of motherhood.

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