Running out of options.


My happy girl…..when she is herself.


What this horrible sickness is doing to her.

It has been a difficult couple of days as Sophie is fighting off a severe sinus and respiratory infection, yet again. It’s no secret my girl has been dealt a very difficult hand in this life and we have tackled all of her obstacles head on; but now I have begun to feel a bit defeated.

It was barely a month ago that Sophie had onset pneumonia along with sinus and ear infections. She was given a couple of doses of rocephin via injection, a two-week course of an oral antibiotic, steroids and ear drops. And yet here we are again.

After a visit to her ENT yesterday it was decided that we must begin to think out of the box at this point if we are going to keep Sophie alive. The ENT was very saddened by Sophie’s state of health at the visit. He concluded that because of the PCD (lung disease), her body just does not have the ability to fight off any bacteria. And the fact that the frequency of episodes is increasing is a sign that her body is weakening. Her resistance to all basic oral antibiotics only complicates the gravity of the situation. The risks of losing her are increasing and now he feels we need to be more aggressive than ever before.

I was given a choice; either admit Sophie in the hospital for an indefinite period of time or begin nebulized antibiotics permanently. The nebulized antibiotics are not covered by insurance and will become a permanent daily method of treatment and they are not cheap. I opted for the nebulized medicine, I cannot risk her being in the hospital and catching something worse.

Additionally he recommended that Sophie should permanently be home-schooled to limit exposure to bacteria. There is no doubt that home-school is our only option. The total count of doctors who say that sending Sophie to school would be a death sentence is now 4. We all know school and day care are breeding grounds for bacteria, now imagine a child who cannot even fight off the common cold in a room full of bacteria.

Where does that leave me? Devastated. I don’t want to lose my child, I love her with all my heart and soul. It’s so hard to see her suffer. Sophie is such a lively child, always moving around making a mess and always so happy. Yesterday she refused to eat, she barely smiled and just layed there all day. That is not my girl. As much her quirks can drive me crazy, like taking the plastic bowls from the sink because she is obsessed with spinning them; not seeing her do this is heartbreaking. I love her with all her obsessions and sensory needs and I wouldn’t change her  for anything except her health. If I could ask God for one thing only for the rest of my life it would be to restore my baby’s health.

Please pray for my girl. If you don’t believe in prayer please send Sophie some positive energy for healing. It will be greatly appreciated!


2 thoughts on “Running out of options.

  1. Sally Grube

    Charity, my heart aches for what you are going through with your precious Sophie. One thing that Heidi taught me is to treat every single day as a precious gift. None of us know how many days we will be gifted with, and especially for our children with 5p-. I used to hate Heidi’s birthdays as they were reminders that she is getting older, and closer to an uncertain future. Celebrate every single day. Even if Sophie is in the hospital, or sick home in bed – have a picnic in her room, play her favorite music, and dance with or without the rain. Quality of life has to take priority over quantity – for everybody. Heidi spent more than 3 years continuously on antibiotics just to try to keep her horrible sinus infections to a tolerable level. That was many years ago – never give up hope, and fire as many doctors as it takes until you feel that she is getting the care she needs. You are her expert – make sure her providers respect that, and never doubt yourself. You and you alone know what is best for Sophie. Lean on all us other 5p- moms – we have your back, and will laugh with you and cry with you, and dance with you in the rain. Much love to you both, Sally Grube, Heidi Hansen’s mom.


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