Aaron's Hyper IgM Journey

Monday, June 16, 2014

Daddy's coming home!

What an absolutely horrible month! I really hate to be negative, but there is no way to sugar coat the events of these past few weeks.

Aaron's tantrums have gone from bad to worse. During one of his tantrums he was yanking on my chair so hard that he fell backwards and fractured his L2 vertebra. After that he could barely walk and his tantrums have escalated. We believe his behavior could be due to pain. Aaron does not usually behave badly. Something has to be wrong.

He wakes me up about four times each night for up to an hour each time. I am getting 3-4 hours of sleep. I was getting 5-6 hours a night which wasn't enough and now I am severely sleep deprived. I am not functioning well and have daydreams about sleeping in the garage in my car so no one can find me to wake me up. He is hungry, thirsty, and needs to use the bathroom. I wish I could ignore him, but the doctors say I need to accommodate his needs.

Michael has been stuck in Trinidad. His passport expired this month. He has been trying to renew it for over a month. Part of the government went on strike and passport production has been halted. He had to go there before his passport expired or else he would not be able to travel there to get the passport. Being a pilot, he cannot work without a passport.

We got a text from Mike just now that he is on a flight to Orlando. Thank goodness! We are all excited to see him. He was gone for his birthday and Father's Day. We look forward to a few celebrations and I look forward to sleep.

Here is Serena's reaction to her daddy coming home:

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  1. I was talking to Mont Smith; Monica dad, and after he read what you said on face book he recommended that you get a third opinion from either the Boston Children Hospital or the Phil children hospital. He was very sure you need to get another opinion over and above your present Hospital. I could say more he said, but will leave it at that.

  2. Sending you love. Call me anytime. I have been there. I visit that overwhelmed, exhausted, slightly hysterically crazy place, often. Being a mom of a medically fragile child sucks. Of course, I am grateful. I am sick of people telling me I should be grateful. Of course, I am glad my son is still alive. But I wish we could leave this hellish limbo existence of immune-supressed-isolation. Remember, that it is your situation that is impossible, and that you are doing your very BEST that you can do in an unbelievably difficult situation. YOU are extraordinary and have gone ABOVE AND BEYOND for four years now. YOU ROCK!