Thursday, June 18, 2015


It's been a really rough couple of months for us for many reasons, but there seems to be a glimmer in the clouds this week. 

1. Isaac continues to get ill often even after removing him from school. Lately he has been getting these mysterious fevers that last for a day or 2 and then disappear. We are left wondering what he is catching this time. We saw a new Immunologist the other day. It would be hard to explain what Isaac has to the non-medical field. 

Isaac was born with a condition called Hypogammaglobulinemia. You may have to google it:) Basically his body doesn't make certain antibodies to prevent infection. The Doctor gave him a shot called Prevnair 3 and will draw labs later to see how his body responds to that. If he does not respond to this then our next option is IVIG therapy. This is pretty invasive so we will take this one step at a time. 

2. Isaac is getting much bigger and in turn is causing us to lose and then not gain valuable nurses. He only weighs 41 pounds, which in my opinion isn't that huge since I've seen special needs Mamas with kids almost twice his size. People ask how I do it. What can I say? When you have a child you love you would jump off a cliff for them....and lift them if needed. 

This week we got a new bath system where we don't have to lift him at all! It has a chair that slides into and out of the bathtub. Then we just wheel that chair to the room. That will be a lifesaver for all of us. We also got a hoyer lift. Since most kids are at least 50 pounds before getting a lift, Isaac is very little for it. However, I'm happy to have it available in the home as needed. 

Again we wait patiently for the stair lift and a chair I'm trying to get for him. That process is SLOW. 

Thank you for your thoughts and prayers on this. I know very few people still read our blog because of Facebook.