Small Victories

Trip had a great birthday! Thanks for all of the happy wishes. Gaky was here for his birthday or we might have postponed it. I have strep throat and between trying to rest, work and make sure Trip didn’t get it everything was on Gaky’s shoulders. She got him a cake, bought him many presents, and made his birthday special.

We went in for blood work today. Everything is good except his hemoglobin, which probably explains why he is more tired than usual. We also had to get his monthly dose of Pentam, which is an antibiotic that he has to have because he’s allergic to the other two options. To get the medicine, we have to sit in a booth (phone booth size) and wear masks. His mask produces a gas that he has to breathe and my mask is to protect me from the carcinogen. This is usually 15 minutes of hard labor for me, as I have to hold his mask on and physically restrain him from ripping it off & running out of the booth. Today, he decided he was going to hold the mask on by himself. He almost held it the entire time, only cried half the time, and I never had to restrain him. I am so proud! He asked me yesterday, “Mom, what do 4 year olds get to do?” (probably thinking I was going to tell him he gets to start driving now). Today, I told him one thing is they learn they can do really hard things by themselves.

The FDA has given permission for another company to start making methotrexate, so hopefully the shortage scare is behind us. We go in for a follow up with Dr. Appel on Tuesday. We should get a skeletal survey then too. Hopefully it will show improvement so we can stay on methotrexate.

Friday and Saturday, Feb 24-25, Liam’s Lighthouse Foundation will be outside the Today Show to raise awareness for histiocytosis. Family, friends, volunteers will be holding posters of ones diagnosed with histiocytosis to draw attention to this rare disease. Tune in if you have time.

Today, I’m celebrating the small victories.