I think that I am the president of the “I hate Prednisone” club. While this little corticosteroid has it’s place in the medical world and definitely (unfortunately) in the life of my almost four year old daughter, I still loathe it. Ivy has been on this medication now for about 18 months and it supresses her…
Category Archives: Medications and Treatment Options
A Bill of Rights For Parents of Kids With Special Needs
I put this together over at my blog with input from readers, and wanted to share it with all of you here. A Bill of Rights For Parents of Kids With Special Needs We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare…
Micromanage or bust
For the last week I’ve been giving Ivy her intra venous antibiotics. One is a slow push and the other is a pump that infuses the medication over 24 hours. I clean the area and flush the line. It’s been great at home. I set it all up. Ivy knows the order they go in and…
Special Exposure Wednesday.
Gran saves the day, making glove animals, while Ivy waited 22 hours, nil by mouth, for her PICC line. Thank goodness for Grans! Got an amazing moment to share? Why don’t you join us at Special Exposure Wednesday. Please remember your comment love at each link you visit. Also blogging at Three…
Prepare for turbulance, we have re entry in 5, 4, 3, 2 and 1.
Tomorrow, after twelve long days, I’ll be bringing Ivy home. I’m wondering if all of you with hospital time under your belts, experience re entry, like we do. Ivy is generally overwhelmed with the hustle and bustle of home life, cranky and out of sorts. After all, she has had the monopoly of attention of one parent 24…
How many experts are in your child’s life?
The other day, I had to make an appointment for a hearing test for Max, which means I needed to find someone who specializes in kids with special needs as Max is mostly nonverbal. Woo hoo! Another expert in our life. I did a tally, here’s who is on Team Max: * The pediatrician *…
Hospital day four…
Yesterday was a pretty big day. In more ways than one. The good doctor decided to push Ivy’s Vancomycin up to a full dose. By the completion of that dose my girl was puffy and bright red and she had a rash all over her trunk, arms and the tops of her legs. Her heart…
Should he stay or should he go?
We had Max’s annual evaluation at his school on Friday. He’s made great progress in all areas, but I have a concern. Max is the most high-functioning kid in his class, besides another little boy who can talk in sentences (Max has a few dozen words right now). The other kids are nonverbal. Max had…
Fine Line between Research and Parenting
Not only does my beautiful little girl have an incredibly rare and fatal disease of which only a few hundred children have, but we recently found out that her DNA mutation combination (the combination of my bad Gaucher gene and my husband’s bad Gaucher gene) is something that has never been seen before and cannot…
The Doctor Will See You Now
We live in a city that has many very good hospitals. One of those hospitals is a teaching hospital. It’s an inner city hospital which means should you have to visit the emergency room, you may find yourself sitting next to someone who has been shot or stabbed, and you will most assuredly hear very…