Steroids = Huge Appetite

This is Raquel's 3rd week of being on Prednisone, and I've got to say that the side effects I was the most concerned about (restlessness, irritability, sleep issues, etc.) have not happened as of today. In fact, I was so paranoid about starting the new medication, that I couldn't even do it. After walking into an argument Mike & I were having about me not giving her the meds, my wonderful respite worker asked if she could do it. I said yes and left the house in tears. It is really hard giving medicine to a child that can't tell you what they experience from it. And Christy is awesome and basically a nurse and knows how to deal with side effects when and if they occur.

The main side effect I am experiencing with the Prednisone is her appetite. I cannot get enough food in her. She's grown a pot belly and her face is getting round. Fortunately, I have a healthy food/fridge policy in our house so she's not eating a bunch of junk. Just yesterday she enjoyed a plate of raw cauliflower! But she seems to always want some kind of snack or she gets pretty aggitated. And I mean aggitated.

I've been so fortunate to have found this LKS support group and have learned so much from all of their experience, support, and advice. Many talk about the steroids and how it briefly stunts growth in height. Some kids have gained weight, but their shoe size and height did not increase again until after the steriod is eliminated, and then it readjusts. All of this is very strange and frightening to hear, especially considering Raquel has been getting taller and taller on a regular basis. And now I wonder if this will be ending for her steriod duration. But I'm so happy to have found some people going through the same process that we're going through and appreciate their calls and emails. Just knowing they check in to see how I'm doing is a big relief and keeps me going, and I don't feel so alone.

I have noticed some positives from the Prednisone. She definitely seems to be trying to initiate conversation and is way more vocal, even if I don't understand exactly what she is saying. She still clearly understands words and follows simple instructions. She is very happy and calm, and her walking is more stable. She will often use 3-4 word sentences when answering my questions, and again, is the absolute cutest thing on this planet. I'll post pictures soon. Sorry Grandma H - I know you wanted them before now. :-)

Have a great weekend everyone and I'll start posting again soon!