I Swear, It’s Better

I can’t promise you my daughter’s vision is better, because she won’t tell us.   I’m not sure at three-and-a-half she can even evaluate what the difference is in her vision from day to day or hour to hour, but from observations, I think she can see better.  

We had her first Remicade (Infliximab) infusion today, which is an immunosuppressant.   She had a bonus dose of Solu Medrol steroids.   Tonight she’ll have prednisone orally and then she’s getting those prednisoLONE drops in her eyes four times per day.    We are not missing steroids on any angle.   This has just got to work.

So how is her vision getting better?   On the one hand, she’s dilated twice a day, which prevents her from focusing well.  But she does seem to be seeing blobs more clearly now.   She noticed several things from a distance I don’t think she was able to do two days ago.   Tonight she knew what letters were on small dice and could see small pieces of paper she had cut up on the floor when she went to clean up.

She even was interested in television.   She stood in the kitchen and looked over tat the TV and I thought she had distance vision for a minute but then I realized she was eating yogurt and was following the rule of food stays in the kitchen.   She was standing right at the edge of the room and looking towards the TV.  

So I think we have progress.   I’m also holding my breath.   But I’m getting excited.

The Big Boy Update:  Have I mentioned my son loves clothes?  He likes to pick out what he wears and he has very particular opinions of what he does and does not want to wear.  What he picks out, he looks good in.  He knows he looks great in camoflaudgye, orange and blue.   He is also good at matching outfits.    He is my little Style Captain.

The Tiny Girl Chronicles:  My daughter really, really hates getting an IV placed.   (Who doesn’t?)   Today was quite traumatic to her until the IV was in and the medication flow was started.   Because we’re going to be doing this every month for some time, they gave her a “medical kit” including a plain cloth doll that she can color and mark veins on the arms.   The kit includes everything they use to place, flush, clean and remove the IV excepting the needle.    She loves the kit, practicing while we were there for four hours today and then showing Uncle Jonathan, dad and me how it worked when we got home.