Day 7: Warning Signs

People often ask how we knew that Tillery had a problem. What were the warning signs?

I found this list that I made on September 3, 2014 to take to the pediatrician. She was diagnosed with a brain tumor 27 days later. She was 15 months old. When I read back over this list, I can see how each item was caused by her tumor and I can see how removing some tumor, adding a shunt, and maintaining the tumor 's smaller size has helped to resolve all of these issues.

Does not: Pull up, stand, walk, talk

Never tried to pull up. Acts as though putting feet flat is painful.

Says “ma ma” and it may have meaning. Says pa, ba, da, na but I don’t think any have meaning.

Smiles. Sometimes laughs but never like a really laugh, more like a noise.

Drinks from a bottle but only takes one or two small sips from a sippy cup. Has started drinking less in the past month. Maybe only 16-20 oz milk daily. Does not like juice or water and only has a few sips per day.

Lacks balance. Seems to have trouble sitting without using hands by sides to balance. If she’s playing with both hands on a toy she is unsteady. If she is sitting on the floor and looks up, she often loses balance and falls over. Usually when she falls, she falls backwards. In the bath she leans very far forward and once even put her face in the water.

Hates water…bathtime, washing hands, playing in water. She will put her feet in the pool if someone is holding her but does not like more than her legs to be wet.

Could she have sensory issues in feet? Does she have feeling in her feet?

She does crawl but very compactly. She seems to drag her knees behind her.

Not interested in books.

We don’t work on much with her because we don’t know what is ok.

Does not like eating baby food texture…yogurt, applesauce, but has recently started back eating from a spoon.

Does not like to have dirty hands. Doesn’t seem to like exploring with hands and focuses on if they are dirty. (also does not like to wash hands).

Constipation. Hates pooping. Gets very upset. Sometimes she needs to be held/comforted while she’s pooping. Sometimes I even change the diaper before she’s done so that she can calm down and breathe for a minute.

When she gets really upset, it’s hard to calm her. She seems to almost forget to breathe. She will do the “silent cry” and then scream.

She used to have car sickness issues and we had to turn her forward facing at 12 mo. She does not get sick now.

Below are some pre-diagnosis pictures of Tillery. You can see in the pics she favored her left hand and used her right arm to balance, always holding it out to the side.