I cannot wait till this seizure medication is done with. Imagine talking a six year down daily, all day. Ellie today was calling herself stupid, hit herself in the head, saying she wants a new brother, she wants to be 5 again, She feels like a baby, she wants a new family, I’m not her mom, etc. You may ask what brought this on. Well not sure, I just asked her what she wanted for breakfast. She goes on these rants out of the blue. These mood swings are horrible. I would say of all the things that we have been through these past two months the hardest for me to handle is Ellie’s personality change. I just pray to god that it is the medication, and not permanent from the brain surgeries. By her birthday she should be completely off the seizure medication and we should know if this was a side effect of the brain surgery or the medication.
Today I said to her “You still need to be polite.”
She said “Mommy I need to tell you something. Mommy I lost my polite. My polite left this house. Do you know what made it go away? It’s just Jake.”
It’s so hard I’m going crazy one moment and then she says something like that and I have to do everything in my power not to laugh.
Today was in home Chemo therapy day. It was pretty easy having Chemo at home. I was feeling really good about everything. Ellie even went to her Daisy meeting tonight. After I dropped her off I received a call from the hospital. Ellie’s hemoglobin (red blood counts) levels dropped. They are hoping that her levels will come up by next week. If not then she will need another blood transfusion. I have to really watch her and if she seems off I need to bring her to the hospital.
Before I go I must tell you the very best part of my day and week was tonight. Ellie came over to me and hugged me. She said “I’m so sorry I yelled at you mommy. I love you.” That hug meant so much to me. It has been two months since she has come over and hugged me. I always hug her but she never hugs me. What an amazing feeling.
A mother with a battle ahead of her.