Monday, October 11, 2010

A week of firsts. Good days and bad days.

It's been a whirlwind past couple weeks. Many firsts have happened since our last post.

We spent the first night in our new home. After a lot of stress with coordinating move logistics and closing paperwork, we have officially moved in to our new house. I can't tell you how excited we are to finally be settled.

Sadie spent her first full night in her crib. Up until now, she had just been taking naps there. Call me a paranoid parent, but I had her sleeping overnight next to us in her pack and play for the first five months of her life. With all the changes in seizure meds, etc., I wanted her next to me should anything happen overnight.

Developmentally, Sadie has seen some very good progress. She is reaching for toys with both hands. She had previously only been using her right hand, as her left side of her body is weaker due to the more extensive damage on the right side of her brain. Sadie transferred a toy from her left hand to her right - a task her therapists said may be difficult given her missing corpus callosum (the part of the brain that connects the left and right hemispheres). She is also grasping her bottle with both hands!

Sadie also discovered that she loves to play peek-a-boo, and on rare occasions, she will giggle, which makes her mommy extremely happy. Although, every time I try to capture it on video, she becomes decidedly quiet.

We had our first meeting the neurosurgeon this week to discuss Sadie's MRI results. Overall, he said there is nothing to be concerned about at this point. She will have another MRI in January to continue to monitor the brain tumor, called a choroid plexus papilloma.

Later this month, Sadie will go in for another overnight EEG to monitor her brain activity. We are hopeful that this EEG will show some improvement in the seizure activity in her brain. Sometimes, seizures can occur in the brain, but show very little in terms of outward characteristics.

Sadie will also have her first ERG (Electroretinogram), a test designed to test the visual function of the eye. We hope that we will finally get a definitive answer on whether or not she has any vision in her right eye. The test will also give us information about her peripheral vision, as peripheral vision loss is a potential side effect of one her seizure medications.

There are also a number of "firsts" that we're anxiously awaiting.

Sadie is still working on her head and neck control. We, along with her therapists, continue to give her a lot of tummy time to help strengthen her neck and back muscles. We look forward to the day when she can hold her head up independently.

Personally, we are working on how to respond to questions we get about Sadie, something we've struggled with since Sadie's diagnosis. How do you respond to innocent comments from strangers like...."Is she sleeping thru the night?" "Is she sitting upright?" or "Just wait until she's running around." While I'd rather not lie, the truthful answers or responses seem too heavy for this light conversation. The honest answer would be..."No, she doesn't sleep well because her seizures wake her up every 3 hours." So, in the meantime, we put a fake smile on our face and give our generic reply - "She has good days and bad days."

Overall, the "first" we most look forward to is Sadie's first seizure-free day.

1 comment:

  1. Congrats on all of the wonderful firsts and your lovely home! You're a great mom, Cathy...I'm sending warm wishes and hugs your way. Play Sadie some Beyonce from me! xo

    "Every house where love abides
    And friendship is a guest,
    Is surely home, and home sweet home
    For there the heart can rest." ~Henry Van Dyke