Lest you think that things might be slowing down around here now that Lily is one….
Lily’s recent CT Scan shows that one of the sutures (the metopic suture) on her skull has closed, resulting in the sort of pinched look of her head, forehead and up. We’ll be getting an MRI done soon to check on her brain and fluid in some ventricles and to see what the neurosurgeon thinks about it all. The plastic surgeon is pretty sure she’s going to need to have surgery to correct the shape of her skull, in order to give her brain as much room as they can for it to grow. If there is too much fluid, there may be shunts placed. We won’t know what is going to happen until after the MRI and meeting with the neurosurgeon on December 31st. (Happy New Year’s Eve, I guess.) We have a surgery date scheduled for January 12th, just in case.
We’ve increased Lily’s physical therapy to two times a week and have started the process of getting a customized wheelchair for her. She is not getting the support she needs from the highchair for feeding and being able to interact with us while she’s in it. She’s outgrowing her car seat carrier, and without good trunk and head support, she won’t be able to ride in the stroller comfortably.
We will continue to work on getting her sitting and mobile, but this is the best option for her and us at this time. If she does walk, she’ll be the cutest little girl walking around. If she never walks? She’ll be the cutest little girl in a wheelchair. Win win, right?
It has been discovered that she’s gotten bored with bananas, so we’re branching out. Current favorite food- mangoes. At our follow up with the GI doctor two weeks ago, we found out she has gained about two pounds and 4 centimeters in the past two months. She's on the low end, but she’s on the chart!
Her head has also grown another half centimeter.
Seizures are still happening- she’s had a few since our last update. Now that I’ve done a little research, I know that they are tonic seizures, and though scary when it’s happening, she’s fine when they’re done.
This post was written by another mom of a child who has seizures. It's definitely how I feel about it all.
As always, thank you for your continued prayers!