Lizzie's Ups & Downs

Well, it’s wonderful to have both Don and Lizzie home, and Don is recovering at an incredibly fast pace. But Lizzie is having some setbacks again! She came home on Tuesday, and seemed fine but tired on Wednesday, until the afternoon when we started noticing that her speech seemed to be slowing and slurring. I asked her about it and she said it was getting more difficult for her to speak clearly again. She said that her mouth felt “weird” on the right side, and she couldn’t pucker her lips to make kissy noises to the cat, and couldn’t spit her toothpaste out. The right side of her mouth is droopy. Also, her double vision has worsened, and her ataxia is more pronounced. She had a cat scan and shunt-series of x-rays taken yesterday afternoon. The doctor said that everything looked very clear, both in her 4th ventricle and in all of the shunt lines. He feels that her brain is just adjusting to the change in the ventricle pressure and the invasive nature of the surgery. So we are in wait-and-see mode again! Aaaaaargh! It’s so frustrating and frightening each time we go through these “downs.”

katie,
after all these downs…there are only ups to come…hang in there and keep positive…sending you all lots of positive energies to help you through this down time xxx

Thank you Alicia!!

My speech seems worst when I’m tired, people say that I sound better, but it is harder to talk when I’m tired. If you can check Lizzie after she wakes from sleep, her speech may be better or at least easier for her.

Peace,
Ameenah

When I’m tired, my speech is slurred and the right side of my mouth droops. My wife freaks out when it happens and send me straight to bed. That still happens more than 25 years after my brain surgery. However, it is always a good idea to double-check with Lizzie’s doctor.

Good luck,
Jan

How frightening that must be. I am so glad that everything looks good. I hope the next few days are better.

Thanks for all of your comments. It is definitely worse when she is tired, but all day long we have had to ask her to repeat almost everything she has said. It is SO much worse than it was 3 days ago! But despite all the stress and worry, I always try to keep my energy positive because I know how important it is to be strong for my girls.

I do hope that this will pass and soon! Hopefully the docs are right and her brain just needs to adjust. I will keep my fingers crossed that this is the truth.
And yes, keeping the positive energy is so important…if not very tiring. Hang in there, all of you. And play the “wait and see” game for a little bit. Hopefull the see ends up being awesome.

Sorry she’s having a down period. Time and patience, but I’m sure it’s frustrating. Send Lizzie all of our love!

we are praying for you and your family! Our thoughts are with all of you! Remember that even though you are being strong for others, take some time for yourself and try to relax. I know thats easy to say but they will understand. Take care, Liz

Hi Kati,

Sorry to hear about Lizzie’s setbacks. I know they are frustrating to Lizzie, you, and the rest of your family. Hope the doctors are right and that everything will eventually be OK.

Take care,

Debbie

I agree with Liz, take some time for yourself.
You have to take care of you !!!