The following day, I mentioned this sleepy behavior to her Epileptologist during our routine visit. She shot me a concerned look and immediately sent Sadie to medical imaging to check if the fluid in her brain had started to build up again. At this point, we were only 2 1/2 weeks out from her cyst fenestration surgery.
Thankfully, the results came back fine. At this early stage, the fluid didn't look like it had started to accumulate again, but we wouldn't know for sure until Sadie's 6-week post-op CT scan. However, the doctor did express some concern about the tumor on the left side of her brain.
Chillin' in her stroller during a walk. |
So, now it seems we have two things to be concerned about - first, that the scar tissues doesn't re-form and cause blockage, and second, that the tumor doesn't get in the way and cause blockage. If either of these occur, then it appears that the only way to fix the problem is by placement of a shunt. We will know for sure if either of these things is occurring after her CT scan scheduled for this Thursday.
In other news, Mommy and Daddy were able to get away for vacation for a few days. But, despite a long talk with Sadie about NOT getting sick, she decided to do the opposite - just like a toddler!
On Saturday night, her oxygen dropped and she developed a fever. When her temperature increased a few hours later, Grandma and Aunt Megan decided to take Sadie to the ER for assessment. Turns out, she had a mild pneumonia which was likely caused by aspiration from vomiting a few days earlier.
Sadie looking lovingly at Aunt Megan (Goo). |
Another issue Sadie has been dealing with lately is slow motility. Or, in layman's terms - she can't poop. In the four weeks since her brain surgery, she has not been able to have a bowel movement without assistance of a suppository. We visited the GI doc this week who gave us some tips on how to get her to go...yes, it's a glamorous life we lead.
We did receive a bit of good news last week. After a visit with a doctor at the Chicago Lighthouse for the Blind and Visually Impaired we received confirmation that Sadie has normal vision in her left eye. Yay! We had heard this from her regular opthomologist, but I've become a bit of a sceptic when it comes to doctors, so it is always a relief to get confirmation from another source!
Please keep Sadie in your thoughts and prayers as we hope for good news out of Thursday's CT scan.
Definitely sending good thoughts & prayers for Thursday's CT scan. In these pics she looks so old, not a baby anymore. And, is her hair getting curly? She's so sweet...you ALL are always on my mind. xo
ReplyDeleteHope you and Adin had a wonderful mini vaca!
So glad to hear the wonderful update regarding her vision. Finally, some great news! Love you guys and keeping Miss Sadie in my thoughts and prayers...always!
ReplyDeleteI just wanted to take the time to thank you for writing this blog.
ReplyDeleteMy cousin's daughter was recently diagnosed with Aicardi syndrome. It's terrifying yet extremely relieving to have a rough idea of what we should expect.
Best wishes.
Yay for good vision in her left eye! She can see and smile at her pretty mommy. =) Hang in there Cathy! Constant prayers for Sadie, you and Adin. Sending hugs your way!
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