By Khaliah, Apr 5 2014 02:37AM
Khaliah Shaw made more progress yesterday and today. She moved from clear liquids, to soft foods yesterday and to a full diet today. But because of her having some trouble swallowing her food, I asked the doctor to put her back on soft foods. She was SO happy when they said she could eat regular food and of course was disappointed to go back to soft foods, but she agreed that the soft foods were best for now.
Last night, we sat and held hands while talking. We talked about everything. As we were talking, she began to have another seizure and then had 4 more today. This really has her scared because she doesn't know what's causing them or if this will cause her to be in the hospital longer. I know this must be frustrating for her because it is for me. That was the first time I witnessed the seizure and I tell you, it's scary. We're talking and all of a sudden it starts. This morning, I was feeding her and she had another one. While visiting with her friends, she had another one. And then she had the worst one tonight that lasted for about 10 min. She'll be seeing a neurologist tomorrow. They still think it's a withdrawal from being on all those heavy meds, but we need to be sure. They started her on anti-seizure meds tonight, so hopefully, that will get things under control while they figure out exactly what’s causing them. So we certainly have to keep praying about this!
She has her moments of being down, but overall she is in good spirits. I think it was great for her spirit to be able to visit with her friends yesterday and today. She was calling and texting her friends inviting them to come see her, but she gets tired easily. I think it’s best if we limit the visitors to 1-2 friends a few times per week and limit the visit to 20-30 minutes. I think any longer than that wears her out. She’s still trying to build up her strength, but will try to have fun with her friends. Then, she’s exhausted. So I’m asking all of her friends to coordinate their visits with me because I don’t want her to overdo it.
Now, as for me—I think this just about took me to the edge. I think because I could see the physical progress for the last few weeks and because she wasn’t having any complications, I could stay optimistic about her recovery. After today, for a moment, I just felt like I was at my limit. After witnessing seizure after seizure, I again felt helpless. Like there’s nothing I can do to ease her fears and frustrations. And there’s nothing I can do to stop the seizures...other than pray. Of course I did that!
I haven’t had much sleep since Thursday night. While I know I need to get some rest, it’s hard to leave her in such a vulnerable state. Even though I believe wholeheartedly that she will be fine, it’s still very difficult to see her going through all of this. Let’s pray specifically for her seizures to stop and her eye sight to get back to normal. Thank you all for everything...all the words of encouragement, prayers, visits, gifts, cards, contributions to her fund and for supporting us through this time. It really means a lot to us both! #teamkhaliah #mybutterfly