Hello dear ones! We are home. . . arrived yesterday evening. Hope was doing well and got to go straight to youth and catch the last part of her youth night where a testimony was shared. Testimony nights are her favorite and she did not want to miss it. . . so thankful for how much she loves it! She was having a fair bit of myoclonic jerks that night, but that can happen when she's tired and her body has been through a lot, which this past week would definitely describe. . .
She woke up this morning doing fine. She did have another bad very itchy flaming red rash breakout, including on her tongue after her third dose of the new antibiotic and a bath. . . but we're hoping that the bath was the straw that broke the camel's back, so to speak! She had a fourth dose 2 hours ago and is now starting to have another itchy rash, but it is not as severe as before and not nearly as bright red. So we'll just keep watching her.
This morning, Hope still had a few myoclonic jerks. Then she called Trev for help as her hand had "stuck," and she was unable to open her fingers. Later in the afternoon, while I was taking Gabi to a doctor appointment, Trev was looking for a movie in the van that Hope had requested to watch, and when he returned into the house, just a minute later, he found Hope panting heavily and unable to speak. When trying to answer him, she could only make a small grunt noise. He asked if she had just had a seizure, and she was able to nod yes. Later, when she slowly was able to regain her ability to speak, Hope was able to better explain her seizure, that involved her eyes, and left arm, and her mouth (which is a new seizure symptom that we have not seen before). She said that she was unable to move her mouth as it was frozen.
By the time Gabi and I returned a while later, she was almost back to normal again, with just a tiny bit of difficulty with her speech. But as the afternoon and evening went on, Hope's myoclonic involuntary jerks got much worse and involved her feet, toes, hands, eyes, and eyelids. And most concerning her speech became so slurred, stuttered and laboured that we could barely understand her, and of course were very concerned. She complained of a small headache and being extremely tired.
We had her rest in her recliner chair with us watching her closely constantly. Her headache got worse for a bit, and then went back to just a little bit of headache now. She is getting a little more energy now as well, and her speech has improved slightly and her involuntary movements/myoclonic jerks are decreased a bit. However, she is still far from her usual self. Her cognition is not affected at all, so she is aware that she is struggling to speak. We have decided, with a lot of prayerful consideration, that we will not be taking her back to the hospital yet. But we are going to continue to watch her very closely. . . we will either take turn staying up watching her all night, or one of us will sleep with her to keep an eye on her. Please pray for the Lord's hand of protection over Hopey, and for wisdom for Trev and I, if we should at any point take her into the hospital.
Hope's hematoma site is more swollen today, and so we are also keeping a close eye on that. However, Hope is not running a fever. She has an ultrasound of her hematoma site booked for Monday, and will see the Infectious Disease doctors on Wednesday next week.
We are thankful for your continued prayers for our girlies. Little Gabs seems to be getting a stomach bug as well, and also has a sprained ankle, so we are taking turns snuggling our struggling little girlies. Thankful to be together as a family and not half at hospital and half at home. We sure love them and are so blessed to have them in our lives.
You are loved, dear ones!