Background

I know so many people are wondering what happened, so here is a brief synopsis. I've probably missed some things because I'm overly exhausted, but for those of you who need more background here it is:

Now a note about our Kayla...

Wed mid-day she received her DTap vaccination. She was playing well, interacting, being amazing just as she always is. The doctor was amazed at how well she was sitting up and engaging with Benji. Later that afternoon, after a 2.5 hour nap, she was her normal self, rolling across the floor, pushing herself backwards on her tummy, playing with her toys. She went to bed on time and happily. I continued my night with craft night. Just after people left our house, around 1:00am, she woke up absolutely wailing. She's been breaking through her 2nd tooth, so we thought she was just uncomfortable. We took her temp 100.3 and gave her a bit of tylenol. She wouldn't settle down. She was screaming and screaming and screaming. I held and rocked her for awhile and then andy took over so that I could sleep for about an hour. She fell asleep on his chest for about 30 minutes. I then took her downstairs and put her in the carrier. She whined and cried until finally dozing at 6:30ish. After about 30 minutes she woke up screaming again. I took her out to change her diaper, and noticed immediately something wasn't right. She only looked to the left, and wouldn't respond to our calling of her name, wouldn't turn her head, and wouldn't move her body correctly. I tried to nurse her and she sort of nursed, but kept getting frustrated. At that point, I told andy we needed to call the doctor. My gut was screaming that she wasn't our kayla. It was the scariest thing. Many of you who know her know she's engaging, and wise, and has "old eyes." This little girl had glazed eyes that wouldn't focus, almost like she wasn't there. We got an appt and I settled her down on my chest in teh rocking chair and she slept for maybe another 30 minutes. Finally I called Kim and Brooke for them to pray and Kim pushed me to do what I knew I should have done in the beginning (thanks kim!). We dropped Benji off at Kim's house, and went to the office demanding to see a doctor immediately. Our office was truly exceptional. The nurse saw us right away and then the doctor did too. At the office, that's when we noticed she wouldn't lift her right hand at all. She was trying to play with a toy, and she would cry because she was frustrated she couldn't lift her arm. She continued to look left and wouldn't track a light even with the lights off in the room. I kept saying, this isn't her, this isn't her. They sent us to the emergency room, where once again the staff was amazing. Our poor chubby little girl had to have 3 nurses try for 45 minutes to put in her iv. While there, she started having seizures in her right arm up into her mouth and face. A peds neurologist came in and she was sent on for an MRI. It was the waiting that killed us. Then the diagnosis...

She had suffered a massive stroke sometime through the night in the left side of her brain. This hurts learning processing and motor skills. They didn't know to what extent she would recover. Some children can, some can't. Again, a waiting game. They did say because she's so little that 1. they have never seen this before, and 2. because her brain is still developing, this could work to her advantage. It would help with brain swelling since her skull is still open and with relearning and remapping the learning she has to do. So- we are scared, hopeful, and again, playing this long, long waiting game. She'll be getting speech, pt, and ot services immediately to help with this.

Today: She has done remarkably well. She is now fully using her entire right side of her body. When the doctors and PT examined her, they didn't feel much, if any difference in her muscle tone. She's waving her arms around, rolling over, pushing herself up. She keeps ripping her tubing out to drive the nurses crazy and again had a terrible time getting new iv lines into her chubby arms and legs. She has amazed the doctors. They keep saying it's absolutely amazing what she is doing in such a short period of time. She was able to nurse for the first time this afternoon 3x (again, they were worried about her latch because of the right side of her mouth). We aren't sure how much milk she's getting, but she is nursing. She's very groggy because of the seizure medication, but has grabbed for us several times. We don't know her cognitive state. She does still call for me "nananan", but it sounds different. Her cries are different too, but again, we aren't sure if this is exhaustion, drugs, or just how she is now. Our pediatrician said she has surpassed his expectations for her thus far, so we need to remain praying and hopeful for continual growth.

She had an eeg done today and is still hooked up with wires all over her head to track the seizures in her brain. She also had an echo of her heart done to see if the clot could have started from there. Her heart was absolutely fine. They've ordered massive blood work. They still don't know what caused the stroke. Both the hospital team and the peds office filed a notice to the cdc about the vaccination though. In my gut, I really truly feel that this is the cause. Even online there are several cases of strokes, and seizures from the vac. My doctor told us today that he is writing both our children a medical exemption from further vaccinations, and for kayla specifically he would not give her another shot, period. He's amazing. Again, they can't say that there is a link, but it's troubling.

How are we? Holding up. I can't sleep. in the past 3 days, I've slept maybe 2-3 hours. Benji is doing remarkably well. Both Andy's mom, my parents, and his sister and her family are here with us. We have the support of all of you, which again, I am so grateful. I know many of you have sent me messages and I probably won't have time to respond, but I really thank you from the bottom of my heart. I have my cell here 419-5579 and we can always be reached in the PICU (room 9) at strong. I don't know what we need. I'm at loss. Right now a shower. :)

Thanks everyone.
Jenn, Andy, Benji, and Kayla