Thank you for checking in on Linnea. I apologize, it has been quite some time since our last journal entry. Linnea has been generally healthy post-surgery for her implants and we are intently working on improving tolerated wearing times of her processors.  She has improved a lot- she will wear them up to 2 hours without taking them off at times, and most recently she asked for us to put them on by bringing our hands to the case and then her head. We had a little hiccup about a month ago when both her regular pair AND back-up pair of processors stopped working randomly- all one right after the other. They sent replacements for all parts and so far, we haven't had any more issues with her new pair. She has had several appointments to monitor her health following the meningitis. She is finally completely weaned off of her seizure medication but still sees Neurology to monitor. Her last vision appointment showed no further vision impairment, and her Immunology appointment showed that she did develop antibodies to the strep-pneumo vaccine with the 23 serotypes (meaning she will NOT need lifetime infusions!) She did see the geneticist to re-visit the situation now that we have more information about her disabilities as she has gotten older. The doctor ordered some extensive genetic lab testing which included samples from both parents plus hers. We were told it'd take about 4-5 months to get the results back- and they weren't kidding. I finally got a call this morning from the genetic counselor confirming that the results came back. A part of me was expecting something to show up- but another part of me didn't want to hear another diagnosis. They discovered a mutation in Linnea's PCGF2 gene a.k.a. "turnpenny-fry syndrome". The weird thing is that neither her dad nor I showed that we are carriers of this mutation- so it occurred because the biological process that copies genes each time a cell divides was not perfect and divided incorrectly on that particular gene. This isn't something that happened because of anything that either parent did during of prior to conceiving the child. It is so rare that only 13 people have been reported to have this syndrome worldwide. It was amazing when we read all the symptoms of this syndrome- Linnea has experienced ALL of them. Every since she was a baby, I knew there was something different and special about my girl. The autism diagnosis makes sense for many of her behaviors (which she still does have in addition), but it didn't explain everything. We are comforted that we finally have an answer, but yet it doesn't sit well in our stomachs to have yet another diagnosis. Because it is so uncommon, there isn't much information out there to research. We have yet to meet with the Geneticist to review what this all entails and ask any further questions we may have. 

Even with this news, we are so very joyful that we have such an amazing and strong little lady in our lives. She always has and continues to touch so many people's hearts with her cuddly cute little personality. Keep her in your prayers that she may grow to be a light for so many more people that come into her life. She certainly has Ryan, Trey, Veronica, and I wrapped around her finger. Love you all and thank you for your support.