Helping Layla

UPDATE: September 2, 2019 When Jess and the kids moved to Kansas City to be closer to her doctors, the hope was that Children's Mercy Hospital would be able to treat both of Layla's conditions, Amplified Musculoskeletal Pain Syndrome (AMPS) and Functional Neurological Disorder (FND). However, after further review, the team of doctors felt they did not have the experience or the resources to provide the intense treatment Layla needs for the FND. Instead, they reached out to a couple of different places and found a pediatric rehabilitation program at the Kennedy Krieger Institute in Baltimore, Maryland. The team at Kennedy Krieger has reviewed Layla’s case and accepted her to their rehab program beginning September 23rd, assuming there are no issues with insurance approval between now and then.  When Jess arrives at Kennedy Krieger, she will get Layla settled in and receive some training as a parent/caregiver.  Then, once the rehab begins, she will not be able to be with or even see Layla during the 8 week rehab program. The reason for this is that during the process of retraining Layla’s brain, even a loved one’s body language and caring gestures can reinforce the FND.  We have to break that cycle, and it will be very hard! Jessica will come home for six weeks, and then return to Baltimore to do two weeks of training. Layla and Jessica will be able to “communicate” on the phone every night (with help from her medical team, seeing as she doesn’t have the ability to speak right now), and the medical team will call with a progress update every evening. This will be a very difficult period of separation for Layla, Isaiah, and Jessica, but they  are excited at the expectation that during that time, Layla will regain much of her function and ability to speak. When Layla completes the rehab at Kennedy Krieger, she will still need to undergo treatment for the AMPS, so she will do the Inpatient Rehab Clinic at Children's Mercy here in Kansas City, when she returns.  It is still a very long road to recovery, and that road is not an easy one for Layla or the rest of her family.  Many of you have asked how you can continue to help Layla. With the upcoming trip to Baltimore, there is a need to help raise funds for travel expenses, vehicle maintenance, in addition to a few other necessities. If you are in a position to be able to help support Layla, Jessica, and Isaiah in this way, we would appreciate any donation you can offer. It’s been over a year since we last asked for financial assistance. Jessica has managed those funds well, but since she is Layla’s full-time caregiver, she is not able to hold a job. She is hopeful that will change in the coming months! Again, your financial gift is needed and very much appreciated. On Jessica’s behalf, I thank you! You have helped play a very important role in Layla’s journey. Many of the trips to the various specialists and hospitals would not have been possible without you! We can't tell you how much we appreciate your prayers and support on this journey! *****Original Post from 2018***** Layla Vega began experiencing severe neurological pain in January 2018. Since then, her condition continues to rapidly deteriorate. Her mother, Jessica Vega, is a single mom. Because Layla is housebound and  requires full-time care, Jessica will be taking a leave of absence from her job as a teacher. As such, she will not have an income. I am setting up this campaign to help raise funds so that Jessica can continue to seek the medical treatment Layla requires, and to help with living expenses. Your generosity is greatly appreciated!   Here's an update from Jessica, posted on July 19, 2018 at the Helping Layla facebook page: Layla had an appointment with a rehab doctor at Children's on Wednesday, and we didn't get any answers, which I knew we wouldn't. This appointment was to see where she was at physically, and to see if she would even be a candidate for in-patient rehab at Children's. She was not a candidate, which I already knew, but here are the reasons why: 1. She doesn't have her pain managed and they won't do therapy without it being managed. From what the doctor told me, they don't do pain management at that hospital...... 2. Children's does not have the "tools" that Layla would need for her physical rehab. 3. Layla would need a more intensive PT/OT/Speech facility for a longer period of time than what Children's offers. The rehab doctor mentioned a couple of hospitals that have the rehab/pain management that Layla would need. One of them happens to be the one that was our back up plan if the pain management here in AR fell through.....and that's exactly what it did on Monday. She spent an hour talking to us, ruling some stuff out, making notes to confer with some other specialists, looking into a few other medications that could possibly help, and talking about the many options of pain relief that should have been introduced to Layla early on (she said the lack of non-medicated pain relief offered to Layla was based on the lack of knowledge of the specialist. She wasn't dogging anyone, she just told us that, unfortunately, we have been on this merry-go-round of dealing with doctors that didn't have the slightest clue as to what to do, and in turn, has probably caused more damage than need be). The doctor did say what I had been saying all along, which was "How can you treat the pain if you don't know what's causing it?". She'll do a follow up via phone to let me know if she found any leads as to what may be causing Layla so much pain...what started it.   So, what am I going to do until then? Well, I'm not going to sit around for two weeks waiting to hear back from the rehab doctor. I have a list of doctors/facilities that I'll be making contact with over the next several days to see if I can find someone who has the knowledge and experience to figure out what is going on with my baby and how to fix it! Not many of you know, but Layla has lost the ability to verbally communicate at all. I have stressed, worried, and cried over her slow decline, but a few days ago when she and I both realized that she couldn't verbally communicate with me, my heart broke. She had lost the ability to do everything else, and now she can't even talk to me. I see the frustration in her eyes and the helplessness when I can't understand her hand signals, and it hurts. I have a baby monitor that I now lay by her head so that if she needs me all she has to do is make a noise with her throat. I have been sleeping with her the past few nights, so all she had to do was reach out and touch me if she needed something, like helping her roll to her side.   Now that we're home, and she and I both want to sleep in our own beds, I'll be getting up a few times at night to go roll her to her side. We try to make light of it, joke a little bit about it, but I can tell that this is wearing on her too. I want to thank each and every person who has taken the time to pray for my sweet Layla Mae and my family, who have sent words of encouragement. who have offered to help in so many ways. My words of appreciation wouldn't do justice for my gratefulness for you all.   Please, continue to pray for complete healing. God bless you all ❤️ -Jessica