We are here!
Please help us help our friends get the care that their daughter, Abby needs.-
Heather & Andie
Dec 8th Update:
We’re a little over two weeks into Abby’s inpatient stay at John Hopkins. She’s struggling. The environment is so foreign to her and so far outside her comfort zone that in some ways she’s regressed a bit. Her doctors have also seen some improvements and guarantee me that she is where they would expect her to be in this part of the process. It’s going to be a LONG road but I am hoping she starts to see some steps forward which will positively impact her each day. I can’t imagine being 15, away from all your comfort items, your service dog, and parents all while dealing with a very fluid disability. I am so proud of her strength and willingness to try, and she is trying as hard as she can.
Her team continues to be amazing, the best we could ask for. The current plan is for her to remain at the inpatient rehabilitation center for 2 more weeks. She will be home for Christmas!!!!
In early January she will start the step-down outpatient care also at John Hopkins Kennedy Krieger Institute. The projected time for outpatient care will be 4-8 weeks. She will be working with her team Monday – Friday ALL DAY. We are still getting details but the plan is for myself and Abby to stay in a hotel close to the center and for me to bring her each day for care. I’m sure there will be some tag teaming with Keith as he’s able. We haven’t decided yet if we are going to come home for the weekends, I think we probably will.
During the time Abby has been at the hospital Jupiter has been staying with his trainer and working on tasks that will benefit Abby when she is discharged. We are so grateful that your donations have enabled us to do this.
We feel we’re in a good spot, we have help from family and friends and because of everyone’s donations will be able to cover the hotel stay in January and February. I’m going to close down donations at this time as we really feel we are in a good spot. I can’t thank you enough. All donations are going directly towards Abby’s hospital bill, Jupiter’s continued Service Dog Training, and the upcoming hotel stay.
I have been working as much as possible while home and although I am not where I usually am this time of year I am so grateful to have wonderful customers who continue to purchase and support my business, even if there are slim pickings!
I will continue to post updates here as we get them.
THANK YOU SO MUCH FOR YOUR SUPPORT
Update 11/24: There are no words to express our gratitude to everyone who has been able to donate and share our story. Thank you! Our second full day is almost done. Hard doesn’t even come close. Abby is working well with all of her therapist and everyone here is so kind, patient, and attentive. This morning started with a 4 hour seizure, then OT, PT, Psychology, lunch, OT, PT, PT again, dinner, and now a group crafting session to make Thanksgiving centerpieces. Kennedy Krieger had set up a cute table for Abby and I to have Thanksgiving lunch tomorrow. After that, I leave my girl here in the hands of her team. So many conflicting feelings. Grateful that she is here and hopefully on the road to healing. Terrified she is here without me. It’s going to be a huge shift from literally 24/7 caring for and worrying about her to letting this team do that for her. It’s a lot to comprehend and accept. This is not a quick, easy process and there is no “cure”. She will have FNSD and PNES when she comes home. The goal is to retrain her brain and teach her coping strategies and tools to lessen and manage her symptoms. It’s a lot of hard work for her: Next week will begin our back and forth as we meet with her team and start caregiver training to learn what she is learning. I am going to try to work as much as possible in between and spend some quality time for Zack and Meg who haven’t gotten enough from me lately. Thank you for continuing to share and donate if possible. We have a lot ahead of us and are so grateful for the support. Update 11/22: WE ARE HERE!!!!!!! We got the call this morning at about 10:30 that insurance has decided to reverse the denial and approve her inpatient care!!! It’s a lot to take in. We checked in late this afternoon and Abby has been settling in and trying to make her space feel like “her” in any way she can. We’ll meet her full team and figure out the plan tomorrow. This new step is a lot. It’s going to be hard for her, hard for us, and A LOT of hard work. THANK YOU to everyone who has donated and shared our story and link. PLEASE continue to do so if you can. We are so very thankful. While we are here I have had to stop working completely during my busiest time of year. Abby and I are the primary trainers for Abby’s service dog, Jupiter, so while we are away he has gone to do intensive training with his trainer. The cost for this training is $1000 per week ….. believe me, IT IS WORTH IT. When Abby comes home Jupiter will be such an amazing help to her and we can’t let his training fall behind while we are gone. He gives her such support and freedom that she wouldn’t have otherwise. Co-Pays and Deductibles are coming our way soon. We will also be doing a lot of back and forth so nights in a nearby hotel are in our future. It all adds up so fast and we are so grateful that we have so much support to help us through. This next step in Abby’s journey is scary. We don’t know how long she will be here yet but we do know that she is in the right place with the right team of doctors. From her mom, Amy: “I remember clearly the day that started this journey for Abigail and our family. September 30, 2019. Abby had been complaining about this weird muscle thing in her neck, said it was annoying. She had just completed competing at the National Championships for Archery so I thought maybe she pulled a muscle. I told her to let me know if it got worse, we applied ice and I gave her some Motrin. A few days passed. I was out shopping with Abby and her older brother Zachary and I saw this weird involuntary neck movement, like bending your ear to your shoulder but really fast. I asked her what the heck (let’s be honest, I probably said what the hell) that was. Both Zachary and Abby said that was the weird neck thing that’s been happening. I was surprised that it was an involuntary movement, not a pulled muscle as I initially understood. I made light of it, Zachary made light of it, so did Abby …. I kept an eye on her throughout our shopping and noticed that it continued to happen … a lot. I decided to count on the way home, still not saying too much but feeling that “mom gut” feeling that this was much more than she was making it out to be. We had a ten minute ride home and I counted 9 neck tics. I’ve always been one to follow my “mom gut”. We got home and although the jokes and humor were strong, my stomach was dropping and I was mentally preparing myself for what I knew was something “wrong” with my girl. I was making a list in my head, sorting through what I knew, figuring out what to do next. October 2nd we saw our Pediatrician. She said Abby had an adolescent tic caused by stress, gave her Prozac, and off we went. I was leaving the next day on a trip to visit my sister and Mom but I almost canceled. I knew this was not “just an adolescent tic”. I was away for three days. I remember landing in Oregon and as soon as I was in the car with my sister I started calling doctors. I scheduled a Pediatric Neurology appointment at VCU for October 23rd. In the three weeks between the two appointments, her tics had progressed to almost constant neck tics, leg tics, and involuntarily punching herself. This was only the beginning of our continued journey. Abby’s symptoms have progressed and been very fluid over the last two years. Just two months into the progression of her disability she was dealing with physical tics that could/would affect her whole body, vocal tics, negative tics that would cause her body to freeze, self-harm tics, throwing tics (I can’t tell you how many glasses of water were thrown on people or dishes broken), holes in the wall (she’s really good at fixing drywall now), ER visits, our first 911 call, and more medication than I even care to admit. We’ve been to VCU, Children’s National in DC, Fairfax Children’s Hospital, and are currently being followed by a team at Kennedy Krieger Institute at John Hopkins in Baltimore. I’ve had her records reviewed by Mayo Clinic and have an appointment for her at Cleveland Clinic next month. We’ve gotten her MRI scans, CT scans, x-rays, blood work, therapy, hypnosis, biofeedback, neurofeedback, full cardiac workups, more medications, energy work, UVA medical trial, EEG, sleep study, and a research team appointment at NIH. All this while juggling the never-ending battle of Covid isolation, fighting the public school system to get her the Fair Appropriate Public Education (FAPE) they are legally required to offer her (I am STILL fighting for this), and keeping up with the needs of our other two children. Our family has been overwhelmed with doctors’ appointments, specialist visits, IEP meetings, more IEP meetings, and the reality that she is not getting better, she is getting worse. In April of 2021, we finally got the official diagnosis of FNSD with PNES … Functional Neurologic Systems Disorder with Psychogenic Non-Epileptic Seizures. We found a team of doctors at Kennedy Krieger Institute at John Hopkins that are confident in their diagnosis and KNOW HOW TO TREAT IT. So, we started the process of finding and getting her accepted to treatment facilities. We quickly realized that FNSD is not a very well-known disorder. It is a conversion disorder that falls in the grey area between Neurology and Psychiatry. There has been an exponential increase in diagnosis of this disorder since Covid so the few treatment facilities that are available are overwhelmed. There is no medication or “quick fix”. We are facing a long-term inpatient rehabilitation to retrain her brain. The most effective relief we’ve found has come from her service dog, Jupiter. He is starting to alert her to an event so she can try to sit down, he’ll lift her head and lick her face when she faints to help her come out of it, he’s learning to apply pressure and lay with her when she’s in a PNES event, he is learning to push handicap buttons to open doors, he is amazing. We purchased Jupiter from a breeder recommended to us by his trainer at Canine Matters LLC. They are like family now, I am so thankful for our trainer Christina and owner Claire who has helped us from the moment we knew we had to retire Teddy. A service dog and the required training are expensive … like really nice car expensive. Jupiter is almost 9 months and is already such a big help to Abby, however, he has over a year of training ahead of him. It is worth it, every penny, but it is a financial commitment that is overwhelming at times. What her day looks like now. Abby’s functional hours in a day are reduced to about 3-4 hours. By functional I mean, not stuck in a PNES event. Her PNES events last on average 5-6 hours. Think about a typical seizure you’ve seen …. Involuntary jerking, tensing of muscles throughout the body, eyes rolled back, back/neck arching … now think of going through that for 5-6 hours nonstop, EVERY day. When Abby is out of these events she is exhausted, her whole body hurts, her head is fuzzy, she has a constant headache, and that’s not it, she’s not “free” once she’s up. Her FNSD also causes her to lose consciousness and pass out for brief periods … I’ve counted 40+ times in an hour. She’s at such a high risk on injury due to falls that she requires a wheelchair when out of the house. She still passes out when seated and when lying down. So her “functional” hours are still interrupted by these shorter episodes. On October 13th, 2021 we met with a team at Kennedy Krieger Institute who got her, have successfully treated patients like her, who gave us HOPE. She was put on a waiting list to enter their inpatient program. On Tuesday, November 9th we got a call that they had space for her. I felt like I could breathe for the first time in two years. It’s a lot to take in and we spent that week before we were scheduled for admittance on November 16th preparing Abby for a long-term stay without us. The program allows a parent to stay for the first three days and then Abby stays for 4-6 weeks of intensive inpatient care. I trust this team, I know it’s what is best, I know it’s what will restore her functionality and give her the future she deserves. On November 18th we received the news that our insurance has denied the admission and believe that Abby can recover with outpatient care. THEY ARE WRONG. I can’t consistently get her to doctor’s appointments or therapies due to the long and unpredictable PNES episodes. If I am able to get her there she is usually passing out so often that the efficacy of the appointment is lost. So now we are dealing with appeals. The out-of-pocket cost for this level of care is $4000 – $5000 a day. There are no words to describe having HOPE and a functional future for our girl dangled in front of us only to be taken away by a system that is so broken. They look at the bottom line and do not look at my 15-year-old daughter who has lost her life to this disability. I’ve spent a good part of the last day crying … ugly crying. The past few years have been nothing that I ever thought we’d be facing as a family and nothing that I would wish anyone else to have to go through. When a child has a chronic, debilitating, progressing disability it affects the whole family. As a stay-at-home mom with my own business, I am lucky, we are lucky. I have the flexibility to take her to specialists, to be home with her, to make all the phone calls, to fight all the fights but all of those things take Mom away from our other children. We are lucky; Keith and I have a solid marriage and easily navigate a day that could easily break us. I am usually so exhausted by 5pm that I have no idea what’s for dinner, Keith will come home and make dinner. I’m in and out all the time with doctor’s appointments, IEP meetings, phone calls, emails, and simply making sure Abby is safe and comfortable. I’ve missed my other kids and they miss me. We’re tired but don’t have the luxury of stopping so we continue to fight for our girl. I don’t know what the next day or week will look like but I know that we will not stop until we can finally get Abby the medical care she needs and the education she deserves. “