Hello from Boston! Thank you all for your continued support and interest in Sherrin’s journey through her traumatic brain injury. I wanted to give big updates! For those that follow the Facebook page, you noticed that Sherrin has been doing an intensive therapy program at Spaulding Rehabilitation Hospital in Boston since early July. I’ll let my dad update you on how we got here:
“After Sherrin’s foot surgery in February and her feet returned to neutral, the most important thing was to get on her feet and really try to get her to walk again. Her Doctor at Walter Reed suggested an intense in-patient therapy session. I initially tried Virginia Commonwealth University (VCU), but was hesitant based upon what I have reviewed on its website I was not sure that they could help. If you recall, when Sherrin first got hurt we had to travel to New Jersey to get her the care she needed. Virginia does not have a good reputation for the care of the brain injured and still sends it’s more severe out of state. However, I did contact the VCU inpatient admissions person and sent her Sherrin’s medical records and release forms so they could begin the process. I also gave her Sherrin’s website (this one) so she could see how she has improved over the past couple of years.
On a hunch I contacted Spaulding Rehab in Boston and asked them if they would be willing to accept Sherrin on an in-patient basis. I sent the same information to Spaulding that I sent to VCU and awaited their decision. Spaulding has an incredible reputation and is linked to Harvard Medical School. To me, it was absolutely clear that Spaulding would give Sherrin the best chance for her to regain the capability of walking. The next day I received a phone call from Spaulding telling me that she would be accepted for in-patient intense therapy. Spaulding made a decision based upon the same information I sent VCU, but VCU could not or, more appropriately, would not make a decision to admit Sherrin. The decision was easy; Sherrin was going to Boston. The next hurdle is how to get her to Boston? My research indicated that Medicaid should be able to pay for it, but going through the Medicaid bureaucracy was going to be a challenge. The minute I got push back from Medicaid, which was almost immediately, I contacted our local Congresswoman and asked her staff to get involved. Miraculously, within about three days Sherrin was approved for transport to Boston and Medicaid agreed to pay lodging and incidentals for one.
When I told Sherrin’s attending physician at Walter Reed she recommended a Doctor at Spaulding that she training with at Chicago Rehabilitation Institute and we were lucky to get him for Sherrin at Spaulding. The good news is that both Doctors are working together and once Sherrin gets discharged from Spaulding that can develop an outpatient therapy plan that complements the progress she makes in Spaulding.
Me (Kaci) again. The intent was for Sherrin to complete a 3-week program. The doctors and therapists have been very pleased with her progress and have wanted to continue working with Sherrin for as long as possible, so now the entire length of the program will be 5 weeks.
We came to Boston on July 10. My mom flew the night before, my dad drove the wheelchair van, and Sherrin and I drove in an ambulance. Let’s just say that 10.5 hours in an ambulance ride isn’t the most relaxing experience, but we needed a vehicle that would allow Sherrin to lie down and stretch occasionally. If she had to sit in her wheelchair the entire drive, then her back would be incredibly sore and uncomfortable. So, the ambulance it was! While in Boston, my parents and I stay at a hotel about a half-mile from Spaulding. One of us always stays the night with Sherrin and we rotate “shifts.” She still needs help at night, unfortunately. Someone has to turn her every two hours and change her diaper as needed. My family has done this routine before but it is still just as exhausting with one person always sleep deprived. It is very rare for all 4 of us to be in the same room since one of us is sleeping at the hotel. I would say that this is definitely the hardest part about being away from home.
Sherrin has been excelling since she’s been at Spaulding. Occupational therapy has been focusing on using e-stim to wake up her shoulder and back muscles. Sherrin has been
having problems with her right shoulder ever since the accident due to 1) the broken clavicle and, 2) her right side being more sluggish than the left. Since muscles hold joints together and Sherrin isn’t using the muscles in her right arm so much, her arm is slowly dislocating from her shoulder. The e-stim forces her muscles to “wake up” and put back into place. I was very skeptical at first with using e-stim since I’ve seen it done before and haven’t been that impressed, but I was BLOWN AWAY when Sherrin’s therapist put it on her right shoulder. Sherrin looked so relieved the second the e-stim kicked in, relieving so much back pain that has built up over the years. Her right arm has gotten so strong in the past month. She can pull her arm across her body and rotate her hand. The goal is for her to start feeling how these muscles work and eventually use the muscles on her own.
Physical therapy has been predominately all about Sherrin walking (which I love!!!!!). We originally wanted Sherrin to be in an exoskeleton to learn to walk since it’s an incredibly high tech device. There are only a few dozen exoskeletons in the US and, luckily, Spaulding has one. However, the exoskeleton wasn’t right for Sherrin since she has much more
muscle than someone who the exoskeleton is intended, such as a paraplegic. Sherrin’s physical therapist suggested a gait trainer instead; a device similar to a walker but has a harness and other attachments. This allows Sherrin to use her muscles to walk vs. an exoskeleton that does the walking for her. Sherrin has gained incredible strength in her hips and hip flexors since using the gait trainer and I’ve seen such amazing progress. We’ve already ordered one and have a gait trainer waiting for us at home so we can continue the walking progress.
PT and rec therapy have also been trying fun things with Sherrin that we normally wouldn’t be able to do at home. Sherrin has been riding an actual bike outside and in love with the feeling of the wind in her hair! This week we’re going to get Sherrin in the pool for a swim lesson and then a kayaking trip on Thursday. I’m particularly excited about the pool. I think Sherrin is going to love the feeling of weightlessness in her body. We’ve wanted to get her swimming before, but due to her g tube and the risk of water getting in it and going directly into her stomach, we’ve had to pass up the opportunity. Spaulding has assured us they have the capability to patch the g tube site so that there is no chance that water can get through. Check out the Facebook page for updates!
Spaulding is a phenomenal and truly beautiful facility. The entire staff from the aides, to the therapists, doctors, to the nurses have been top of the line. The hospital sits directly on the Boston Harbor overlooking the Boston skyline. The halls are quiet and clean, unlike some other hospitals where we’ve spent time (looking at you National Rehab). We watch boats and ships go by all day and have truly made ourselves at home here. I feel like I’m at a beach resort!
Sherrin has also gained a new best friend, my boyfriend, Casey (yes, we have the same first name). He and I have been together for about a year and he has completely devoted
himself to Sherrin. He helps with her workouts and when he’s not with her, he texts her throughout the day just to see what’s going on. I really am blown away by how well they click. He and Sherrin have this sweet relationship where she calls him her “little bro” and he calls her his “big sis.” She lights up whenever he walks in the room and he tries to teach her new handshakes. I am truly so lucky to have someone like him who willingly took on Sherrin as one of his priorities. He treats her like an equal. And when Casey came to visit to Boston, Sherrin’s and I were eager to get our third amigo back.
I think the most exciting part of the Casey and Sherrin relationship is that she remembers him. Like I’ve mentioned before, Sherrin’s short-term memory was severely damaged, so anything that has happened since the accident often gets forgotten if it doesn’t get repeated. Sherrin has only known Casey for a year but she knows everything about him! She knows his full name, his home state, and that he recently finished law school. Casey told me he was determined for Sherrin to remember him, and I am so thankful he stuck to his promise. We love you, Casey!
We will be heading back to Virginia next weekend. Please check out the Facebook page for more updates and pictures of Sherrin during her last week at Spaulding. Peace, love, and Sherrin!