March 3

It's hard to believe it's already Thursday. I don't think I'd ever get tired of sitting by the pool or on the beach...especially with a drink in my hand and no clouds in the sky. I've already read a whole book since we got here and Dusty just went to the front office and found me another one I could borrow...I guess they have books there that people can use while they're here. It feels good to be able to read whatever I want, but I'd actually rather be studying or reading school material- as crazy as that sounds. I look forward to getting some of my school stuff together once I get home and back into a routine. I don't plan to return to Philly until August, which is when I left off last year, but I need to stay on top of the material and keep it fresh in my mind. I can't wait to be back in clinic and seeing patients again, especially with everything that has happened...I think it's really going to give me a different outlook.

Dusty and I explored the resort a little bit yesterday afternoon. There's actually a resort next to us and we wondered over there. Dusty said he'd been thinking about it and realized it's been a long time since I've seen green grass...he then helped me scoot forward so I could feel the grass on my feet. It actually felt kind of normal! It was really sweet...I hadn't really thought about it. It's crazy the kind of things we all take for granted.

I only got a few pictures of us on the boat, but trust me, pictures wouldn't even begin to describe the experience. Men think they can do anything because of their strength...get me and the wheelchair onto a boat? No problem! Yeah, right. Dusty and his brother pushed me down the beach in the chair, on in front and one in back. I'm not sure how many men tried to help, but somehow I was in the wheelchair in a tiny boat and then picked up and put onto a bigger boat. They then used flip flops to hold the wheels in place on the boat, haha. The views from the boat were worth the trouble of getting on and off it though. 

There's a whole team of people at the resort whose job is entertainment. How awesome would that be to get paid to have fun all day- play games, dance, meet new people- all while in paradise. I think we helped them with their job yesterday though. We had everyone's attention between making it up and down the beach and on and off the boat. 

March 2

Not much has been going on- which is a very good thing! I've been sleeping in, eating breakfast, going to the beach, eating lunch, going to the pool, going to dinner, going to the bar or hanging out, then repeating the next day. It's been so great. As if our vacation couldn't be any better, Dusty got a phone call yesterday saying he got the job he interviewed for last week! He hasn't had a normal 9-5 job in the field he wants (local government) because he's still a couple classes short of his masters in public administration and those jobs are hard to come by without your degree or experience. It's a job in Loudan County with benefits that is perfect for him, allowing him to split his time between in the office and on site. He doesn't start until the 24th, but we think this is the beginning of our luck turning around and a fresh start. 

Speaking of a fresh start, we talked to Baltimore yesterday and they said they couldn't schedule me until the 28. We were a little disappointed because I can't wait to get started. Mom talked to the woman she's been in contact with this whole time, Angela, and she was a lifesaver- somehow working it out for me to start NEXT TUESDAY! We even have housing, but are still looking into other options that may be a little less expensive. I'll be doing spat and aquatic therapy, then try to schedule OT as soon as there is an opening. I'm so ready to get there and work hard.

Dusty, his mom, sister and cousins all got in a banana boat yesterday and it was amusing to watch. Then Dusty talked to some resort staff and scheduled a snorkeling trip for the whole family...I don't think I'm going to snorkel, but I'm excited about getting into the boat and seeing the reef and sand bar. The water is so beautiful! 

I've also decided to treat myself to a facial and pedicure Friday before we leave- the ultimate relaxation! 

February 27

We left for DC Friday evening because our flight left at 6:30 am Saturday morning. We stayed at a hotel just minutes away from the airport, so it was perfect. When Dusty and his family checked in, I wasn't with them, so they made the assumption that they didn't actually need a handicapped room and changed it without us knowing until we got to the room and realized it wasn't going to work. They were so apologetic, but it made me wonder if people actually do that... I'll admit that I'm guilty of using the handicap parking spaces thinking "I'll only be a minute..." What I didn't realize is how much that may affect someone who actually needs it. Everyone around me has been made more aware of the necessity of all things labeled "handicap" and especially those things that lack that label when they should have it. It's something we run into all the time. I'll tell you about our day of travel and you'll understand...

Our taxi got to the hotel at 4:15, needless to say, we didn't get much sleep. Things went fairly smooth in the morning, though, and I rode on my first handicap taxi. I was surprised at how easy it was. There was a ramp in the back and I wheeled up it no problem. We waited in line to check in, but that was pretty much the only line we waited in. JetBlue was so good to us! We got moved to the front of the line at security (ALL 7 of us). 

 I was first on the plane for our trip from DC to Florida. Dusty transferred me to this little tiny aisle chair. It was barely big enough for my behind! They fastened straps around my shoulders, waist, and two down my legs. I don't know how anyone bigger than me gets down the aisle in that chair...the space between the seats on the plane is so narrow, I'm surprised my thighs even fit through!

They actually had my regular wheelchair waiting for us when we landed in Florida. And one of the JetBlue employees wheeled me all the way to our next gate. She even made sure the whole family was together (bathroom breaks and all).

The next flight was a little longer. They warned us that Punta Cana would use some sort of elevator to get me off the plane since they don't really pull up to the terminal, they use one of those moveable flights of stairs. It was just our luck that the elevator contraption was broke when we landed. Dusty had even said he didn't have a good feeling about it when we were landing and I said "why, because the airport looks like a straw hut?" Haha. They used a similar aisle chair as the US, but of course, there were only shoulder straps so I was practically falling out. Then, no lie, FIVE men carried me down the flight of stairs like an Egyptian princess. It was hysterical. You couldn't help but laugh. I wish there was a video! 

One of the men that helped me off the plane stayed with us, got our baggage, let us skip the customs line (!!!), and helped us find our shuttle. Dusty has never been out of the country, so he had no idea what a disaster the customs line can be. Luckily, he didn't have to experience it. The employee took us all the way to the front, past hundreds of people and probably a few hour wait. 

The shuttle to the resort was another adventure (and the driver was no Herb!) Dusty had called repeatedly to make sure everything was handicap accessible, but that has a different meaning around here. It would've made my parents and therapists cringe, but Dusty and his brother got me into the shuttle...we'll leave it at that haha. 

The resort suite was also supposed to be okay with the wheelchair, but surprise, it wasn't. My loaner wheelchair is literally half an inch too big for the bathroom doorway. The first night and day here were... Interesting.  But Dusty's cousin just found a wheelchair that fits in the bathroom, so showering and getting ready will definitely go better this evening!

 

February 25

What an amazing day! I was so overwhelmed and brought to tears on several occasions (but surprisingly held it together). First of all, the drive to Baltimore was super easy and felt much shorter than that drive to Philadelphia. We got to Kennedy-Krieger and were able to drive right up to the front and get out (there's a free valet service). The building itself was impressive right off the bat. The parking people and security lady were all so friendly and welcoming. 

Two nurses brought me back to an exam room and one took my vitals, then left. The other gathered my previous medical history before she left. Then Dr. Recio and his resident came in to complete their exam. We thought it was a joke when we were told it'd take over two hours, but were surprised at how fast that time went- and the doctor was with us, teaching us the whole time. I really liked the doctor and how knowledgeable and friendly he was...he was funny and also answered all our questions. No, we still aren't positive what caused everything, but many other questions were answered. It'd be nice to know what caused all of it, but honestly, as long as I keep getting better, I really don't care that much. Of all things going on, that's not my biggest concern anymore. However, we did get an email from one of my UVA doctors yesterday morning. She had heard back from San Francisco (where they sent my spinal fluid) and they were still unable to detect a specific bug or cause for the illness. She thinks the sample may have been taken too long after the initial presentation or that everything was a type of autoimmune reaction to an infection, rather than the infection itself. That still doesn't tell us too much, but it's at least more than we knew before.

Dr. Recio assessed me head to toe with this instrument that vibrated and I had to say if I felt it, when the vibration stopped, and if it was normal (compared to how it felt on my face). He then did a head to toe assessment of my reflexes and said they're ALL intact! This is a big deal because when I got to Magee, my lower body had no sensation or reflexes...I didn't even have tricep reflexes. He made the comment that just like how I used to just have the reflexes in my arms and now they're 100% recovered, my legs now have the reflexes...like that's just the next step in recovering. They also did a head to toe assessment of sensation- dull vs sharp. That's where it got a little harder for me to tell the difference.

He used the white board to draw things out as he explained them. He determined that my injury level is T5 ASIA B. T5 is the level on the spinal cord (thoracic), and ASIA B is the classification.. 

He said my injury was originally medullary (brain stem) and would've been classified as ASIA A. He prescribed 3 hours of PT, an hour of OT, and an hour of aquatic therapy every day for two weeks starting in March...it has to wait a little since I'm going to Punta Cana next week and everything has to be approved. Also, we're just starting with two weeks because that's easier to schedule and we'll see how everything goes with therapy and keep reevaluating as we go. 

I loved how confident he was and excited about things I could do...this is an amazing institution with many miracle stories and he's excited about me? That must be a good sign! When there were things I couldn't do, he'd say "not yet," which kept me feeling positive. He had asked me what I hoped to achieve and I said "more core strength, balance, and leg strength." He wants me to use stim on my legs and core while at home and in daily activities to get the muscles stronger. He said we've got our work cut out for us, but those weren't unattainable goals.

There was probably more that happened and I'm forgetting to mention, but we were so overwhelmed! If I remember anything extra, I'll mention it later. 

I spent the evening packing for my trip- something very hard to do now that I need more things and that I can't help as much...I also have no idea where some of my stuff is since I don't remember much from when I got sick and because I wasn't there to pack up and move out of my house the other week. Fortunately, I have new clothes from Mom and Maureen and both my parents were patient enough to go through my things and find everything I wanted to pack. 

I know traveling is going to be different for me in a wheelchair, but I'm not too worried about that. I'm a little stressed about keeping all my stuff organized and needing too much or taking up too much of everyone's time. (I love Dusty, but he's not as organized as Mom, haha). But Dusty keeps saying not to worry about anything- easier said than done because I've always been one to stress about everything! Last night Dusty said "I promise I will make sure everything goes smooth. It's going to be easier than you think." He also said "I know you're worried, but I promise I'm going to take care of you." I told my mom about that this morning and it made her get a little choked up. I'm so thankful everyday to have someone love me as much as he does (but he doesn't like to hear how great he is, so don't try to tell him).

I'm not sure about wifi and if I'll be able to blog, but I will if I get a chance...if not, say a prayer for a relaxing week in paradise!

Here's what was on the wall when I entered the building yesterday: 

I am full of hope. 

February 24

I felt so incredibly loved today. Sally joined us at the pool today and said how much of a difference she's noticed since our time together in Philly. I can't really tell much of a difference in myself on a daily basis, so it's nice to hear from someone who doesn't see me daily.

While we were gone, Maureen delivered the sweetest package...I got home and it felt like my birthday came early! She wanted to give me stuff for my trip next week and it was really thoughtful. There were brightly colored scarves, a tropical printed Vera Bradley purse and wallet, clothes, my new favorite chocolate, duct tape (because someone recommended bringing some in case anything broke...she even found a roll with palm trees and one with glasses), the list goes on. She said she gave up shopping for herself for lent and decided to shop for me instead...that made me laugh, but I'm so touched. 

My parents and I went to Dr. Wehner's retina office after the pool. I shadowed him in high school and have worked for him whenever I could ever since. He's taught me a lot over the years- not just about the eyes, but also about how to treat patients and how to run an office with great staff that actually like their jobs.  I hope to be as successful as him one day and pray my patients see me the way they see him. He's been so supportive while I've been sick and I can't thank him and his wife enough for all they've done...his staff has also been so diligent in checking in on me and  sending me cards, texts, and funny videos to make me laugh and let me know they're thinking of me. I've been wanting to visit, but today was the first opportunity I had. Everyone welcomed me with open arms and I just felt so overwhelmed by how much love I was shown...I'm so lucky to have people like this in my life.

Tomorrow is the first page in the next chapter...my appointment at Kennedy- Krieger is at 10am. Both Mom and Dad are going to be able to come and I'm glad I'll have that much support. It's supposed to be a medical assessment and an OT evaluation, but I'm not sure what any of that involves. I haven't really seen a specialist in myelitis (which is the closest explanation to what happened), so I'm looking forward to hearing someone else's opinion and getting a few questions answered.

I'm still trying to be patient, especially now that I've learned how long the healing process takes, so this was a nice reminder. 

February 23

I worked really hard again today...I'm not going to get better by taking any days off and walking is only going to be easier with more muscle and less added weight to carry around. I tried a new cardio machine at the gym that really worked both legs and arms- dad helped transfer me onto the chair and then mom helped use ace bandages to keep my feet in place. I did it for 20 minutes and logged 3000 steps! I hope to beat that tomorrow. I then went to the pool and for the first time stood completely on my own, someone didn't have to hold my knees to keep them from bending.

I got more bloodwork done to check my thyroid level and other things like calcium, potassium, iron, etc. My doctor even personally called me to tell me everything was completely normal except my thyroid levels are still a little elevated, so we're going to increase my meds a little. It's way better than it was and it's comforting to know all that hair loss was thyroid related and not something else (I already have tons of baby hairs coming in).

I feel like I'm constantly learning new things about that first month or so that I was sick...some of it is scary but some is actually funny. Like when I got blood drawn today, Mom talked about how awful it was to try to do it when I was in the hospital. They stuck me countless times- arms, wrists, hands, between the toes (ew, glad I don't remember that!) and they even had to do something to get blood from the arteries because they couldn't through the veins? Then we were watching a medical drama tonight and the doctors put this tube up a guy's  nose to reach his stomach for food and my parents said I had that before they put the feeding tube in my stomach...I'm REALLY glad I don't remember that! But for some of the funny things- apparently I was obsess with Little House on the Prairie and I Love Lucy and wouldn't let anyone change the channel...I never watch either of those shows and have no idea why I wanted to watch them..especially over the food network!

I fell into that pit of self pity the day before yesterday and it was hard to get out of it...I need to remind myself to keep focusing on the good because as soon as I start thinking about any of the negatives, it starts to consume me. What I wouldn't give to get up and make myself each meal, but at least I have a mother that enjoys doing it (and has me help to some degree). Or how badly I want to go to the gym like I used to, but at least I have loved ones that help make sure I get to the pool or do some kind of workout each day. I've said it many times, but a lot of good has come from the last six months and I just need to focus on those things and give Him continual praise for them so I don't fall into that it again.

February 22

Mom and I spent the morning on Kennedy-Krieger's website reading about the doctor I'm going to see and about all the testimonies/success stories. We were amazed and burst into tears more than once...I'm just so excited to see what the next step holds. They'd originally said most people do two weeks of intense therapy, but the doctor reviewed my chart and recommended I do four weeks.  We were also looking at all the equipment used and were pretty impressed with the technology.

Dusty helped get me down the stairs and out of the house in the morning and then Mom and I were on the go the rest of the day. It's crazy, but I swear there was more movement in the pool today than there was yesterday (I probably keep saying that, but it's true!) and standing up in the pool with the walker gets easier each time...I can do it longer with better posture and really try to put the weight through my legs instead of just holding myself up with my arms.

We went to Aldi and Costco, where I pushed myself around the whole time (it was exhausting, but I wanted the arm workout). I'm trying to eat a lot better- if you know me, you know that I always eat pretty healthy, but I don't like many veggies. And since I've been sick, I've developed the biggest sweet tooth...I used to have much better self control! So, I'm putting my whole family on a diet, haha. One thing I've learned is that you really need to take care of your body...I was in pretty good shape before I got sick and recovery is taking this long, I can't even imagine what shape I'd be in if I hadn't been working out and eating decent beforehand. Everything I do now takes a lot more energy, but it sucks not being able to get up and go for a run or hop on the elliptical (especially with my trip to Punta Cana next week!) The least I can do is eat healthier...I even ate zucchini and sweet potatoes last night (who am I?!)

When I got to Magee, Mom said she'd run a 5k with me when I'm better, so I think a diet is the best place to start. Stephanie and Dad even said they'd join. I wanted to be able to do it by Apple Blossom (an annual festival in our hometown at the end of April/beginning of May), but I'm trying to be more realistic as I've realized how long recovery takes no matter how hard I'm working. Dusty said he'd still run it and push me, which was really sweet, but we'll see as it gets closer. I'm also putting everyone through "Kelly boot camp" with how many transfers we do in a day, how many times someone has to go up and down the stairs when we're in the basement of the house, and by going to the pool each day. Before I left day rehab, I'd gotten two guys to stop smoking- Chris and Tim. Tim was struggling a bit with it, but on my last day, Chris couldn't wait to see me to tell me he hadn't had a cigarette all morning. I can't imagine how hard it must be to stop smoking, but I was really happy for them for trying. I hope they think of me giving them a hard time every time they reach for a cigarette now, haha.