Catheter Procedure

I have so much to say about the last 36ish hours, but I have no idea how to put it into words. I'm sitting here starring at the computer screen trying to figure out how to word it. Dr. Shroff requested we meet with a neurologist so we spent yesterday morning doing that. He came up with a couple syndromes/disorders/diseases that I have been tested for and ruled out, but he wants to run more tests that would fully eliminate them. We haven't had the chance to talk to Dr. Shroff about what she wants to do yet. To me it was just one more doctor to add to the other 150 I've seen in the past, I've become immune to meeting them and I feel like I am just telling them a script because I've had to repeat it SOO many times. It's nothing personal, it's just all that I've been through.

As I wrote in my previous post I was going in for a procedure, and I did. We left yesterday after my appointment with the neurologist, and returned "home" this afternoon. I was expecting to be there much longer than we were. It was a two day so I thought that would mean two nights and you come back the next morning, guess I was wrong considering I'm already back. The procedure I did is known as the three day epidural catheter, but Dr. Shroff and Dr. Ashish decided we should try two days first and see how I react. The target of this procedure was feeling. That's pretty much the target of this trip. Dr. Shroff thinks I will have feelnig by this weekend, and I was speechless when she said this. I am hoping I do, but I do not expect to have feeling this weekened. I am determined beyond belief to have feeling back, but I do NOT know when it might happen.

Dr. Ashish placed the catheter in the epidural area, but the stem cells get absorbed pretty much right away into the spinal cord. The main focus was the dorsal root ganglia because this is where the cell bodies of sensory nerves are. It makes sense if we are trying to get feeling. After getting my catheter in Dr. Ashish taped up my whole back, and then I rested on my back for four hours with the foot of the bed raised on bricks. After the four hours I was allowed to move around a little and I walked across the hall and visited with Gabe and Matthew because Gabe was getting a procedure done too. Dr. Ashish came in while I was over there and told me I was ready for my second dose and it was "punishment time again" this meant I was stuck in bed and not allowed to move for x amount of hours. The second dose I was only stuck in bed for two hours on my back with the foot of the bed raised again. Usually with the three day they have you rotate on your sides and stomach, but because we are REALLY going after sensory I was on my back the whole time. It's hard for me to explain exactly why that is, he explained it to me, but I don't really remember the correct terms. I was allowed to sleep in whatever position I wanted to.

When we got up in the morning I had an omelet and toast :) and met with a physio just to keep my legs going. After breakfast and fast physio Dr. Ashish gave me my last dose of stem cells through the catheter and I was in bed for two more hours on my back with the foot of the bed raised with bricks. When my two hours were up a sister (nurse) removed the catheter from my back and I was free to go. So far I haven't noticed any changes, but we are hoping that within the next couple days something will be different. I got over around 200 million stem cells in the past 36 hours. That is jaw dropping to think and really get your head around.

A couple of us went out to dinner, and boy was it nice to all be together again. We were laughing at old memories from last trip, and just hanging out. It was nice AND my first time eating Indian food since we left here. I sure missed the butter naan. I'm with a part of my family again, and I can't find the words to describe that feeling. On the walk home Raven, Ashley, and I were talking about how it feels like just yesterday we were here, and the last four months just kind of flew by now that we are actually here. It's a strange thought, and hard to understand unless you've been in that same type of situation, but it makes sense to us.

There's been a lot going through my mind about everything that I've been through lately and I want to let you all know how lucky I am to have all the support you guys give me and how fortunate I am to be able to do this treatment. When you are lying in a bed for days it's hard not to think about everything, where you come from, where you are going, and what this thing called "life" really is. It's difficult thinking, but interesting at the same time and sometimes it's necessary to just sit and pause for a moment. Don't miss the little things along the way, they are the most important :).

It's getting late so I'm going to try and sleep now! Good night and good morning :)

Jet Lag Does Wonders?

Second day here, super super busy. Thanks to my friend jet lag, I went to bed at 5PM woke up at 1:15AM wanting dinner, then fell back asleep and woke up again at 5AM and decided to start my day. It's amazing how much you can accomplish when you wake up so early. I had the chance to Skype with friends and family, unpack, shower, eat breakfast, and wake up one of my best friends (who got here early early this morning) all by 9:15AM. If this was last trip none of that EVER would've happened, you can ask my Mom and Hope all about that.

We woke up Ashley and Raven and it was SOO great to see them again. Raven was delirious and doesn't even remember us waking them up. Ashley almost pulled me into his bed he was so excited. It's been so much fun to be back together with Gabe and Ashley again. Ashley stopped by our room for about an hour earlier and we were talking about how neither of us have laughed quite as hard as we did playing ping pong. Gabe is actually in our room right now and has been here for about an hour. It's just like old times :) nice to be back with them again.

Dr. Shroff saw us this morning and was super excited about my walking, but kinda sad I didn't have feeling back yet. Her goal for this trip is to "attack" my brain and try to get the sensory and cognitive. Hopefully her goal will be achieved just like last time. We plan on doing a lot more procedures than last time and actually go in for our first one tomorrow. I'm doing the three day epidural-catheter in two days because they don't do procedures on Saturdays.

My Mom and I this afternoon went and got an "investigation" (also known as an EMG) done. It was a SUPER sketchy place, but hey you gotta do it. It went fine, not very sanitary and I've got some war wounds, but no problems. We get the results tomorrow morning hopefully.

Decorating, decorating, decorating. Everyone here knows our room as the decorated one. As many of you know last time we decorated too. My Mom and I say if we are living here why not make it look like we are. P.S. In the picture that is probably the best my bed will look all trip.

Time to go maybe get a ping pong game going :). As much I miss home, I've missed here just as much. It's the right time to be here, and I'm with my second family again. It's impossible to describe what it's really like over here.

Home Sweet Home?

I don't quite know what to call this place. I told my Mom we are going home, but I can't put India and home in the same sentence without it feeling weird. Gabe, who was here last time, calls it summer camp. He had the same conversation with his Dad about this being "home" and came to the conclusion, it isn't home. I think I've reached that same conclusion, this isn't home.

I feel like it was just yesterday that I was here doing everything, but obviously it wasn't. It's been four months since everyone here saw me last, and they are shocked by the results. It's such an incredible feeling to walk into a room, but it's impossible to describe to someone else. A couple of the doctors and nurses can tell on my face that there is something different, I'm alive again. They didn't see it last time I was here. My smile is bigger, my laugh is louder, I'm happier, and it's noticeable.

Of course I'm happy to be here, but I miss being home so much. This trip has been a lot harder for me to leave home. Last time it was this trip or nothing and I just didn't care about what was at home anymore, but now that I'm healthier it's hard to leave my pets, friends, family, and my everyday routines. I know this trip will be good, and I'm excited for whatever results I may get, but I have no expectations for anything. We begin our six weeks today.

The Time Has Come Again

Wow I can't believe it's already here. On Sunday afternoon my Mom and I will once again be on our way to India. It's happened so fast. As I sit at my desk writing this, I'm looking around at everything laid out on my floor ready to be put into a big empty suitcase, my cat snoring soundly on my bed, my dog coming in every five minutes because she wants attention, and my phone that keeps vibrating from friends saying their goodbyes. In three days all of this will be gone... again.
March 30th we land in New Delhi, India and will begin the second part of my treatment with human embryonic stem cells. We will be there for six weeks and are planning on being home May 18th. I'm excited and nervous all at once. Everything will be the same over there, same place that we stay, same accommodations, and same treatment. There are still no expectations for this trip. I got more than I could ever ask for last trip, I'm hoping that even more will happen and I know it will, but I am not expecting to come home with anything in specific or anything at all. Two of my really good friends, Gabe and Ashley, will be there while we are and I am so excited to see them again. This will be a whole new experience, but the same one at the same time. Another chapter in my story that I am lucky to be able to share with all of you.
Thank you for all of your support and prayers and I'm glad I am able to share my story with you as much as I can. I will keep my blog updated while we are gone, but it might take a couple days to get settled :).
Next post will be from India :)

Week by Week

Before we started this treatment about once a week a new symptom would pop up or something would go wrong. Since coming back in November I have yet to see myself go down hill. It doesn't sound like much if a week goes by and nothing has happened, but to me it means everything. One week will turn into two and two turns into three and so on. I admit to taking everything for granted before I got sick. I was living carefree and thought I was invincible. It wasn't a bad thing it was just how I lived. Now I am so thankful for each day that I get. A week out of a lifetime might seen insignificant when you look at the big picture, but to a lot of people a week could be a lifetime. It's really opened my eyes to everything we are missing in life. We all get caught up and forget to look at the little things that mean the most to us. Mountain View High School is having the Winterball this Saturday. A couple of my friends are going and convinced me to go and I am surprisingly getting excited about it. It'll be the first dance that my brother isn't going to be at and the first dance that I will get to actually dance at in a long time. It'll be a new experience for me and I'm excited for how it is going to go. I am going to start writing down at least one thing new to try each week. The dance is first on my list.

Two Month Update

It's been almost exactly two months since I left New Delhi and the changes I have seen since then are incredible. My mom touched on them a little in her previous post. The changes I have seen are: WALKING, sweat, cognitive improvements, and sleeping. I CAN WALK. If you met me today you would never know that I was in a wheelchair for eight months and am still learning how to walk. My legs can't yet support me for long periods of time. I'm okay for about an hour, but then I have to rest or I know my legs will start to get weak. I am doing physical therapy three times a week and doing home exercises seven days a week. Through that I can tell I am getting a little stronger and my walk is getting smoother and less noticeably awkward. My friends all said when I got home I walked like Frankenstein, totally straight legged. When I first got home I used my calipers, walker, and cane but I told myself I didn't want to rely on using these things so I slowly eliminated each one. I walked really slowly making sure I was doing everything correctly, but I've gotten to where I am today by doing so. I still have to concentrate really hard whenever I take a step, but hey it's a step!

I am still sweating, gross! Even though the weather here is nothing like it was in India I can still find I am sweating when I work out or when I am wearing to many layers. I hate sweat, but it is such a miracle that I am sweating. I am so thankful to actually have a reason to wear deodorant now! :)

My brain isn't functioning at it's full potential yet, but I know it will get there sometime. I haven't noticed big changes yet, but I think there are very very subtle differences. I have been working on a project for the past couple weeks and I think my brain has been able to keep track of it a little bit better than it would have four months ago. Hopefully I will keep seeing these changes and at some point in time return to school full time.

My sleeping patterns haven't changed much since we left, but getting that extra hour or so every night has been a really good thing. It always feels better to tell someone yeah I'm getting five hours now instead of four. I haven't been able to tell a physical or mental difference, other than losing an hour out of my day. My stem cells need the extra hour and hopefully I will start seeing the benefits from it soon.

I don't know how many of you check my blog anymore, but for those of you who do, Thank you and I wanted to give you all an update on how I am doing. We are planning to return to India for our second trip end of March or beginning of April.

We Are Home and My Girl Can WALK!

Monica walking out of airport to greet family & friends. Mitch (18), Monica (15) and Kevin (17)

Where do I begin? After a considerable amount of deliberation, Monica and I have returned home. I was torn because I FINALLY found a place that offered Monica not only the possibility of healing, but a place that was actually healing her. My mission has been to do anything and everything to get her well and now that I found the place I didn't want to leave. Monica was torn because she loved the staff and patients at NuTech along with watching herself make progress in her ability to walk, however she really missed her family, friends and pets. With stem cell therapy your body reaches a point where your "cup" is full and it is time to go home and let the cells have time to do their work. Our cup was full. We will again return in March for a six week "booster" and then probably one or two more times.

Monica's stem cells are the miracle inside repairing, regenerating, and replenishing everything in her body to fight the Lyme disease and her own disease. Now at home she has to treat herself special because the stem cells need to grow and develop based on how she trains and nutures them. Progress will continue to happen over time while we are home.

Monica made incredible improvements in a remarkably short period of time:

1. She now sweats - she is not particularly thrilled with this - but I sure am!

2. She has begun to sleep longer. I would always try to have our lights out, computer off, and her iPod music on really "low" (her low and my low are very different even with my ear plugs in) at midnight. I would pass out immediately and we would wake up at 9:40am everyday by Ajo's smiling face (the male nurse). I was getting great sleep which made me think she was sleeping just as long. She absolutely would disagree with me on how long she slept, but at least the lights were out!

3. She moves in her bed. Now this may not seem like a big deal, but with no sensory input when the room is dark and her eyes are closed she never moved in her bed. The position she fell asleep in was exactly the same when she woke up. A couple weeks into therapy I realized that she was moving in her sleep!

4. She is able to crawl forward and backwards. She scooted around the house on her butt for the past seven months (with her feet in front so her pants wouldn't be pulled off). We have a two story home and her room is upstairs in the furthest corner. Monica was not willing to move to the downstairs bedroom and not willing to have any accommodations made to her living space. In the bathroom we did take the glass shower door off and put up a curtain, but that was the only change she was agreeable to. Watching her in physio get stronger and stronger and finally be able to balance herself and crawl on the physio bed five motions forward and then five motions backwards was amazing!

5. She is stronger physically - balance, coordination, strength, stamina. Monica's upper body strength has always impressed me. She was able to effortlessly transfer her body weight anywhere. She would lift her body up, holding onto the handles in my Suburban truck, and place her body in the seat of the truck. However, I felt an urgency to get to India because my fear was that she would not be able to use her arms much longer due to the progression of her illness. Well to see Monica work so hard at absolutely everything they asked of her was so rewarding to me. She became stronger in all areas and fearless in trying to do the exercises. Her balance originally was awful. She easily tipped and if you watched her sit in a position she would slowly tip over if she had to hold it. Now her core is stronger and able to support her better!

6. MONICA CAN WALK! Yippppeeeee Skiiippppppeeee!!! The most amazing part of this whole journey has been to see the work, discipline, focus and dedication Monica has put in to be able to walk out of NuTech. As you all know she has been working tirelessly to be able to stand and then walk in calipers. She was able to go from one huge caliper - metal going all the way up the hips and then a large plastic piece that went around the waist to metal knee braces and plastic ankle braces. She planned on going home in the knee braces.

During our exit interview (the afternoon before we left), Dr. Shroff told Monica that she expected her to be able to walk without calipers on her own holding onto someone by December 15th and then by Christmas she should be walking on her own. Sitting in that interview was fun because I knew that Monica wanted to see if she could walk on her own right then without any support. Monica had never practiced on her own let alone stand without any support. However, once she decided she could do it I just knew she could. She is remarkable. Well, Dr. Shroff said she would absolutely help her and ordered a walker to be brought to her office so that Monica could try. By the time the walker arrived in her office (which was immediately) Monica was up standing all by herself. Dr. Shroff taught her how to use the walker and Monica took off. Within fifteen minutes Monica had gone from not being able to stand without support devices to walking without anyone or anything helping her! Dr. Shroff excitedly called down to physio to not let anyone leave because Monica wanted to surprise everyone. It was such a thrilling moment, as her mother, to watch her WALK across the room all by herself so proudly. Everyone was cheering and crying. A very emotional moment for Monica, myself, Dr. Shroff and everyone else who has been a part of getting her better.

There have been some side affects from the treatment: her vision is blurrier and her throat is more constricted. Time and stem cells should heal these. We all have to assume that so much more of Monica's body has been healing during this treatment. She has not regained any of her sensory yet. The doctors are hopeful that this will occur sometime in the next few months as her nerves continue to repair themselves. I can barely stand it waiting to see what she feels first. Obviously she deserves to eat, smell, feel some pleasurable sensation first and that is what I pray for.

We arrived home (without seizures or the "claws" on the airplane - that shows she is healing) using the wheelchair. Dr. Shroff ordered a walker and cane for us that day so we would have them to use to see our family at the airport. With a wheelchair, the airport always has an individual assigned to you to push the chair around. Our gentleman was wonderful. I told him our plan and he got us all ready. We got Monica up and walking down the hall using her walker where family can see you on a monitor before you walk out the gate. You could hear them cheering. Fifteen people greeted her screaming.

Monica was really slow walking out of the airport that day. Today, a week later, she is not using the walker at all, uses the cane for long distances, and usually doesn't have anything to help her but her own two legs! She is walking into stores on her own, walking around town on her own, and has even gone to the beach and walked in the sand on her own. I am so excited that she has gained the confidence again that her body will support her and allow her to go where she wants, when she wants.

We will continue to update our blog to let you know how Monica is doing. I am so excited for the future. EVERYTHING feels different now. I believe we turned a corner and only good things are going to happen from now on. There is no looking back, just forward to a better and healthier new life for my girl.