For those of you just tuning in: I have to tell you that Dr. Kelley is world known doctor, scientist, specialist, geneticist. He calls the shots in the medical department of my life. He found my chart in CHOP when I was eight months old. My parents and doctors were at the end of their ropes when my mother got a call from a doctor asking if he could try to help. No one asked if they could help then. Doctors were scared of my tiny little self (and I think some still are.) My mom welcomed his help with open arms. It took a while, but he got me stable. He got me home to be with my family. Kelley assured my mom that I could go into public schools and be successful. For those of you who know me, you know that I love school. I can remember hearing that phone call at the fresh age of four & seeing the excitement in my mom's eye when she told me I could go to school. I spent years, miles, and monies as a professional student. There was nothing that I loved more than going to school while I was there.
When I found I was pregnant, I contacted him to make sure it was safe to carry this child. It was him, and only him, that I trusted when he said that Lennon and I would be perfectly fine. I often have to shake the "what ifs" from my head because I was so scared that I was even too scared to contact Kelley. It took him about 45 minutes to return my email. At the 46th minute, I was enlightened to the fact that I was going to be a mom. The single most rewarding and exhausting title that I have ever taken on - no degree required either! And I can assure you, there is no greater love that I have than the one for this little boy of mine.
When I wanted to get a tattoo, and my mother tried to tell me that my disease didn't allow it, I called his office. His secretary said that he was in Australia and he would get back to me when he could. Within twenty minutes I had a call confirming I was just fine to get tattooed. It only took me five years to get one.
So to conclude the introduction, Kelley is a mover and a shaker. What he says goes. When I am sick, well, on death's bed, perhaps, he calls he shots to get me well or to stay well. He has not failed me since he found me & he hasn't given up, even if he ended up more discouraged than I have been at times, I'm sure.
Gosh. Am I a chin wagger or what? I blabber when I'm nervous. Or when I see someone older than 42 months old :-)
Friday. (The Friday that I am referring to is Friday, March 10, who knows when I'll actually get this post live.) My mom, husband, son, and I all hopped in the car and drove down to Philadelphia (in a snowstorm!) to do a few things. One of those things were to see Dr. Kelley. I haven't seen him since before Lennon was born. We had to talk about January. About a new action plan in case something like that happens again. About Lennon & what happened since Lennon. About my response to the supplements I'm taking.
It was a lot to take in.
Firstly, he was ever so impressed with my improvements since that last time that he saw me. My muscle strength is much better than it was when I was pregnant (and I feel like I was my strongest overall when I was pregnant.) I actually have reflexes in my knees and ankles, which he's always had a hard time getting any sort of reaction. Dr. Kelley is also impressed with how I am standing. But most of all, he's impressed to my response to the citrulline.
Citrulline is an amino-acid. It's name comes from the Latin word Citrullus, which means "watermelon." It helps to reduce body fatigue & does a bunch of other stuff that I simply can't remember or don't know to begin with. Citrulline is something that I lack most days, and when I am sick to a point of causing fasting (remember - I can't fast,) it is incredibly low. In the middle of January, Dr. Kelley suggested that we try this. It is relatively new as far as treatments (2-3 years.) It was put in my feeding tube three times a day. At first I didn't let the Citrulline get any credit for my improvement. It was all me, of course. But then I walked about 50-75 feet, unassisted and without falling. There is no way that was all me, because I have been looking for "that me" since September of 2013. Before you think I'm a nutjob, you should know that Dr. Kelley (and presumably a team of doctors,) have cured heart failure with Citrulline. Sure, it's a lifelong supplement for me and the other guy, but the other guy has a working heart, and I have muscle tone.
Because of this Citrulline my muscles are getting sort of defined (?) again. Sometimes they ache as if I have been working out and sometimes I can feel the difference just when I'm sitting doing nothing. When Kelley examined me, he couldn't get over how big my muscles are, and neither can I. It's kind of a pain in the ass to take the citrulline Bc I have to mix it with other food. Sometimes I throw it in a shake and chug it (yuck!) but it really is totally worth it. I believe in Citrulline, and so does most of my family. I have some independence back and that's lovely.
So then there is this genetic test. This is something that Kelley has wanted to do for a while, but I guess I never got around to it. On Thursday, 3/30, my parents and I are headed for some blood work. We are going to do a test called GeneDX. Kelley is hoping to see if/where the mutated gene is on my mom and dad, and where it ended up on me, if that is indeed what the case is. I am nervous and scared with this one. Only scared because of the needle. But nervous because it's pretty much one of the last chances left to find some sort of diagnosis. Medical science has come so far recently that I must believe we will get the answers we have been looking for for thirty years, and if we have answers, maybe there's a treatment - or a cure. It's just too out of this world for me to comprehend. I'd take treatments though. It's a start. Perhaps we'd know what to do to get me better faster, longer, and make sickness less of a risk. I don't know. I'm crazy anxious about this one.
(Fifteen days later.)
The blood work is in approximately twelve hours now. It's crazy. I'm trying to be cool like Danny Zuko, but I'm really hopelessly worried like Sandra Dee, or worse, the beauty school drop out, Frenchie, hallucinating in an almost Peach Pitt. Just can't make up my mind on who would be serenading me. Why am I nervous? Well, as stated, the needle itself is scaring the bejesus out of me. But then there's the impending results. We ARE opening a Pandora's Box. Just can't be sure if it's a box 'o shit or a trunk of treasure. There seems to be some bliss in ignorance. & like honestly, I can't put my mom or my husband through anymore crap this year. I just kind of want to stay still. Silly.
But wait.
There's more.
I hope you're sitting down.
When I was eight(ish,) Kelley had hoped and had me evaluated for some pretty major surgery. He was hoping for a surgery that would basically straighten my hips and legs out. He believed it would benefit me greatly. The orthopedic surgeon (at Hopkins, I think) concluded upon evaluation that I was not strong enough to handle the surgery & that I'd also run the risk of being paralyzed. That was something he, nor Kelley & my mom, were comfortable with taking.
Things were left at that. Years of physical therapy. Of adapting. Of overcoming. Of setbacks. Of living. Of triumph, if I do say so myself.
So then on that snowy Friday afternoon a few weeks ago I said, "remember that surgery that we talked about all of those years ago? Do you think something like that is an option now?" It was almost a whisper because I couldn't believe I was actually suggesting I'd get knocked out again.
He said no, that's not an option anymore, because it isn't the least invasive or effective way to do it. But, he did say there might be a way.
Botox. Casting. Repeat.
So the deal is that they would paralyze (botox) my legs (one at a time,) and cast it so that the tendons in my knee would be forced to straighten. I'd be in casts for an average of six weeks per leg. He theorizes just one treatment per leg will be enough. Then, or possibly during, I would have surgery to slice the tendons in my hips. The surgeon would do a Z-shaped slice into each side and, hopefully, that would relieve some tightness in my hips. Between that and the casting/Botox treatments, Kelley thinks I'd stand up straight.
And kick the wheelchair to the curb.
I'll let you read that sentence again.
It was actually this:
"I think she's trying to ask if would walk like me and you." My mom said for me.
"I don't see why not." He said.
Could you imagine? Me? Standing up all the time and walking alongside of you? No longer staring up your nostrils when we are talking. No longer in the general fart vicinity. Me. Just like you.
How? Well, Dr. Kelley believes that my muscle strength - when it comes to walking and standing - is severely debilitated because of my inability to stand erect. It makes sense, sort of. I use so much strength trying to pull my body along that I tire out fast. So perhaps it would work.
I don't believe this shit for one minute. I have no reason to doubt Dr. Kelley. He really has rarely been wrong with me. But there is a first time for everything. This is just too out of this world for me to wrap my head around. Will I try it? Yeah, of course. I'll do whatever I can to help Lennon have a normal mom. But, like, wow.
Imagine the heartbreak if it doesn't work. Not for me, because although my opening line is about optimism, I am also a realist. But the heartbreak of my mama & family. My friends. Maybe my husband. He is a fool and really loves me any which way, so I don't know if his hopes are up. That would be a crazy disappointment, if it didn't work.
But then, just maybe, it might. What do I do then? My entire life has been this way. I have never let it define me, but it has helped me become who I am. The adventurer, the never settle, the carpe diem, the-funny-but feisty-and-a-bit-of-an-ass that I am today. For the better part of twenty years I've fought being "the-girl-in-the-wheelchair" and now I'm like woah, relax, that's my role. Just yesterday, I picked up my new wheelchair and criticized every part of it. I ultimately said to the gentleman, "sorry, it just doesn't get easier to accept that a wheelchair is a part of my life. Let alone be excited about it." (And also, I picked pink. It's a bright cherry red, at best.) But the wheelchair game is all know. It's like I'd have to make a new identity. A completely new character for Miss Autumn Rose. I've worked quite hard on this character for so long.
But honestly, don't get me wrong, I'm going to do it. The very first thing I thought of when Kelley said that I'd walk is that Dann and I would renew our vows- we'd have another wedding. And my lord, would I dance. With my husband. With my son. I'd dance down that aisle. I'd dance to my car. I'd twist and shout. I'd Macarena. I'd electric slide my way into your hearts all over. I'd dance more than Ellen ever has, because all I've ever wanted to do is dance. And the whole world could watch because eventually they'd stop staring because I'd finally BLEND in. Do you even know how long I've been waiting to blend in? To not be noticed or stared at? It's just such a wonderful thing to imagine. To not have anxiety when I think about being with Lennon at school things - I can tell you that I am crazy nervous over kids making fun of him because of his mom. To take Lennon for walks. To just be like you.
So. I don't know. It sounds like some interesting times are ahead. If you are the praying kind, just send some my way. Let God's Will do what it will. Let the good vibes come my way. Let whatever is meant to happen, happen.
And, I suppose, get ready for an adventure.
xoxo, A
