Blessings and new fights

Things are still going smoothly for me. Physical therapy/electrotherapy is going well. The only concern I have is the shape my cheek makes when I smile...it's hard to explain but it doesn't curve like the other side does (don't know why I expected it to) so I'm going to ask if there is anything we can do to shape it, and possibly an injectible or something for the top lip because it flattens out almost completely...but we'll get to that.

As my long battle is now at a still I can look around and count my many blessings. My health, my family, my friends...the generosity of spirit and prayer that have helped me through this whole experience.

I am proud but sad to have to pass on this generosity to a friend who is now beginning a fight of her own. If any and all of you could send up some prayers for Anne. She is proof that no one is too young, too healthy, or just too darn GOOD to be battling the Big C. I ask all that positive energy that I received please pass her way as we all pray and love her through this.

A little Zoe funny today

After my PT appointment today (will post a video later), I took Zoe to the park and then to Chick Fil A because she wanted chicken for lunch....and with this kid I do not fight it when she wants to eat something of substance! So we go in and she goes NUTS because they are all decorated for Christmas "Mommy, look! Cows and Christmas!" and she's bopping along singing to herself. This is how she earned the nickname "Zoe the Musical" of course. We return from washing our hands and she's still bopping along, singing. Then, out of nowhere she leans, quick like a fox, into a booth and shouts "I LOOOOOOOOOOVE CHRISTMAS!!" at this family. The man looked like he had the stuffing scared right out of him and I couldn't stop laughing. This kid is a dream come true most days, I wonder if I'll ever be able to fully express to her how much fun she is as a child.

So very very thankful

3rd post surgical visit

Today was the 3rd post surgical checkup with my doctor. We are doing VERY well! I have a turned up smile on one side (not very big, think Mona Lisa). But considering that at my last checkup, we were both bummed to have no movement showing at all. And now, just a bit over a month later we have definite success.

It should only get better from here. He said with this muscle graft, sometimes it can work a little too well and the smile can be too big...but I'm not going to worry about that. He said it can be up to 2 years before you stop seeing progression...so while this came on pretty fast, it's important to remember that the rest of it may take awhile. I can be a little patient, now that I know it's working.

I can still go in later and change the electrical/nerve feed for the muscle. That would require another graft, another hospital stay (only 2 days though) and more therapy. At this point, since the "hard part" is over, I'm not ruling it out like I once was. But I'm not actively planning or pursuing it. I can't think of a reason that I would even consider it for the next couple of years. Especially since my doctor is retiring within a year...that makes me so sad. He is AMAZING.

So you may wonder if I think it was all "worth it". The answer is, I don't know yet. I ask myself if this was all I was going to get, would I think it was worthwhile. I need some more time before I know the answer...because each day we've gotten a little more benefit. I'm not ready to say it was worth EVERYTHING...but I am not sorry I took this path. If nothing else, it brought me a little peace. I tried something. I did what was available for me to take action and what little bit of control I could in the situation. THAT was totally worth it...yes even worth that God awful liquid diet!

So I'm good, and hoping to be better at the next installment!

Love, Jen

Older video

This is one of my therapy sessions from about 2 months and 2 weeks post surgery. We are using direct current electrotherapy to stimulate and innervate the muscle and get it moving. It doesn't hurt, just in case it looks to you like it does. The ground pad (on my arm, don't know if you can see that) actually is the only part that ever hurts and that just depends on how high we have the intensity. Even in the 2 weeks since this video was taken, we have gotten much more movement. The second one, if I was able to load it, was just a smile check I did in the car.

Videos

This video is from today. We are now 3 months and 2 days away from surgery. The further I get, the more I really really wish we could do something about my eye. Sorry about the lighting coming from one side...I needed to back up to a mirror so I knew my face was in the camera range.

Halloween

Spooktacular Halloween! My little candy corn witch was adorable as always. She decided our costumes in September. When she chose to be a witch she informed me I would be her cat. Um, ok. Because there are SO many modest, appropriate cat costumes for adult women! Anyway. I was pretty proud of those tights! Made from white tights and then fabric tape with the arm warmers~

Happy "1st" Quinn!!

There are several truths when dealing with military life. One is that the celebration doesn't always happen on the day it is "dated" to happen. Case in point, my dear friend Annabelle's little boy gets to have his August birthday in October. We can pull that off! Sweaters? No problem. Snow outside? No biggie, we'll just move the moon bounce indoors. I am often baffled, humbled, and intensely amused by my friends' abilities to adapt and make it happen. And so thrilled that I get to be part of it. Another truth of the military is that your family gets bigger with all of the friends you bring into it.

And I do love getting all the kiddos together!

Still moving!

Getting happier and frustrated by turns. After the first day, I can only reproduce movement a few times per day. I'm working on just teeth, and with a mouthpiece. I don't want the muscle to get too used to any particular movement...and I'm also starting to notice some serious pain in my bridegework on the other side of my mouth. The headaches have slowed, so I think doc was right in that they are not related to the graft...just maybe the increase in muscle activity.

But the movement IS there, and it IS happening. I'm not imagining it. I still have an estim unit from when I saw another reconstructive surgeon FOREVER ago for a consult. I dont' know how well calibrated it is...but I use it a couple of days a week for 10 minutes or so. It does simulate the contraction and I know the interval between contractions so I can clench at the right time to strengthen that movement. I can be patient now, since I know it does work...and just enjoy the thought that I'll get to smile at my sweet Munchkin when this is done.

Best day EVER!!!!

My face moved today!!!! Just a twitch up at my high cheekbone, and then the corner of my lip turned up ever so slightly. I will try to get a mini-video of it to post. It's not a terribly exciting-looking movement. But to anyone out there who may be going through this...it is a totaly victory!

Bummed and frustrated

Had another doctor checkup today. We are now 2 months and 3 days out of surgery. Doc said usually at 2 months you begin to see movement. We are seeing NO movement. No pull. No direction or anything. The therapy/rehab/medical part of me knows that when nerves are involved, you have to REALLY stick with the patience and consistency.

I SUCK at patience. Consistency, I rock; but patience...

The positives, I AM feeling tensing and contraction of the muscle. However, I have no way to know if it's the right muscles tensing in the right way without seeing some kind of direction. Frustrating. We both noticed that it's easier to judge the muscles from inside my cheek (lovely) so in the future I'll have to add some in-the-mouth checking when I'm doing all the clenching work. My teeth HURT some days. I have a mouthpiece, but having it in my mouth changes the shape of my cheek so I can't tell if I'm doing anything correctly. Oy.

I worry that the muscle is retraining more for chewing than smiling because I can't see any movement to judge it. And it's not like there's a handbook for this kind of thing, telling you when something is wrong...unless it's horribly wrong and then it's obvious (like rejection of the muscle graft, which we are out of the woods for anyway).

Doc said he's not going to worry until we are 4-5 months out with no movement, so he's trying to be upbeat. I could tell he was really bummed not to see some movement yet. To be fair, there WAS that swelling incident (the 2nd surgery) that maybe that just fried the wiring a tad and it's going to take a tad longer to regenerate the nerve needed to feed the muscle.

All of you that know and love me...just be aware that I KNOW I have to be patient. I don't have to be told it multiple times. I'm just frustrated. I am not in the mood to be tested, thank you very much. Major reconstructive surgery...just work dammit.

Great trip home, great wedding!

What a great day! So wonderful to be a part of it and to have the kiddos there. Steve Reagan did the professional pictures and I can't wait to order some...especially one of the whole family! Jason flew in the night before and out the morning after, but Zoe and I were so thankful that he could be there to party. The limo to and from the wedding was enjoyed by all, but no one enjoyed it more than Zoe, Ezra, and Kalynn!

Things feel like they are working

Dreamlook Eyelid life things

If you've ever seen the commercial for these, they are little silicone like stickers that you can put up on your eyelid in the crease to lift the lid. Kind of minorly faking an eye lift. This is NOT going to give you drastic results if you are in your 30's, I guess. I only use it on one eye to try to even out the "normal" eye and the lid that has the gold weight in it.

I will try to post them in order...this is the picture without the eye lift.

This is the picture with the eye lift...it is in my right eye.

Just plugging along

Nothing really to report...at the risk of being repetitive. Still having to watch what I eat and feeling a lot of tension when I do my exercises, just a lot of jaw clenching. I can feel some tension in the muscle near my mouth. And if I'm touching it lightly I can feel a tiny pull up toward my ear. Nothing major, but enough to make me think it knows what it is supposed to do, so that's good.

I have been using Manual Lymphatic Drainage that I learned from the Upledger Institute (they teach the Chikly method) but I am only working on clearing the neck area. I haven't done any work on my face because I am trying to find a therapist trained in re-mapping lymph drainage. I didn't go far enough with that and I'd have to imagin plopping a muscle from my leg in my face might have confused things a bit. It's slow going, I tried working through the Breast Clinic (because they are the most likely to refer for lymph therapy) but they only have someone who does arms. Gotta start somewhere so I'm still searching.

When I do the therapy myself, I can feel a pulling kind of feeling, like it is removing some of the fluid that has nowhere to go. It is only seeming to affect the upper part of my face around my undereye area. I don't think it's a coincidence that that area is also the least swollen and feels the most like it's "mine". So I am going to keep after it until I can find a therapist to help. If nothing pans out, I am also waiting on an email to find out if they have any recent graduated students or any teaching assistants in this area that also do this work.

More pictures, though they are getting to be redundant.

Zoe's first fishing trip...and graft moved!

You can't see it move yet. But I felt the tiniest little pull in the right direction. I'm taking it slow, trying to force the contraction maybe 20 times a day and that's it. I want the connections to still fire, and keep the neuromuscular junctions intact. But I still don't want the muscle to bulk up in the way it seems like it wants to. I'm watching this puppy like a hawk!

We took Zoe on her first fishing trip today, she learned to fish on the same lake her Daddy did...with how life changes and how spread apart families get and how much everyone moves...it's nice to have some constants. Didn't catch anything but a turtle. To hear Zoe tell it, Daddy caught a turtle, Mommy caught worms (the bait we used), and Zoe caught a shark! Totally untrue, my 3 year old is already a master at the fisherwoman's tales of mighty conquest!

She had to potty while we were out and looked at me like I'd lost my mind when I said we'd potty outside today. She opted to wait. And wait she did, until she couldn't. Then we finally made it all work and she was so proud of herself. She ran back to Jas yelling "Daddy, I pee in the woods!!!" So proud. Ahhh, moments of pure parenting pleasure. My little princess fisherwoman can answer nature's call IN nature. A true moment.

2nd post surgical appointment

Otherwise known as PRAISE THE LORD, I CAN EAT!!! I know you will be thrilled to hear me stop complaining about that.

It was one of the first things he said, and I told him that I've pushed my limits eating a bit already and I can tell you for sure, the embargo on some of my favorite foods will still be on. Nothing that makes me tear to eat...like panini sandwiches or pizza. No raw veggies like carrot or celery sticks (let's be honest, do I eat those anyway?) But I'm going to start with braised "fall off the bone" type meat and fish. No shrimp, already tried it...too chewy and irritates my jaw. I will be carrying Tylenol around with me, but it is so worth it.

Jas took me to Chipotle for a victory lunch (only because Outback isn't open for lunch!) and I had my fave Barbacoa crunchy tacos. More like a crunchy salad and it took forever to eat b/c I can still only eat really tiny bites at a time. But my whole body is doing the happy dance!!! I'm hitting up my favorite cupcake place in a few min ;) I had lost 16 pounds since my surgery day, and I have a feeling I won't be losing any more just yet!

Dr. L said I can also start moving it now. When I bite down, if you are touching my cheek you can feel the muscle stiffen a bit. There's just no movement. And the itching, dear Lord, the itching. He said it's a good thing, it means the nerves are waking up and it's a good sign that it's happening at the attachments. He said now is the time when we sit, wait, and hope. The surgery went perfectly...with the second surgery snafu out of the way, the healing went textbook well. Now we wait and see what my body decides to do. I feel good about it. I can feel a firmness in the two attachment areas when I bite down. But it's nothing you can see on the outside. I am already glad I did this. If nothing else, it gave me back control. I have done what I could to try and restore my smile, and I feel at peace with that. Can't say that if it doesnt' work at all that I won't be disappointed, because I will. But I did what I could, and I can handle that.

Still no going back to yoga class yet. Absolutely no inversions and nothing that really causes my face to feel strain (like when you are pushing forward to lunge or just really can feel yourself holding tension in your head when working out). I've found some adaptations to keep me as flexible as possible, but the trick is not irritating the leg. Balancing again is also completely different. Most of you know my balance is God awful anyway, but there's a new dimension of awful-ness to it now with that muscle to compensate for. No biggie. It will come.

Love to all, off to eat everything in sight.

Still mostly the food thing that's getting to me.

I realize the food thing is getting redundant, sorry about that. But most days it really is all I can think about.

The swelling in the mouth is gone, just the scars from it hitting the biting surface of all the teeth to heal and then done with that. I don't have to puff out my cheeks to keep from biting the crud out of myself anymore, that IS progress.

In the morning, I have very little swelling at all. As the day progresses, depending on how I eat, I get a really large shelf of muscle tissue at my ear and at my mouth where the attachment is. That gets a little sore, but not enough to bother with anything stronger than Tylenol. And still LOVING the Valium for actually getting sleep.

Haven't tried anymore movement of the muscle. I have learned there is a LOT more you do with your teeth than you think. Think of all the darn packages you can't open! Think of all the random things that you hold in your mouth while you do something else. Geez.

The leg is healing well, I've started scar massage with it. I am noticing that I get weary really quickly, seemingly out of nowhere. It's usually once I've been walking about an hour, like at the aquarium and marsh the other day. But it's still not painful, just achy. I can get into my yoga squat, but I can only hold it for about 3 minutes. And I know part of my lack of endurance is partly due to the fact that I don't eat much. I am starting to hate milkshakes and smoothies. Lately I am surviving on baked potatoes, but pissed that I can't eat the skins very well. And, sorry if anyone loves is, but Wendy's chili SUCKS.

Doc appointment tomorrow. I already know I'm not going to be released to eat normally or exercise normally...so I'm not really sure what we're going to do, but we'll see.

Going well, just slow

Here we are, about 3 weeks from my original surgery. I'm impatient, I don't like stalling, and I feel like the swelling just isn't going down any further. The draining from behind my ear was making me crazy. Yesterday was the first day I had no dripping, even when eating. But of course, on the tail of "thank God that stopped!" was "Hmmm, it feels like it may be healing over, but what if it's getting infected?". I can't see it, and Jason can't really feel what I feel and I can't really describe where I'm feeling the hard part.

But since I can feel it, I can't seem to not mess with it. And I'mhaving to physically restrain myself from messing with it b/c I don't want to impede the process if it is healing.

I've been a little too ambitous with eating the past couple of days. I made shrimp and grits, which sounds benign enough. I even cut the crap out of the shrimp so the pieces were small. But my jaw got swollen that night. Then, we made "pizza spaghetti" with lots of cheese and sausage as small as possible, and overcooking the pasta. Still got a little too swollen. It's funny to me how everyone keeps saying "throw ____ in the blender!". I challenge you, try that sometime and you won't ever say that to someone on a liquid diet again. NASTY.

I am sleeping SO well since taking the Valium. Getting up is a challenge because I want to sleep more. An active 3 year old makes a GREAT alarm clock!

Buffy left to go home today, we miss him. Sure is quiet around here. My first day completely alone wth Zoe since surgery. Liking real life coming back!

Doctor visit today...THE LOOP

Sorry these are so far away...obviously I didn't take them. You can tell that the swelling, for most people, is "gone" and from this distance I look pretty normal. You can see in this sideways one, compared to the one the day I got home...that incision along my neck is healing FAST!

Ok, first post surgical check up with my surgeon, Dr. Lim.

All is well, healing very nicely. Better than expected. Incisions have almost all closed up. Starting to get some tension with gritting teeth, it's more of a fullness I can feel than a motion or twitch that can be seen. Swelling is down all over, still in the mouth and driving me crazy but that particular part will come when the muscle is moving and shapes up how it should. The area around my jaw is still swelling and is expected to subside over the next couple of weeks.

He gave me meds for sleeping, thank you GOD!

The spot behind my ear that has been weeping, dripping clear fluid. I have been concerned it was a salivary gland issue. At first, he believed it was just wound healing. When I mentioned how I've been watching it and that it occurs more when I eat, he agrees it probably IS a salivary gland issue (they took out part of my parotid gland for the graft space). It is unlikely that it is gustatory sweating...if it is it can be fixed with botox. He thinks it is more likely a salivary fistula and when everything else heals over, a quick outpatient surgery can fix that. So, while it is SUPREMELY annoying, I am totally ok with it as long as we have a plan for stopping it at some point.

I can drive, I can travel (Jason can unclench ;) LOL). Sadly, I am still on my soft diet only. I could cry, I really could. And I was informed that pizza is NOT, in fact, a soft chew food. Bummer. I am not clear to return to yoga yet, which isn't surprising. I can walk and exercise very very lightly for a few more weeks but nothing more strenuous. I CAN HAVE A MASSAGE!!!!

All in all, we are looking really good. It is encouraging to see him so happy with the progress, I see him again next week. He went over exactly where the muscle is placed, so I know where to be careful. He did confirm that the muscle is attached in 3 separate locations around my mouth to give a more natural line of pull. The synkinesis of my cheek (the part that jumped/twitched when I raised my eyebrow) has stopped, which was expected. But he believes that just the fact that that particular muscle never lost it's nerve feed completely may give me a more full appearance which would be GREAT.

Waiting out Irene

All ok on our front so far. The storms blew in last night and are still going. There is damage up to 10 miles away from us already from the tornadoes this thing is spinning off. We are prepared to ride it out, and also ready to hit the closest interstate if we have to leave and can do so.

I'm excited for my appointment with my surgeon on Monday. We will be checking the graft and discussing movement therapies for me now, I think. Just ready to get this show on the road other than just sitting and waiting. I am not a waiting type.

Really thankful for all the thoughts, cards, and flowers I have gotten. It's so nice to be loved and thought of.

Can't stop itching, can't start sleeping

I guess it's a good thing that my biggest complaints are that my face itches and I can't sleep. I mean, I'm no longer using any pain meds but I canNOT sleep to save my life. It was 2am when I finally called the nurseline at the hospital just dying to know what I could take. They suggested I take my Dilaudid. I kept repeating to them and to Jason that I do NOT want to take narcotics if I'm not in pain. Using meds for off uses is what gets you introuble. Not going there. I finally got a callback from the doc and found out I could take the Melatonin I had. Didn't help much, I only got about 3 hours of sleep. I'm trying not to nap today so I will be exhausted tonight.

I'm just too uncomfortable to sleep. My right shoulder and hip are just too uncomfortable to think about anything else. And I'm serious. I would gladly have dislocated my own shoulder or taken ALL ofmy surgical pain at once to have that annoying feeling stop. Nothing helps. Nothing stops it. And I did try absolutely EVERYTHING.

The itching is minor, but it is on the tissue UNDER the graft. The tissue I can't scratch or get to for any reason at all. It is supremely annoying, but forgettable after a bit. It still feels like they implanted something foreign in my face, something not even flesh, it just feels not mine. And I'm curious how long that will last. I guess hopefully once all the swelling goes down. We will have to see.

I am so terribly thankful that I ate whatever I wanted before surgery. I am dying for real food. I am now at a point where everything I want I can't have, and the things I can have make me sick to my stomach to even think about eating them. Like, Jason has offered to bring my favorite shake ever home from errands today...and I'm only minorly excited about it. Not even really excited, just accepting that I might be able to convince myself to keep that down. It is so depressing. Ridiculously so.

After al stitches and drains are gone!

It felt so amazing to have that final drain pulled and all my sutures removed yesterday! I can finally get dressed like a normal person, without needing another set of hands to handle the drain while I put on shirts. I managed to shower once while it was still in. But it was quite a production.

Today, apparently, we had an earthquake. The first in this area since the 1800's. And we didn't feel a thing. Took my first outing to Panera Bread so I could eat soup among other soup eaters and not feel cheated (even though I was lusting after Jason's greek salad). And Zoe got to eat all my bread. I have no pain or nausea meds on board today and I think I'll be fine without them. After eating, it was definitely time for a nap but I only slept an hour and a half, so it wasn't a marathon healing-exhaustion nap.

The swelling is coming down a lot. I can feel all the structure around my eye socket, close to my nose, and most of my mouth has been released from swelling. Except for the muscle attachments my lips feel almost normal. No more feeling like they've been sanded down with paper. Most of the swelling is at my jawline and under my neck now. My chin is really sore to the touch for some reason and I am so glad to find out that that tough "ridge" we felt in my face was actually the drain tube and is now gone. Got the doc to tell Jason to relax and LET ME SLEEP if I want to for heaven's sake. He has been so good about managing my meds, though, so I must thank him.

I feel almost normal today, oddly enough.

My discharge and first day home. After the fact

I only knew the night before that I'd be leaving the next day. I was scared to be going home to tell the truth. I didn't get to post too many times in the hospital. Part of that was spending 4 days in ICU, and the other part of that was getting sent back for emergency surgery 2 days after I left ICU. I always felt like my body was playing catch up.

Too much swelling and a TON of pain when some sutures were loosened/removed, and one of my surgeons called 'enough is enough' and sent us back to the OR. I was notified 30 minutes prior to being taken into pre-op, just enough time to get Jason settled on the home front and then coming in. He got there just in time. They found two areas of thick swelling that could have turned into a clot, but one other surgeon feels would have eventually resolved on its own. It is unclear whether it would have killed the baby graft before it resolved so I'm glad we went back in. Thank you, Dr. T!

As usual, I had a REALLY tough day about 3 days after the second surgery. There will always be one day in the hospital where I trust/like pretty much no one and I am and pain in the butt as a patient. I had great nursing staff, and Dr. H ushered all the other docs out and then pretty much let me have a nice little lecture on how things were and why they were that way. After a good night's sleep and my favorite nurses on staff that night, I was feeling MUCH better and more cooperative the next day. So...tough day down, no lives lost.

Discharge went smoothly, they removed all but one drain, I packed and we got out. It was SO good to leave that hospital room. I went home and hung out with my parents and Jason a bit. Then went to bed. Sleeping would be challenging. A belly sleeper back in my own bed...we had to rearrange a lot of pillows. My mom took a few pictures my first morning home, then home health came by to help me figure out drain care and I basically settled into food depression. At this point, I have lost 10 pounds from my pre-op date, not all that surprising. I'm on liquid only, and there is a limit to how much tomato soup, chicken broth, vanilla ice cream, and pudding one person can eat before getting sick at the thought of any of it. I LOVE food. Even when I diet, I change what I eat I don't limit the hell out of it. This liquid crap is killing me. I find myself wanting salads, chips and guac, pretty much anything that crunches. And oooh I'd kill for pizza. A little note if you are ever on a liquid diet...blending real food will NOT get you what you want. You will very quickly discover that mutilating your food to babyfood consistency makes it taste "grey" and nasty. You will find it's the mouth feel and different tastes as you bite down on different things that makes the meal.

My parents left the Sunday after I got home, and I miss them already. I missed my Munchkin Zoe so much it was maddening. I couldn't even think of her in the hospital without getting so sad. We were worried she'd hurt me when I got home, but she handled it all very well. She asked questions about my "boo-boos", my drain, and the balloon in my face. Other than that, she was fine with it all. Not freaked out and very careful. What a sweetie.

You can see that the drain is still in, that will come out Monday. In the first pic, you can see that the swelling isn't quite so obvious, but that it's pulling all the skin around my eye and my mouth over. And in the second you see what's left of the incisions and the acutal drain. The greyish area on the middle of my face (where it's shiny) isn't bruising, it's skin that is dying from being stretched out so much. That is the last patch left. So while it's pretty annoyingly uncomfortable, it's not as bad as I thought it would be

First post-surgery post

Big thanks for all the thoughts and prayers sent up for me. I really appreciate them and I was so thankful when I woke up! I knew, whatever the results were, that I could get through that result knowing that I'd done what I could to make my life better. Now that it's over, I can admit that I was REALLY scared that something would happen and make me not be there for Zoe, and I literally felt like they gave mt that "loopy" shot in preop and I swear the next thing I knew they were waking me up.

My body is waking up slowly. First few days were all about nausea and pain; I think the staff was tired of hearing me ask "when is my next morphine? When is my next Zofran?" They had me doubled on Morphine and Dilaudid and also had me doubled on Zofran and Phenergan. None of those meds would work alone. Sadly, we figured out in a couple of days that the Phenergan was actually making me sick. And all of the meds were making me itch (it was like this last time I came out of a ton of anesthesia, too). I was in ICU for 3 days and today got moved to a regular room.

I was pleasantly surprised at how not painful it was to walk to the restroom and back. I wasn't sure what to expect, since the took a portion of muscle out of my leg. But it was really more joint stiffness and having been so uncomfortable in that god awful bed. I know those air beds must help you not have bedsores, but for someone who LOVES a firm bed it was killing me laying on that cloud.

The swelling in my face has been surprising to me, but the docs say it looks great (when I get them from Kake, I'll post the pics). The painful part has been my lips swelling (people pay for this???) and the swelling running out of room that spread into my mouth. My cheek inside has gotten so swollen that I have ulcers all along the line of my teeth from front to back...and under the canines and on the bottom, I have VERY deep ulcers where the swelling has surrounded my teeth and into the biting surface. There really isn't anything I can do to stop it, because I've tried blocking it with gauze but I can't risk altering the blood flow to the baby graft. They have a doppler attached that they are checking every day to make sure they stay on top of both the artery and the vein.

Ok...editing later. The place on my chin was a mole I threw in for them to remove. You can see the swelling was all under my neck and pulled my mouth out-of-line for awhile. In some of the pictures, you can tell how shiny and stretched my skin is from being pulled so tight. The stitches under my ear hurt the most and were pulled the tightest. All of the wires heading down to my arms were my monitors. There is one drain you can see that snakes up behind my ear, and the blue wire on the (my) left side is the implanted doppler wire that they used to listen to the vein, and they used an external doppler a few times a day to listen to the artery. Sounded like listening to a baby, and it felt just as reassuring to know all was well. There is a blue stich randomly in the middle of my cheek you can barely see in some pictures. That is the target for placing the external doppler.

The Journey begins!!!

Hello all,

This has been a long time coming. Ten years, can you BELIEVE that???

I have a surgical date of August 10 for the facial reanimation procedure...which will hereafter be known as having my face rearragned ;) My parents and Kake will be coming up and Jason will be allowed some time off as well so I'll have plenty of help.

Just so everyone knows what's going on, a little rundown for you. They will be taking a piece (or possibly all, I'm a bit fuzzy on that) of my gracillus muscle. It is located in the inner thigh and performs adduction/squeezing. They use this muscle 1) because there are other muscles that can strongly perform this function, so I don't lose anything, and 2) because it can be split and attached in slightly different locations to give a more natural line of pull in the face. They will also harvest a piece of fascia (possibly from the same incision, it depends on several factors) to help shape the muscle to its new function.

They will cut into the left (paralyzed) side of my face sort of behind my ear and along my jawline-ish into my neck to implant the muscle along the cheek and shape it with the fascia.

I will be in the hospital for 5-7 days and then need help for a week or so after that (all covered!). Doc tells me it will be mostly the leg healing that causes most of the downtime. I have preop on the 2nd and will get more info on the post surgery stuff then. I have been told I will have therapy to work on training the muscle to perform its new function, but I have no idea what that will entail. And I don't know what, if any, therapy I will have for the leg.

Once we get the therapy finished and the scars healed (there will be 2 or 3, pretty big), then I will have to clench my jaw/grit my teeth to smile. I weighed this surgery vs the full on muscle and nerve graft and I think this will give me the most important thing that I want...to once again not HATE pictures of me. I have slowly removed myself from my family's history by not wanting pictures taken. I can't do that to Zoe, Jason, or myself any longer it's just not right. But first and foremost, I am doing this for myself. While most of those who know and love me think of my tumor and surgery stuff maybe once or twice a year....less for those I don't have constant contact with...this trauma has never been over for me. It has hit me every single day and that is a weight too heavy to carry anymore without taking some action...action that my doc assures me is sane, safe, and likely to give me the function I crave. Were I to do the full on nerve and muscle graft, I'd have to committ 2 years or longer to nothing but the surgeries and recoveries, and I'm just not prepared to do that at this point in my life. I'm still busy living it.

Good news, if this works as well as I hope it does, we do have the option of going back in later and doing the nerve graft to change the electrical feed to the muscle. I am not locked into doing it, but I do have the option. Doing this later on would mean that I would no longer have to grit my teeth to smile...my new grafted muscle would hopefully just respond to the nerve on the other side of my face that is currently functioning normally.

Love to all, and thank you for taking this journey with me. I will try to update as often as possible and use pictures when I can...they could be kind of graphic so this is your warning! I want this not only to be an outlet for me, but also hopefully helpful to others who either are or will be facing what I have gone through with the paralysis.

Introducing Charles David Bruyninckx

Welcome to the world! Can't wait to meet you Chickadee...love your sweet smile already! Born April 21. Congratulations Katherine, Russell, and Grant!

Hiking at a local trail with Mommy and Daddy. I think I'd like to do this more often, I saw butterflies, a deer, and a turtle. Pretty waterways along the trail with lots of cypress trees.

My first day of Preschool!!!! How cute am I with my pigtails and my backpack???

First installment

Last trip home to GA

Settling down

Ok, now it's back to work as usual for Jason so back to keeping up with this for me and everyone out there keeping up with us. Zoe is all over the place...I can't believe she's almosts 3 years old.

We're gearing up for another trip home soon, for a visit, some yoga instruction, and Grant's birthday. Can't wait to see everybody...even though Yiayia, Buffy, and the B family were up here just a couple of weeks ago. We are expecting Chickadee in the next couple months too I can't believe it's almost here!

I did get offered the job that I interviewed for with the clinic. I was very glad to have the offer, but they were kind of mis-advertising for what they really wanted. If they only wanted a massage therapist, the salary they offered would have been ok (but just ok). But they really want a clinic assistant for free and that is not this girl. So I countered their offer and never heard back. Nice, love the professional courtesy there. Oh well, just lets me know I made the right decision. Still looking. I'm going to send my resume out to 2 spas hoping to catch a seasonal gig for the summer...the bigger spas in Williamsburg. It's a hike, but truthfully it's like 10 miles farther than I commuted when living in Atlanta and much closer than my commute in RI!

New year, new life plans

Things moving along swimmingly around here. Jason will be headed back to work soon...but not before Yiayia, Buffy, Katherine, Russell, and Grant are coming for a visit this weekend. I can't wait to see them again. Even though we saw them recently at homecoming I'll take any chance for a visit!!

I am interviewing for a job next week! Out of nowhere, I was searching around on the internet playing with my new wireless laptop that Jason got me for Christmas. And wham...a job like I have been hoping to find just lands right there, and it had been posted just that day. I had been watching for a clinical massage job since we moved back. I miss massage. I miss the creativity of it. I miss helping people. And Zoe's bored with me. I think she's learned and gotten all she can from me at this point. She needs other stimulation and I think it has been way past time for her to go to preschool anyway. So in the process of preparing to interview and hopefully start working, I'm picking through preschools and going to be getting her ready. So much to do.

Other than that, not much else. We will be dealing with more out time than expected this year for Jas but nothing we can do about it so just go with the flow.

What a week (or so)

I can't believe it was just a week ago we were unwrapping presents! Things are crazy even when they aren't. I'm getting the house in order after Christmas, and putting up all my new things I've bought for the house in the last few weeks.

What I've randomly learned in the last few weeks. You just never know where these little gems will come from.

Carousels run counter clockwise. Merry-go-rounds go clockwise.
A black horse on a carousel is an ancient Roman sign of good luck.
There are ALWAYS more birds with more singing voices in your neighborhood than you can possibly imagine. And they are ALL "morning people".
Dogs will have accidents on the carpet faster if you have the carpets cleaned. It's unfair but it's a fact.
If you have somewhere you really want to go...all awesome travel deals available at that time will NOT help you get there at all.
You cannot underestimate the cuteness and utter truths that come pouring forth from the mouths of toddlers.
I NEED a creative outlet in my life, and I need to rethink my idea of creativity. It seems I attribute creativity to things I cannot do and don't see the creativity in things I do do.