A Fork in My Road - The Elk's

Well, after ten months of trips back and forth to Boise, that road is closed for now.

I am SO thankful for my time at the Elks. The seven weeks I had as an impatient started me full speed down the path to my finding my independence. When I went to the Eljs, about the only thing I could do was feed myself and brush my teeth and hair. After leaving I slowly continued progressing. First to be able to do my own transfers, then cathing, the dressing, some basic cooking, transfers got quicker, pushing my wheelchair got easier, soon after I got into a room I was able to get my own supplies as well as clean up after myself, get my own clothes, foldinv laundry, and even change my kids diapers. They have help me opened up a whole world of possibilities for myself. So now I'm onto an even bigger endeavor to find my independence. Driving. Now my thoughts are filled with ramps, hand controls, driving tests, seatbelts. It's going to be scary and amazing and change my life as well as my families. The world will be opened up to me again. Mostly I think of all the things I can do with the boys. Go to the park, get some ice cream, go to church, go to the store, the movies. It will all be so much easier and I look forward to it every day.

I was blessed not only by going to the Elk's, but by the talented people who work there as well. The nurses and CNAs made my days bearable and always took great care of me. Dr. Cox was motivating and always had such high expectations for me. My OT's were experienced and knowledgable. They helped me get equipment I needed to be independent as well as helped me trouble shoot many things such as dressing, shoes, transferring in a bathroom, splints, leg straps, and much more. My Rec Therapists helped spark my live for the outdoors again. It was nice to feel proud after a silly art project or how far I could bike. Pool therapy was were I spent most of my time and there is such a freedom I remembered in the pool, where gravity isn't my enemy ( only drowning :) ). It was exhausting but beneficial and I look forward to learning to love many other things again, in a new way. My PT's were tough and encouraging. I was always reminded of the hard work I did when my muscles ached from head to toe. My PT classes were filled with transfers, depression lifts, quadruped, scooting, and PNF exercises. I have such a sense of accomplishment with my PT. Transfers are quicker, daily skills are easier, overall I feel stronger and I thank them for always pushing me to do more. Not only did they help me physically do things, but their attitudes and encouragement are burned into my memory. Even the therapist I rarely worked with could brighten my day and seem proud and concerned for me and my life. Then the wonderful techs, who are probably often overlooked. They always got stuck with the brunt work. Blocking my ever week elbow so I didn't collapse on my face, or helping me dress after pool, their jobs were often very up close and personal but everyday I looked forward to seeing them.

Before I get more teary eyed, here it goes. Thank you to my nursing/CNA staff, Shawna, Louise, Rachel, Mary, Eric, Sheila, Kat, Elton, Big Matt, Kristin, Bri, Byron, Jamie, and SO many more I know I'm forgetting! To my OT's, George and Cassandra. To my Rec Therapists, Kourtney and especially Christine who spent many hours up close and personal in the pool with me, days with questionable lunch choice ;), and you so willingly took the good with the bad. Now to the PT's Amber, Kathryn, Ryan, Kyle, David, Jackie, but especially Joe and Kristi. Joe pushed me harder than I ever thought I could go and Kristi has become more than a great PT to me but a great friend. And last but not least, to the techs, Manuela, Sarah, Sam, Kyle, and Allison. You always made my day. So hopefully I didn't forget anyone, but I hope you all know how grateful I am to you and you knowledge and talents. My life is better because of you. Until next time Elk's.

Screaming Shoulders

One more week of therapy is behind me and my arms and shoulders are reminding me of it all day long. Overall I felt like it was a successful week though. There were lots of depression lifts, hands and knees, and a tall kneeling. I've done tall kneeling before, but it seemed easier this week then I remember in the past. It's nice to see that my strength is coming. It's hard when I don't feel like there hasn't been something large accomplished though. I am happy to feel like I am always getting stronger. One more weeks, the back home again to work on my own.

2012

2012 I am hoping for lots of progress!

December was spent in Boise with my brother's family. Staying with them I was able to do a month of therapy. It probably sounds strange, but I look forward to therapy. It's my version of going to the gym, with my personal trainers. It usually is pretty rough. It often takes me about ten minutes to get down to the lobby, one floor away. I know it's a good session when it takes a good amount of energy to eat at dinner time. Physical therapy consisted of lots and lots of depression lifts, quadruped (hands and knees) which is a crazy total body workout,lots of arm and shoulder exercises, and working on balance to help strengthen my core. I feel like I might finally be getting a small response in my right triceps. While lying on my stomach I can push myself up into a little mermaid type position. (You like my description?) I'm hoping if I can keep doing my "mock" push-ups that maybe I won't need someone a one of my lovely personal assistants to lock out my right elbow to stay off my face in quadruped. (Don't lie, you chuckled at that visual!) My goals to reach before my PT's are stuck with me again. I want to be able to get off my right elbow while sitting on the edge of the bed. To do my "mock" push-ups easily, to get my butt just a little higher off the ground while doing depression lifts, and to be able to scoot right to left better. There is lots to work on.

OT had some good progress too. I am able to put my own sneakers on and I seriously am sooooooo close to be able to dress myself completely on my own. I need to master moving side to side and then I know I can do it. That's my big OT goal before I go back. That would not only be a giant check off my "30 by 30" list, but it would make me so much more independent! Then my next task would be figuring out how to put on jeans myself.

Rec therapy was great. I did pool therapy for every session. It was tiring but I felt like there was decent progress. We worked on walking every time, swimming, and stretching. I started the month being able to walk about two widths of the pool with ankle weights and two more without the weights. Later in the month I did six widths with weights and four more without. There is lots more strength and control in my legs. I feel more strength in my legs. I hope it's there and not just wishful thinking. I do notice that my legs are toning up, pants are fitting looser, my bulge from baby Talon is finally getting smaller.

2012 has hard work ahead! Happy New Year!

Learning to Live Life Again

Most of you know that I have remained pretty positive through this whole ordeal. While I still feel positive, my time in rehab is definitely made me more excited about finding independence again. Everyday there something new we are trying, or building, and conquering.

Having 4 to 5 hours of therapy, not including the therapy I do with nursing or on my own, leaves my energy levels low by the end of the night, so blogging has been neglected. There are so many exciting things going on, I'll try not to make this post too long but I want to update the things I have learned.

A few days after I got here my therapist, Dr., and I wanted to look into my diagnosis more. We are having a hard time getting a solid diagnosis. While my original diagnosis was Guillain-Barré, the symptoms I have now correlate more wish an issue directly relating my spinal cord not my peripheral nervous system.  They are unsure if my original diagnosis was completely wrong or is it actually has the balls into something else somewhere along the way.  Right now we are also looking into the possibility of transverse myelitis.

A couple weeks after I was here I got invited to start doing recreational therapy in addition to minority schedule 3 hours.  Rec therapy is a lot of fun. I been able to pool therapy a couple times as well as crafts, visits to downtown, and an outdoor arm bike.  It's been fun being able to dabble in things I wasn't willing to spend the money to figure out if I can do well or not. It's given me fun activities to do on my own as well. The rec therapists are fun and lighthearted which make spending time with them enjoyable.

Occupational therapy has helped me with a lot of adaptive tools. I have a few things to help me take care of my own personal needs. I have adaptive cooking utensils, a new cutting board, a tray that fits on my wheelchair, and my new splint (which I lovingly refer to as my terminator arm). We have also talked about possibly getting a van that I can either be a passenger or a driver in. I was a little hesitant about the thought of driving again, but I've seen a van this other patient drives, he's a high spinal cord injury, with very little movement in his arms and he's driving. The more and more I think about it I think in a couple of years my children can put themselves in car seats and we would be able to go do things outside the home more often.  One thought to ponder, I am sure a van like that will probably cost a pretty penny. Plus if it's set up for me to drive, obviously I will have to do all the driving. It's definitely something I've been thinking about a lot more.

Physical therapy is definitely the toughest part of my day. We've primarily been focusing on transferring myself using a slide board, which I can almost do independently which makes me excited. Also doing a lot of strengthening, and I can almost get from my back to a sitting position with minimal help. Today for physical therapy I tested power wheelchairs. While there's this small voice inside of me that excited for independence (possibly driving again), more opportunities, and being able to get around easier, there's also the small devil standing on my shoulder saying I've given in. I want to make sure just as I'm doing something that makes it easier, but I'm not still trying to progress to the most liability.

Although days are busy and tiring I'm truly thankful for all the people who work here. My CNA's and nursing staff, therapists, and doctors have definitely helped my state be as enjoyable as it could be that have really helped me seeing progress.

I'm thankful for the time I've been able to spend here, but the countdown is on.

Less than two weeks and I'll be headed home again.

One Week Behind Me

Well I have officially been here one week. So far it has been very good. I'm so impressed with everyone that works here. Their attitudes and knowledge are very impressive.

In physical therapy, we're working a lot on independent slide board transfers as well as balance and overall strengthening. Within a week I already feel a lot more confident with my transferring, and am hopeful that if I will have it down.

In occupational therapy, we are working on strengthening, adaptive tools, and a new hand splint that will help me pinch between my fingers and thumb better. This morning I worked on independent dressing and it was so hard I can't even explain it. I was so physically exhausted after a half-hour of wiggling around, trying to get my clothes off and on, reaching to my toes trying to push them over my feet, and him leaning forwards and backwards. I was thankful they came at seven in the morning so I could take the rest before getting up for the rest of my days.

I'm also working on bowel and bladder training ( is that TMI?).  The only reason I bring this up is because this is seriously as physically exhausting as physical therapy and occupational therapy.  Even more it's probably the most emotionally draining part.

I also found out today they would like me to stay for six more weeks.
I will more than likely be discharged on October 4.

Braces Update

Sorry I have been such a slacker at updating this blog. Since I use a voice program to update it I preferred to do it when no one is in the house, except when I don't have my headset I'm pretty much stuck with not doing it at all. So here's what's going on, and what has happened last couple months.

On May 11, I got my full leg braces. The first time I tried them on, and stood, was in the orthopedics office. My dad, my physical therapist, and the orthopedist all helped me stand.  While it definitely was not easy, it went better than I had expected. I had nightmares for days before we went to get my braces that as soon as I stood upright, I passed out, then fell flat to the ground. Luckily, that was not the case. I did get dizzy, but if I leaned back against the table and laid my head on my dad's shoulder it was enough for me to recover before I could stand again. Everything went well at the orthopedics office, so we took the braces and went home and started therapy that very week. The first few times I stood, I stood in front of the kitchen sink. My hip flexor muscles are so tight that I had to stand with my back arched in order to stay up, or I was thrown forward.  Every time though, I was able to stand up straighter and straighter.  Standing in front of the sink even got a little too easy, so we now stand in front of my bed, and I use my dad to help balance me. Since my hands don't work, I'm unable to use a walker for balance. I'm hoping this week to get a platform walker, that will allow me to balance myself with my arms bent and resting on a platform, and my shoulders will able to do more of the work. We have also upped my sessions from twice a week to three times a week.  The biggest thing, is that I have actually taken a few steps. While I don't downplay my accomplishment, I don't consider them real steps, since it took me and my physical therapist and my dad to stay upright while I did them.  I do take credit for kicking my legs forward. It's definitely happen a lot quicker than I ever thought it would since getting my braces.

I also am looking into possibly going to Boise, to The Elks. It's the largest rehab facility in Idaho, and they have inpatient rehab for all kinds of people. They train spinal cord injuries how to be more independent. Although I don't have a spinal cord injury, my recovery is lightly based off the same rehab. Where I have progressed quicker than I imagined with my leg braces, I have discussed options with my therapist to thinks that might be a good idea.  If I get approved I will go to Boise for a few weeks to do more extensive therapy. I would be required to do a minimum of three hours, five days a week, and with that much therapy I hope that my progress would be much quicker. Hopefully I will know soon if I am approved, and when I can go to Boise.

Leg Braces

Yesterday I went to Idaho Falls and was measured for leg braces.  It was quite the experience!  After being stripped to my unders, they cast both my legs from hip to toes.  Then they cut the cast off and will use those to build my braces.  Now, I wait.  Approximately two weeks.  Then when I got to try them on, I will get to stand.  It will be my first complete upright position in 16 months!  It will be between parallel bars and help, but it will be a milestone.  

My  braces will look similar to this but will be dark gray.

KAFO's

I go to the doctor again in a couple of weeks for a checkup. I'm so excited to go because I feel like I have made some good progress. Also, when I go, I will get new orders written to help my progress ... I hope. My PT and I have been talking, and we think it's time to look into full leg braces. This will help me with standing and eventually walking. Since it's something I will need for a long time more than likely, we decided to just go for the braces and see what we can accomplish. I know they're still a little ways off since I will have to be fitted for them and they will have to be made, but my heart seriously flutters every time I think that I may be standing on my own again. Not only do I feel excitement, but I feel at peace that this is the right step to be taking. I know it will not be easy, and I know it doesn't mean I will be walking shortly, but it's something new and I feel like it's finally a good step in the right direction.

Crawling ... or dragging!

I have been a little more tired than usual the last couple weeks, I'm hoping it's a healing spurt.  I remember when I was in the women's center, shortly before Talon was born, there were days for a couple of weeks I could not get enough sleep to save my life. If I take a nap during the day, that I'm up at night, if I don't, I'm exhausted all day but I sleep at night. It's a vicious cycle.

Yesterday after taking a nap, I was laying on my stomach. I decided to see if I was able to army crawl. I knew my legs were going to cooperate, but I wondered if I could shimmy and scoot forward any distance at all.  I totally did it! I went about 3 to 4 feet, and it took me about 10 to 15 minutes, but I did it. I probably could have scooted better and further but my body is such dead weight that my shirt kept pulling me tighter and tighter. Then I had to try to rock side to side to loosen my shirt up. And oh boy, do I have the rug burns to prove it. I think I would like to find something sticky for my arms, like a jar opening pad, and see if I'm able to scoot better on a slick surface like the kitchen floor. I think I'll let my elbows heal up before I try it again though. It was definitely exciting to feel that I moved any distance on my own. I will definitely keep working on that.  Who knows, maybe this will be the beginning of some more movement on my part. I guess only time will tell.

I know I have been a slacker and blogging. I just feel like I'm blogging about these things that are so tiny, and although their exciting I just wish there was bigger things to report.  Like it's really so cool that I can straighten my leg a half of an inch.  We're doing so much in physical therapy right now. It's fun to see the things I can do now that I couldn't even do a month ago. I can tall kneel in front of a rolled up egg crate, I can scoot backwards while sitting, although it's very hard and I make very little distance.  My physical therapist suggested, if it's possible, that once I start working on standing and other things closer to walking, that I may want to look into going to a rehab facility again. It is still a ways away, but it's something to look forward to.  I feel she wouldn't even suggest that if it wasn't something she knew was going to come eventually.

Left Legs Turn

I am glad that my left leg finally jumped on the bandwagon. While doing therapy yesterday, my left leg was slightly bent, and I was able to kick it up. It was great to feel my whole leg contract to do the motion. It's also a good accomplishment because the movement is not only hard, but I have to fight gravity to do it. I feel strength in my legs more and more every day. I can't wait until I can do more and more things on my own.

Popping and Shopping

I feel like things are still progressing at a steady rate. I have had more good signs that things are continually progressing. My lower abs around my pelvic region have been contracting, which hopefully will help me get some more strength in my core.  I have also had a few more popping noises going on throughout therapy. My left hip has made a couple large popping noises, which leaves it incredibly uncomfortable. Luckily, we have found some stretches that help put my hip back into place. Also popping quite regularly are my shoulders and  wrists. My therapist say this is pretty normal since I don't have strong enough muscle to hold my joints into place correctly.

I have also enjoyed shopping and browsing online for OT supplies. There are so many crazy contraptions out there. I never thought that I could spend 2 to 3 hours just browsing around looking for things to help me. I was checking out hand controls recently. If my hands get working, temporarily I can use hand controls drive a vehicle. Now don't get nervous that I'll be on the road anytime soon, this is still a long ways away. It's nice to know though that there are still options out there.

I also have been looking into going back to school. I would love to take some online classes, and work closer towards getting a degree, the biggest hassle now is deciding what to go into. How much I recover will definitely play in the deciding factor, and since that is unknown it makes it even tougher. I have a couple years under my belt so I don't have a lot of free classes I can take before I will have to decide on a degree. It's something I'm still working on.

2011

Things are still moving fairly slowly. I do still have that little bit of movement in my left leg. While lying on my back if someone stabilizes my eight goals and my knees are bent, I can also hold my legs up in the air. Of course the muscles get tired and eventually they fall but it's a start.

The spasms are getting stronger every day. When my abs spasm I almost can't catch my breath sometimes. I also think that the new pressure in my stomach as causing to have some appetite issues. My legs can spasm so hard they stick straight out and actually lift off the ground. There also contracting and bending. It's almost as if they are learning when to bend and went to straighten, sometimes. The good thing about them bending and straightening is that means that both the front and the back muscles are working.my tricep in my right arm is finally starting to trigger to. Once I build up some strength this will be enormously beneficial. It will allow me to slide or transfer on my own.

I have a new brace that I was supposed to wear on my left arm. The joint between my wrist and my first thumb knuckle is awfully tender when bumped wrong.  They call it a De Quervains. They aren't 100% sure what causes it, but they believe it's an overuse of my thumb. This is pretty likely since my son was the first finger I can use to push. I use it every day on the computer, I use it to control my bed, so it's definitely being worked more than my other fingers are.

The pain in my right hip has come back. I really cannot figure out any rhyme or reason to why it comes and goes. It's not unbearable, but it's definitely not comfortable. Things are definitely coming along. With the new year it's deftly made me make some resolutions I hope to be able to accomplish by the end of the year.

1. To transfer on my own.

2.  To be able to roll over from my back to my stomach.

3. To be able to crawl.

4. To be independent in my wheelchair.

5. To walk.

Although most of these goals depend on how quickly my body continues to heal, my resolution is really more to do everything in my power to make sure that they are accomplished. It is up to me to work hard, keep trying new things, and to not give up. 2011 has my name written all over it!

New Goals

Every eight weeks my physical therapists have to set new goals.  I am particularly excited about my new goals for the next eight weeks.  My biggest goal is to crawl 5 feet. It's crazy to think that I might actually be able to move any distance on my own. I'm going to work hard and do everything I can to make this goal a reality. We are also working on slide board transfers, wheelchair mobility, and rolling.

I also got my new wheelchair today. It is amazing! The modifications that were made truly beneficial to my progress. I am able to navigate around the house now on my own. Although there is still progress to the be made in at least now I can work on it. Plus it's nice that it's not lime green.

Update

Recovery is coming along. Between therapy and zoning I feel like I'm making a good stride! The strength in my legs and abs is getting stronger every day! I feel like things are finally starting to heal at the level I want them to. Although there isn't any significant movements I feel it's only a matter of time.

Every week in therapy we are able to try new things. A couple weeks ago we tried crawling. Although my legs were cooperating I was able to balance and hold myself up. I have also been doing the tilt table nightly. Usually I just end up sleeping on though. Apparently my dad built into comfortable, I just can't seem to stay awake some nights. It must be a site for my parents to see me sleeping standing up. Jack also loves to climb and lay next to me on it. My occupational therapist has also worked up a splint. This helps my hand which is normally curled straight and out and I am able to push more through it. This will help my strength in my right arm much more.

Although I am coming close to my year mark, I feel like things are right on track! I look forward to the progress I am continuing to make each day! So watch out!

Friday, October 1

WHEW!  I am one tired chica!

Therapy has been so awesome this week.  My theerapist were able to get me on my hands a knees.  We all were pretty excited how easy it was.  That is my new homework, to do as many of the movements as I can on my own.  Then slowly but surely I will be able to do it all on my own.

I also am able to roll off of my stomach and to my back.  Not very often do I get stuck but if I do Jack is usually happy to come push me over the rest of the way.  He feels so helpful and I think he likes pushing Mom around.  

My other homework is trying to lift my butt off the ground.  I am unable to push through my right arm unless someone holds my hand down.  It makes this task more difficult but it's still not impossible.  I just have to keep practicing and getting stronger.  That's how everything has started and progressed thus far.

Wednesday, September 22

What a day!

Today I overloaded on therapy.  My P.T. came and I stood on the tilt table for 30 minutes.  It's always good to feel upright. 

Then I went on to do some O.T. on my own time.  I started by filling my one week pill box.  Seems like a small task to people with dexterity, but not so small a task for me.  I put 91 pills in each tiny compartment, pill by pill by pill.  It took me almost 45 minutes of pinching.  

Then I attempted to fold laundry for the first time.  They looked a little scary but I folded a full basket of the boys laundry in just over an hour.  

Lets just say I'm ready for bed! 

Tilt Table

This week started tilt table therapy.  It's pretty crazy to feel even semi-upright again.  It's good to feel weight through my feet too.  My therapists also say it's the best way to remind my brain that my legs have a purpose.  We are all hoping that this may speed up the healing process.  It went well.  I got a little dizzy/nauseous towards the end but it was still good.  My blood pressure is just so messed up too.  I get tilted to a certain point and it's like the blood just puddles in my legs and hangs out there.  We will keep at it and hopefully see some progress soon.

Therapy 8.4

Good news is coming.

My legs have tone in them!  They are not firm by any definition of the word but they are not as floppy or flaccid as they have been.  My leg muscles are twitching.  They are twitching to gain strength.  Once they are stronger then I can begin working them to build more strength.  It's another good sign that my nerves are healing.

Technically I still have neurological damage.  I have clonus which is a tapping in my foot when trying to flex it.  Once it permanently goes away it's a great sign.  It shows I have made some significant neurological healing.

Recovery from GBS is full of peaks and plateaus.  I am pretty sure I am in a peaking period.  My toes are cramping more as well as tingling.  I have that feeling that my limbs are falling asleep ... that prickling pins and needles feeling.  I also am having some serious pain in my hip.  I think I have sciatica as well as bursitis.  It's probably the most painful thing I have to deal with.  The pain pills I have don't really do much since a lot of my pain is neurological.  I also have scraped my elbows to bleeding by attempting to get on them while on my stomach.  I may need to invest in some elbow pads!

Therapy 7.20

 During P.T. Friday my therapist said she felt a little kick back from my hamstrings.  I wasn't really sure because to me I always feel like I am pushing.  So I didn't really take it to serious.  I guess I try to be as real as possible about my recovery.  Even though I would LOVE to suddenly wake up and have my legs work I know that's just not going to happen.  I guess I just don't want to set myself up for disappointment.  I know it will come but I also know it will be RiDiCuLoUsLy slow.  

But now I know

 

We have PROGRESS!

I had a new P.T. come today and we did stretches and he mentioned again that there is push back.  

   I am pushing back!

After PT left I was so tired!  I had Kelly put me on the floor and I was out of it!  I slept for over two hours.  When OT came I mentioned to him what PT said and he got so excited he had to test it out himself.  He agreed!  Something is working there!  We also did some electronic muscle stimulation on my right hand.  With just a little charge I was able to wiggle my middle finger.  Hopefully it will stimulate more function!

It's so good to have these small reassurances that things are healing.  We pray every night for signs that I am getting better.  This is just an answered prayer!   Things are moving forward! 

Today was a good day!

Therapy 7.12

Therapy is good.  I enjoy working with my therapists and seeing the small improvements everyday. 

Yeserterday I worked with my PT.  They usually do range of motion on my arms and legs before we really move on to anything else.  Luckily 3 of my 4 limbs have all stayed pretty flexible ... my right arm hasn't been as lucky.  It's not unfixable, it just needs a little more time.

 

After ROM we get into the tough stuff (for me and most infants) ... sitting.  I am moved to a sitting position on the side of the bed.  My therapists do this most often by grabbing under my legs and behind my back and spinning me.  Once I am stable on the side of the bed we do a variety of exercises; leaning on to my elbows and back up, reaching across my body, leaning forward and back.  They are all to strengthen my abs.  It's good because I can feel my muscles contracting again, like there is something besides flabby mush in there again.  

No wonder infants have such a hard time!  I had to learn to hold my head up again, to sit up, to push through my elbows and when I lay on my stomach, and I am attempting to roll over.  I seriously know the frustration they must feel as they grow and learn new tasks!  Maybe that's why we don't remember it.