Tuesday, November 30, 2010

Lara's Fashion Fundraiser

What girl doesn't love fashion?

Maria Byrd is not only a great friend of Lara's but is also a local CAbi consultant who is having a fashion fundraiser this weekend!  Friday December 3 6:00 pm to 9:00 pm and Saturday December 4 10:00 am to 1:00 pm. 

Never heard of CAbi?  CAbi stands for Carol Anderson by Invitation.  It is a line of designer womens clothing (but not designer clothing prices) that has something for everyone.  The designer Carol Anderson used to sell her clothes in Nordstrom until 8 years ago when she started CAbi. Sizes are 0-16 (some run big and fit up to 2x) and XS-XL.  You can check it out and browse here.

http://www.mariabyrd.cabionline.com/


So how do these great clothes help Lara?

All of the proceeds that Maria would normally earn she is donating to the "Lara Chavez Trust" donation account that helps with the cost of Lara's overwhelming medical bills.

You can come by to try these clothes on!  Maria has a whole collection displayed waiting for you to see them in person and even try them on.  Just email me at omarathonmom@gmail.com and I can give you directions.

You DO NOT have to attend the event to order.  All you men out there, Christmas is coming and your lady needs to look great (and you know you hate going to the stores).  And ladies, what are you wearing to those Christmas Parties?  Ladies you could make it easy on him and just give him a wish list and let him choose.  Do you need help choosing that color for your lovely lady or not sure what size she is?  Are you wondering ladies if it is clingy to all the wrong places? 

Place orders and/or ask questions by calling or texting 360-551-9600.  Or you can email pinksparklycape@live.com

If you go to the website and just order it will NOT be included in this fundraiser.  All orders need to be in by Tuesday December 7th.

Yay For Hair Cuts and Showers!

Sunday was a good day for Lara.  Well it didn't necessarily start off that way.  She had refused some of her medication and refused to wear a boot she has to wear on her left foot (to keep it from becoming inverted and then the chances of walking are less).  By the time "the sisters" got there she seemed to be in better spirits.  We had a "little chat" about the medication and wearing the boot.  She seemed to understand, for that moment at least.  On the weekends there is only one day that is considered an easy day of therapy and then a day off.  Since she had therapy on Saturday, she had Sunday free.  James Harris from Sugardaddy's Salon came and gave Lara a hair cut.  He brought the salon to her.  So great, thank you Tim and James.  Lara's hair was so long, it was just one big knot half of the time.  She got a cute bob.  She loves it.

We did a couple strolls through the halls (well, we strolled, she rolled).  At one point she even said, "Come on guys let's go see what we can see."  That felt good.  It's those moments that we are having to cling to for now...the "Regular Lara".  Overall it was a good day.  We laughed we cried.  As good of a sister time you can have under the circumstances.

Monday not so much.  She did wear her boot (it is a BIG square, heavy, dark green with yellow-y cream fur, and did I mention heavy?) and take her medications so I guess the talk worked.  She was a bit cranky and frustrated.  (Ok...I know we all would be at some point right?)  She didn't get to finish her afternoon therapy because she was having such pain in her left leg she had to have an ultra sound to make sure there was no clotting.  Nope, no clotting.  One of the doctors explained that through this phase where she starts to regain some of her senses her sense of feeling is overwhelming.  Or as Lara would put it as Mom was putting her sock on, "Ow!  You're tearing off my toenail!"  So just a smidge sensitive.  She was having excruciating stomach pain at one point.  So much so that she was shaking.  She seemed better after a "Lara pill" (that is what she calls vicodin).  She was not interested in strolling the halls or much of anything else.  When I left in the evening, she seemed just overwhelmed with emotions.  Frustration, aggravation, depression, grief, sorrow.  That was at dinner time.  I think she got news that she may get to take a shower in the morning...I know that would lift her spirits.  First one in 29 days.  It's the simple things that seem so gigantic.  Yay for showers!  (You didn't know you were so blessed to be able to take one whenever you wanted did you?)  So like I've said before, we are in the emotional battle of this process.  I know she will overcome it.  ("Rocky" theme playing here.)

Saturday, November 27, 2010

God's not finished yet

It's been so busy and so much has happened.  Lara no longer has her pic line in.  That is basically a line in her vein in her arms for emergency iv's.  So no more venous drugs, or supplements!  Lara no longer has to do her breathing treatments regularly.  When it sounds like she may have some fluid in her lungs or just a little "phlegmy" they give her some of her breathing treatments that she can do on her own.  No more nebulizer.  Lara is making leaps and bounds in her therapy.  Not literal leaps...well not yet.  ;)

With Lara crying the day before about wanting to go to the Byrds for Thanksgiving, we all weren't sure about what to expect in terms of Lara's mood.  She seems to be, well like any of us would be in her situation.  Happy and joking like regular Lara one minute, then crying and wondering why her, the next.  It was a good day. We all got some laughs in.  She had a few moments of wanting to go home.  But I can't blame her.  It is hard for her to be there by herself.  She called my mom a couple times in the night and then in the morning wanting her to come in.

Yesterday Lara had an echo gram.  It's an ultra sound of the heart.  Her heart rate has been high for awhile and they just wanted to make sure there was nothing wrong.  Lara got pretty scared and called saying there was something wrong with her heart.  Once she understood what was happening she said several times, "I just need someone to come with me because I won't remember what to tell Dad, and he is going to ask me."  Got the results of that and everything is good.  They have put Lara on some medication to help her focus and help a little with staying awake and alert during the day.  Lara still struggles with some daily routine type things.  Like she will argue with you until you believe it that dinner time is breakfast.  She is pretty adamit about it.  Or that for three days straight they have only fed her grilled cheese, tomato soup, and fries.

She has been making some late night or early morning phone calls.  Sometimes not really making sense.  She did call me last night to tell me they took her pic line out.  There are no words to say what I had when I saw her picture lighting up my phone.  After we hung up she texted me.  A little punch to the stomach that it is just gibberish.  "Highighii mode hidellkl"  So I just wrote her back, "Thanks for texting me.  The girls were happy they got to see you today.  You really are doing great Lar.  Little steps at a time."  Not sure what she was wanting to tell me through the text, just hoping I was calming fears if there were any.  (They seem to grow at night).

The hallucinations are still there, a little less than before.  Again, when she is tired is when she seems to have more.  She seems to have more fear.  Today she cried to (and with) Lisa about her hair.  She found her bald spot (that is still growing) plus her two shaved spots which she has been worried over from the beginning.  Telling Lisa she has spent so long growing her hair out.  She finally let it out tearfully, "I don't want to look like a cancer patient."  Tomorrow the AMAZING James Harris (from Sugardaddy's Salon) is coming to see what magic he can work for her.  Emotionally Lara is on a very bumpy ride.

Physically she is making strides.  She had much more movement on her left side. So much so today in PT she could kick her leg up a little while seated.  She also walked again a little ways.  This time the therapist still helped on the left knee.  It wants to buckle.  But she was using her hip to get that left side going forward.  OT and ST has her working on things like, math, telling time, playing games (rules of taking turns, concepts of the games) some things that I would never think of.  Like "Lara, you are in a room with lots of seats all around you, it is dark, and you have popcorn, where are you?"  "Movie theater," Lara answers.

Considering where Lara was physically this time last week she has made such huge success.  She still has a very, very, long way to go.  She is not only in a daily physical fight.  Fighting to regain what she once had in her strength and abilities.  She is also in an emotional fight.  She questions daily why her, she trys to be a good person, it's not fair.  My heart cringes when I hear her ask those questions.  My prayer is one day she will see that through this experience God is using her.  God is not finished with her yet.

Wednesday, November 24, 2010

Go ahead and squeal and cry now.

We walked in and the first thing out of Lara's mouth is, "I walked today."  Yes again, the squeal.  We will address that in a second.

She had just come back from lunch, but instead of in her bed she was in her wheel chair.  One of the things they work on with her is just her endurance of being up and awake and not sleeping all day.  So while she is sitting there Lisa offers to brush her hair.  She had been growing it out for her wedding so it is pretty long.  Now remember she has two shaved spots on her head, one in the front on the left side where they had the drain, which is now stitches, and one in the back right where they put in her shunt.  That one has stitches too, but is also kinda like a big bouncy ball under her scalp...not that it bounces, but that's about the size.  Back to her hair.  They put her shunt in a week ago this past Tuesday.  Ever since that surgery when we brush her hair there was a lot coming out.  Some, we thought was from the shaving for the shunt, and we knew some would come out just from stress and trauma.  Yesterday Lara had mentioned cutting her hair.  It hurts her to brush it and it gets tangled very, very bad.  So she was thinking something kinda short, less to tangle.  Lara has been concerned about her hair as I have mentioned before and we keep reassuring her that James, (James Harris from Sugardaddy's Salon in downtown Port Orchard who is AMAZING) can work his magic with anything and not to worry.  Well today as Lisa is brushing her hair, she extracts the usual wad of hair and looks at me and points.  So I go to the back of Lara...bald.  She has a pretty big bald spot on the left side now (about the size of my fist).  We didn't tell Lara.  We didn't want her to worry more.  So, that is something you all could be praying for.  That for a moment in time Lara may not have hair, but that she doesn't let it crush her spirit for that moment.  And James...get to work!

We only got to see Lara do PT today.  Technically  we aren't supposed to get to go upsairs to the gym.  But we got to today, yay.  They got her up there and put some shoes that they have and this long brace in the back of the shoe to help Lara on her left ankle so she doesn't roll it.  Her therapist takes her to the hallway, parks her by the wall with a railing and tells her she is gonna show us how she walked this morning.  I was so excited.  The therapist helps Lara stand up and Lara is hanging on to the railing.  Another therapist takes away her chair so she can't try to sit down.  The therapist takes her left leg and moves it forward for her, Lara steps with her right.  The therapist moves her left leg again, and Lara steps again with her right.  It was awesome to see.  Don't get me wrong.  Today, Lara could not walk by herself.  Yes, someone has to move her left side for her because she still can't move it.  But just to see her up and out of that chair was like...well there is nothing I can really compare it too.  I wanted to cry, squeal, yell how awesome she was, hug her, and then cry again.  Lara in two sessions (she needs a break) walked almost the whole hallway.  Between the morning session and the afternoon session of PT Lara walked about 45 feet.  I KNOW, RIGHT?  (you can squeal, cry and yell how awesome she is now).  The last go round of walking she was tired.  She doesn't always have the confidence she can do it.  Even her right side is unstable, just from laying in bed for 3 weeks.  So she gets scared she is going to fall.  I am just proud that when she thought she couldn't do anymore, she pushed on for about 7 more steps...that's when the growing happens.

Then Lara got back in her chair and practiced wheeling herself down the hall with just her right foot and right hand.  She did pretty well...kinda fast even.  At one point she did start crying.  Saying she wanted to get out of there and she wanted to go to thanksgiving at the Byrd's.  Finally we had to tell her we would talk about that down stairs and now is time for PT.  By the time we did get back down stairs and back in her room she was better emotionally.

On a way more personal note and I may get in trouble for this... but Lara used the actual toilet today too.   With the help of two nurses she got in there, and they even closed the door some and just stood outside it until she was done.  I know, some are thinking...why in the world would you share something like that.  Here's why...she can balance enough to be left alone!  (In basically a caged in toilet with all the bars they have around it.)  Besides that, wouldn't you want a little celebration for your first time to sit on a toilet in 24 days?

Tuesday, November 23, 2010

Getting back to center

Wow, what a difference a day makes.  Not knowing when or even if (due to weather conditions) any of us would be able to make it into see Lara today, it was difficult leaving her last night.  Especially now that she is getting to be more understanding of her situation and her sometimes emotional struggle with it made it even harder.

Today was a good day overall.  It is so hard to get details in because so much happens in one day.  Yesterday Lara had worked with PT on trying to sit balanced.  Because her brain is not connected with her left side, basically when they sit her up, she just falls either back or to her left.  Mom described it best as she is like moving oatmeal.  The therapist had her in a seated position on the edge of the bed.  The therapist is in front of her, I mean...almost on her, seated in a chair.  I am standing behind her just in case I need to catch her.  Lara has basically zero strength on her left side.  So her right side overcompensates to find her center, and ends up pushing to the left.  Well her left side can't push back so she falls over.  (I hope that makes since).  So now that Lara is positioned, the therapist has her prop herself with her right hand on the bed...so kind of leaning forward and to the right.  Lara then has to go down on to her forearm and push herself up to center, without falling.  A kind of push up of sorts.  Sorry, but on those cushy beds, I think a few of us with weak abs would have a hard time doing that.  You know the crazy thing was as she was doing it, it got easier and easier for her to find her "center".  Then she was sitting.  She looked like a rolled sack of potatoes, but sitting none the less!  They worked a little while longer on some other balancing and don't get me wrong, she would lean and the therapist would tell her come back, you're leaning, but still classifies as sitting.  She would pull herself back.  Just getting her to recognize and find her balance on an unbalanced surface was a big deal.

Due to the road conditions we didn't get there until lunch time.  Peeked in her room, no Lara.  So we went down to the dinning hall.  Can I tell you Lisa and I were FAR away.  I mean, the other side of the room and still in the hallway just through the door.  I waved.  It's like peeking in on your little child on their first day of school.  We had "perma-grin" you know when you smile so big and hard it hurts...and you can't stop. We waved and she saw us.  I don't know exaclty how far, but we were "I wasn't expecting her to be able to see us" far.   We are not supposed to go into the dinning hall while the patients are eating as visitors can be a distraction.  So...I go in. :)  I lean down by her shoulder, "Hey just wanted to tell you we're here and we will be waiting for you in your room until after lunch."  Her face scrunches up, "Why, you can stay here."  "Well, we aren't supposed to be in here.  We don't want to distract you from focusing."  Totally said for the nurses benefit that was standing right by me.  "Oh, guess what I did today."  "What?"  "I stood up.  And it was the scariest thing I've ever done in my life."  What I wanted to do was squeal like a little school girl shaking my hands in the air with some jumping.  But I refrained.  "Lara, that is so awesome.  I'm so proud of you."  Gave her a little kiss on the forehead and told her we would be waiting in her room.  Then walked over to Lisa to squeal with her.  WOW.

We had the chance to see two of her sessions of therapy today.  Her physical therapist said that because we weren't too distracting we could watch.  Yay for good behavior!  At one point she wheeled Lara out into the hallway.  There are wide hand rails along all the walls.  Using her right hand on the rail, a belt around her waist, and a quick pep talk from her therapist, the therapist then hoists her up.  Lara stands for a little over 15 seconds.  The therapist does have to help stabilize her legs.  They are wobbley and weak, and she has to help her lock her left knee.  But she did it.  When Lara is all said and done with all of this in a year or two, maybe she will let me share the video.  Lara then sat down and did it a second time...even longer.  Wiped out!  They wheeled her up to the gym upstairs.  She met with the occupational therapist.  They played connect four, worked on some vision field, (remember she can't see out of her left quadrant), then she sat on a bench and had to use her right hand to unscrew these screws and put them in a dish (more balancing while sitting).  She was so tired.

It was a fun day.  We got to laugh with her, she had a moment with Justin, she worked so hard she was tired, and she earned it.  It's nice to have these good days, to balance out the not so good days.  Brings US back to our center.

If God is for us, who can ever be against us?

Sorry about not posting yesterday.  Our power went out and so no internet.

This new phase as I have said before means alot more work, and more independence for Lara.  She is having to learn to do things for herself without help.  Not just how to do it, but that she can.  Washing your armpit one handed is kinda tricky.  I know you're wondering how now that I have planted that visual.  Lara has learned to take the wet wash cloth and fling out, catch it with her armpit, and drag it through.  Who would have thought that up.  Good thing Lara is here to learn stuff like that.  I'm not that creative!

With the weather we had yesterday and getting worse into the night, (for those not in our area we had snow and ice and extreme low temperatures), it was a hard decision, but what a perfect opportunity for Lara to stay the night by herself.

During the day they did what they call a "light version" of her therapies.  She had breakfast at 8 am, 8:45 speech therapy, 9:30 occupational therapy, 10:15 recreational therapy, 11:00 physical therapy, 12 lunch, 1:00 speech therapy, 1:45 physical therapy, 4:00 occupational therapy, 6:00 dinner.  Now in between all of that are her meds, her breathing treatments, her doctor assessments, etc.  So a very busy day.  I think the proudest moment was during her second session of pt.  She was so exhausted.  Her therapist at one point asked her, "Are you getting tired Lara?"  "Yeah..."  "Do you want to lay down or do you want to keep working?"  It takes Lara so long to answer the therapist adds, "I won't always give you that option, but since today is your first day if you want to lay down you can, or you can keep working.  Which do you want to do?"  "I want to keep working."  Awesome.  That right there is what is going to get her farther.  So proud of her.

Last night was her first night without someone from the family staying with her.  Not sure it was as hard on her as it was on all of us.  With this weather and the road conditions, no one knew if we would be able to make it to the hospital in the morning.  Definitely proud of her.

As I have said before Lara is much more aware of her situation.  Heart wrenching moment of the day?  She asked mom, "Mom, was there anything I could have done to prevent this from happening?"  Mom reassured her, "Oh no Lara, this was nothing that you did or didn't do."  Lara tearfully says, "It's just not fair.  I try to be a good person and do what's right."  Yeah, a little choked up on that one.

Praying that God can give her the peace in her heart and as she succeeds through each hurdle put before her she can realize God is with her and nothing can separate her from God's love.  "If God is for us, who can ever be against us?"  Romans 8:31.

Sunday, November 21, 2010

99% vs 1%

I'm not sure if we are just getting to a tougher phase of this all, or if it is just me, but I am having a hard time gathering my thoughts today so bare with me!  (And forgive all of the errors of the previous post!  It was late.)

Last night Lara slept as well as one can with nurses coming in so often.  Time for meds, time to change position (she is not able to roll over or push herself to her back), time to empty the catheter, time for an ekg... so every so often she is woken up.  Not to mention two different sessions of her waking up and saying, "Lacy?"  "Yeah, I'm right here Lara."  "Okay"  long pause..."I wanna go home."  Of course I tell her some reassuring words.  She had a few cute moments too.  During the 1:30 am change she wanted to watch the news.  I asked her if she was sure because it was 1:30 in the morning (trying to encourage more of the night/day activities that can get confused being in the hospital for three weeks.)  I turned it on and it was all of the college football updates.  Once the nurses were finished they told her they were leaving.  She said "I just wanna hangout with my sister, we were playing football."  I had to smile.

This morning was an "easy" version of what is to come.  Only one session of OT and this afternoon was only one session of PT.  She will be having 3 hours a day of just therapy.  Split up into about 45 minutes each between three different focuses.  Speech, occupational, and physical therapy. 

It is hard to describe to people who haven't got to see her the reality of her true abilities.  I try my best, and I try to be honest and detailed without too much gory detail, or soppy sad detail.  Some people have wondered why Lara even needs one of us to be with her 24/7 or if that is more for us.  "Us" meaning her fiance, parents, and siblings.  From day one to today absolutely.  There were times she was tearing out her own tubes...not great to pull out your drain in your head, or your catheter.  There were times she was scared and needed some comfort for the moment because from moment to moment her knowledge changes, not just day to day.  There were times that one of us could get her to do something that was in the moment vital to healing, that a nurse couldn't get her to do (ie eat, breathing treatments, or just even cooperating with the nurse).  I'm not saying that we don't want to be there.  We all want to be there all day if we could.  There is so much information each day and it changes so quickly.  Just even trying to keep the 6 of us current and up to date on the latest information is difficult.

Today Lara had two moments that in those moments I think she was starting to realize what her new reality might be.  Do I think she gets that right now.  No.  The last neuro check I saw her do she told her doctor she was in Arby's.  Perfect example of literally one second she is regular Lara, and the next second, she doesn't really get it.  Today she was working with OT trying to wash up (which is difficult to do with only one hand, you have no balance of sitting, trying to hold your head up, and you have no left peripheral vision and it hurts to turn your head because of the big ole tube in the back of your head running down your neck).  Her therapist was asking if she had gone to school and she said yes she was in school for dental assisting.  I tried to give Lara some gentle encouragement without giving her answers or saying it for her (another thing for her AND us to be working on down here in rehab, we don't get to go behind her making better choices for her, answering for her, explaining for her), that she had graduated.  "Well, Lara are you still in school," I asked.  You could see her thinking.  "You aren't in school any more, do you remember why?"  "No."  "Try to remember, think back to what you do remember and work your way through it."  This was a few minutes.  Her voice started to quiver, and the look of fear...almost starting to cry, "I can't remember."  "You graduated.  Remember?"  "Oh yeah," her voice still trembling, but with relief, "I graduated."  Another moment like that later in her bed about wanting to go home and be with her family.  That quivering voice when she IS being the regular Lara just tears your heart out.  In those moments, I had a glimpse of her maybe understanding in that second, what her NEW reality may be.

She did have some visitors come in who she has been asking for and hallucinating about for some time.  Her little nieces.  When her little three year old niece came around that bed to hold her hand I came up close and saw the tear roll down.  Lara was smiling so big (well, one sided, today her left side of her checks and lips were not participating) it was a happy tear.  It has been exactly three weeks since she has seen them.  It felt good, for everybody.

Lara is now in rehab for sure another nine days.  Depending on so many different factors, it could be four weeks in this rehab facility.  Many of the staff the last two days have asked about living arrangements after her being discharged.  So many variables being involved, not knowing when, what will her capabilities be, what will she still need help with, will she still have room for improvement, how rapidly is she making improvement, can she go to one of our homes, they mentioned maybe a group home, for how long....I could keep going, but that would just bore you and pop my ribs out.  After seeing her two days in a row with what they are doing with her in OT, our reality is changing.  Obviously this is a life changing event.  For all of us.  These next few weeks are filled with so many "IF's" that it is hard to not let your mind run with them...in all different directions.  Especially when the nurses and doctors have told us a few times in the past two days to get some rest.  You need to be rested and ready for when she is discharged.  I think we are getting out of the "survival" mode and into...well I'm not sure what mode exactly, but easy is not apart of it at all.  In fact, survival mode may be "easier".  My vote is to wait and see.  No since in worrying about something that may not even be an issue right?  (99% of my brain keeps telling that 1% that.)  Pray about these decisions we will be having to make for Lara and with Lara these up coming weeks.  There will be some tough ones.

Ending on a much more fun note:
Lara during PT this afternoon moved  herself a bit in a wheel chair.  She used her right foot, and right hand and moved down the hall about 16 feet or so.  Huge.