Scott & Carol Decker

12/15/2011

2011-12-15T20:50:00.000-08:00

Not sure how we found it today, but the article in self came out. Thanks Maryn and Coral, and all others involoved. It's great:) the link is below

http://www.self.com/health/2012/01/saving-carol-decker?fb_ref=social_fblike&fb_source=profile_oneline

11/07/2011

2011-11-07T17:33:00.000-08:00

Wow, I haven't been able to post in this for some time due to not being able to log in, but finally got it squared away. It has been a busy year. Carol continues to amaze. She still does hand therapy on her right hand, which has alot of function now. She still doesn't wear a left hand prosthesis, she doesn't feel that it helps her much. It doesn't "sense" anything, so that is the issue there. Her legs are doing very well. She has therapy still out walking about, and she is getting good at walking on main roads safely. She has been getting training the the department of services for the blind on that for quite some time. Other things she has been busy with, besides the girls, are speaking a little bit. She seems to have some aspirations to do some, I don't know what exactly to call it, but people are interested in hearing her talk about herself, and she seems to like to do it. I don't really do her make up anymore, help her with food anymore. The only thing I really help Carol with is setting out her clothes in the morning, which she told me this last weekend I won't have to do much longer. She really has gained 95% of her independence back. The girls are 3 and 4 now. Chloe started preschool and is doing great there. they both are really blossoming lately, getting real smart, playing more and more outside. We have the same nanny, who is always great. She will be leaving us in March next year, so we will have to deal with getting someone new at that point. I tried to start explaining that one to the girls and turns out wasn't the best idea. All I heard for a couple days was "when is nanny leaving us? Tomorrow?" Both girls are doing girly stuff like ballet, and gymnastics, which they really love.

In January SELF magazine is doing a story on Carol. They have been out to the house a couple times this year planning for that and taking pictures. I will try and post somemore now that I can access this again. We had pictures done yesterday's at Willow's. Carol looks great in this picture!!

6/10/2011

2011-06-10T09:23:00.000-07:00

Well it's been three years today.....happy birthday Safiya!! Thought I should leave a small post today and just say that everything is going fine. Life progresses health wise for Carol all the time, she walks, is a great mom and wife, and everything else a "normal" family is. She continues to get new prosthetics for her legs every once in awhile as needed. She is going to have her final right leg surgery before the holidays this year. There is a bone regrowth somewhere, that's makes it hard to walk on for long lengths of time. She doesn't ever really wear her left arm prosthetic, she finds she is more comfortable and do more without it. She goes to a hand therapist to work on her right hand every week, and a physical therapist in Puyallup who has a lot of experience with amputees. I would say the biggest changes with Carol the last couple months is that she really seems to have a good oversight of the house, not that she wasn't doing well at that before, but now pretty much I have no idea what is going on there schedule wise, and it all is getting done, because she manages it all:) The girls are also doing well, still small, but growing. Thanks for all the support. The Deckers

12/24/2010

2010-12-24T19:47:00.001-08:00

Happy Holidays everyone!!!! Thanks for all the support the last couple years.

Carol, Scott, Chloe, and Safiya

12/7/2010

2010-12-07T21:46:00.000-08:00

So time to update:)

Carol is telling me what to put on this post. So for halloween the girls went trick or treating down our street both dressed as butterflies. They got to learn all the in's and out's of that; like we only know on doors with lights on, and we only take 1 piece of candy, not a handful.

Throughout October and November Carol was very busy with therapies at home, as her formal in house rehab we knew was coming to a close at the beginning of December. She spent the majority of her therapy the last couple months working on learning how to cook/work in the kitchen. She has made dinner several times now...which is great. Today, with our nannies great help she hosted a lunch party where she made salads and soup for all of her therapists.

We had a great thanksgiving at our house and at one of my brothers. I got to learn how to cook all the stuff with Carol's direction and her mom's help...turned out good. For me, work has been going very well, and been very rewarding.

Carol's right hand continues to get more function, although far from the way it was....she is continuing hand therapy in our hometown. Carol got a new electric wheelchair, although she only really uses a chair if she goes to the mall or long distances. We are turning kind of a new page in her recovery being done with the all day rehab. She plans on making new different goals, bigger goals. Getting back into the snow somehow, going on walks by herself, maybe getting a dog to help. Figure out ways to teach the girls. She can do so many things with them from changing Safiya's poopy diapers to bathing them.

Chloe turns 4 in a couple of weeks....she is doing very well. The girls in general are getting along sooooo much better. It's like Chloe all of a sudden realized Safiya is going to be around for awhile so why not play with her all the time. Safiya is talking alot, and has developed into a little kid instead of a baby. I guess she came out of her bedroom today, looked at Carol and said "what happened to your hand".....every started laughing and she replied " I am cracking you guys up". She is going to be the class clown. Safiya used the toilet for the first time last weekend, that we had seen anyway. It was rumored she had gone already. Can't wait for diapers to be over....never thought I would have changed as many poopy diapers as I have. The girls still do kindermusick every week in town. Chloe finished soccer, which she loved, and now is trying gymnastics, which she really likes.

We got the xmas tree up the day after thanksgiving....light around the house this weekend?!?

thanks for all support the last couple years.

The Decker

a couple more summer pics

2010-10-21T12:55:00.000-07:00

Assorted summer pictures of the girls

2010-09-27T09:08:00.000-07:00

9/15/2010

2010-09-15T20:10:00.000-07:00

I haven't really had the time to update this thing. We are doing really well....we have been busy working and having work done on our house. Hopefully within the next month or so we will be moving to our new bedroom. Carol is doing pretty well healthwise. Her in house rehab, which remarkably has been ongoing almost daily for two years, will officially come to and end at the end of this year, so she is really busy at home working on learning how to cook again, how to bathe the girls, and all the in's and out's of what she defines as being a mother. We continue to finetune our house to accomodate and enable her to do all of that.

In doing all of that it is a struggle at times with the girls. They are so used to certain things happening at a certain speed, and Carol in general takes a bit longer. Safiya, has really developed her own personality..she is a little comedian/clown...trying to make us all laugh most of the time. Chloe is challenging at times. Don't get me wrong she is great and we love her, but she is much higher maintenance than Safiya, which sometimes makes everything Carol is trying to do a little more difficult. Most people tell us she is just a normal 3 year old, but sometimes we wonder if what happened to Carol has had some effect on her negatively. Anyway.....what else. Chloe is in soccer, which, she is doing great in.

Carol's leg's have gotten pretty stable, and we have developed a really great system at home for her to take care of herself, even more than the last couple years. I will post some pictures of everyone when I can. Thanks for all of the support.

Scott

7/18/2010

2010-07-18T17:44:00.000-07:00

So here I am standing in the kitchen taking a painting break, and I hear Carol out in the living room, she has started the TV all by herself and is watching "Wedding Crashers" . You that may really know Carol, know this laugh she has when she thinks something is really funny. She was out giggling this laugh all by herself. I have a heard it a few times the last couples years, not many. This was definitely all be herself invoked, if you know what I mean. Had to post about it, it's the first time in awhile, I have seen her be alone, and just laughing to herself without any other personal interference.....in the nicest ways... it was great:))

6/22/2010

2010-06-22T10:03:00.000-07:00

Well things are going pretty good for us, the sun is shining for the first time it seems in a long time. Carol and I had to take Safiya up to Swedish for a minor surgery around her eye last Friday (picture attached:)). She had some small bumps around her left eye. She did great with the sedation and waking up, etc. It seems overnight Safiya is putting together sentences and talking really well. She keeps wanting to sit on the potty like her big sister, but isn't quite sure what to do up their, but she really wants to do the whole thing including flushing and washing hands. Her Birthday party in the tricities was great as well...nice to have the sunshine. I'll attach a couple photos of that also.

Carol's health seems to be doing good. She may be ending formal rehab stuff at the end of summer, or fall. I guess that is a good sign of progress, but feels like cutting the cord a bit. Her prosthetics are going great. She is starting to think more and more about further prosthetic options for her left arm. She has a couple things (hand and hook) but all of that has been on the back burner for quite some time.

Our house is slowly coming together, I keep forgetting to take pictures. Hopefully we will be insulating and sheetrocking in the next couple weeks to month. Talk soon!!

Scott

6/7/2010

2010-06-07T11:40:00.000-07:00

Safiya's 2nd birthday is coming up this week, as well as the 2nd anniversary since Carol got sick. We will be doing a "Yo Gabba Gabba" themed party for her at the inlaw's!! Should be fun, we also are going to a wedding this week for one of Carol's friends. Should be a good weekend.

Carol got a new foot for her legs last week. They are alot lighter, she seems to really like them.

The house is still being worked on. Right now it is electrical stuff. The plumbing rough-in has been checked off. The framing has pretty much been done, but has a couple things that have to be fixed before inspection. As always, thanks for the support.

Scott and Carol

5/17/2010

2010-05-17T21:20:00.001-07:00

5/7/2010

2010-05-06T22:50:00.000-07:00

Well what is new. It is late, and I thought I would leave a post. Haven't done one from home in a long time. Usually do a rushed update at work these days.

So the unpacking continues....this way different than renting. This being our first owned place...we or maybe I have a larger sense of doing things the right way, and every little scratch in something is more upsetting than it ever has been. For some reasons Safiya keeps coloring all the walls, something she has never done anywhere else. Chloe broke her wrist/arm on Sunday doing a summersault (sp?) over the sofa onto the single pane HUGE window in the living room....the window she has been explicitly told to not mess with. Anyway...Tuesday was a busy day for nanny and Carol at her pediatrician getting that all taken care of. She has a really small arm splint...it's funny. For some reason Safiya has had a runny nose ever since we moved in here....This morning was the first time they actually seemed to sleep in normally. Here's hoping that trend will continue.

Things have been moving forward with our small remodel to the house. I hope it is all done in a couple months. What else has been going on......Carol is going right along. She has this place super organized, at least what has been set up so far. There is an assigned place for everything, especially in the kitchen. The weather has been not so good here, so we haven't actually spent much time outside in our yard, but hope to this weekend. I got Carol a hammock for mother's day. Something she has wanted since we bought the house. We'll see how that works out. Health/rehab wise Carol got some sort of final impression/mold for her current legs today. I will try and post some new pictures soon, once I find where the camera is. Thanks for all the support, and attention on Facebook.

Scott

4/27/2010

2010-04-27T08:47:00.000-07:00

Well we finally moved last weekend. It so fun being in our own house for the first time ever. Carol and I have been married for 12 years, and moved almost the same number of times. We finally are throwing away all the cardboard we have saved for over a decade!! Thanks for all of our families and friends help. I don't have any pictures yet, but I will post when I can. Also, thanks for all the support. It has been really cool seeing our hometown, and the world remotivate us.

On Carol news, Carol has changed prosthetists to one closer to our hometown. A few of my patients, are patients of his (Greg Davidson), and have been telling us about him for quite awhile. Carol was very nervous about cutting ties up in Seattle, but she is super excited about the change, plus it is way closer for us. She has a plastic surgery consult with the surgeon at harborview today. He is the doctor who did most of her initial skin graft's/surgeries at harborview. Carol is wanting to look into the possibility of cosmetic stuff that could be done to help make her scarring look better. I am sort of thinking she may have to look elsewhere, as harborview is more of a trauma center. But I guess we will see.

Things are going pretty good with the girls. They are sharing a room for the first time, so that has been an interesting change this week. Let's just say I don't need my alarm clock anymore. They are up at 5:30-6 screaming and playing in their room. Funny, but not at the same time!!

thanks
scott

Facebook Page to Support an Extreme Home Makeover for the Deckers

2010-04-12T12:40:00.000-07:00

Hello Blog Followers!
My name is Sara, I'm a friend of Scott and Carol's. There is a group of us working on a package to nominate the Deckers to be considered for ABC's Extreme Makeover Home Edition. We have started a Facebook group to promote support and include in our package to ABC. The response has been OVERWHELMING! In one weekend we have had over 4,000 people join the page in support. We would like to invite you all to join the page as well.

If you are a member of Facebook, log in and follow the link below to join.

http://www.facebook.com/group.php?gid=112160658809224&ref=nf#!/group.php?gid=112160658809224&ref=mf

Please take a minute to join the "discussion tab" on how this story has touched your life, or give us a brief post of support. Also, if you could invite all of your friends to join us as well we can keep this train rolling :) Let's make this happen for the Deckers!!

Love,
Sara, Emily and Katie

4/4/2010

2010-04-04T10:06:00.000-07:00

Easter morning fun!!

4/1/2010

2010-04-01T14:07:00.001-07:00

Well it has been some time so I think I should catch everyone up on what has been going on with us. I have tried to leave a couple posts in the last couple month (lengthy ones) that have gotten erased somehow. It's unmotivating to do it again for some reason. Here's hoping I have better luck here. So first Carol: She is doing well. The main reason for the slowdown in updates, is generally because of the slowdown in progress. I mean that in a good way actually. mainly I think what Carol is doing lately is becoming much more independent. She rarely uses her wheelchair nowadays. She is getting a new leg today actually, I can't remember which one. We haven't had the last surgery on her right leg, mostly becuase Carol's extended family has been having alot of health issues themselves, and Carol didn't want to be in the hospital at the same time. Carol's mom had a heart surgery and a couple of her aunts have cancer, and her stepmom had cancer as well. So crazy couple years for her family to say the least. What else......we have been very busy with work, and getting our house ready to move into, which is moving very very slowly. We are moving into it next month even though it is not technically ready.

At the beginning of the year Chloe started a ballet class here in town. They had a recital in March I think. I tried to attach the video, unsuccessfully. She did great, but was hilarious. Chloe is 3 now, and Safiya will turn 2 in June. That will be the 2 year reunion of Carol getting sick. Safiya talks very well for her age, saying lots of please and to much "no thank you's" if you ask me:)

I am doing good too!! Gotta run

Thanks for all the support

scott

2/5/2010

2010-02-05T09:54:00.001-08:00

1/11/2010

2010-01-11T21:08:00.000-08:00

So I just have to write a quick post. I just realized that Chloe is growing up. She has a first day of preschool tomorrow, ballet on Wednesday, and music class on Thursday. She needs her own palm pilot soon. She was showing me on the calendar her busy schedule. For some reason I always thought Carol would be more worried about "dropping" her off at school. Carol and I were talking tonight, and she reminded me that Chloe goes to preschool tomorrow. I was like ok, so do you go with her? Carol had to remind that no...we just drop her off for awhile. I responded, will you just be waiting in the parking lot? Carol said no, she will be at home and they will call if there is a problem. Funny....I am nervous for her. That's all!!

Scott

1/8/2010

2010-01-08T20:31:00.000-08:00

Happy New Year....been awhile. Life has been very busy over the holidays. Carol is doing pretty well, Chloe is still not potty trained but turned 3 on new years eve. Safiya and Chloe are playing well together. There has been so much I don't even know what to post. I will put some pictures and video instead!!

Thanksgiving 2009

2009-11-26T21:48:00.000-08:00

We are so thankful for everything we have this year, as the last year and a half has shown how precious each moment we have together is. Thanks to everyone who has helped us, and who have helped Carol do so well. Her strength continues to amaze me. :)

Scott

2009-11-08T15:06:00.000-08:00

So real breifly we are doing good. Carol continues to make health progress. She mentioned to me today when I hold her hand she can actualy feel my fingers on her thumb and pinky....really good stuff. Fiya was so on the run that I couldn't seem to get a straight on shot. She was a lady bug for halloween. As I was typing this Willow dropped our photography from our last session. More to come tonight. Looking back at all of these pictures reinforces the fact that I need to learn how to style girl hair. I swear it is impossible:(

Other stuff. We have decided to go to the in-laws for birdday, and stay here the rest of the holidays. Carol spends all day and night on her legs/or with her legs on. We went out to eat here in town for the first time ever without a wheelchair. Lots of good stuff happening. Her personal goals I sense are shifting to her blindness now. Now that she can basically walk, even though she loves er current prosthetics, she isn't totally satisfied with them. I am guessing with all amputees your prosthetics are constantly evolving in their efficacy. Anyhow, Carol want to really get out in the neighborhood as a blind person, using the blind cane, and all the stuff that goes along with that. Finding possible vocational training, or setting up some sort business (profit or not) to raise awareness of what has happened to her/us. A ways back I bought her a nice voice controlled laptop...she hopes to get better using that is well. Those are the more midterm length of goals she has for now. Thanks again for eveyones constant help and attention to us.

Scott

2009-11-08T10:47:00.000-08:00

10/27/2009

2009-10-27T20:57:00.000-07:00

A sneak peak at Chloe's halloween costume!! She picked it out herself on ebay...

10/21/2009

2009-10-21T21:31:00.000-07:00

Not much going on...just wanted to post a couple funny pictures. I haven't really looked through very many pictures of Safiya lately until tonight. She has really changed and grown up a bit the last month. She talks so much now, and just seems to have transitioned from baby to small kid. I am having a dejavu about typing this about Chloe mid 2008 on here. Wierd....

We are doing pretty good.....work is going really well....Carol is well, Chloe is also well. Chat more later!!

Scott

10-15-2009

2009-10-15T16:07:00.000-07:00

As some of you may or may not know, Carol's stepmom, has been having a fight with breast cancer for the last several months. Being breast cancer awareness month she wanted me to post something she wrote....here you go!

October is breast cancer awareness month I thought you might like to share my story as a prod to those women who don't schedule their mammograms on a regular basis and those who may find a lump but don't take it serious. May 2009, I found a cyst in my left breast, two days later I had a mammogram in the morning and the Radiologist said that it looked suspicious, but not malignant however said to come back for an ultra sound in the afternoon. Both reports showed negative for malignant tumor, but the radiologist suggested that I find a surgeon and have it removed because of what might be hiding behind the cyst and to see what was causing it. I talked to two different surgeons and decided on one of them to do a biopsy. The biopsy also came back negative. The surgeon and I were still suspicious so we decided the surgeon should perform a lumpectomy on July 24. The pathology report from the lumectomy came back stage IIB Lobular Carcinoma, breast cancer. Okay now what to do? I found an outstanding oncologist and surgeon and had both breasts removed on August 17th. A single mastecomy on the right and a modified radical mastectomy on the left. I am currently undergoing 12 weeks of chemo which will probably be followed up by several weeks of radiation. Now all of this was pretty shocking as I am in relatively good health and get my exams faithfully. So my message to you is not to bury your head in the sand if you think something is wrong. Sometimes we can wait too long and then the consequences could be much worse. I am so glad that I was persistant in having the lumpectomy. October is Breast Cancer Awareness so not only this month but every month do as the slogan suggests "Fight Like A Girl". Do self exams and get your exams faithfully. Of course the hardest part of all this besides the obvious is not being able to spend the time right now like we would like to with Scott, Carol, and our Grandbabies. Miss them - Judy Vance (Carol's Step Mom)

10112009

2009-10-11T16:38:00.000-07:00

so a great weekend. I love the fall. Regrettably the red sox lost today, yet affirming my distaste for the angels...sorry marie:) Anyway, everyone is doing pretty good. I decided to start my new resolution to start cooking this weekend. I bought a recipe book to my favorite pizza place in Boston....figs. I successfully have made pizza for the family 4 times this weekend. I am a pro now,:). We took our nanny Erin out to a fine dinner at the Salish.....was delish.

What else.....I converted Chloe's crib finally to a toddler bed. It's one of those stokke oval cribs that converts to a bed. I spent like two hours trying to figure it out. I am not sure I did it right but it seems stable:) For the first time ever I woke up to Chloe starring in my face. I guess she has just been waiting for the chance to get out of her room by herself. Maybe I need to get those special child lock things on the exterior doors? She is smart, and obedient enough to not touch them I think.

Safiya, is saying many two to three word sentences now. It's been awhile since I have mentioned it but she eats anything. I made fig jam and proscuito pizza twice, and she and I ate almost all of it. Chloe was like "ewwww I'll have mac and cheese please".

What else, Carol has been very tired today, sleeping almost 5 hours during the day. It reminds me of quite awhile ago. The last week and a half she has spent almost the entire days, on her prosthetics; I think it takes alot of energy. So she has been napping a bit more than normal....hopefully just another phase, as she adjusts to that.

I haven't really mentioned it before on purpose...but we bought a house in June. We have spent the last 6 months architecting it. I have been trying to make it very user friendly for Carol. Its an old 50's rambler, near where the girls will go to school....about 2 houses down. It's all one level, flat and smooth, perfect for Carol. We have been finalizing plans on it the last week....which after spending alot of time on it, we aren't going to change much, just really adding a bathroom. It's great....we love the place, just wish we would have moved in sooner. We will be moving soon enough, maybe 2-3 months. Thanks everyone

Scott

10/6/2009

2009-10-06T08:47:00.000-07:00

Well it's been awhile since we have posted so I thought I would give a little update. It seems fall has finally come...and life is good.

Chloe and Safiya are both doing great. Safiya's favortite word right now seems to be Elmo... Chloe picked out her own halloween costume, a bat...pretty funny. Carol thought it would be good for me to be Dracula, so she got me a cape at Target yesterday, and also a bunch of those fake vampire teeth things. She thought they would be good to give to the children patients at work...I am on the fence on that one for now:)

Today is out nannies birthday...so happy birthday Erin!!

Carol is doing really well health-wise. She spends almost all of her days on her prosthesis, and still does alot of physical therapy, and occupational therapy almost every weekday. Not sure how much longer that is going to go on. She has decided to put off the last leg surgery until after the holidays, early next year.

Thanks for all the dinners, everyone. I think I am going to to make it a New Years resolution to get good at cooking. Life is going pretty good for me as well. It would be much better if UW had beaten notre dame on Saturday, and if the red sox beat the angels this coming week!

Scott

9/162009

2009-09-16T08:49:00.000-07:00

Well we had another good couple weeks. We went to the zoo again had new family pictures again last Sunday....thank to Willow's Photography!!! Here is a sample...
That night after the girls went to bed, Carol and I were talking and both realized that she hadn't used her wheelchair at all that day....the first time in a year and a half I guess:)

2009-09-06T20:37:00.000-07:00

9/6/2009

2009-09-06T20:31:00.000-07:00

Finally figrured out how to do video...have tons

Scott

9/6/2009

2009-09-06T20:18:00.000-07:00

So nice early fall weekend. Made it to the zoo, right before all the rain started on Friday. Crazy that we had a tornado in town tonight that tore some stuff up. Hope everyone is allright. We are all doing well!!

Scott

8/27/2009

2009-08-27T20:42:00.000-07:00

Carol just got the birthday voicequilt and we are listening to what is going to take a long time to get through the 4 cd's of messages. Many, many thanks for the thoughts, which have provoked laughs, tears, and the funny laugh that apparently everyone knows Carol by:)!! Thanks everyone...priceless.

Scott

8/24/2009

2009-08-24T20:39:00.001-07:00

Carol wanted me to post that she walked around the block, pushing Safiya in the stroller....with our wonderful nannies guidance!! We had an exciting weekend in the tri-cities seeing the inlaws. Very nice weather and a 50th wedding anniversary for one of Carol's uncles. Talk soon!!

Scott

8/19/2009

2009-08-19T12:06:00.000-07:00

Well lots of more firsts for us in the last couple weeks. Carol got the courage to get into the bath for the first time with Safiya. Well it started out just with Chloe, but I couldn't help it and through Safiya in. It was a huge bubble bath, lot of funny pictures, I am not allowed to post. Safiya is saying lots of little words, and has learned how to kiss people. Chloe is saying lots of 8 word sentences, and isn't afraid to use them. As fall approaches Chloe will start swim lessons, continue some basic music classes, and she has asked to learn how to dance all on her own. We also have to decide if/where preschool will be in her future. Safiya has also started some of the kindermusic classes. Carol will be deciding in the coming days when to have her next needed surgery, and has started wondering about some more cosmetic surgeries available to her if any. Thanks for all the support and friendships, and dinners, and everything.

My sister Erin, just showed me the blog of a gal I have heard of alot, but honestly haven't had the time to really look into...the woman from Utah that everyone knows and comments from the cjanerun blog....wow what a story. I have been reading through it this morning in my spare moments. Striking how all of this ha been going on with my family a different tragedy happens to another, but sort of in reading her blog are dealing with very similiar (yet different) issues. Anyway, cheers to your walk up the "y"!! You look great!

the deckers

8/9/2209

2009-08-09T12:02:00.000-07:00

Well Carol's birthday went great. Thanks to all for all the birthday well wishes, cards, gifts, and everything. It REALLY made it a special day for Carol. I will post some pictures, I have a couple. I am sure I will be getting more to post from others, I only had a chance to take a couple of my own. I organized a birthday dinner for Carol in Seattle at one her favorite restaurants, wild ginger. Most of my family was there, and Carol's highschool posse came to surprise her.

As far as Carol's recovery, she made a personal goal on her birthday. She had set a goal last year of walking into this restaurant in heels, which she did. On a more serious note, her right leg bone spur (the one on the left was removed last year) is beginning to give her more and more trouble, and she is thinking of having the surgery before the end of the year. She will see the orthoped surgeon this week to go over options and available times. It's not a have to, but she is getting geared up in her head to have it done. She will be off her feet again for 3 months like the last one. There are a number of reasons for doing it sooner than later. No real changed other than that. Safiya is learning lots of new words, chloe is still not potty trained, and I think Safiya will be walking any day. It is so interesting how two kids from the same parents and family can be so different.

Thanks again everyone!!

Scott

8/5/2009

2009-08-05T08:41:00.000-07:00

Erica wanted me to post about a vioce-quilt cd being put together for Carol. Here is her message.

Hey Scott! I wondered if you would mind putting something on the blog about another VoiceQuilt cd we're doing if you get a spare minute? I have it on the Auction blog and have sent out emails but thought maybe those that follow your blog might want to contribute their messages to Carol as well? Here's the info..
Looking forward to seeing you guys this weekend!
Thanks! Erica

To Record a Message
-------------------
Contributing to the VoiceQuilt is easy -- just follow these three steps:
1) Call 1-877-OurQuilt (1-877-687-7845).
If calling from outside the U.S., see below for special instructions.
2) When asked for your invitation number, enter 73394.
3) Leave your message, just as if you were leaving a voicemail.
When you finish speaking, hang up or press # for more options.

Please help us create a wonderful surprise for Carol Vance Decker by calling the toll-free number below with birthday greetings and a special memory!

Our deadline is Aug 7, 2009. Please call today!

Just think of it as a toast -- a funny story, a shared memory or a favorite quote. Mention your name at the beginning so that we know who is speaking. It's easy and Carol ill love hearing from you.

After everyone has called in, I'll arrange the messages into a playlist or "VoiceQuilt". Then, it will be gifted to Carol as a special keepsake.

Thanks in advance for helping us create this very special gift.
- Erica

8/3/2009

2009-08-03T21:06:00.000-07:00

Well we had another weekend of firsts. A different type though. We went out to the mall and out to lunch, just the four of us....might seem little, but something I have feared doing since all this started. It went pretty well, lunch had a couple minor fiascos, but we all got food.

Carol is doing pretty good....her right leg is fitting a bit better again, and she using it as much as she can. Her right leg bone spur seems to be hurting though a bit when she walks, limiting the amount of time she spends on them. We are trying to decide on the timing of having this last surgery done. It's hard to want to go through all of that again, but at the same it would be nice once it is over, based on how much better her left leg feels since having the spur removed on it. Carol is getting more interested in different types of prosthetics. Up until now, her legs are the type that are very tried and true, that have been the standard of care for quite some time. She is showing interest in vacuum retained legs, and other things. She wants to have the other leg surgery before going to something like that....so maybe another year or so.

We went to the tricities a couple weekends ago, to see all the inlaws, and see the hydroplane races. The trip also went very well. Gradually we are venturing out and trying to do many of the things we used to.

Carol turns 34 this friday.....we have a much better birthday plan for her this year. Last year she was at Harborview, and barely remembers it.

7/19/2009

2009-07-19T21:28:00.000-07:00

Well a decent weekend. A weekend of first for the kids. Safiya took her first steps...I am convinced it will be less than a week before she is running around the place. Carol and Safiya have a really great relationship going now....it's been a work in progress and something Carol works at daily, and continues to. It's great to see. Safiya also gave me her first high-five, and said thank you tonight. I didn't see it as much with Chloe because Carol handled everything almost her first year, but it's crazy seeing your little baby grow up and make a change from nonspeaking little hobbit to a littler person:) Chloe, went poopoo in the potty for the first time as well. Carol is doing great, has a friend from high school over for a few days. Erica......the person who has put on a couple auctions....she has done so much for us. Thanks everyone

Scott

7/13/2009

2009-07-13T10:18:00.000-07:00

So hello all. We are all doing pretty well. Safiya seems to have really taken the leap from baby to infant the last couple weeks, and is really developing her own personality. She has moved from just crawling to bear crawling, and is try to stand and walk...no frank walking yet though. She is saying some words like "ralph"(our cat), bahbah(bottle), mom, dad, and nonono:)
Carol's new fitting legs fit very well for a couple weeks, and then stopped fitting very well. Generally your legs shrink after getting them or even being in your prosthetics over time, and daily. Her legs for some reason actually have gotten bigger. I think it is becuase she works out so much, her muscles grew. Life has been a bit more emotional for her. We have been trying to get out and do more things, and each thing is a new situation. It's hard for her to know how to fit in. She feels like she is a totally different person now, and that is a bit tough. We have been trying to go through the blog together each night from the corresponding day last year, so she can hear what was going on then, which has been hard but good to do I think. So she is having another new set of legs made. She is very strong, but needs more cardio type of stuff, and just be able to walk for longer periods of time with well-fitting prosthetics.

Chloe' is also doing well...as am I. Thanks all

scott

06.28.2009

2009-06-28T21:13:00.000-07:00

Busy weekend and fun weekend. We got to go to a couple birthday parties, and I got to go to a Sounders game....I had no idea we took soccer so seriously here....I am impressed. We also went to the zoo on Thrusday. Chloe loved it so much, on Friday morning she threw a fit because she couldn't go see the lions and monkeys again. The whole time at the zoo, we would see one animal and she would say neato, but where are the lions and monkeys. Finally we saw some monkeys, and she says "where are the lions". Once that girl gets her mind set....:). At the bday party we went to tonight, Carol had to make a tricky entrance to the party...but did pretty well. More updates to come..... Thanks to all who helped us have a great weekend.

6/22/2009

2009-06-21T15:07:00.000-07:00

Thanks to everyone who participated in the silent auction put together by Erica.....once again the worlds generosity especially in these economic times, is astounding to me. I can't begin to say how thankful we are for all the help with Carol's healthcare bills.

Carol is doing so good. She is really impressing me how well she is walking on her new legs....this weekend she wore full length jeans for the first time in over a year. I know many amputees now, and never quite had the same sort of visual illusion with any of them. What I mean is, is that it is strange, in that when Carol has full length jeans/pants on, it looks completely normal. Not that I expected it not to....it's just been so long, that she seems to tall now:) . Especially when she is laying down with them on, she looks very long. All of which are great issues to be dealing with. We have gotten to go out to dinner with them on a couple times the last couple weekends. Its nice, she doesn't get out as much as she would like I think. Anyway, happy fathers day to all the dad's...all though it seems mostly women who read this. Thanks again...

scott

6-10-2009

2009-06-10T15:18:00.000-07:00

HAPPY BIRTHDAY SAFIYA!!!!!!

Thanks so much for all the help,love, and support this year.....without all of it I don't think we would have made it!!! THANKS

6/6/2009

2009-06-06T20:32:00.000-07:00

Thank you to all who came to the house today...the birthday party went great. It was so nice to see everyone, and make her day fun. Here are some pictures from the day.

6/2/2009

2009-06-02T22:03:00.001-07:00

Well quickly we are approaching the 1 year mark since all this began. We are trying to think of all the positives...for many reasons, but mostly for Safiya. She will be 1 next Wednesday. We are having a bday party at the house this Saturday...Frankie's and family/friends and one of those air/balloon castle things, that also has a waterslide....should be cool, although it sounds like it might not be as sunny as we once thought. Any one who want to say hi and see our progress...feel free to stop by and say hello, if you know where we live. Should be plenty of pizza. I can't remember if I posted it, but Carol still hasn't gotten her legs yet. She is supposed to get them next Wednesday, the 10th, on Safiya's birthday. She got to really try them at her prosthetist last Friday. She got up and walked very well right from the get go. Most of Carol's Physical Therapy has been on hold for more than 2 months. She has been having much hand therapy for her right hand, and has really enjoyed that. She does still work out at the house 1 hour per day or so. She has ab's of steel. It is amazing the amount of mid and lower body strength it takes to an amputee. Her new legs are neat. The come up a little higher....above the knees. The keep her from hyper-extending her legs, which she had a habit of. The feet themselves are super neat, and allow her to flip-flops, and heels if she wishes. Something she has been bugging her prosthetist from the get go.

Thanks

Scott

6/1/2009

2009-06-01T20:25:00.000-07:00

I have been asked to post on a couple upcoming fundraisers for Carol.

1st.....there is a poker tournament/run in the tricities next weekend. Please contact me at sdecker@deckerdental.net for details. I can forward you to the right person. I think there are big group of people doing this.

Also, Erica, Carol's friend who did the big silent auction last year, is doing another for Carol (just a couple day long) and wanted me to shamelessly spread the word.

Thanks

5/22/09

2009-05-22T19:50:00.001-07:00

Yes, I own stock in tea clothing:)) great couple days in the sun. Carol has her first sun burn in a couple years. Sounds bad, but it is great!! Her father and grandfather and their families came over today. We are all pretty tired after spending much of the last couple days outside. To all our friends and family, have a great weekend and thanks for all the help.

Scott

5/21/2009

2009-05-21T20:47:00.001-07:00

Some photo's from today!! I know I can't figure out how to get the red eye out!!!

5/20/2009

2009-05-20T10:04:00.001-07:00

Safiya woke up with her first tooth today!!! Maybe that's why she was up crying at 2 in the morning:)

5/19/2009

2009-05-19T20:57:00.000-07:00

Apologies for not getting on here for some time. I was in Boston last weekend for my brother in law's graduation from dental school (congrats Erin) and saw a few old friends, and they made me realize how little I have been keeping you all updated. I will also post some pictures soon. I had lost my camera and just recently found it. So an overall update on Carol and the family.

Carol first. She is doing well. We still have not got her new prosthetics. They are taking a little bit longer than expected. She is very excited to get them. They will be less bulky and a lot easier to put on, we are told. She has been putting on her original ones the last couple days getting back into the swing of things. Her pain compared to before her last surgery is greatly less. She is even trying to come off most of the pain medication she has been taking since this whole thing began. Hard to believe it's going to be a year in just a couple weeks. Carol is busy trying to plan Safiya's 1st bday party. Still no changes visually, and I think we both have pretty much accepted that vision changes are not likely, even though it is a hard thing to admit. She does seem to see shadows if say she wakes up from a nap and it's very bright in the room. So from really dark to light she gets glimpses of things, or at least her brain thinks she does. Either way, I think that means some information is getting through to the brain? Her right hand has been showing slow signs of improvement. She has been getting pain in the hand...which we take as a good sign actually. She showed me make movements in her index and middle finger last night that she hasn't been able to do. This is great as her last EMG test showed no use of her radial nerve that controls those fingers. Her hair has pretty all grown back and has been colored recently, in fact she got it cut again today. She is looking great. I was mentioning to a friend in Boston, that as I look back at the pictures over the last year, it is strange that how something like this can really "age" how you look very quickly. It is amazing how Carol is recovering in that sense.

The girls. Safiya has no teeth yet, but is all over the place. She is fearless, and smiley as ever. Chloe calls her lovey-dovey. Something she got from our nanny I think. Safiya goes to music classes on Thursday's like Chloe and seems to be doing well. Chloe seem's to be ending her hitting phase, but still is very loud when al eyes aren't on her. She got a haircut today also. Chloe is making really long sentences now, and asking really big question also. She told me tonight after closing her finger in our slider door, that she wanted to call and show her doctor, Dr. Spector, and ask him to take a look. Carol's and Chloe's relationship seems to have stabilized to what it was before this all happened, although she tries to get away with some things, due to Carol's blindness. Safiya and Carol's relationship has really grown, considering they didn't have the normal mother-child relationship. This has been one of the harder issues for Carol over the last months. It has taken some time for Carol to be even able to console Safiya is she cried or something like that. Our roles are pretty reversed with the two girls. Safiya is almost sleeping through the night again. Something that has only restarted the last week or so. All in all things are going very good at home.

I haven't said it in awhile, and I just want to thank all the people still helping us and thinking about us, and the new people just starting to think about us thank you. Thanks to our awesome nanny who stays behind the scenes and keep's everything in order..... Thanks for all the dinners, I promise I am practicing and honing my cooking skills. I even read a Martha Stewart (BBqing) magazine on the plane ride back to Seattle. Nice to see a few faces in my other home in Boston, we really miss you guys, and Carol and I will see you next time:). Pictures coming soon!!!!!!

Scott

2009-05-12T10:47:00.000-07:00

2009-04-30T21:21:00.000-07:00

4/30/2009

2009-04-30T21:14:00.000-07:00

Well I better write something before the month is over. Carol officially got the ok for the doc's to restart rehab. On friday she will see her prosthetist to start the fabrication of her second set of legs/feet. It has been a bit of a difficult few weeks of recovery but Carol is super ready to get things going again. So we will post more tomorrow.

Scott

4/23/2009

2009-04-23T18:35:00.001-07:00

Long time no post, and I will post more later. We have been very busy with things but I thought I would post some good news. This is the first day since 6/10/2008 that Carol has had no bandage of some sort on her body!!!!!! She is very excited!!

Scott

4/6/09

2009-04-06T11:44:00.000-07:00

We had a very good weekend. It's been about 2.5 weeks since Carol's last surgeries, and she seems to be healing well, although a bit tired. I think I mentioned that on Carol's left arm, that during the surgery that had found that the bone was abit infected. So she had iv antibiotics which was supposed to be in place for 6 weeks post op. We changed out the antibiotics at home every couple days. Last week, she woke up I think on Tuesday with a rash all over. She had a bit of an allergic reaction to the antibiotic iv med. So she was switched to a different oral medication. She actually was happy to see the iv stuff go.

The actual incision sites appear to be healing well. Sutures are still in and will be removed next week I believe. Carol is starting to feel working out again at the house.

We had a really nice weekend, finally the sun showed up!!

Scott

3/23/2009

2009-03-24T20:09:00.001-07:00

Carol came home from the hospital yesterday in the evening. We are adjusting to what now feels like a definite "1 step back". We are doing pretty well, all in all. Carol thanks everyone for all the well wishes!!

Scott

3/22/2009

2009-03-22T20:50:00.000-07:00

First chance that I have a computer connection since the surgery to post. Surgery went very well. It was 3 hours on Thursday morning...from 7:45am to 10:45 am. She spent the remainder of the day in post op recovery. She didn't get into a room until about 5pm. Her post pain was pretty extreme. Many iv pain med's were used and none seemed to keep things calm. They eventually with our consent decided to give her an epidural to numb her lower half, where most of the pain was coming from. This worked for awhile. Enough to finally get her stable enough to move to her room. As far as what the surgery entailed....her left arm had bone protruding again and needed to be revised...shortened by about 1/2 inch and leave padding of tissue on the end was the plan and outcome. The bone protrusion was infected as we had much suspected, and she now will be on iv antibiotics for a couple weeks because of it. Her left leg had bone spurs approximating each other on both her fibia and tibia. We were asked before the surgery, if deemed appropriate, a procedure called "bone bridging" be performed with our permission. What they do is form a bone bridge or help a bridge of bone form between the two bones. Normally our fibia and tibia join at the knee and ankle. In Carol's case they don't at the bottom. If there is enough flex in the bones, they can touch each other when you walk, and this can be painful when walking with prosthetics. The down side is usually some loss of length of leg, which to Carol, and I am assuming other amputees, every bit of length you have is very important to you. So we were against it, if it meant shortening the leg was needed. They found a way to use the bone spurs to bridge the two bones together with the help of some steel pins. They also found that her major nerve in the leg was getting pinned between the fibia and tibia when the two bones squeezed together. The nerve was cut and placed higher up in some muscle. The same nerve thing was done in the arm.

Each day since the surgery it seems the pain is lessening, whether Carol realizes it or not. I think she will be home tomorrow or Wednesday at the latest...we will see. Thanks for all the help this weekend family and friends.

Scott

3/18/09

2009-03-18T20:28:00.000-07:00

Well...to my mothers prodding I need to update everyone:) Work, and life has been really busy. Carol has been making lots of strides with her rehab. Her walking is unbelievable. She has been walking up stairs walking around the house by herself and really pushing herself in everyway she can. Last weekend was our 11 year anniversary, and we found some time to go out to dinner and leave the girls with some family. Safiya is officially mobile, so baby proofing has been stepped up at the house. Chloe was very cautious about everything and still is. Safiya isn't afraid of anything and will stick anything in her mouth, etc.

After a very busy week at work, we are off to Seattle for surgery tomorrow. Well Carol is having surgery, we are just there for support. We have it all arranged with care for the girl and house and everything. Carol will have her left arm and left leg revised tomorrow. She is supposed to be coming home on Monday. So every wish her well if you get the chance. She is nervous, but ready to get this thing done. It's def time. The limbs have really been bothering her, but she has been pushing through it. She will have a cast on her leg, and rehab without walls have adjusted her wheelchair to accomodate that. So rehab therapies are on a bit of hold for a few weeks. ok I need to pack. feel free to call Carol or stop by harborview if you want to visit!!

Scott

3/9/09

2009-03-09T20:05:00.000-07:00

Hello all. Life continues to be very busy.. The girls are doing very well. Chloe is def 2. Carol and I thought our daughter must be having some serious issues with all that has happened this year and is acting out. She insists on putting on her own shoes, clothes, and doing everything else herself. She is going through a bit if a hitting phase...she hit's/taps her little sister at times when she is not getting enough attention. We decided to look at the internet and find out what was wrong with our child, only to find she is a normal 2 year old. Safiya, is just about crawling officially. I guess unofficially she is...whatever that means. I guess it means she has done it, but can't do it, at will, all the time..officially:)

Carol keeps stepping it up a notch. She went up and down 23 stairs today at her physical therapist in Maple Valley. I must plug these guys at Outpatient Physical Therapy. The donate several hours per week to Carol...very cool. We appear to be all set for her upcoming surgery (on the 19th). She will be having a revision on her left arm, and her right leg. She seems to be getting a little nervous, rightfully so. She will at the hospital at the minimum over the weekend. She has to be able to transfer from chair to bathroom, to bed, etc. in order to not be put back into rehab at Harborview. Carol says she will be transferring by Saturday.

Thanks for all the support, and thanks to all the families making us dinners. It is greatly appreciated!!

Scott and Carol

2/25/09

2009-02-25T20:31:00.000-08:00

Well Carol has really been rockn the last week or two. She has really been trying to step it up in her recovery. My guess is that she knows she is going to be laid up for a few weeks, so she is really pushing herself. Her balance on her legs and doing things has really gotten better, and her pain has seemed to decrease due to some new med's....Carol went to costco with Heath today after PT in covington. She was stopped by three different people that explained that she didn't know them but they knew of her and follow her story....crazy.

Thanks for all the dinners the last few weeks. I don't know who is doing it per se, but thanks. It makes things so much easier on me, I can't even tell you.

Thanks for the card Jacqui......we think of you often and plan to stop by sometime soon to visit you all at Swedish:)

Scott

2/21/2009

2009-02-21T11:43:00.000-08:00

For those that don't know, Carol was on the news again on komo a couple nights ago. Here is the link...nuff said.

http://www.komonews.com/news/local/39897067.html

thanks for everything...scott

2/9/2009

2009-02-09T09:57:00.000-08:00

Well what has been happening lately. As far as Carol....she has been remaining very busy during the week with rehab. She put on her makeup by herself for the first time last week, and even though she is blind, it looked much better than I can do. How do you get mascera (sp?) so close to the eye with out touching and smearing that crap, impossible to get perfect the first time for me...anyway. We've been trying to venture out doing things like going out to eat and stuff like that. On the weekends she get's pretty tired and has been slepping almost all day on Saturday for the past few weeks. When she wakes up from sleeping her eyes have been doing some wierd things, I think I have talked about it a little already. Her pupils have been contricting momentarily when she opens her eyes, and she says she has been seeing wierd things. Yesterday was a bit of a crazy day for us. When she opened her eyes in the afternoon, her pupils were staying constricted for quite awhile. When this happens she says she get's an instant headache, makes it so she can't move really. Just overall wierd symptoms. Anyway, she is seeing her neuroopthomologis tomorrow for the first time in months, maybe he can shed some light.

Carol is scheduled for surgery on her legs, and arm mid-march. She will be in casts for 4-6 weeks after that. I think I have posted what all that is about already. We plan to focus on more of her blindness rehab for that time. Setting up the house a little better for her. Things like having part of the fridge just for her, so everything there remains the same. That theme of things staying the same if very important for her. She gets very frustrated when I move something and don't put back in the same spot. Also, we plan to work on the ocmputer stuff more. She has had two trainings on in so far. It will be slow going with it. Carol says she feels like a baby trying to learn how to use a computer. It's completely different language and is going to take some time.

Yesterday morning, before the crazy part of our day happened we had Willow's Photography (http://www.willowsphotography.com/blog/)come over and do family photos since we havne't been able to do any formal ones. I will try and attach a couple here. Safiya is doing great. She said dad the first time back in January but it was hard to tell if she knew what she was really saying. Over the weekend it has become apparent she really knows I am dada, that is the only thing she can say. Chloe is pretty much great all the time still, but a hand full now. She wants to do everythings herself, and whatever is the opposite of I want her to do. Her most famous lines right now are "I do it", and "no, I don't like it". She also seems to be having some seperation anxiety issues again. I thought we were over that awhile ago..maybe not:)

1/24/09

2009-01-24T11:48:00.000-08:00

Nice to hear from you Samantha in Oregon....although duck shirts are not allowed in this house:). Carol will be in touch at some point, and was touched by your letter. Interesting story from Brazil. It shows how lucky we have been through all this. I remeber how worried the doctors were about internal bleeding issues and permanent brain and organ issues from it, and we had none, and her kidneys miraculously started working again. Anywho how bout some pictures from the last couple weeks...

1/20/09

2009-01-20T15:39:00.001-08:00

Just wanted to send some additional thanks out to some people while I have a quick second.

Everyone at the Sanders Christmas party who donated to Carol's healthcare fund...thanks!!!!

Jennie Hulbert, and Mandy Rawlings....big thank you.

And the people who got pictures taken by Willow photography in Tacoma...thanks!!! Your pictures all looked very cool.

Just wanted you all to know we really appreciate all the ongoing efforts people are making for us. It's been hard for me to get a second to say thank you lately, and just wanted you to know":)

scott, carol, chloe, and safiya

1/17/09

2009-01-17T14:27:00.001-08:00

Well I have been getting alot people asking about what's going on due to my lack of posting...apologies.. Been a rough couple week with her future surgery, and Safiya has been getting up every couple hours at night...so sleep for me has been at a minimum...especially this week. The inlaws are here giving me a break right ...which is great.

Carol is doing fairly well. She hasn't set the next surgery date for sure...but it will probably be in February. Plans have been made to keep her busy rehabbing after while she is healing with blind issues. Organizing things in the house, and putting certain sticky thing on everything to make them identifiable. Many other things on those lines. I have been busy on trying to find a house for us to live in/buy. WE rent now, and longterm no house at least here will be turn key for us. I think we can make anything work, but a specific bath and kitchen remodel would be nice wherever we end up.

No real health changes for Carol. Her finger from the burn is almost healed. She is still getting up on her legs although painful.
She has been having some visual changes. Her pupils aren't really dilated like they used to be for some reason. You know when you see a blind person, there pupils are always very dilated, as was Carol's. There are times she thinks she is seeing shadows, blues, and bright light. Who knows.

Safiya has started eating rice cereal and other stuff. She is getting much taller lately. She said dada for the first time on the 15th ( a couple days ago). More later.

1/6/2008

2009-01-06T19:45:00.001-08:00

Well a little bit of a rough couple days for Carol. She got her xrays back from Harborview yesterday on her legs, hand, and arm.

Her right leg has 2 bone spurs which explain alot of the pain she has been having while trying to walk. Each are about a half inch long. The are between her fibia and tibia...one on each of them. Her left arm also has exposed bone again and needs to be corrected. All this means another leg surgery, and another arm surgery, and about 6 weeks of not using them at all. They are talking about doing another in hospital rehab after that. She will need to be refitted for all the prosthetics again after the recovery time. Something she needed soon anyway. She is pretty disheartened by all of it, but I think we both knew it was coming. The arm surgery will shorten it another 1/2 to 3/4 inch. The leg surgery shouldn't change the length. So another 1 step forward and a couple back.....the timing of all this is to be determined. On a brighter note, she finally got her computer today. It talks to her, and she can talk to it. She has a bunch of training on it over the future.

night
scott

1/3/2009

2009-01-03T19:47:00.000-08:00

Well a very god weekend this far. Lot's of work today and yesterday for me at the office. And Carol was busy in Seattle yesterday getting a procedure called and emg. More poking and prodding to determine how well her nerves are working down in her right hand. We had Chloe's official bday party today. Was a blast...thanks to everyone who came. Again these are the types of things Carol normally handled in it's entirety. I just take direction from Carol on what she want to have done, at least for now.

Healthwise for Carol:
1. her burn on her finger is healing up very well
2. harborview looked at her left arm from the last surgery, and they are going to send her back to have it closed again.

3. vision....no real changes there really. Carol as strangle as it sounds thinks she is seeing some things from time-time. Most of the thigs she thinks she is seeing sounds very hallucinations. If I haven't said it before, this can be normal after losing sight. She did however say saw Chloe's shadow when putting her to bed. Another really weird happened today. She woke from a nap in complete brightness. Normally everything is black. It really freaked her out.

I'll post pic's of the party soon. As always thank you thank you thank you a million thank you's for all the support you have all shown to us. Without all of your help, thoughts, prayers, I know we wouldn't be where are right now, getting better.

Thanks
scott

12/31/2008

2008-12-31T20:42:00.000-08:00

Carol & Safiya hanging out on Christmas

Chloe taking calls on her Iphone:)

12/31/2008

2008-12-31T08:36:00.000-08:00

Well, long time no post. Life has been a little crazy over the holidays. You would think I would have had more time to write, not less, but that han't been the case.

Today is Chloe's 2nd birthday....she keeps getting fireworks on her birthday!!

So what's going on with Carol and the family the last couple weeks. Carol's left arm after her revision, hasn't quite healed up all the way, and I want her to have the hand surgeon at Swedish to take a look again. Part of the suture line reopened, and even with the aid of butterfly bandages and other special dressings, it hasn't seemed to close all the way yet. It was hurting her for a bit, so I got her on some antbiotics just in case. A couple weeks ago, Carol burnt her right middle finger. Totally my fault. I made her a hot pockets, and apparently the center of it was way to hot, although it was still edible. In any case, we hadn't noticed the burn on the finger (she can't feel it) until she began walking later in the day, and she noticed her hand felt wet. She got a blister from her finger nail, down to the first knuckle. Like a 2nd -3rd degree burn/blister. Luckily we are experts on this sort of thing now, and it is healing as well as can be expected. We got her a proclined excercise bike and a super fancy computer for xmas. With the computer she can talk to it, it can talk to her. We have not yet begun to get into all of it's capabilities. Her spirits throughout the break have been up and down. The week of xmas itself we went up to a cabin near crystal mountain with the girls, Heath, and Carol's mom. It was a hard week for everyone. Shawn's birthday was supposed to be on xmas day, and this was the first year without him. So overall that whole trip to the mountain, didn't quite feel like xmas for all of us. I think we have all agreed to do something more conventional for us next year. Visually, Carol has been having alot of "hallucinations" lately. Doing a bit of research and from what the neuro opthomologist told me at Swedish so many months ago, this can be common. I think it is called Charles Bennet syndrome or something. Gotta get to work.. i will try and post some pictures of the last couple weeks tongiht!!

Scott

12/16/2008

2008-12-16T16:46:00.000-08:00

Just want to send a big thanks to the members of the Pierce County Dental Society. Thanks so much for all your genorosity. I am trying to find the right words to say but can't seem to find anything but....thank you!

Scott

12/14/2008

2008-12-14T19:40:00.000-08:00

Thanks for all the advice we have gotten on managing Carol's pain. Keep it coming. So what has happened in the last week or so. Carol got her teeth cleaned. Something she always enjoys. She has been able to make it out and complete her Christmas shopping in a couple trips. Her prosthesis(s) seem to be fitting much better, and she has been getting around much better again. Most of her family was here over the weekend, and it's always nice for her to have them all around. Chloe is getting super excited for the holiday it seems. The tree, decorations, and now snow are bringing it all together for her. There are lots of cool things anonymous people have been doing for us the past couple weeks. If you read this, thank. Back to Carol. Her hair, seems to have stopped falling out, and is growing back...I think. Her left arm from the previous surgery, looked to be almost healed, but a very small area of the incision from the surgery, has not quite healed as I think maybe it should have, and I think she needs to have it looked at again. Her right hip is all but healed up. No changed visually. Her skin seems to be smoothing from her grafts pretty well, and pain around those areas seems to be diminishing a little. Hopefully she will have a bump up in energy for walking and the such soon. Spirit wise she is doing ok. This time of year is tough not being able to see, for her. Plus her brother who passed away, his birthday was on xmas day. Up's and down's as expected.

12/5/2008

2008-12-05T21:08:00.000-08:00

Another good progressing week has come and gone. Carol is looking forward to a relaxing weekend. She had a couple visits up in Seattle this week. One with the doctors at the burn unit at Harborview to discuss her pain around her grafted areas. Basically this is normal, as the new skin and new nerves are regenerating in those areas. It is supposed to pass in a couple months. We are working on other remedies for her phantom pain. We had our office Christmas party up in Seattle last night. After a conversation Carol had with someone, it made me think of something I haven't maybe talked about. When I say phantom nerve pain, what I mean is that at times her feet hurt. She really feels like her amputated limbs hurt at times. This is especially bad in her or what was left hand. Apparently your nerves often feel the way they were before they were amputated. Her left hand was necrosing so badly before the amputation it was curling into a tight fist. She often feels her hand is in a super tight ball and she can't expand it. Super wierd. Anyway, interesting topic. Her other visit was today with her prosthetist. She got things tightened up on her lower prosthesis(s). She is really starting to walk great, in small amounts. She is starting to really let go of the walker and use just a cane more and more. I will post picutres when I can. Again, thanks for all the meals and support. It is much appreciated!!!

Scott

11/30/2008

2008-11-30T20:35:00.000-08:00

Snapshots of the long weekend. It felt great to spend a few full days with the family. Carol is soar from all her rehab. We got the tree up and decorated. Thanksgiving was great....lots of food. We are still working on the leftovers. Thanks to all the inlaws for a great holiday, and to the members of my family who were there as well. We made a trip to Target to get Christmas decorations. Challenging little trip, but we made it. Chloe continues to be a little of a challenge with Carol. Since Carol can't do alot as far her needs right now, we are working on ways that she can. It's tough...it seems as if Chloe see's mom as competition for my attention. We may be wrong, but that seems to be what is going on. She is great around Carol when I am not around...in any case we are working on that. Safiya remains stellar. Just the happiest kid eva!!! Thanks everyone!!

Scott

11/27/2008

2008-11-27T07:10:00.001-08:00

Happy Thanksgiving everyone. Thanks for all the support this year...we have a lot to be thankful for!!!

Scott and Carol

11/24/2008

2008-11-24T20:03:00.000-08:00

Well got the main tasks done for the night and thought I would post an update. Carol is progressing pretty well still. She got refit with her prosthetics and seems much more comfortable on the legs. She walked outside for the first time last week with the walker. The therapists are trying to step up to just a can soon. She still fights immense pan daily. She takes meds for that every few hours still. She has phantom pain, which is semi controlled with medication. I think that med is probably where the hair loss comes from (Lyrica). But she def prefers no phantom pain to hair loss. If that tells you how extreme it is. We had a great weekend. Got to go out to dinner..thanks mom and dad for babysitting for a bit. Her left arm seems to be healing well. The doctors at Harborview are thinking of doing another surgery on her right arm to relieve some scar tissue and tendon tightening, if I understand it right. We are psyched for bird day. Love Thanksgiving!!

Scott

2008-11-20T22:10:00.000-08:00

couple new, and one old...just felt like posting it. All is going well. Carol had a busy day of seeing doctors again in Seattle. Her brother and father took her up as I worked. A follow up from her arm surgery on Monday, a visit at the burn unit to check on her wounds and back healing, and a visit with her prosthesist. Her arm looks good, and apparently since I know how too, I get to remove the sutures instead of her going back to Seattle:). Her back is looking great....the borders of the donor sites look much like her normal skin, and is healing from the outside in. For all intensive purposes it is healing well. No open wounds or anything. Her right hip..which is the only large area they didn't graft is almost closed. Originally the wound was about 10 -12 inches long and about 2 inches wide at the biggest but closed to almost a v shape. Over the months they have allowed it to heal on it's own, as the graft didn't take there. We have had to change the dressing on it daily this entire time. It look great only 2 small 1 inch or so long by 1 cm wide scabs remain. It looks so good...you almost wish they would have let all her wounds heal this way...but infection undoubtedly would have occurred. She spent awhile at the prosthesist and things were tuned up a bit. She is not ready for a new socket yet, just a new liner inside of them. She thinks they feel much better. We were given the be patient talk from the prosthesist, and that in time, better, smaller, cooler, sockets will be there for her, but that she is changing so much right now, that putting a lot on money into something that may only last a couple months isn't worth it. Debatable, as long as she can keep progressing...it's ok.

scott

11/17/2008

2008-11-17T15:51:00.001-08:00

Surgery went well, very fast and no complications!!!

Scott

11/16/2008

2008-11-16T21:42:00.000-08:00

Well I haven't been able to post for some time...apologies. Carol has been remaining busy at home with in house rehab, although her progress walking has seemed to slow, mostly we feel to her prosthetics not fitting as well as they did originally. Her legs have shrunk quite a bit, as expected. They are supposed to do that. Hopefully she will have some new sockets for them made very soon. She is essentially walking in and out of the sockets, which is pretty painful for her over time while walking. Hope that makes some sense. Her hot flashes have stopped, but hairloss hasn't unfortunately. She has surgery tomorrow at Swedish for a revision on her left arm. She has some bone protruding abit. Something that has been there since early at Harborview, and I thought was bone, but Harborview kept saying it was just a scab. She the hand surgeon who did her amputation, late last week take a look, because I really was feeling it was bone, and sure enough it is. It should be a simple outpatient procedure....well as simple as something like that can be. Carol's family continues to help out quite a bit at home, which is nice. Chloe and Safiya are doing well. Thanks for all the support everyone. Carol wanted to make sure I said thank you to you all.

Scott

Another Fundraiser to post about...thanks Tammie:)

2008-11-12T10:04:00.000-08:00

TASTEFULLY SIMPLE FUNDRAISER

34% of your purchase will benefit the Alison’s “Count your Blessings” Fundraiser
In aid of Carol Decker and family

FUNDRAISING DEADLINE: Monday, November 24, 2008
-----------------------------------------------------------------------------------------------------------------
***WE SHIP DIRECT TO EACH PERSON WHO PLACES AN ORDER***

*All orders submitted by the deadline are guaranteed to arrive by the Christmas Holiday*

THREE WAYS TO PLACE ORDERS:

1) ONLINE:
● Orders can be placed directly online following these simple steps:

1. Go to: TastefullySimple.com/web/tgilley

2. Select products desired and then click on "Proceed to Checkout."

3. To associate the order to the fundraiser click on "Find Host/Event.” Please enter the following:
First Name: Alison
Last Name: Webster

Then hit the search button. Once you see Alison Webster on the screen, proceed
with your order and it will count towards the fundraiser. Please contact Tammie Gilley,
Tastefully Simple Consultant at 509-946-4578 if you have any questions.

*IMPORTANT: Step 3 (associating the order) must be completed or the order
WILL NOT count for the fundraiser!

2) PAPER ORDER FORM:
· Make sure ALL information (Name, address, phone, email) on the order form is complete, accurate and printed clearly. If any portion is illegible, it may delay the processing of the order.
· Total due = Sub Total + Shipping ($0 - $49.99 = $6.99, $50 or more = 10%) + tax (if applicable)
· Taxable items include any non-food items (books, gift sets, etc). Tax is 8.3% in WA, otherwise there is no tax on the food itself. Checks can be made payable to: Tammie Gilley

3) Contact the Tastefully Simple Consultant:
● If for any reason you cannot or prefer not to place your order online, you may contact the Tastefully Simple Consultant, Tammie Holm at 509-946-4578 or TammieHolm@verizon.net Please be sure to mention that the order is to benefit the Alison Webster Fundraiser. These orders can be paid by either check or credit card. Please contact Tammie Gilley for further details at 509-946-4578 or TammieHolm@verizon.net

BONUS! $10 will be donated for each home or online party booked and held through this
fundraiser. Contact Tammie Gilley to pick a date or for more info.

Fundraising Contact: Alison Webster ~ 509-627-0316

Tammie Gilley, Tastefully Simple Independent Consultant
509-946-4578 ~ TammieHolm@verizon.net ~ tastefullysimple.com/web/tgilley

more pictures from the weekend

2008-11-10T21:17:00.001-08:00

2008-11-10T21:08:00.000-08:00

Pictures from the weekend

11.8.08

2008-11-08T16:19:00.000-08:00

Well we are having a great weekend. Got Carol up on her feet and walking a couple times today. We are settling in nicely. It's so nice that we don't have the looming trip back to the hospital this week. I will try and post pictures this week!!

Scott

11-5-2008

2008-11-05T09:23:00.000-08:00

So today is the big coming home day for Carol. I will post on how that goes. She is abit nervous about it, but more excited than anything. She is nervous that she won't keep progressing in her recovery. We have in house rehab continuing for the forseeable future. Making goals I think is the key...at least for us it usually is.

A few people keep asking about her vision. She just knew I didn't put enough makeup on, she can't see. Her optic nerves, which are nerves that come right out of your brain to your eyes have degenerated. Her visual cortex in her brain is fine, and her eyes are fine. Having your optic nerves degenerate is much like a spinal cord injury in that the body doesn't allow them to regenerate, unlike the nerves elsewhere in your body like her right hand. Her right hand is gradually getting more feeling back in it and more motion becuase the periphal nerves regrow. Science and medicine is working on regrowing optic nerves and all other cranial nerves for that matter. But it is pretty complicated. In any case, the moral of the story is that, it would pretty much take a miracle for her vision to "come back". That is, without medical intervention. Much research is being done in this aread right now, both with stem cell, and other chemical means. Hopefully in her lifetime...other things are being worked on like retinal chips and things of that nature. Hope that clears things up.

Scott

11-2-2008

2008-11-02T23:39:00.000-08:00

Carol got out of the hospital for the weekend on Saturday morning. I was able to spend both Thursday and Friday night up there with her. We are both really excited for her to come home this Wednesday, and for the formal hospitalizations to be over. Hopefully for a long long time. Carol is able to walk 300- 400 feet on her prosthetics with the help of of a walker, and shorter distances on her own. She is getting what she calls a better "ryhthm" as she walks, and less like John Wayne. Not sure what exactly that means, but I a impressed after seeing her walk. She was pretty tired for the day up there on Friday after a pretty physical Thursday. She is getting pretty proficient at transferring from her wheelchair to almost everything you can think of, if space allows. The walking thing is going to take some time to perfect and not hurt as much as it does, although she improves daily. Being able to transfer from a wheelchair is a needed in the mean time, and for the future as well. With the right set and right foods she can eat 99% on her own. With the right set up she can shower/groom herself about 70-85% herself. I have learned the makeup part, although she wants to do it herself eventually. She is def not shy about telling me I didn't put on enough blush or what have you. Things are progressing well with her and the girls as well. She can get on the floor..slowly, and play with them. She fed Safiya 2 bottles over the weekend from start to finish, and burped her. That will only get better I think. Chloe and her relationship seems to be getting back to normal. Which is great.....her relationship change with Chloe has been I think the hardest part of all of this for Carol. Carol is a much better parent than I will ever be, and it's great having her back around the house. Chloe doesn't act out as much, and all in all, the childcare I think is much improved when she is here:).

thanks for all the meals.....and everything.

scott

10-28-2008

2008-10-29T22:21:00.001-07:00

Carol's week is going well, although she is very much wanting next Wednesday to be here ASAP. Our nanny Erin has taken the girls to see Carol every Monday and Wednesday the last 2 or 3 weeks, which is great. It really seems to keep Carol going. Carol got to try out a mono-ski and have some training on that set up for her sometime this winter at one of the local hills (with the help of a trainer and navigator). She is pretty excited about learning a new way to get down the mountain. Her legs have really shrunk this week, which is a good thing. Not that they were big, but just means her recovery/swelling is moving along. She appears to be having some endocrine issues. Like I was talking about back at Swedish. They are looking into some pituitary or adrenal insufficiency issues. She is having some temperature regulation issues, and others I don't wish to go into. So an endocrinologist is looking into some test this week as well.
She is keeping up with her goals. I think we are both excited to get this hospital bit behind us for awhile, and move on while her legs and arms are still atrophying, to adjusting more fully to a life back at home, and further learning of how to do all the things she used to.

I guess it's Halloween this weekend. I need to go get some candy, and somehow figure out how to get Chloe into her bumble bee outfit:). Thanks again everyone for all of your continued support. We very much appreciate it. Cool article on the Today show about arm transplants to the woman who had the same thing happen to Carol. I don't think Carol is healthy enough for anything like that now, but who know what the future holds. Hopefully those transplant will become everyday occurences in the future.

All the best
Scott

10.26.2008

2008-10-26T17:54:00.000-07:00

Thanks Lori Stafford for all your efforts in the Marathon. She raised a considerable amount of money for Carol. Thanks!! Got your letter:)

Weekend has been great. Chloe officially has 4 new baby teeth coming in, a little challenging with her sleeping because of that. It is amazing the difference in independence with Carol in just a week. She can slide from her wheel chair to various places with alot of ease. She pretty much showered and fed herself. Very nice!!!

10.21.08

2008-10-21T21:02:00.000-07:00

Carol is doing pretty well this week. Yesterday she walked about 165 feet/steps on her new training feet. She got a blister on her leg so, they kept her off of them today, and worked on things like playing with the girls on the ground, and feeding herself, and feeding the baby. Tomorrow will be another team meeting in the afternoon. As I expected, there is some talk of having her stay another week. Carol and I both have mixed feelings about that, but both thought this was coming, as many of her goals have not quite been met, and it starting to fee (to us)l as if she will need to rush to get things learned. I think this shows in how tired she was lat week, and over the weekend.

Her med's are changing a bit, due to some side effect we want to stop. Hair loss has been an ominous concern, but I think I have figured the offender and had them stop giving it to her. They are also checking her blood for thyroid issues. Overall her spirits seem much better this week.

I can't remember if I wrote about it, but Carol goes to an amputee meeting with other amputees on Tuesdays. One of the other people in her group made a stuffed animal bear for Chloe that has removable feet and left arm. Chloe has been playing with that alot when I get home, and seems to have been very instructive over the weekend. She would try and take the foot and put it on Carol. She get's it....Safiya just loves spending time with her. They took a few hour nap together on Sunday.....They slept so long I had to wake them up.

Her permanent wheel chair will get ordered and fitted this Thursday. Her initial left arm will be delivered tomorrow.

Anyway, thanks again everyone

scott

10162008

2008-10-16T20:34:00.001-07:00

10.16.2008

2008-10-16T20:21:00.000-07:00

So I am going to put a few thankyou's on this thing over the next couple days like I started last night.

Another person who helped out organizing the fundraiser in Enumclaw, and I don't know her that well at all but has helped us out big time is someone named Tina Rosenthal. Thanks so much Tina, Carol,I, and my family are forever in your debt. Thanks

scott

10.16.2008

2008-10-16T19:25:00.001-07:00

Another fundraiser by a friend....already posted about in the fundraiser links. Pretty cool idea for holiday pictures.

Tacoma Professional Photographer plans fund raiser for Carol Decker’s medical bills.

Willow Eskridge, professional photographer from Tacoma plans a fund-raising portrait event for Carol Decker. Carol lost both her legs below the knee, one arm, and her eyesight after the caesarian section for her second baby a few months ago. Due to severe complications from hypertension due to septic pneumonia, arteries to both her legs, one arm and her eyes blocked her circulation that forced the amputations.

Now the Deckers are faced with medical expenses over the 2 million dollar mark. The entire community is coming together to help support them in this tragic time. Please see the video from KOMO news, it is an amazing story.

http://www.komonews.com/home/video/28703094.html?video=pop&t=a

Willow is planning this event for:

Date: Saturday November 1st, 2008
Studio Address: 2413 East C Street, Tacoma WA 98421
Sessions are by appointment

Special packages will be available with 100% of the proceeds going to the Decker family. Please come out and have your holiday portraits done by renowned photographer Willow Eskridge and help support a family in need. Call for your appointment today.

Willow Eskridge
Owner Willow’s Photography

Willow@WillowsPhotography.com
www.WillowsPhotography.com
1.888.229.9652
--------- end ---------

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Help CentralAccountFeedback

2008-10-16T12:52:00.001-07:00

10.16.2008

2008-10-16T12:52:00.000-07:00

8 steps today!! Edit that now to 75 steps plus the 8...
She wasn't supposed to do this today. She was with her walker, and she decided she just wanted to check and see if she could balance by herself, so her PT let her:).

10-15-2008

2008-10-15T21:28:00.000-07:00

Well not much new to post. Carol has a weekly meeting with her whole team, I was able to be in on that again via a phone conference. Carol is doing very well, even though she doesn't feel she is and is frustrated. I have said it before, but it is like my two year old trying to figure out how to do things. She gets very frustrated just like Carol that she can't do everything she wants to do, and that it takes time and trying many times to get something down and figure something out. Hopefully I will be able to see Carol tomorrow. I haven't seen her since Sunday, although we talk many times everyday. Looking forward to a mellow weekend with no big plans.

In my quest to thank everyone who has helped us......I really want to give a big thanks to someone who has really helped us out in many ways. Denice Baxter organized the fundraiser here in Enumclaw and has done so much for us....I don't know what to say for all of your generosity. Thank you so so so so so so so so so so so much. I don't even know what to say, I don't know why you have done all you have done, but thank you.

scott

10.13.2008

2008-10-13T20:55:00.000-07:00

Hello all. Carol had a very tiresome day. After a few days off, they really worked her. Talking to her tonight on the phone I could hear the exhaustion in her voice. She has one her good friends from highschool staying with her the first couple days this week. Thank Erica.

She got her first new feet today. They made them an inch shorter than her normal height....which Carol wasn't too happy about, but it's a temporary thing. Something about it being easier to learn how to walk etc. They shot her down on being 5 foot 7 also. Just her normal 5 foot 3 eventually:) She did great on them. She walked a few feet right off the bat. In her words, she felt like she was 6 feet tall. The right leg was very comfortable, the left no as comfortable. I think was expected, her scar on her left leg is not quite in the ideal spot, but this we new since her amputations, and revisions. It was the only way to do it, with the available good skin on her leg for closure. Her other comments on the day were on the lines of how am I ever going to be able to put these things on. I reminded her that a week ago she was saying how is she going to ever hold Safiya, and she is doing that with ease now.

10.11.2008

2008-10-12T21:29:00.000-07:00

A stressfull weekend for sure, but one that worked out well. Nice to get the whole family together, but traveling was bit of a challenge at times. Even with alot of help. Shawn's funeral service was probably the most moving and best funeral service I have been to, not that I have been to that many. In a way it almost seemed all the events over the weekend were partially for Carol as well. It was the first time going home since all this happened to her, and the first time seeing many of her extended family and old time friends. Many of Shawn's friends are/were good friends of Carol's aswell. There was a dinner after the funeral. Carol was the last one getting done eating due to the many many people coming to say hello to her. They literally were cleaning the place up as she was finishing eating.

No snow, and the rv thing was no problem. Drove like a big moving truck, which Carol and I have alot of experience with. I got Carol back to Harborview around 7:30 tonight. She is ready to get things going, but not to happy to be back at the hospital. She should be getting her initial feet prosthetics early this week, so that is exciting. There are alot of goals in this rehab that still need to be met in order to meet her lofty goal of getting out on the 29th of this month. She is nervous about that, but ready to go.

Chloe and Safiya did really well over the weekend. Safiya slept almost the whole way home. We put on Finding Nemo in the RV and Chloe, was pretty much all set for the ride home. Heath drove the last half of the way, so I was able to take care of them.

We got the voice quilt in the mail, when I got home. Carol and I listened to that on the 1 hour drive up to the city. Very nice to hear all of your voices....Carol loved it. Thanks so much for putting that together for her. Carol really misses all of her Boston friends, as do I. It definitely made her day, and made the ride up to the city easy.

So heres to another week of daily improvements!!

Scott

10-8-2008

2008-10-08T22:35:00.000-07:00

Phew....what a week. Finally settling down for some dinner. Got the girls down. We are going to the tricities tomorrow in a rv...thanks Jay and Beth for providing that. Should be an interesting trip. Carol always took care of getting Chloe all packed for trips. Lot's of stuff to remember I never had to think about. But I think we are all set....

Carol has had another busy week of rehab, although I haven't gotten all the details. I haven't seen her since Sunday night. I have had the girls every night this week, and work has been crazy busy. Both good things, but it will be good to get the family together for a few days. They are letting Carol stay out until Sunday, which puts her a little behind, but the trip to the tricities is unfortunately a necessary one. I am counting on an emotional couple days. I hope it doesn't snow in the pass. I hate driving in the snow...another thing Carol used to take care of.

Again, thanks to all making food for us, it's unbelievable to not have to worry about that big detail.
Not sure if I mentioned it last week, but the prosthetist took cast impressions of her residual limbs (stumps) at the end of last week. The plan was to get her on her first new feet by weekend this week. This will be postponed until next week. They will be heavy and uncomfortable they are telling us. Most amputees we have talked to, say this is common, and that they will intitially be uncomfortable until her stumps really get set into their final shape. This may take up to 18 months. But in the end they should be light and feel very comfortable. Kind of reminds me making a denture.

Her right hand continues to get better, and Carol is learning to do things with it, with the help of different gripping tools. I think it will never have full function again, but I am hopeful. She actually uses her left arm more than her right for getting herself up, and stabilization. I think besides her vision her right arm is the most frustrating to her. The comment from her is "if I could only get my @#$% right hand to work". Mostly in a humerous way, but there is alot of truth to the way she says it also. She continues to have seperate hand therapy on a different floor at Harborview. Her vision remains the same, no changes. Another neuro-opthomology appointment is coming next week I think. They will continue those regularly througout her life. They/we want to make sure her actualy eyes stay in good condition. She can't really tell if she get's her eye scratched or any other trauma occurs. The thinking there is that when the technology arrives to fix her optic nerves, her eyes won't be a problem, because of some other unrelated event she doesn't even realize is or has happened.

What else has happened this week. I got her wedding ring and other rings fixed and put on a necklace. Thanks to Tom Poe for doing all that....it looks excellent. Not sure if I ever mentioned this. I thought she had been at the hospital for awhile, but after reading her chart is was on the third day at Swedish. Her body had swelled so much from fluids...to over 200 lbs, and we had finally stablized her BP sort of and temp, we finally had a moment to think of other things. We realized her rings were stuck on her fingers. The fingers were so swollen we couldn't get them off. Circulation was an obvious concern. They had to be cut off. I think this is why she lost her right ring finger. Sort of neglectful on the hospital maybe, but being there the whole time......that was the last thing anyone was thinking of those first couple days. Anyway they look great...Carol will be excited to have them back.

Chloe and Carol's relationship is seeming to really be getting back on track. Those first couple weeks having Carol home, I think Chloe was a little confused and upset. She is right back to wanting to be with mom all the time. She even talked to her on the phone for awhile before putting her to bed tonight. I really have it pretty easy at home with the two of them. Chloe has slept from 8-8 since she was 3 months old. Safiya sleeps from 8:30 to 4 or 5am usually...and has for quite some time.

Over the last couple weeks, we have had several offers from different companies and people to pay/provide for Carol's prosthetics. Thank so much. I have just started getting back to some of you, and will get back to the rest of you by the end of the week. It has been really busy during the day at work, and hard for me to make the calls then. Words can't describe the gratitude. I have no idea how I am ever going to repay all this good karma people have been sending us. People continue to donate money, food, time, and prayers and thoughts.....Carol really wanted me to make sure and thank all of you.

night
scott

10.6.2008

2008-10-06T14:40:00.000-07:00

We had a great weekend despite all the emotional rollercoasters. Good time at home with the girls, and a great time last night. We went out to dinner and saw a show at the theatre where the seattle symphony play. I think we were both a little nervous going out, but we had a great time. Both the resteraunt, and the theatre were very accomodating.

scott

10-3-2008

2008-10-03T11:10:00.000-07:00

With Carol's permission I will post abit about Shawn. Some of you may know Carol's brother Shawn passed away yesterday afternoon. I won't go into details, but just wanted to post a bit about the funeral stuff for family and friends.

This is all in the tricities. Viewing on Thursday from 4-7pm at Hillcrest Memorial Center (957 West Clearwater Avenue.) The funeral will be the following day at 11 am at the Church by Carol's mom's house. Not sure of the address at the moment.

Thanks
scott

10-2-2008

2008-10-02T09:12:00.000-07:00

I would post really quick. I am at a dental course for most of the weekend. Carol will busy all day working except at these hours and will be available to talk at those times. Been getting alot of requests.

11:30-1 lunchtime
2:30-on

She has her cell and a bluetooth headset, which may or may not be on.

Her room telephone number is 206-744-3028.

Someone needs to be in her room to help her get both of those going (if the headset is not on). Virtually a family member is with her 24/7 so hopefully we can get back to most of you over the weekend.

scott

10/1/2008

2008-10-01T21:43:00.000-07:00

Half way through week 1 in rehab. The rehab is going great, Carol's attitude is excellent, and her sense of humor it great aswell. A couple things different than we expected prosthesis wise but overall great. The staff is great, the facility is great. The goal from 6-8 weeks of rehab has been shrunk to 4 weeks. Major goals are getting on feet, daily tasks like showering, brushing, that kind of thing. Many other goals to many to list, but basically getting back to doing most things as before. She showered herself by herself today, brushed her own teeth today, got out of bed into a wheel chair today. So things are going well, she is very motivated.

She will get to come on the weekends which is cool. We are going out to a concert at Benaroya hall this sunday. Should be good to get out. Thanks for all the meals this week everyone. The tupperware and dish situation is getting out of control....I need a labelmaker or something to keep it all straight:)

night
scott