Wednesday, October 29, 2008

10-28-2008

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

Sunday, October 26, 2008

10.26.2008




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!!!

Tuesday, October 21, 2008

10.21.08

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

Thursday, October 16, 2008

10162008

10.16.2008

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

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
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10.16.2008




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:).

Wednesday, October 15, 2008

10-15-2008









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

Monday, October 13, 2008

10.13.2008

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.

Sunday, October 12, 2008

10.11.2008

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

Wednesday, October 8, 2008

10-8-2008




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

Monday, October 6, 2008

10.6.2008

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

Friday, October 3, 2008

10-3-2008

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

Thursday, October 2, 2008

10-2-2008

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

Wednesday, October 1, 2008

10/1/2008

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