Thanksgiving 2009

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

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

10/27/2009

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

10/21/2009

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

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

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

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

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:)

9/6/2009

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

Scott

9/6/2009

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

5/20/2009

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

5/19/2009

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

4/30/2009

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

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

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

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

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

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

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

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

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

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:)