Sunday, September 22, 2013

9/22/13 Update

Sorry it's been so long since my last update, but all is well with Alison and I. She's continuing to make slow, but steady progress in her recovery. She's still attending the Rehab Institute of Kansas City three days a week and really enjoying it. That will continue for a couple more months at least. The latest development is that she's beginning to get some movement back in her right foot. : ) Her right side has had very limited movement, so some new activity over there is promising! And she has some new splints for her hands/wrists that are really aggressive, but hold promise for getting her hands opened back up better - they stay pretty tight and clinched otherwise. On the computer front, she's still working in the lab at figuring out the best way to access a computer. I know I've said this before, but it's getting closer. She really wants to be doing these updates herself, and I bet she will be before long. And with the new Mac iOS 7 update, iPhones and iPads now have a Switch Control accessibility feature that could allow her to access one of those devices pretty easily - so that's really exciting! We've got our assistive tech folks looking into that now. : ) Alison's health has been pretty good too. She's had some minor eye irritations and she's on an eye drop now, but it's not a huge deal. But what is a big deal is that tomorrow morning we go into KUMED for a heart procedure. After her stroke last year, they found that she has two small holes in her heart that allowed the clots to get through to her brain. They've always said we'd probably need to have them closed at some point, but it's not urgent. But she's stable enough so we're going to go ahead and go for it. It's not open heart surgery, but it's not an outpatient procedure either. They'll go in through the femoral artery and run a catheter all the way to her heart where they'll deploy a device that will affix to both sides of the wall of her heart and eventually the tissue will envelop the device and it will become a permanent part of her body. Closing these holes will leave no chance of another clot getting through, and she won't have to be on an aggressive blood thinner medication any longer either. But the doctor has ensured us that it's a very low risk surgery and that he's 99.9% confident that it will go as planned. We'll stay overnight Monday in the hospital and should come home Tuesday morning. So that's what we're up to! I'll be sure to post again when all is clear. Otherwise, we're doing well. We went out shopping for some fall clothes this morning and found some good stuff. And this Friday we're going to see one of our favorite bands, Phoenix, at Buzz Beach Ball down at Berkley Riverfront Park, so that should be fun. : ) But we would appreciate your thoughts and prayerstomorrow morning. Thanks. (Side note: I just read this through for Alison to proof, and she caught me using good instead of well. Hmphf.)

Sunday, June 30, 2013

Grab a tissue...

Here's the video that Be Extraordinary put together for us. It's pretty great...

http://vimeo.com/m/67701030

6/30/13 Update

It's been a while since I've given an update on Alison. She's doing well, as am I. She's been doing full days of therapy twice a week at the Rehab Institute of KC, and that's been good. We really like the speech therapist, but everyone's been great. It seems like she's showing progress, but sometimes it's hard to tell. I felt some new movement in her right leg this morning, and her right hand continues to show subtle signs of life too. She's even trying to vocalize more often and work on controlled breathing and mouthing words more too. And she did a nice job of helping me roll her on her side, and back, this morning too - another thing they've been working on in therapy. She's also been spending some time in the assistive tech lab - two full hours last Thursday! I've not been able to see it first hand, but I heard she's been painting (using her foot through the computer) and also trying to surf the web rather than spelling when they ask her too. : ) I'm looking forward to seeing all of it tomorrow when I'll go with her. There is another thing we're pretty excited about as well. We've been talking with the Chief Medical Officer at the International Brain Research Foundation (www.ibrfinc.org) in New Jersey to see if they might be able to help Alison. They're a cutting edge organization of the top minds in the world who are committed to finding cures and better treatments for brain injuries and diseases. They're main claim to fame is that they've successfully woken up like 50 of 70 patients who were comatose. They are creative, innovative, outside the box thinkers who have grown tired of waiting for the rest of the medical field to make progress in this critical area. They've worked directly with the National Institutes of Health and the Department of Defense to help wounded veterans returning from war with serious brain injuries. It's really quite impressive. They're approach is aggressive, but fairly low risk. The brain is electrochemical. So they use external electrical stimulation and an aggressive cocktail of medicines, supplements and herbs to address the chemical side and essentially jump start the brain. We feel it could offer us the best chance at accelerated progress, versus staying on the current track that is very slow, and could come to a halt at any point. The catch is this: it's really expensive, and not covered by insurance. If it's something we chose to pursue, we'll have to do a massive fundraising effort and give it all we have. But we're still contemplating the decision, and should know in the next couple of weeks. Otherwise, all is well for us. We don't really have any plans for the 4th, but I'm off work so we'll be hanging out. Thanks for all of your continued support. 

Thursday, June 13, 2013

6/13/13 Update

Alison's first day at RIKC went really well. Everyone was very nice and it is definitely worth the work to get there. She had all three therapies, and we're especially excited about speech therapy. The therapist is really nice and has some creative ideas to help Alison get her voice going again. Overall it was a good, long day. She was tired afterward, but not as much as I was expecting. Thanks for all of the well wishes, prayers and continued support. 

Wednesday, June 12, 2013

6/12/13 Update

Well it's been a while since our last update. But Alison and I are doing well. We've just been doing our thing - keeping UTIs at bay, working on therapy as much as possible, watching movies, having toe nails removed, seeing cardiologists, getting Botox, slanging stroke awareness via orange popsicles. You know, the usual stuff. She's continuing to make slow, but steady progress. Her most recent development is that she's now able to bend her left arm at the elbow a bit. : ) That's a pretty huge movement. It's still pretty early, but we're hoping it continues to strengthen. But tomorrow we begin the day therapy program at the Rehab Institute of KC. It's a full day of all therapies. It's going to be exhausting for Alison, as she's not had formal therapy for quite some time - much less all day long. I'll be there with her tomorrow, as well as our friend Amy. We have 20 days on our insurance, so I'd guess we'll spread them out and do two days a week or something. But it should be good, and we're looking forward to it. Thanks for your continued prayers and support. 

Tuesday, April 16, 2013

4/16/13 - Be Extraordinary Blog Post

The guys at Be Extraordinary, the company helping Alison get reconnected to the world through specialized technology, wrote an extremely kind blog about us today. Thought you all might like to read it. : )

http://www.be-x.org/blog/a-special-relationship/

Saturday, April 6, 2013

4/6/13 Update

Here's a pretty profound statement from Alison after driving around the city and seeing a lot of our old favorites. "I get sad when I think about all we lost, then I think about all we stand to gain." Pretty inspiring. We meet with our rehab doctor on Wednesday to formulate a new therapy plan for the balance of the year. Good timing and good motivation. But all's well. Thanks for the continued support.

Saturday, March 30, 2013

3/30/13 Update

It's been a while since I've given an update. This morning Alison, her brother, his wife and I loaded up in the van and headed over to Columbia to hang out with some of their family. It was a long, tiring day, but so very worth it. They're great folks and it was good to see them. Tomorrow we're going to get up early and head to church. : ) Otherwise, things are good. We're just plugging along. Thanks for all of your continued support, and Happy Easter!

Wednesday, March 20, 2013

3/20/13 Update

It's been a while since my last update so here's a quick one. All is well with Alison and I. We're wrapping up our home health therapy phase and will begin with our self implemented and conducted therapy plan next week. We'll meet with our rehab doc in a few weeks to make a bigger therapy plan that will likely involve regular visits to the Rehab Institute of KC. Alison, her caregiver friend, Josie, and I all went out clothes shopping last night. That was fun (expensive!) and long overdue. ; ) But all's well. Thanks for everyone's continued support.

Wednesday, March 13, 2013

3/13/13 Update

Invotek, the assistive technology company, was back to see Alison today. They brought a few different prototypes that will ultimately help Alison use a computer to more efficiently communicate and reconnect with the world. It was pretty exciting actually. The most promising of the setups is a wireless gyroscopic mouse that fits like a donut over her left foot. When she moves her foot, it moves a cursor on a computer screen and when it gets where she wants, she lifts her thumb to activate a switch to select, or click. It was awesome to see her in front of a PC desktop and navigate to the lower left corner, upon request, and click the start button. From there she opened a couple different things and was even able to get to the red X in the upper right corner of a window to close it. We were both pretty thrilled. There's still a lot of finessing to do though. They took the foot pieces back with them, but left the computer and hand switch. We'll keep working with the spelling software on the computer in the meantime. But it went really well today. They also brought a videographer to film the session. If you've been to their website, you know how powerful the videos are in helping show what they do. We're happy to be part of their story. Thanks for the continued support.

Monday, March 11, 2013

3/11/13 - One Year Post Stroke

Today was a big day for us. Today was one year exactly from Alison's stroke. It was late Sunday evening, March 11, 2012, when it happened. It's been a bittersweet day. It's hard thinking about all we've lost, so we tried thinking about what we have. We're both most grateful to still have each other. After all that's happened, she's still my wife and I'm still her husband. She's still the girl I fell in love with nine years ago. We're still best friends. And there's still not much better than spending a lazy evening in front of the TV together. Things are certainly different, but we're going to keep plugging away - together. Another thing we're grateful for is all of you - our friends and family. I can't imagine living the past year without the support you've provided. Thank you all for everything. Going forward, we're going to keep doing what we're doing. We'll continue to seek as much therapy and work as hard as we can to make progress. Just yesterday we noticed new movement in her right ankle. : ) But as I've said before, this is a marathon, not a sprint. We continue to have a long road ahead of us. All of this said, I'm no longer going to post daily updates to Facebook and our blog. Our days have become somewhat routine, so they're not quite as informative as they once were. But I will be updating regularly - just not every day necessarily. With that, I'll close. Thanks again for all of your continued support. And here's to another year of working hard and making progress.

Sunday, March 10, 2013

3/10/13 Update

Alison and I have had a pretty good day together. We slept in a bit to compensate for the time change. Then we watched SNL from last night before Alison fell back asleep for a bit. After lunch, Alison's brother and his wife stopped in for a nice visit. Then it was nap time again for Alison (she likes her naps) while I ran a couple of errands. This evening I hung some wall art - per her direction (long overdue), while she watched a movie with her caregiver friend. Her cough is much improved from last night thankfully, and all is well. Thanks for your continued support.

Saturday, March 9, 2013

3/9/13 Update

Well Alison and I have an alright day. We took it easy this morning before having a National Orange Popsicle Week board meeting with our friends, Amy and Jonny, this afternoon. It was a good meeting. We're working on some pretty exciting things for mid-May - all to raise awareness of stroke in young people. More to come later. Other than that, we've just been hanging out. This evening, Alison's been coughing quite a bit. We're both hoping it doesn't keep her from sleeping tonight. Thanks for your continued support.

Friday, March 8, 2013

3/8/13 Update

So it sounds like Alison's had an alright day today. She had a few therapy sessions this afternoon before getting a shower. And this evening we've just been taking it easy and watching Rango. It's been a pretty uneventful day, but that's definitely okay. Thanks for your continued support.

Thursday, March 7, 2013

3/7/13 Update

Well Alison's had a really good day today. She was able to rest quite a bit this morning before having speech and physical therapy this afternoon. After I got off work, I stopped by to pick up her wedding ring so she's all blinged out again. : ) It fits much better after being resized. This evening we hosted our small group from church at our apartment. It was really nice seeing everyone. Alison had a perma-grin on her face for a while after they left. And today she finished the IV antibiotics for the UTI. They'll come for a follow-up UA tomorrow to see where we stand. But all's well this evening. Thanks for the continued support.

Wednesday, March 6, 2013

3/6/13 Update

So Alison's had a pretty good day today. She didn't have any therapy, but nursing came to change out her catheter (standard procedure). That can be a traumatic experience, but it went smoothly this time. This afternoon she had a shower and tonight we've just been taking it easy. Tomorrow evening we're looking forward to having some friends from church come over, so that should be good. But all's well this evening. Thanks for your continued support.

Tuesday, March 5, 2013

3/5/13 Update

Well Alison seems to have had an alright day today. She had a really good PT/OT session from what I hear. And her friend, Amy, stopped by for a visit to catch her up on the latest issue of People magazine. This evening I had to run a couple errands while she hung out with the caregiver. A little while ago Alison got pretty sad about things. That happens from time to time and is completely normal and to be expected. All things considered, I'm still in awe of what a great attitude she has most of the time. But that's hard work too - keeping a smile on your face when your heart is hurting. I'm not sure our new reality is something we'll ever really get used to - it's more something you just learn to deal with as best you can. Thanks for your continued support.

Monday, March 4, 2013

3/4/13 Update

Well Alison's had a pretty good day today. The morning was pretty uneventful from what I hear. Then this afternoon she got a shower before I came home from work. This evening we watched some SNL. And while I paid some bills and balanced our budget, she and our caregiver watched a few I Love Lucy episodes. This afternoon we heard from the guys at Invotek, or the non- profit division, Be Extraordinary. They let us know they are progressing with the prototypes that will hopefully help Alison get reconnected with the world. They're finalizing some software changes and waiting for tablet computer to arrive, but they're about ready to come back down for testing. They put our story up on their website, and they're currently trying to raise funds to cover their expenses. Check it out, and if you can help at all, that would be incredible. As always, thank you so much for your continued support. http://www.be-x.org/donate-now/people-who-need-funding/alison/

Sunday, March 3, 2013

3/3/13 Update

Well Alison and I have had a good day today. We took it easy this morning before a caregiver came by at 3pm. Then we loaded up in the van and went to the jewelry store. Alison hasn't been able to comfortably wear her wedding ring for nearly a year, so we got her finger measured and left her ring for resizing. It'll be nice having that back in the picture. Afterwards we came back to the apartment where I baked a chocolate snack cake. Alison used to make it and I'd been craving it for a while. It was good, but not quite what it used to be. Alison did taste the batter and approved of the flavor though. Otherwise, it's been a quiet evening. Thanks for your continued support.

Saturday, March 2, 2013

3/2/13 Update

So Alison and I have had a good day together. Our Saturday caregiver didn't show this morning, and I'm still not sure why... I'm thinking we'll be looking for some new Saturday help from now on though. But it wasn't that big of a deal. I didn't have any big plans, so I was happy to pick up the slack. And we had a good time together as always. Late this afternoon we joined her brother and his wife at the theater to watch Silver Lining Playbook. We all agreed it was really good. I'd highly recommend it if you haven't seen it already. This evening we just took it easy and watched some Big Bang Theory. But all is well. Thanks for your continued support.

Friday, March 1, 2013

3/1/13 Update

Alison's had a pretty good day today. She slept in a bit this morning, then had some physical therapy from our friend, Amy, this afternoon. After that she got a shower before her cousin and her family stopped in for a visit. It was their first time seeing Alison since her stroke, although they've wanted to come much sooner. It was a very nice visit and it was good seeing them. After their visit, and dinner afterwards, there wasn't time for much more this evening. But all's well and we're off to bed. Thanks for your continued support.

Thursday, February 28, 2013

2/28/13 Update

So Alison's had an alright day today. She had all three therapies, so that kept her busy for a bit. I was here for speech over lunch, and she had a bit of a frosty. Then we worked on vocalizing a bit - which we really need to get back into doing more often. I wasn't around for PT or OT, but Alison told me the OT, whom she hasn't seen for a month (we've been seeing the assistant), told her she's progressed since last time. That's always good to hear. And tonight I had to run some errands, but then we watched the finale of Top Chef. So not a bad day overall. Thanks for your continued support.

Wednesday, February 27, 2013

2/27/13 Update

Today's been a pretty good day for Alison. Nothing too exciting, but it's been good. She got a shower this afternoon, and this evening she hung out with a caregiver friend while I went to a Male Book Club (haha) with some guys from church. It was a fun time. This evening all is well and it's off to bed. Thanks for your continued support.

Tuesday, February 26, 2013

2/26/13 Update

Alison and I have had another good snow day together. I gave her my first solo shower this morning, and that went well. And I also successfully gave her the IV antibiotics today too. It wasn't too bad really. Otherwise, we took a nap this afternoon and lounged around watching TV tonight. Nothing too exciting, and all is well. Thanks for your continued support.

Monday, February 25, 2013

2/25/13 Update

Well Alison's had an alright day today. Our appointment at the hospital for a picc line and the first round of IV antibiotics went well. We were even able to make it home before the snow got bad. But I'm sure tomorrow's going to be nasty. If it's as bad as they say it's going to be, no one's going anywhere - including the home health nurse that is supposed to come administer the IV meds tomorrow. If they can't make it, the plan is to walk me through it over the phone. So we'll see how that goes. But all's well this evening. Thanks for the continued support.

Sunday, February 24, 2013

2/24/13 Update

So Alison and I have had an alright day. We took it easy this morning and lounged around watching TV. Then I managed to finally get my car unstuck from the snow. And because of the next snowstorm on the way, therapy wanted to see Alison today in case the roads get too bad again this week. So we had a PT/OT co-treat session where we got Alison up into the stander for 20 minutes. She did really well. While she was up she did some really good work with her eye, head and neck control. After that I had dinner with a friend and ran some errands. This evening we just took it easy. Tomorrow at 1pm we're to go to the hospital for the picc line and the first round of UTI antibiotics. Hopefully we're back home before the weather gets too bad. Thanks for your continued support.

Saturday, February 23, 2013

2/23/13 Update

So it sounds like Alison had a pretty good day today. I left mid morning to go snowboarding with my brother in law and his brother in law at Snow Creek in Weston. We had a lot of fun and no one got hurt! Alison spent the day with one of her caregivers and it sounds like it went well. This evening Alison and I have just hung out and watched TV while catching up on the day. Tomorrow we'll be on our own until 3, but that's by choice. With all this caregiver help, sometimes it's nice to have some time with just the two of us. Tonight before bed she told me to set the DVR to record SNL. We'll watch it tomorrow morning just like we used to do. It sure is nice having her home. Thanks for your continued support.

Friday, February 22, 2013

2/22/13 Update

Today's been a pretty good day for Alison and I. I worked from home since our caregiver couldn't make it, and it turns out my car is stuck pretty good anyway. Oh well. The van is now accessible and the snow will melt eventually, right? We took it easy this morning before physical therapy showed up about 2pm. Right around that time the doctor's office called to tell us Alison's UA results came in and they want to start her on an IV antibiotic. But she'll need to go to the hospital for a picc line and the first round of medicine to make sure everything goes well. We thought we might go today, but it'll be Monday instead. It'll just be a short stay thing and we should be back home after a few hours. She's not symptomatic of a bad UTI, but we don't want it to get that way. Hopefully she can ride out the weekend with no issues. This evening a caregiver came by and we gave Alison a shower. It went well and she's resting comfortably now. I'm excited to go snowboarding at Snow Creek tomorrow with my brother in law. It's been quite a while but it should be a good time. Let's just hope no one gets hurt... Thanks for your continued support.

Thursday, February 21, 2013

2/21/13 Update

Well it's been an interesting snow day for Alison and I. We had a caregiver come last night and stay over since we knew it'd be bad today. This morning when I got up around 6:30, it didn't look too bad out. But as I was leaving for work, the snow had picked up considerably. The drive in was okay - kinda fun even. But after a couple hours, the few of us there knew we needed to leave soon before we couldn't later. So I drove home at 10am, and it was terrible. I don't live very far, and I consider myself to be a pretty good driver in snow, but it was bad. I barely made it home. I ended up not being able to get back into our parking lot and had to park on the street behind our building. It could have been a lot worse though. I saw many commuters much worse off than I was. Needless to say, we haven't left since. And our caregiver for tomorrow already said she's not going to risk it in the morning, so I'll be staying home again tomorrow with Alison. Our caregiver from today finally got a ride home from her boyfriend around 7. Her poor car is buried. But it's been an okay day for us though and we're headed to bed early. Thanks for your continued support.

Wednesday, February 20, 2013

2/20/13 Update

Well Alison's had a pretty good day today. She had a speech therapy session this morning where she had some chocolate pudding. And this afternoon she had a Botox appointment that went well. She received another round of injections in the areas that still need improved muscle spasticity (less tension). We'll see the doctor again in six weeks for a follow up and develop a plan from there. After that, Alison got a shower before settling down for the evening. She watched some I Love Lucy with her caregiver friend, Josie. And later we got caught up on Parks and Rec. We're as ready as we're going to be for the pending snow storm. We'll see how it goes. Be safe, everyone. And thanks for your continued support.

Tuesday, February 19, 2013

2/19/13 Update

It sounds like Alison's had a good day today. She didn't have any therapy, so it was pretty quiet around the apartment. But she's getting along well with her new caregivers so that's great. Things definitely feel like they're starting to settle down a bit - which is nice. For example, I went to the gym tonight for the first time in nearly a year. (Long overdue.) After that we watched the season finale of Downton Abbey. But all's well. Alison has another round of Botox injections tomorrow afternoon, so we're looking forward to that. Thanks for your continued support.

Monday, February 18, 2013

2/18/13 Update

Alison seems to have had a pretty good first full day with her new caregivers. She also had a big therapy session with both OT and PT at noon. And after that her friend came over for more PT, then she got a shower. So it was a pretty busy afternoon. Tonight we hung out with our other new caregiver then watched the latest episode of Revenge before getting ready for bed. But it's been a pretty good day. Thanks for your continued support.

Sunday, February 17, 2013

2/17/13 Update

I'm happy to report that we have two new caregivers who have committed to nearly 40 hours a week each! There's only one small gap for the coming week - including evenings! It's funny how we go from having hardly anyone committed to having almost more help than's needed. The lady I'd met with before, and was recommended by our payroll agency, came by this morning and met Alison. After working with her a bit, Alison told me she liked her and that we should offer her our weekday spot, so we did and she accepted. And we met with another new caregiver this evening who Alison likes a lot and has picked up most of our evening shifts. It seems like things are finally starting to come together! So it's been a pretty good day today. We didn't do too much other than get acquainted with some new folks and watch TV. It's so nice knowing we have a solid schedule of caregivers for the foreseeable future. Thanks so much for all of your support. Hopefully things will level out a bit going forward.

Saturday, February 16, 2013

2/16/13 Update

Well Alison and I have had a pretty good day. We had a caregiver with us most of the day, so that was helpful. The highlight was venturing out to Nebraska Furniture Mart so Alison could help me pick out a new computer. It went really well and we had a good time. Otherwise, we watched the latest episode of Downton Abbey tonight and are ready for bed. Tomorrow morning Alison will meet a prospective new caregiver. It's a lady who was recommended by the payroll agency we're using. She seems very capable of doing the job. Now we'll just have to see how they get along. And tomorrow afternoon another new caregiver is coming by for some training. Alison really likes this gal and we're hoping she might eventually be our full time weekday caregiver. But all's well this evening. Thanks for your continued support.

Friday, February 15, 2013

2/15/13 Update

Well I don't have any big news on the home front today. Still no full time weekday caregiver, but we have a couple options still in the works. By Sunday evening we'll know more. But Alison's had a pretty good day today. She had occupational therapy at 2pm, physical therapy at 3pm and a shower after that. It was a quiet morning and a busy afternoon. She told me PT worked her hard. I asked if it was too hard and she said no. Her dad spent most of the day with her before heading home this afternoon. We had caregivers from 2-10pm today, so that's been nice. Tonight we watched the latest episode of Revenge. Tomorrow we have a caregiver all day and plan on heading out to Nebraska Furniture Mart where Alison's going to help me pick out a new laptop. : ) That should be fun. But all's well this evening. Thanks for your continued support.

Thursday, February 14, 2013

2/14/13 Update

So today was an okay day for Alison and I. She was able to spend Valentine's Day with her dad, and that was nice. Her brother and his wife stopped by for a bit too. This evening we met with one of the weekday caregiver candidates. Unfortunately, Alison wasn't wild about her. We aren't ruling her out, but we're not ready to commit to her just yet either. It was pretty hard for me to take that news - as I felt she would work out pretty well. But Alison's the one who has to spend 40 hours a week with her, so her opinion is pretty important. One of the previous candidates is coming to meet Alison Sunday morning. It's possible she might be an option as well. So I'm not too distraught about it. But we'll see where we stand come Sunday evening. As for now, all is well. Thanks for your continued support.

Wednesday, February 13, 2013

2/13/13 Update

Well Alison's had a pretty restful day. There weren't any therapies scheduled, and the only real task was getting a shower this afternoon. We're lucky to have one stable caregiver that comes three times a week for a few hours. This week it's been especially great so Alison can get a shower. And this evening Alison's been in a pretty good mood. I met with a couple more prospective caregivers this evening. One seems to be well qualified for the work, and nice, but probably not a great fit for Alison - personality wise. But she's coming Sunday to get a feel for things. The other prospect seems perfect. She'd have to leave her current CNA job for us, but hopefully we can make it work for her. She's young, has good experience, comes highly recommended and has a great personality. She's coming by tomorrow to meet with us. : ) Well tomorrow morning my mom and nephew head back to Liberal. : ( It's been such a blessing to have them here - especially during this week. But tomorrow Alison's dad is coming to spend the day with her. All's well this evening. Thanks for the continued support.

Tuesday, February 12, 2013

2/12/13 Update

Thanks for all of your help getting the word out about our need for caregivers. Today we got a few good leads on some folks that will hopefully be able to help out. Tomorrow I'm meeting with a couple more, so it feels good to have options. Today Alison had all three therapies. She said it was a "disaster." We've not been overly impressed with them. And home health therapy is temporary anyway. We just need to get through this in order to move on to outpatient and day programs at the Rehab Institute of KC. But we're doing okay tonight. It's been a long day though. Thanks for your continued support.

Monday, February 11, 2013

2/11/13 Update

Well we hit another snag in our caregiver situation. The state and the payroll company for our workers had some paycheck processing delays. And they weren't certain when it would be resolved (but it hopefully will be by morning). So our main daytime caregiver heard she wasn't getting paid and wasn't sure when she would and decided she couldn't do that. I understand not wanting to work somewhere if you don't get paid. But we talked Sunday evening and I asked for one more day (today) to get it resolved before she made a decision. And this morning she was a no call, no show. So we're back to square one with no full time weekday caregiver. Thankfully my mom is still in town and was with her today. And she's staying an extra couple of days to allow me to continue working during the day while I frantically search for another caregiver. We're essentially out of options of people we know. So we're starting to branch out. I'm meeting with two people tomorrow who had postings on Craigslist for CNA work. And I sent out pleas for workers to a lot of the CNA program schools in the area. So we'll see what happens. That's really been the day. Alison wonders why no one wants to take care of her. : ( And I'll soon be out of time I can take off work. But tomorrow's a new day. Thanks for your continued support.

Sunday, February 10, 2013

2/10/13 Update

I'll keep it short tonight because I'm getting sleepy... We had a good day. My mom, nephew, Alison and I all went to the aquarium this morning. And Alison's brother, Jeff, joined us as well. It was a fun outing and pretty impressive. The rest of the day we just took it easy. We watched the Grammys tonight and that's about it. But all is well. Thanks for the continued support.

Saturday, February 9, 2013

2/9/13 Update

So Alison and I have had a pretty good day today. Our main caregiver was here most of the day, so that was nice. I got some stuff done around the apartment and ran some errands. Alison had occupational therapy this afternoon that went okay. We were planning on getting her up in her chair for it, but we ran into technical difficulties with the lift. I think I've got it figured out now though. And my mom and nephew arrived into town this afternoon too! It had been a while since we'd seen them, so it's been really nice. I gave my mom my old iPhone, so it's been fun seeing her experience all that it has to offer. Her life is now changed forever (not necessarily for the better). ; ) And my six year old nephew thought he should have a present too since I gave my mom something. Turns out I found my old Samsung Instinct touch screen smartphone under my car seat the other day. It's about 5 years old now and doesn't have service, but to him it's awesome! Alison and I watched an episode of the Big Bang Theory tonight with my mom, then we all started winding down. If Alison's feeling up to it, we're planning on going to the new aquarium in the morning. As for now, all's well. Thanks for your continued support.

Friday, February 8, 2013

2/8/13 Update

So Alison's had an alright day today. It started a little rough for me as our caregiver didn't show up this morning. It wasn't until about 2pm that she finally called. Apparently she had a bad allergic reaction to some meds and was really sick. She sounded terrible, but is apparently feeling better and will be here tomorrow morning. Alison wasn't effected much by it though. She slept until about 10am before I had to wake her for some food and meds. I waited as long as I could though. And I was able to get some good work done around the apartment during my unplanned time home. This afternoon was pretty busy though. We had two friends, a therapist, an orthotist, a case manager, a social worker and three deliveries to coordinate from about 2-5pm. Good times. Tonight we got caught up on Top Chef and just hung out. But all's well. Thanks for the continued support.

Thursday, February 7, 2013

2/7/13 Update

Alison's had a good but busy day today. Around lunch time the speech therapist showed up and did some food trials with her. She was considering doing a swallow study, but after seeing her handle some vanilla pudding pretty well she's a lot more comfortable proceeding without it. After that a second caregiver came by for the afternoon and they hung out until the occupational therapy assistant came by close to 5pm. She was a lot of fun and actually has some experience working with assistive technology, so that's a plus. By the time they finished, Alison had been up for about six hours - during prime napping time - and was pretty tired. We got her in bed and she rested a bit while I had dinner. After that she woke up and we watched the latest Downton Abbey. By then it was about bed time. But all is well. Thanks for your continued support.

Wednesday, February 6, 2013

2/6/13 Update

I suppose I'll go ahead and write my daily update. Alison has been zonked out since about 3:30 this afternoon with no signs of letting up! She got a shower this morning - which is actually a lot of work. And at noon, the engineers from Invotek http://www.invotek.org/ showed up to assess Alison's access abilities. These guys heard about us through a fantastic assistive tech doctor at Madonna in Lincoln. They are based out of Fort Smith, Arkansas, and specialize in helping people with disabilities figure out ways to access their world better. They were actually impressed by all that Alison could actually do. With her head, left hand and left foot movements, they have a few different ideas that should help her communicate more effectively with us. They've most recently helped a young man, who also suffered a severe brain stem stroke, begin communicating again and he was only able to look up and down. But they figured it out! They have a non-profit spinoff called Be Extraordinary http://www.be-x.org/ that helps provide funding for the expensive equipment often needed for situations like this. It's really pretty impressive and I encourage you to check them out if you get a chance. But they spent most of the afternoon with us and tested all kinds of options while brainstorming original ideas. It'll probably take a month or so to come back with some actual things to test, but we're off to a good start! This evening she's just been resting and I've been getting caught up housework. But all is well. Thanks for your continued support.

Tuesday, February 5, 2013

2/5/13 Update

So Alison's had an alright day today. She woke up in the night, and again this morning needing some meds for neck pain. It's not new, and not severe, but it usually isn't that bad. But her dad came up to visit today and that helped. : ) She also had her catheter replaced - which is never fun. This time was especially difficult. I wasn't there for it, but Alison described it as a "disaster." But it's working fine and we're moving on. Right after that she got into physical therapy. We really like the new PT. It's too bad our time with home health therapy is limited. But I think she'll do some good things and leave us with good directions and goals to work toward. And of course our friend Amy, the PT student, was there as well. This evening she got to rest and we watched some more Top Chef. All's well this evening. Time for bed. Thanks for your continued support.

Monday, February 4, 2013

2/4/13 Update

Alison's first day home with me back to work went well. We've had three caregivers throughout the day - one of which is staying overnight tonight. But everything's gone pretty smoothly. She got a shower this morning - which with only one person is quite a task, but they managed well. And she didn't have any other visitors or therapies so she stayed in bed otherwise. Tomorrow her dad is coming to visit, and she'll likely get a visit from the home health nurse and physical therapist. This evening we watched Top Chef and are almost caught up. But all is well. Thanks for your continued support.

Sunday, February 3, 2013

2/3/13 Update

Well Alison and I have had a pretty good day today. One of our caregivers was here from 8:30am-2pm to help out and we got a lot of good stuff done. Alison opted to stay in bed today since we didn't have anything official to do. This afternoon we lounged around, and this evening we watched the Super Bowl. Neither of us cared much about the game, but it was entertaining. Tomorrow I'll head back to work after being off for Alison's first week home. The week has ended much better than it started. We have caregivers coming from 7:30am-5pm so I should be able to put in a full day. But all's well tonight. Thanks for your continued support.

Saturday, February 2, 2013

2/2/13 Update

Alison and I had a pretty good day today. Our full time weekday caregiver stopped by this morning for some continued training. She did well and will be starting Monday morning from 8am-2pm so I can go to work. This afternoon our friends Jonny and Amy came by for a NOPW board meeting. We're planning some pretty exciting things for the future - all with the goal of "Raising Awareness of Stroke in Young People." Alison, the Director of Communications, came up with that tagline. : ) Stay tuned for more info there. Afterwards, Alison took a nap before we hung out watching Portlandia and The Big Bang Theory this evening. We're not planning on getting out for the Super Bowl tomorrow; we'll just watch it from home. We're not vested much in the game itself, but the commercials are usually entertaining so we'll be watching. Thanks for the continued support.

Friday, February 1, 2013

2/1/13 Update

Well Alison and I had a pretty good day today. It's still surreal that she's home, but we sure are loving it. We had some help this morning and they gave Alison her inaugural shower in her new lazy boy style shower chair. It worked out very well. After that I stopped by work where my incredible coworkers chipped in to get some premade meals for me and a bunch of gift cards. You guys are great - you know who you are. This afternoon the physical therapist and our friend Amy stopped by. The three of us managed to get Alison into our standing frame for the first time. We just got it back with all of the add ons we needed. It went okay, but her right foot wasn't in a good position so we didn't stay up long. But it wasn't bad for our first time at home. It'll surely come in very handy. Tonight it's just the two of us. We watched The Bourne Legacy and are now off to bed. But it's been a good day. Thanks for your continued support.

Thursday, January 31, 2013

1/31/13 Update

Good news! We have a CNA friend who has agreed to come work for us full time during the day! She needs to give notice to her current employer, but will start coming Monday morning and work from 8am-2pm until she's finished with her current job. Then she'll work for us during the day while I'm at work. : ) What a relief. I like my routines, so this week has been tough. We're not out of the woods yet, but this helps a lot. Thanks for everyone's help in getting the word out. Today was a busy day for us. We met with a new doctor, met the new speech and occupational therapists, the home health nurse stopped by, we had a couple deliveries of medical supplies and more. We had help from 8-2 today, then again from about 3-5. This evening we've been on our own but are doing well. Alison's resting soundly and I'm about to be. Thanks again for all of your continued support.

Wednesday, January 30, 2013

1/30/13 Update

Alison and I have had a pretty good day today. My first solo overnight and day went okay - no major catastrophes. But we're still very much in need of help. I've taken off the rest of the week, but by Monday we really need a full time worker to take care of Alison during the day so I can go back to work. We have a couple leads, but it's hard to know if they'll pan out. Today our friend, Amy, came by and stayed with her while I ran some errands. The Home Health physical therapist came by too. She was really nice. But apparently their role is to help train family and friends how to maintain what she has - not necessarily come on a regular basis to work with her. We're going to see what insurance would be willing to cover though. We're to meet with the other therapies - probably tomorrow. This evening, our friend, Kelsie, came by to help out. She and another gal will be here in the morning to help some more. We also have an appointment with a new primary care physician for Alison tomorrow. So we're staying plenty busy, but things are going okay. They did start her on another round of meds for the UTI that wasn't completely gone when they did the follow up UA. But she's feeling okay thus far. She's sleeping soundly now and I'm not far behind. Thanks for your continued support.

Tuesday, January 29, 2013

1/29/13 Update

Tonight marks my first solo mission taking care of Alison. We had help throughout the day, but couldn't find anyone overnight and don't have anyone lined up for tomorrow at this point. I'm not panicked quite yet. Overnights are usually pretty easy (usually). And tomorrow will be challenging, but I'm off work again and think I can manage. We had a pretty good day today though. Lots of good help, her brother and his wife visited, we had a doctor's appointment that went well and we met with the Home Health nurse for the first time. We're still missing a few pieces of medical equipment for the apartment, but they're due to arrive by the end of the week. We're meeting with the Home Health physical therapist tomorrow afternoon for the first time. Hopefully they're up to the challenge and will soon become integral parts of Alison's recovery. And we're still seeking a full time weekday (8am-4pm, M-F) nurse to come work for us. You don't technically have to be a nurse - all of the tasks are pretty simple. But nursing experience is preferred. Let me know if anyone has any leads. We have a couple, but are still trying to nail something down. But all's well this evening. Thanks for your continued support.

Monday, January 28, 2013

1/28/13 Update - Alison's Homecoming

Today started pretty rough, but ended pretty well. We learned this morning that our full time weekday nurse we'd been counting on being there for us when we got home was no longer able to help. What timing. I was pretty panicked for a bit as we'd based all of our plans around this person being the constant. We were planning on discharging first thing this morning but had to put it on hold since our plans were now wrecked. We spent the day making contact with anyone and everyone that might be able to help. By the end of the day, we don't have a solution nailed down, but we have a few good leads. And Alison convinced me we didn't need a nurse to be there, that we could do fine without one and we should just do it. With that in mind we were able to secure CNA help through the next couple of days and some med administration and feeding instruction as well, and we bit the bullet. We discharged home at 4:30 today with our friend, Amy, by our side and by 5pm a nurse and CNA were there to help us get settled and trained. This evening I gave Alison her food and meds for the first time. Right now, we're both resting peacefully, side by side, in separate beds, but in the same room in our apartment. We have a CNA available for overnight and into tomorrow. And Alison's feeling much better too - no fever or spasms all day. : ) So we're very much taking it day by day, and things are definitely much less orderly than I would prefer. But my wife is finally home and we couldn't be happier. Thanks for the confined support.

Sunday, January 27, 2013

1/27/13 Update

Alison and I had an alright day today. I spent most of it packing up her room, but this afternoon we got out for a bit and watched some Top Chef at the apartment. This evening I was planning on doing some final cleaning of the apartment before her arrival tomorrow. But when I went to see her after dinner she wasn't doing so well. We're not sure what it is, but she's pretty uncomfortable. Whenever she isn't feeling well, her whole body reacts with spasms. So she's been spasming off and on all night. In between spasms we ask what she thinks it is and she's not sure. It could be anxiety about tomorrow, but I'm afraid it's the UTI coming back. She's been off the antibiotics for a few days, but they have to wait 72 hours before they send off another UA to see if they got the infection. This has happened more than once before, and this would be the worst timing. So I'm staying with her tonight, and we're keeping a close eye on her temp and overall condition. Hopefully we don't end up in the hospital and it's not a UTI. We could use your prayers tonight.

Saturday, January 26, 2013

NOPW

National Orange Popsicle Week, what's this all about you ask? Let me tell you. NOPW was founded by our friends, Jonny and Amy Woodell, after Amy, only in her mid twenties, suffered a very serious stroke. She came extremely close to death multiple times in the days and weeks afterward, but made a miraculous full recovery after months of extensive therapy. That event was life-changing. Ever since, they've committed to help raise awareness of stroke - particularly in young people. This cause hits close to home for me. In March of 2012, my 31 year old healthy wife, Alison, had a devastating brainstem stroke. It's probably the worst kind of stroke there is. She's still alive, and cognitively aware and competent. But she's unable to speak and has very limited movement. At that age and point in our lives, a stroke was the furthest thing from our minds. We would have never guessed it would happen to us, but it's changed our lives forever. Had there been more awareness of stroke being a risk to young people, perhaps we would have identified it sooner and the damage could have been limited. Alison and I have joined Jonny and Amy in their noble cause. Over the course of the next few months, leading up to mid-May, we'll be working hard to get the word out about NOPW, and putting together some events to further the effort. Please join us by liking the National Orange Popsicle Week Facebook page, or going to www.nopw.org to learn more. Thanks in advance for the support, and I can't wait to share more about what we have in store.

1/26/13 Update

It's been a pretty good day for Alison and I. This morning I ran around getting some final supplies before Alison's homecoming on Monday. And after lunch we went to our friends, Jonny and Amy's, house to hang out for a bit and had a fun and productive time. More on that later. For our final slumber party movie night we watched Seeking a Friend for the End of the World with Steve Carrell and Keira Knightly. It's a romantic comedy and was pretty good actually. We both enjoyed it. I'm testing out a new air mattress tonight. The one from last night wasn't great, but this one is off to a much better start. : ) Thanks for your continued support.

Friday, January 25, 2013

1/25/13 Update

Well Alison's had an okay day today. She had her final therapy session with the gals here. That was good, but bittersweet. Everyone sure has taken a liking to her here. : ) This afternoon she didn't get to see our friends as we'd hoped we would. One of their kids was a little sick. And with Alison's UTI just passing, and with going home so close, we didn't want to risk catching anything. There's soooo much crud going around right now... Tonight we just hung out. We're having our first slumber party in about 2 months - so that's nice. I typically would just sleep in the roommate bed and move it over by Alison. But she told me tonight that, after observing all they do to clean up the beds after someone leaves, she didn't want them to have to do it again in a couple day after I slept in it. She's nicer than I am. I ran home and got the air mattress and it's working well thus far. But all is well tonight. Thanks for the continued support.

Thursday, January 24, 2013

1/24/13 Update

It sounds like Alison's had an alright day today. She got a couple therapy sessions in today and got a shower this evening. After that we just caught up on the day. We're looking forward to a visit from our friends, the Glenns, tomorrow afternoon. : ) And we continue to progress toward her coming home Monday. We learned they'll be throwing a going away party for us Monday morning just before we leave. : ) We've had our ups and downs with this facility - but anytime you're living in a place like that, in a situation like ours, for that long, it's bound to happen. Overall, I'm grateful for the care they've provided and for the great people we've met along the way. : ) But all's well this evening. Thanks for your continued support.

Wednesday, January 23, 2013

1/23/13 Update

Alison's had a good day today. She had a couple good therapy sessions - one with her friend, Amy, and Amy's mother-in-law, Dinah. This evening we just caught up on things before she cut me loose a little early to go to Target. Things are still progressing toward being home Monday. But that means not much time to get everything ready. I bought some organizational supplies so the apartment doesn't get too cluttered with stuff, and her bed and mattress were delivered today too. But all's well. Thanks for your continued support.

Tuesday, January 22, 2013

1/22/13 Update

Alison seems to have had a pretty good day today. Her fever has stayed away and she was able to get some therapy in. And her roommate went home today so we have all kinds of extra space and privacy like we'd had for so long. That'll be nice. But even better news is that we formally announced a go home date of Monday, January 28! That's what we were shooting for and it's finally going to happen! We'll get equipment and supplies delivered to the apartment this week and hit the ground running on Monday. There's still plenty to accomplish between now and then, but it'll all come together. Needless to say, we're very excited. It's been nearly 11 months she's been living in a hospital or rehab facility of one form or another. Coming home is long overdue. We're prepared with 24 hour care and home health to provide ongoing therapy. It'll surely provide new challenges, but the benefits should far exceed those. Thanks for your continued support.

Monday, January 21, 2013

1/21/13 Update

Alison is finally starting to feel better today. She got up for a bit this afternoon and had a good visit from her friend, Amy. This evening we caught up on the day and Alison helped me figure out a song that was stuck in my head. On my way to see her, a song came on the radio that we knew from playing Guitar Hero, but I didn't know the name or artist. So when I got there I was singing the tune to her (I didn't know any lyrics) and she recognized it eventually. I took a couple wrong guesses at what it was before she spelled out, "Google Guitar Hero please don't slow down." And sure enough, a YouTube video for Reptillia by The Strokes was the first thing that came up. She had remembered a line from the song and figured it out for us! She's so smart. I joke about "channeling my inner-Alison." That's a perfect example of how to do it. She's always been able to figure out almost anything if she has access to the Internet. That's part of why getting her reconnected to the world is a main priority once she comes home. She's getting a shower now and all is well. Thanks for your continued support.

Sunday, January 20, 2013

1/20/13 Update

So Alison and I have had an okay day today. It was pretty uneventful. She stayed in bed as she's still trying to fight off the UTI, but it's not getting worse. I spent some time this afternoon preparing some training materials for our caregivers once we come home. And this evening we shared some vanilla jello and watched The Transporter on TV. Great flick. Thanks for the continued support.

Saturday, January 19, 2013

1/19/13 Update

Alison's had another okay day today. She's still running a little bit of a fever and feeling kinda crummy, but it's not too bad. It certainly could be worse, but let's hope it doesn't get that way. Her brother and his wife stopped by this afternoon and hung out for a bit - that's always fun. This evening we watched Ice Age 3 and relaxed. Time for bed now. Thanks for your continued support.

Friday, January 18, 2013

1/18/13 Update

So Alison seems to have had a decent day. She's still running a low fever and feels a little crummy, but not too bad. She was still in pretty good spirits though. Her friend, Amy, stopped by for a visit this afternoon. And tonight she got a shower and we just caught up for the day. But all's well. Thanks for your continued support.

Thursday, January 17, 2013

1/17/13 Update

Thankfully Alison's day was better today than yesterday. No additional complications from the UTI - which makes for a better overall mood, understandably. We finished getting caught up on Downton Abbey tonight. But all's well this evening. Thanks for the continued support.

Wednesday, January 16, 2013

1/16/13 Update

It seems like Alison had an okay day, but a bit of a rough night. Despite not sleeping well last night, she was in a remarkably chipper mood this morning and over lunch. This afternoon they called to tell me they've started her on an antibiotic to treat a minor UTI. It's the first one she's had since they changed to the suprapubic catheter. And at this point, it's still pretty mild. She's had a low fever, but that's about it. Hopefully they can nip it in the bud. So that, paired with no sleep last night, and some other issues made for a rough evening. I just got home from seeing her and its usually closer to 10. So hopefully she rests well. Thanks for your continued support.

Tuesday, January 15, 2013

1/15/13 Update

Well Alison's had a better day today than yesterday. There weren't any more catheter issues and she had a good checkup with the podiatrist today. The toe that was of concern isn't infected like we thought it might have been. This evening we just caught up on the day before watching the latest episode of Revenge. But all is well. Thanks for the continued support.

Monday, January 14, 2013

1/14/13 Update

Well Alison's had a bit of a rough day today. She had some catheter issues last night and through today. That always puts a damper on things. She opted out of therapy as a result. She'll see a podiatrist tomorrow about some minor issues with her feet. But hopefully she'll rest well tonight and have a better day tomorrow. Thanks for your continued support.

Sunday, January 13, 2013

1/13/13 Update

So Alison and I have had a pretty good day today. We were fairly unproductive this morning and into the early afternoon. Then we got around and went to church this evening. It was great to be there and see some great friends and family. We had a lot of good laughs. : ) But all's well and it's off to bed. Thanks for your continued support.

Saturday, January 12, 2013

1/12/13 Update

Alison and I have had a pretty good day today. This morning we just lounged around before heading over to our apartment after lunch. I hadn't eaten yet, so I made a PBJ sandwich. I couldn't eat in front of Alison - that would be rude. So I mixed up some PBJ for her - minus the bread - and she thoroughly enjoyed it. I know it doesn't sound very exciting, but she was managing the bites really well - showing great oral control - all while having a huge smile on her face. It was pretty cool. We also got to hang out with our friend, Holli, and watch some Downton Abbey while we were there. This evening we watched Men in Black 3. I enjoyed it - Alison fell asleep. But all's well. We're hoping to make it to church tomorrow night, so that should be good. Thanks for your continued support.

Friday, January 11, 2013

1/11/13 Update

So Alison's had an okay day today. We had another good meeting with our case manager over lunch. We've set a tentative go home date for 1/28. : ) That should give us plenty of time to get things in place. And she had a couple good therapy sessions today and a nice visit from her friend, Amy. Tonight we just hung out. But all's well. Thanks for your continued support.

Thursday, January 10, 2013

1/10/13 Update

Well Alison's had a pretty good day today. She was surprised by a visit by his dad and stepmom this morning, so that was nice. : ) And we had another good meeting with our case manager over lunch. One step closer to home - with another meeting tomorrow too. Tonight we just caught up on the day and watched a few episodes of The Big Bang Theory (so funny). But all is well. Thanks for your continued support.

Wednesday, January 9, 2013

1/9/13 Update

It seems like Alison's had a pretty decent day today. Over lunch I was able to deliver our standing frame to the facility. The accessories for it should be delivered soon, and once installed, Alison can be fitted to it. Just in time for us to take it home for her to use there. : ) She had a couple good therapy sessions from what she told me. Otherwise we just spent the evening catching up and chatting. But all's well. Thanks for the continued support.

Tuesday, January 8, 2013

1/8/13 Update

Finally. We met with the new case manager today, and she said having Alison home by the end of January is a reality - and maybe even sooner. : ) Needless to say, we are excited about that confirmation. There are still a few things that need to happen, but we are finally on the home stretch - literally. It's been a long 10 months. Our journey won't end at home though. We'll still be receiving therapy regularly through Home Health, and we'll be doing some work at the Rehab Institute of KC as well. But having her home will be so nice - for both of us. So it's been a good day in light of that news. We're meeting again on Thursday and Friday to continue moving forward with things. Thanks for your continued support.

Monday, January 7, 2013

1/7/13 Update

Well it's been an alright day for Alison. Nothing too eventful happened. She had a couple good therapy sessions - including a visit from her friend, Amy. This evening we just caught up on the day and watched a little TV. Tomorrow at noon we meet with our new case manager for the first time to discuss plans for getting Alison home. We're hopeful that meeting is very productive and we leave with a clear vision of what remains to be done and a realistic timeframe for when she can come home. We are beyond ready. Thanks for your continued support.

Sunday, January 6, 2013

1/6/13 Update

Alison and I have had a pretty good day today. Late last night we finally got the catheter issue resolved. But we didn't have to go to the hospital and we were happy about that. It's been working fine ever since. Today we went over to our apartment and watched a couple episodes of Top Chef that we were behind on. Then we went back and watched the latest episode of Revenge. So it was an uneventful but good day. Thanks for your continued support.

Saturday, January 5, 2013

1/5/13 Update

Well Alison and I have had an alright day. She's been fighting catheter issues all last night and today. Tonight they changed it out completely in hopes that'll do trick. Let's pray she has a restful night and we find no more issues in the morning. Otherwise, our friends Johnny and Amy stopped by for a visit this afternoon. We're excited to be working with them on a project to raise awareness for stroke in young people. More on that to come. : ) And Alison's brother and sister-in-law stopped by for a nice visit today too. This evening we watched Trouble with the Curve. It was a pretty good movie. But all's well at the moment, and hopefully it stays that way. Thanks for your continued support.

Friday, January 4, 2013

1/4/13 Update

Today's been an alright day for Alison. She had a follow up Botox appointment this morning that went well. No injections this time though. And this afternoon, she got a visit from our friend, Amy, then her brother, Jeff, stopped by. This evening we've just been catching up. We're both looking forward to the weekend. But all's well. Thanks for your continued support.

Thursday, January 3, 2013

1/3/13 Update

So Alison's had an okay day today. We had a care plan meeting at lunch where we recapped plans for coming home. That was uneventful as we're just waiting to hear from the state. But this afternoon we actually made some progress on the home front. Now that the first of the year has come, we were able to get in touch with our new case manager. So they're supposed to get all of our info from our old case manager tomorrow, and we'll meet early next week to nail down the final details. It's good to finally be making progress. Thanks for your continued support.

Wednesday, January 2, 2013

1/2/13 Update

Alison and I have had a pretty good day today. She was in good spirits most of the day, and had a good therapy session where she was in the stander for 20 minutes again. That will be the last time using that loaner stander as they're picking it up tomorrow. The accessories for our stander will be here in about a week. At that point we'll get them installed and Alison refitted and we'll use it going forward. This evening we just hung out - as usual. But it's been a good day. Thanks for your continued support.

Tuesday, January 1, 2013

1/1/13 Update

Alison and I have had an okay day today. She got pretty emotional this afternoon though. That's to be expected from time to time. It's always hard, but it comes with the territory. Before that we had a good time working on the computer. The new thumb switch I rigged up worked pretty well. I was making modifications as we worked and eventually she typed "mad scientist." Lol. I don't necessarily think we'll begin using the computer daily for communicating, but we will probably use it more often so she can get lots of practice before going home. That's where I feel she'll really begin to use it - especially once we get it connected to the Internet. Now that the first of the year is here, we're hopeful our move home begins to take shape. There's been a big transition with Medicaid's case management system, so hopefully they hit the ground running and don't drag their feet getting up to speed. Our personal goal date is to be home by the end of January. We'll see... But thanks for your continued support.