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


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 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.