Saturday, June 30, 2012
Alison and I have had a nice day together. It wasn't overly productive, but it was nice. This morning we played on her computer for a bit. And I've made some progress in figuring out a way to keep her foot in a more consistent place so she's able to hit the switch better. And we also did some leg exercises. She's really shown a lot of progress in being able to move her left leg pretty well. It's pretty impressive honestly. : ) Then some friends stopped by for a bit. Tonight we're having a slumber party. We're planning on watching a movie and just hanging out. It should be a fun time - our dog, Piper, is here with us too. : )
Friday, June 29, 2012
It sounds like Alison's had a pretty good day today. Over lunch, I found her pretty tuckered out from a morning of therapy, but she was doing good. I stopped by right after work and she was much more alert and responsive. I went to get the dog and grab a bite to eat and am back with her now. We've had a nice time together and I'm looking forward to our full day together tomorrow. Thanks for your continued support.
Thursday, June 28, 2012
Well Alison seems to have had a decent day today. She's not been sleeping very well overnight, so that can make for a not-so-great day. But considering, she's doing alright. When I stopped by over lunch, she was in physical therapy and was doing pretty good with working on keeping her balance while sitting on the edge of the mat and building core strength. The therapists are still getting used to her, and vice versa, but it's going well. Her dad will head home tomorrow, but it's been a nice visit. And I'm glad I'll be able to spend the weekend with her without leaving town. : ) Thanks for the continued support.
Wednesday, June 27, 2012
Not a lot to report today. It sounds like Alison had a pretty good day. She had quite a few visitors and seemed to really enjoy their company. Tonight we're just hanging out and taking it easy. Her dad is in town for the week, so it's nice to have someone with her throughout the day. Thanks for your continued support.
Tuesday, June 26, 2012
Alison's first full day at the new facility seems to have gone alright. They're still settling into routines and such, but I think it'll be just fine. The staff there is really nice and they seem committed to doing all they can to help her continue to recover while keeping her as comfortable and happy as possible. She was visited by her aunt Sally and cousin Jami today, so that was nice. And her dad will come up tomorrow morning to stay the rest of the week with her. She certainly enjoys being around friends and family. Now that she's close to home, let me know if any of you would like to stop by and hang out for a bit. Thanks again for the continued support.
Monday, June 25, 2012
Sunday, June 24, 2012
Saturday, June 23, 2012
Alison had another good day today. There wasn't any actual therapy, but we spent a good amount of time practicing on the computer. The positioning of the switches is so critical to her success, so it'll take some practicing on both our parts to master it. But she did really well with it again today. Tomorrow she has an occupational therapy session at 7am! That's the earliest session we've ever had, but we asked for as much extra as we could get before we left, so here it is. Since I technically got her into it, I'm going to be there early for it too. It's only fair, right? So hopefully she rests well tonight. My mom and nephew arrived this afternoon, so we've had a fun time. We watched a fun family/adventure movie featuring the Rock called Journey 2, and it was actually pretty fun. Well I'm off to bed soon. I'll head back to KC tomorrow afternoon to pick up the rental wheelchair van. Then Alison's brother, our dog and I will head back up Monday morning to get her. Thanks for your continued support.
Friday, June 22, 2012
Alison had another really good day today. This morning we found out we got into the facility in Shawnee we were hoping to. So that was good news! We'll be making the move on Monday. Then this afternoon, Alison made HUGE strides with her assistive tech device! She was able to spell both our names using two switches by her left foot to scan and select letters on her computer - it was incredible!! That's going to open up so many doors for us with her being able to communicate. She doesn't have it mastered yet, but she totally gets it. And it'll only be a matter of time before she's talking up a storm! On a more somber note, the buyers on our house backed out today. : ( They absolutely insisted on a new roof even though it has 10+ years left on it. This was in addition to everything else we'd already conceded, so we just couldn't to it. Plus, it was a ridiculous request. So we're planning on being listed on MLS by next week and start all over. But there was more good news than bad today, so I'm happy. Thanks for your continued support.
Thursday, June 21, 2012
Alison has been in a great mood this evening since I arrived around 8pm. She's been very vocal and full of life. I hear she had an outstanding day in her assistive tech session. They hooked her right foot up to two separate switches - one to scan through options on a computer and the other to select those options. The therapists were very impressed by her abilities! I'm eager to see it in action tomorrow. I will also find out tomorrow which of the two facilities we'll go to on Monday. But after meeting with the front runner in Shawnee this morning, he said it looks "very favorable" that they'll take us, and by noon tomorrow we will have a definite answer. But even the back up facility in Olathe would work as a temporary solution. And on the home front, I submitted my resolution back to our buyers after their post inspection requests. So we should know soon if they're committed or pulling out. My mom and nephew will be in Lincoln with us over the weekend. And the plan is to transfer Alison back to KC on Monday. We've got a big few days ahead of us. Thanks in advance for your prayers and support.
Wednesday, June 20, 2012
It sounds like Alison had another good day with her brother and sister-in-law. They reported she was in pretty good spirits and did really well in her physical therapy session today. During that session she showed some new movement in her left leg that we hadn't seen before. While sitting in her chair, she had already been lifting her left leg up a bit. But today she began extending her leg almost completely straight out - bending at the knee. She did this a number of times repeatedly upon request, so that was very encouraging to hear. I'm eager to see it for myself when I go up for the weekend. I have a meeting at 8am tomorrow with the front running facility for Alison. It's in Shawnee and the people sound very caring and interested in helping us out. I've not seen the facility, but am cautiously optimistic this might be the place for Alison to spend a bit of time before we're ready for the next stage. Thanks in advance for your positive thoughts and prayers for that meeting to go well. I'm planning on a transfer from Lincoln to KC on Monday, so hopefully we'll have everything figured out by then.
Tuesday, June 19, 2012
Alison's brother and sister-in-law report that she was pretty giggly this afternoon. She was in pretty good spirits and they've had a nice time today. She definitely enjoys having good people around. They'll be there for most of tomorrow, but then Alison will be on her own Thursday until I arrive later in the evening. On the home front, our inspections came back with a list of requests from the buyers that seems pretty excessive. So I'll give where I can, then pray they don't bail because of the items I can't and won't concede on. So keep your fingers crossed that all goes well... On the facility for Alison front, Alison's brother and our case manager called a ton of places to see if we could find a few more options. It seems like it was a successful venture, and there are now a few more places that we've sent referrals to in hopes they might consider taking us. Some facilities are as far away as Lawrence, but that's still closer than Lincoln, so we'll see. As we near the weekend, we really need to start nailing things down. But I'm glad we have a few more options to consider. Thanks for your continued prayers and support.
Monday, June 18, 2012
So there's no one with Alison in Lincoln today. And, as expected, it sounds like she was pretty emotional for most of the day. Her brother and his wife are heading up in the morning though for a couple days. The search for the right KC facility for Alison is still on. Our front runner has hit a snag - no open beds at the moment. The back up could work, but their therapy options are very limited. And that's kind of a big deal. So the next couple days we're going to hit it hard - calling any and every facility we can find. Hopefully we'll discover another option or two. We trust that God will lead us in the right direction. Thanks for your continued prayers and support.
Sunday, June 17, 2012
I'm back in Kansas City tonight after a nice weekend spent with Alison. It was sure hard to leave this afternoon, but hopefully this will be the last time I have to leave her in Nebraska. By this time next week we should know where in KC she'll be going. Today Alison and I went for a walk outside before it got too hot, then went by the fish tank before going back to the room to play on the computer. She continued to show improvement using the foot switch to scan and select different items on screen. Then I helped her work on swallowing by giving her some applesauce which she really seemed to enjoy and do well with. Otherwise, we watched a little bit of Austin Powers on tv and had a few good laughs and listened to some music before I had to head out around 4. This should be a big week for us as we nail down the next facility for Alison's return to KC. Thanks in advance for your support as we make these huge decisions.
Saturday, June 16, 2012
Alison and I had a pretty good day today. We were fortunate to have two therapies scheduled for today which is rare for the weekend. Before her first session at 1pm, we went outside and down to the fish tank for a bit. Then she had an OT session that went well where the therapist was pretty impressed with her increased eye movement since last she saw Alison. After that we had over an hour of therapy with the assistive tech doc and the computer. We positioned the switch over her right foot and Alison was able to use it pretty effectively to scroll through and select different options. They showed me how to program the machine with different options and pages so that's been fun to play with. Alison sure enjoys using it too and we might even work some more with it tonight. Overall, we've had a good, fun day. Thanks for your continued support.
Friday, June 15, 2012
Alison and I had a pretty good day today. She had a full day of therapies in which she did pretty well. Outside of therapy, we didn't have a ton of free time. And the weather was kind of gloomy so we didn't get outside today. We watched a couple episodes of The New Girl tonight. That's always good for a laugh. But she was in pretty good spirits for most of the day and we had a good time together. She actually has two therapy sessions tomorrow as well, but that should still give us plenty of time to hang out. Thanks for your continued support.
Thursday, June 14, 2012
After driving through some pretty heavy storms, I arrived in Lincoln to find Alison kinda sleepy. But it wasn't long before we were cutting up and having a good time. As much as I'd like her to be able to stay here at Madonna for continued therapy, I'm sure looking forward to being able to see her every day again. I hear she had another strong day in assistive tech therapy. She was apparently scanning different things on screen with her eyes, and focusing in and selecting different ones upon request. So that's really encouraging! I'm excited to see all that she can do tomorrow in her sessions. I also noticed that she has more eye movement and control. She's not been able to look to the right much at all before, but tonight she's showing some really good range with her eyes. It's sure good to be here. Thanks for all of your continued support.
Wednesday, June 13, 2012
I received a pretty good report from Alison's dad in Lincoln today. He said her mood was pretty good for most of the day, and as a result, her therapies were pretty successful. He specifically mentioned how well she was working with the assistive tech device to scan through letters on a keyboard by activating a switch with her chin. She seemed to be getting the hang of it. If she can really grasp that, and control her movements enough, she could eventually spell things and begin to communicate with us. But we've got a very limited amount of time left at Madonna, so that high level of assistive tech therapy is unfortunately drawing to an end. But the staff is working extra hard to do all they can to progress as much as possible before we have to leave. Of probably 15 long term care facilities in KC, it looks like only two may consider taking us in. And of those two, I've heard some bad things about one. So hopefully the other one - which would suffice - will confirm their ability to take us in. I'm hoping to know more tomorrow. In the meantime, I'm still following up on any others that seem suitable. Please continue to pray for wisdom and direction during these difficult decisions. And of course for Alison's recovery to continue. Thanks for your support.
Tuesday, June 12, 2012
The report from Alison's dad was pretty good today. She had another good morning of therapies, followed by a more emotional afternoon. But, overall, a good day he reports. They've changed up some of her meds to help address the stiffness in her right leg. It's always been the most severe of her tone issues. Hopefully the new approach will be more successful. They're also going to bring in a urologist to look at her ongoing UTI. It's not necessarily causing any issues (no fever, white cell count is okay), but it's not gone either. They will likely need to remove her catheter for a bit until it clears. Hopefully all will go well with that. I toured another long-term care facility today that wasn't as bad as the others I'd toured. And they seem very caring and interested in helping us out, so that could be a good option. I'm still exploring other options as well, but I'm not feeling as grim as I was yesterday, thankfully. My pup and I took a nice long walk through our neighborhood this evening. We're sure going to miss this place. Thanks for all of your continued support.
Monday, June 11, 2012
It sounds like Alison had a good morning and a rough afternoon. Her dad reports she had the best PT/OT session he's ever seen with her. She was doing really good sitting up on her own this morning. But that must have taken a lot out of her because by the afternoon she was pretty emotional and therapy sessions were more difficult. As of this evening, she was resting comfortably though. I've had a very frustrating day myself. As I'm trying to find a facility for Alison to come home to in KC, I feel I'm having to lower our standards based on our limited insurance coverage and pending Medicaid status. Those factors all but eliminate the good facilities, leaving us on the verge of having to just go wherever will take us. And since we're almost out of insurance benefit at skilled nursing, our options are to pay out of pocket privately (way expensive), come home (we will ASAP), or go to a nursing home (yeah - way depressing - especially for a 31 year old). We would come home, but we need 24 hour care - which we can't provide on our own and isn't offered by our insurance or Missouri Medicaid. But Kansas Medicaid does have it, but there's a 3 year waiting list for those services, or else you have to spend 90 days in a facility and be Medicaid approved before you qualify for special funding - which we will, but that just means Alison almost HAS to spend 30-90 days in a nursing home. I'm not real excited about it - as you might imagine, but 24 hour care is going to be very important in bringing her home, so it'll hopefully be worth it in the long run. Well thanks for letting me vent. Hopefully a good facility will turn up in the next few days, or an alternate option will reveal itself. Thanks in advance for your prayers and positive thoughts for this situation specifically.
Sunday, June 10, 2012
Alison and I had a pretty good day today. We took one of her plants outside for some sunshine this morning, then went down to see the fish. After that, we watched Zoolander, then her dad showed up. We visited for a while this afternoon before I hit the road back to KC. He tells me that when he went back to her room after dinner, she was sleeping soundly. Hopefully she'll get lots of good rest. It will likely be a busy week of therapies for Alison as we near discharge. They will probably try to squeeze in as much progress as possible. I know they're especially hoping to have an assistive tech device functioning before we go. Our discharge could be late this week, or early next. That will be determined by the timing of me finding an adequate facility in KC for her to come to. The goal is that we would spend a short amount of time (30-90 days) in a KC facility before she would return home and probably begin a day rehab or outpatient therapy program. Please send positive thoughts and prayers for continued wisdom and direction as we try to figure things out. We also have our home inspection tomorrow. Hopefully all goes well there and we continue toward closing in mid-July. Thanks for the continued support.
Saturday, June 9, 2012
Alison and I had a pretty uneventful, but nice day together. We went outside for a bit, then down to see the fish. We watched some tv, played with the assistive tech devices a little, then watched some more tv. We laughed A LOT this evening. We like laughing. : ) Alison also got pretty talkative tonight. So we had ourselves a little informal speech therapy session. She was all over the 'yeahs' tonight. Sometimes it's hard to get her going, but when you do, she can't hardly stop. So we've had a pretty good day together. Her dad and stepmom will be up tomorrow afternoon to take over next week. Thanks for all of your continued support.
Friday, June 8, 2012
I made it to Lincoln this evening to find my wife pretty happy to see me - and me to see her! I hear from her speech therapists that they're beginning to step up the assistive tech work so she will have a means of communicating before we discharge in the next couple of weeks. That would be amazing! It sounds like they may be on to something with one technique, so hopefully it sticks. And the search for a good KC facility is in full force. Thanks for all of your support.
Thursday, June 7, 2012
Since we don't have any family in Lincoln right now, I don't have a lot to report on Alison. I've called the hospital a couple of times, and everything seems to be going okay. I'm sure she's sad that no one's there, but we know she's in good hands with her caretakers. I'll be heading up there after work tomorrow for the weekend. I'm hoping to possibly tour a KC skilled nursing facility or two tomorrow afternoon before I leave so we can begin determining where Alison might be able to come back to. There are so many caveats with our insurance and Medicaid that the next two weeks are going to be crazy. But I'm hoping Alison might be back in the KC area by the end of next week. So we could certainly use some extra prayers and positive thoughts for that time-sensitive decision - that we'd find a good place for Alison to continue to recover. Thanks so much.
Wednesday, June 6, 2012
Alison's brother, Jeff, reports from Lincoln that she had an okay day today. Her nurses were new to Alison, so there were some inefficiencies with getting her ready for the day that resulted in some missed therapy time. And Alison was posturing (tensing up) pretty badly today, so that's not good. It's undoubtedly very uncomfortable for her when that happens. And some days are better and worse than others, so it's going to happen. But Jeff came back to KC this evening so I called to check in with the nurses, and all is well. Her overnight nurse is a lady we like a lot, so I'm comforted knowing she's in good hands. On the home front, we are officially under contract on our house before it even went on the market. Crazy, right? I'm still kind of shocked. I'm relieved, but saddened at the same time. We still have to clear the inspections, but we've agreed on a price that I'm happy with. And for not even being in the house a year, we're shouldn't lose any money on the deal (praise God). But, again, we're not out of the woods yet. The tentative closing date is July 19. In the meantime, we're trying to figure out the next step for Alison. We run out of insurance benefit at the skilled nursing level of care in a couple weeks. So we'll hopefully be able to find a rehab-focused, Medicaid-accepting skilled nursing facility in Kansas City to get her into. I have a lot to learn in the next couple of weeks to ensure we find the best place for her. But I have some good leads already. Please continue to send positive thoughts and prayers for wisdom and continued favor - especially in Alison's recovery process. Thanks so much.
Tuesday, June 5, 2012
I received a pretty good report from Lincoln today via Alison's brother, Jeff. He says she did well in her therapy sessions and was, overall, in a pretty good mood. The meeting with the eye doctor went okay. He left a pair of glasses that may help draw her eyes more toward center. But, initially, he didn't see a lot of change when she had them on. But he said it couldn't hurt to leave them with her for a while to see if it may help over time. Otherwise, not a lot to report. As we near the end of our skilled nursing benefit through our insurance, we're needing to make plans for the next step in Alison's recovery. In the next two weeks, we'll need to figure out where she'll go next, and how it'll be paid for. With our house soon to be on the market, and since I work on the Kansas side of KC, we'll likely relocate to Kansas. So I need to get the Kansas Medicaid stuff going, and explore what our housing and rehab options will be. So the next few weeks will likely be pretty busy, and some pretty big decisions will be made. Please pray we would be wise in all things - especially in finding another outstanding facility where Alison's recovery can continue. Thanks for all of your continued support.
Monday, June 4, 2012
I'm back in Kansas City this evening after spending a really good day with Alison. She had a very full day, but did really well in all of her therapies. I arrived at her room before 7am this morning to find her already awake. But she was in good spirits for being up so early. We watched some Good Morning America before her wheelchair assessment at 9am. During that, we basically went through every option for a wheelchair and discussed what she'd need. We'll then present our custom wheelchair to the insurance and, if approved, it'll be ready in a few weeks. Surprise, surprise, the color of chair we picked was bubblegum pink. : ) They've begun using a different head piece today that seems to be working pretty well. It's been a constant challenge keeping her head in a good position, but this just might do the trick. During her PT/OT cotreat session, she continued to show improved balance and core strength. She still needs help keeping her head up, but she's sitting upright almost entirely on her own. During her speech therapy session, she worked on eating real food! I'd been practicing with frostys and pepsi every now and then with pretty good luck. So today, she had thickened grape juice, strawberry yogurt, applesauce and orange sherbet. She had a couple bites of each, and indicated with her eye blink when she wanted more. She was able to open her mouth, take it in, move it around and swallow. So she did everything they were hoping she'd be able to do with it. When she took a bite of the sherbet, she made the funniest face. Her eyes squinted and her nose scrunched up and her head turned to the side - almost like it was sour. I'm pretty sure she got a bit of brain freeze. But a few seconds later we were laughing about it together. Then in her individual occupational therapy session, she was doing well with keeping her eyes centered and indicating with her long eye blink the correct colors and numbers of beads that were presented in front of her. Her eyes typically stay down and to the left pretty severely, so it's important we work on getting them more engaged in tracking. Tomorrow, the eye doctor will sit in during the OT session and observe. He's evaluated Alison before with little success. If she does as well tomorrow as she did today, I'm hopeful he might take interest and have some ideas to help. Overall, it was a pretty good day. It's always hard to leave, but she's in good hands there. And her brother is there with her for the next couple of days. This week we'll wrap up the details in getting our house ready to list, so that'll keep me busy. Thanks for all of your continued support.
Sunday, June 3, 2012
Alison and I had a pretty uneventful day in Lincoln today. We watched an episode of Swamp People and just took it pretty easy. I did talk with her about selling our house, and she took it well. She was sad, but so am I about it. But we talked through it, had a good cry, and moved on. We decided the best word to sum up the decision was prudent. I definitely feel better that I'm not having to keep secrets from her and that she's still somewhat involved in these big life decisions. I'll return to KC tomorrow afternoon; we have a wheelchair evaluation in the morning to figure out the best possible chair for her when we eventually move on to the next step. But her brother will come until Wednesday. We currently have a brief gap in coverage for Alison on Thursday. So if anyone wants to come hang out for a day, let me know. : ) It's really not a big deal if no one is there. During the week, she stays pretty busy with therapy sessions, so there's not a lot of down time anyway. But I've had a nice weekend with my wife. Thanks for all of your continued support.
Saturday, June 2, 2012
Alison and I had a pretty good day today. We didn't do a whole lot except hang out and watch some good shows. We watched some classic episodes of Bewitched this afternoon, and the classic movie, Joe Dirt, this evening. : ) Good times. We did go out and get some fresh air this afternoon. And I went shopping for a new outfit for her too. I think she likes it. : ) I'm going to break the news to her tomorrow about putting our house on the market. Please pray the conversation goes as well as possible and that she would understand the reasoning for it. There's not much ideal about our situation. The house is just one of many aspects that we'd wish were different, but it's just something we'll deal with like all the others. But thanks in advance for your continued prayers and support.
Friday, June 1, 2012
I arrived in Lincoln this evening to find Alison in pretty good spirits. Her aunt Sally made it home okay and it sounds like they had a lot of fun this week. In Alison's PT/OT cotreat session, she continues to improve her core strength and balance, so that's good. But it's great to be back with my wife, and I'm looking forward to spending the weekend with her. Thanks for all of your continued support.