CaringBridge continued

March 25, 2017

Initially, I wrote about Zack’s recovery here and educational topics in the main blog post section but I’m going to write everything together from now on. Actually starting a week ago. 🙂

Adventures in Aphasia continued March 7, 2017

We were doing a backcountry ski this weekend in our neighborhood and Zack peered over a not very steep edge to see what there was to see. He turned back and put his hands underneath his tilted head and said, “Sleeping.” I replied asking if he was tired. He smiled, pointed down the hill and said No, Sleeping and made a different gesture with his arms, like a gentle waterfall. Ahh, pillows! Zack found powdery, pillows for us to ski down. 🙂

Another BIG insurance win! January 17, 2017

I had a really good day simply because I was able to teach kindergarten today! After a full week of snow days, the sun came out, the plow and power crews were (hopefully) able to get some rest and family time, and everything was safe and good for school to be open again. We counted the vowels in our first names, measured our shoes with plastic bears, read about Dr. Martin Luther King Jr, and named some members of the -at family. And played in all that snow on the playground! We had a great first day back from what kind of seems like a 4 week winter break.

Then I get home and after doing Holm Construction office tasks, I opened the mail. And there it was. A letter from Anthem. A good news letter from Anthem. The best icing on a cake a girl could ask for. (Well, this girl at least.)

I’ll back up a little. In November, I got a letter from Anthem about outpatient speech therapy provided in September and October, 2015. I emailed the 2 appeals analysts whose names and contact info I had.

“Hello N*** and V***,
I hope that you are both well. I am writing because we received a letter dated November 2, 2016 that says the first level appeal review for coverage of additional Occupational Therapy and Speech Therapy is denied. You can imagine my surprise because we had not been notified that an appeal panel was being held. According to the letter, an appeal was received by you on October 3, 2016 but I do not know who this appeal was sent by.”
They were very helpful and emailed back right away. One said that either Zack or Renown (his authorized representative) could file an additional appeal. The other emailed back that Zack’s plan does not allow for 2nd level appeals, she was going out of town for several weeks and I could call customer service for assistance. This was interesting because I had requested a 2nd level appeal last summer and we won! and also a little frustrating.
So I contacted Zack’s primary care physician and the insurance liaison at Renown outpatient (the department where Kara, Zack’s speech therapist, works) and the billing department at Renown and we all tried our best. I’m actually not sure what Emily (pcp) or Yuko then Lyndsey (amazing insurance women at Renown) did but for the last 2 months, I just kept asking them to send this paperwork to this department or find this prior-authorization that they had previously sent to Anthem and resend it. Over and over. And it worked.
Today’s letter says:
2017-01-17-19-59-30

WOW!! We have lots of insurance angels looking out for us and I really appreciate them!

Zooming down the road – January 12, 2017

We had our 4th snow day of the week today and we don’t have school tomorrow so if I don’t have anything to add to the education part of this blog, I sure should add something here since Zack is working crazy hard every day. Like I mentioned earlier, Zack’s involved in a study of online video interactions with UNR speech therapists. There are 30 min daily video chats and the participants are given topics the day before.

When Zack first got out of the hospital, our friend Matthew came over for a visit. He seemed shocked that Zack had aphasia because he had only seen pictures of Zack with his OT and PTs. So in the spirit of less photogenic speech therapy and to give Zack the credit he’s due for his daily work, here is some of how he prepares for his daily zoom sessions.

Today’s topic was your stroke story. Zack is an anomaly in his aphasia groups because his aphasia is a result of his craniotomy not a stroke, but he did also have a stroke so there’s that. He first takes notes by hand. I helped with spelling as you can see in the margin but he writes the whole thing by himself.

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After this, Zack asked for some verbs. It’s great that he realizes his writing is missing them! He typed his notes into iPhone notes and I added some verbs and changed the spacing to show complete phrases. Then he changed them back into doable chunks.

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After the note is complete, Zack copies and pastes it into the predictable app. When he presses the speaker button, computer man reads what Zack wrote line by line. This gives Zack time to repeat and work on each one. over and over. This rehearsed speech is still really labored and labor intensive, but it’s pretty clear and his group seems to understand most of it. Part of their job is to ask clarifying questions so it all works out!

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This assignment was particularly interesting for me to watch because Zack read all of the caring bridge and posts here after we sent them to an AMC friend who is writing a book about healing through nature. He’s seen a lot of the pictures and the posts before, but because his reading is so much better now, it was as if he’s reading most for the first time. He remembers details about many pictures and I think it helps make sense of lots of things that i.e. Kara and I talk about.

Snowpocalypse and snowmageddon 2017 – January 10, 2017

Happy New Year! I thought I’d write a little update right now because I’m on my 2nd snowday in a row and Zack is participating in his 2nd zoom group speech session with the UNR speech therapy program. There are three guys with aphasia and 1 or 2 speech therapists on the video call. Yesterday was the introduction and today they are all reporting about the topic travel. The 3 guiding questions were Where have you been? Where do you want to go? What is your favorite vacation?

Zack wrote out a very understandable paragraph about backcountry skiing and the places he’s gone with Jeff and Dave but then wasn’t sure how to communicate that to the group. He problem solved and downloaded some pictures to his phone to show, wrote out a couple details on a mini whiteboard, and together we figured out that he could type phrases into his Predictable app. This way when he clicked on them, the app would read the phrase he typed and then he could repeat them. It was a great solution and worked really well.

I ski a lot; exercise; is beautiful. backcountry skiing, we go skin up; ski down. Dave and Jeff and I vacation and; California Eastern Sierras; and Shasta; Canada. February 4 to 9; Montana; Tobacco Root Mountain; Bell Lake Yurt; Truck; 14 hours; ski resort 1 day; 4 days yurt

I’m at the table while Zack is on the couch with his ipad (where the rest of the group is). He did a great job repeating the phrases that went with the pictures and the other 2 men asked a couple clarifying questions. The topic is hard to understand, especially for the gentleman from Dallas, but Tami (slp) helped with clarifying questions.

At the end of the session, Gina (slp student) asked two questions and the men showed their responses on a laminated 1-10 scale that they received in the mail. This is all part of a study for how the post-Aphasia University Boot Camp therapy sessions will work.

another text from Kara – November 15, 2016

I texted Kara to ask about some alternative alphabet exercises I could do with Zack because flashcards are boring and he didn’t feel like they work. This is her response:

‘…yes, I know Zack is tortured with alphabet tasks…however your guys hard work has paid off and he is doing MUCH better with receptive understanding. He is 90+% for writing down randomly dictated letters and was able to generate 2 words starting with a given letter (one familiar word and one new one) with no or very little help. So I’m really happy with the progress and we can stop with the drilling. ha ha.

Also, I’m really happy with the apraxia therapy app so you shouldn’t really need to play therapist with him anymore. [laughing emoji]’

I’m very proud of Zack for his alphabet progress and even more relieved to be relieved of my speech therapist duties. It wasn’t my strength!

text from Kara, our favorite speech therapist 🙂 – November 9, 2016

Kara and I were texting the other day about family names as they have been practicing for our upcoming Thanksgiving trip. She wrote this:

Trying to get B (a patient we met in rehab who is also still working with her in outpatient) to bootcamp. He is always impressed with how Zack is communicating when they see each other and said yesterday, “He’s fine and I’m not.” I told him Zack is not yet ‘fine’ but doing very well and I talked about how much therapy he’s doing here and on his own plus the aphasia group. Intensive therapy is a big deal when it comes to aphasia. Hope B ends up going if there’s still room. Zack is doing great! Even others with communication problems noticing! I use him a lot as my “motivator” for others and appreciate his willingness. 🙂

2016-2017 ski season is in full swing

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Before Zack left for the a Lundy Canyon (eastern Sierras) scouting trip yesterday, he updated his ski journal. Which is to say he started this season’s log. His spelling is getting better in many other situations though Shasta and Tamarack aren’t great examples of that.

Constant Therapy Homework Progress

Well Monday’s update went so well I figured I’d send another quick one! I get snippets of ‘performance results’ when Zack does homework and here’s the latest. Isn’t it amazing that he’s completed 28,821 tasks?!

constanttherapy-october-26-2016

quick update – October 24, 2016

Geesh, it’s been a while! I figured a good use of my temporary insomnia would be to update you all on Zack’s speech and language progress. Most of you know his physical limitations are very few. In fact, he and our friend Shane just got their first ski day of the 2016-2017 season in on Saturday. They drove up to Mt. Shasta Friday after work, woke up early Saturday and skinned up to about 10,400 feet. Had some snacks, took pictures, then skied all the way back down to the car (at about 6,000 feet). When asked about the conditions, Zack answered fast. Shane answered firm. But hey, it’s October!

Zack’s speech therapy schedule is Monday through Thursday one hour with Kara at Renown outpatient in Reno. He does homework on the Constant Therapy and Tactus Therapy apps each day. He’s also been reading a lot. I have been taking out books from my school library for him and he writes summaries about each chapter that Kara goes over with him. The comprehension is really high with 5th-7th grade level books and the writing is improving. Subject-verb and tense word finding and agreement are still shaky but really coming along. Another focus of Kara’s is the alphabet. This is something both she and I worked on a lot last year then slacked off on a bit. They have been working on groups of 6 letters at a time – identifying the letter name and coming up with words that begin with the sound(s). Last night he and I were working on G-L together and I think it’s safe to say it’s one of the more frustrating tasks because it’s been so difficult to retain. He doesn’t show any signs of giving up though!

We are officially signed up to attend the Aphasia Recovery Connection’s Aphasia University Boot Camp in Las Vegas next March. My head of school, Ruth, didn’t hesitate when I asked her for the week off and I have a great sub lined up. Zack watches a lot of the ARC videos and I was able to speak with Carol Dow on the phone when I was registering. Tami from UNR will be there and Zack will receive 3 weeks of follow up therapy sessions with UNR students right after the week in Vegas. He is hoping to go skiing on the way down, I was thinking we could hike out in Red Rock Canyon and maybe go to a Cirque du Soleil show… 🙂

I will try not to let 3 months pass before my next update. If you want to see some of Zack’s recent pictures of our friend Russ kiteboarding or Zack’s other escapades, he’s on facebook and instagram (a photo app for phones). xox

back with Kara! – August 1, 2016

Zack had his first official speech therapy session back with Kara today! She’s been volunteering a lunch break per week since March and for now those days are behind us. Woohoo!

August 1 2016 back with Kara

She did a quick evaluation this morning and they decided on a couple preliminary goals. 90% accuracy on simple yes/no questions. 75% accuracy on more complex logic questions. 100% accuracy on automatics including counting to 20, alphabet, days of the week, months of the year. melodic intonation therapy for longer phrases and sentences.

Holding my breath – July 30, 2016

Nearly 2 weeks ago, Zack and I sat in Dr. Brancamp’s office and participated in his Anthem Blue Cross Blue Shield second level appeal panel. We were at the 2nd level because the first appeal for continued speech therapy visits was denied on June 1. I formally requested a 2nd level appeal (as directed by Zack’s appeal analyst), we sent the UNR speech evaluation, Dr. Smith (Zack’s primary care physician) spoke to Nikki (appeal analyst) and sent additional health reports, and I checked in on the process what I’m sure turned out to be an annoyingly lot.

Emily was out of town for the day of the hearing so we asked Tami if she had time to participate with us. She has proved to have as big a heart as any of Zack’s speech therapists, is fiercely pro-patient, adores Zack, and was available! We met in her office directly following a speech therapy session with Vanessa. The phone conference included a moderator, Nikki, 3 panelists (all Anthem employees, none of whom are medically or speech pathologically trained), and the 3 of us.

Tami answered therapy-related questions, refute a couple suggestions, and by the end I was able to speak about Zack’s successful company, amazing determination, and a little history of his speech therapy coverage since his hospitalization. The moderator told us we would hear of their decision within 24 hours but based on their history of responsiveness, I didn’t hold my breath. We were wracked with emotion by the time we hung up and Tami reassured us that he could continue as a patient at UNR for as long as he desired. Zack gave her a big thank you hug and off we went with our fingers crossed.

Before we pulled into the REI parking lot, Nikki had called us. I held my breath and listened as she told us that she’d never seen it happen before, but the panel was impressed with how hard Zack is working and how much progress he’s already made so they awarded him unlimited speech therapy visits. I probably asked her to repeat herself 3 times and was tearing up so much I could hardly share the news with Zack! We left messages for Kara and Tami straight away. 🙂

But I didn’t receive the email confirmation I was told I would despite my checking hourly then daily while we were in Jackson, WY. Kara was also on vacation last week so I wasn’t sure what to do about scheduling visits with her but then the Renown outpatient office staff called to say they were having trouble finding the necessary authorization. I shared my only information about this topic (which Kara had already told them) and again crossed my fingers and held my breath. Several voicemails, some quick conversations, and a couple hours of praying later and Jen called back to say that she was able to speak with Nikki and we were all set for Zack’s Monday session. Wowee!! Holding my breath had really worked. 🙂

Anthem really has awarded Zack unlimited speech therapy visits and is honoring their decision with the authorization code that Renown needs. Next week he will see Kara 4 times and Vanessa at UNR 3 times (despite the fact that they’re on semester break). Persistence with the health insurance company and Zack’s amazing spirit have paid off!

University of Nevada, Reno Speech and Language Initial Evaluation Report

1 UNR speech evaluation report summary

1 UNR speech evaluation report summary part 2

quick report on Zack’s first UNR session last Thursday July 11, 2016

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We met with grad student Vanessa for the first time last Thursday. Zack’s set up to see her Tuesday and Thursday mornings, has a long term parking pass, and feels comfortable driving there by himself now. (I’ve been going with him but this week he’ll go solo.) She focused on semantic feature analysis and started with pictures she was confident he’d know – dog, house, ski, mountain! Zack wrote and named (verbally) the picture and at least 3 features for each. It was a great session and Zack liked working with her. The summer semester ends soon but luckily for us, Vanessa wants to continue through the ‘off’ month of August.

Zack takes on the UNR Speech Pathology and Audiology Clinic July 6, 2016

Last Tuesday, June 28th, Zack was evaluated by Dr. Brancamp and 3 graduate students at the UNR Speech Pathology and Audiology Clinic. They administered the Western Aphasia Battery, which he has ‘taken’ about 8 times previously. But he didn’t remember any part of it, so they considered it valid. He hadn’t made it very far into the assessment in the past so this time I saw many new sections and was so impressed with his amazing progress in an unfamiliar setting with 4 women all watching and taking notes.

Skills he did particularly well on: yes/no questions i.e. Is your name Smith, Is this a hotel, Does paper burn in fire; Matching color swatches to color words, repeating words and phrases; object (realia and also pictures) naming – knife hammer eraser ball book pencil screwdriver key watch spoon tape matches; reading sentence completions i.e. He reads the beginning of a sentence and chooses which of the 4 words correctly completes it; reading and following one-step directions, reading object names then pointing to correct picture; choosing the word that matches the given picture; and choosing the word he hears from a list; and some writing, spelling, and number dictation too! So many!! Lastly, when asked to name as many animals as he could in 1 minute, he said: dog, bear (hee hee — see below!), monkey, and bird. And he grinned after each of the last two!

Tomorrow we go to his first session with a graduate student and I’m hoping to receive a copy of his official evaluation so I can pass it along to the insurance company. We are waiting for a second level appeal hearing and I’d like to add this newest evaluation to Zack’s documentation.

Adventures in Aphasia: Bear part II + Montreal June 21, 2016

I met my mom in Montreal last Wednesday night and we had a really wonderful time walking all over the city, visiting the Pompeii exhibit and Botanical Gardens, and eating nearly every single vegan dessert the city had to offer. The trip was notable because it was the longest Zack’s been alone at home since his time in the hospital. (Side note: We celebrated his one year out of the hospital anniversary on Sunday. He’s come a long way!)

While he did just fine without me (sigh), Molly is another story. She tore her remaining acl and has two options. She could get the same tplo (tibial-plateau-leveling osteotomy) surgery that she has on her right leg or she could develop scar tissue in time and continue on down her road from ultra adventure dog to happily resting on the couch pup. We are opting for the latter bc she’s happy, recovering already, and 10. What really happened between her and the bear will remain a secret – it does remind me of the If a tree falls in the woods with no one around, does it make a sound? – and she will continue to live her spoiled, sunshine filled, swimming again soon, ideal Tahoe life.

Adventures in Aphasia: Bear part 1 June 13, 2016

Last Saturday, June 4th, I was napping and on my way to partial recovery from running on a 6 women ultra relay team that went 178 miles all together. Happily napping in the blazing sun, accompanied by my furry and small yet amazingly warm cat … making up for lost 8-10 hours of sleep. Deep in sleep, happy to be horizontal, sweating a little from the sun and cat. Suddenly I hear Zack saying, “hey hey.” So I open my eyes. Ozzie (cat) stirs. “Hey. Molly. Bear. (grabs leg) Bad.” I jump up, adjust to being vertical, and ask Zack to repeat. “Molly. Bear. Big.” Okay. shake it off, Sara. Wake up. Run down the stairs. Oh wait, you have really sore quads. Walk slowly and thoughtfully down the stairs while using the railing. Then down a couple more out to deck where Molly indeed looks like she encountered a big, bad bear.

Although she has gotten a lot better, she still hasn’t really put weight on that leg and on Friday the vet suggested we come in for a look-see. So we are headed to Reno tomorrow morning. When the vet (not our usual vet, who is our friend Erin) asks what happened, I suppose I will say, “Molly saw a big, bad bear. And what happened after that? Your guess is as good as mine.”

When I posted the original message below I meant to include the link to Zack’s caringbridge site in case looking back at his journey from May 26, 2015 to April 2016 help you in any way. I unrestricted the access but I think you still need to register with caringbridge. Zack’s caringbridge site – May 23, 2016 (a snowy day in Tahoe)

Hi. I couldn’t quite figure out how to add updates about Zack’s recovery to a blog that I publish with an educational flare. With my friend Ben’s help, I added a page that will be dedicated to Zack.

There has been so much improvement since I last wrote. Zack’s reading out loud has really taken off from just about nothing to quite a bit. Maurie started in with sight words a couple weeks ago and this week he has been working on some sentences. It’s amazing! Some of the sentences that are most successful (He can start them without repeating or watching my mouth make the starting sound) are: The dog is barking, The girl and boy play jump rope, It is snowing and raining, He saw a movie, and I don’t want to.

Spontaneous word reading and speaking this week include “Wall” for Wall Drug when we were looking at a map of South Dakota, “peanut butter” when I asked when he bought the turkey breast (meaning, when he went to Raley’s for the peanut butter to make cookies for the Holm Construction crew and speech therapist Matt, he also bought the turkey), “ready to go” about the laundry (that it was ready for me to fold!),”Mogul” correcting me at Matt’s location. So many new words every day. It’s exciting!

Lastly, Zack tried a Reiki treatment last week and felt like he had the best night’s sleep afterward. We’ve been balancing our cortices each night and he’ll return for another treatment in mid-May.

This afternoon, Zack went off to Lassen Volcanic National Park for a quick ski trip with Brian and Brent. Molly, Ozzie and I are enjoying a quiet evening at home. – April 30, 2016

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