Cards from all Over

*Stacy is out of communication this week camping in the Rockies, so Mom is filling in for the next several days.

Kevin is still working his way through the birthday cards. He has made it through 219 with roughly 50 left to go. Gives new meaning to birthday "week". Kevin hasn't minded the extra speech practice of telling Kathlin what your connections are to him. Of course we also get to share who some of you are as well. Thank you for such inspiring words. The positive energy that flowed from your cards has given Kevin, and all of us, quite a boost.

Cards came in from Canada, England, France, Scotland, and the Netherlands, as well as from California, Hawaii, Washington, Colorado, Arizona, Nevada, Montana, Minnesota, Nebraska, Illinois, Michigan, Maine, Connecticut, Massachusetts, New York, New Jersey, Pennsylvania, Maryland, Virginia, Washington DC, and Florida. How fitting for a Geography/Geology major!

Kevin accomplished another milestone this week. Friday evening he went on his first social outing. Close friends recently built a pizza oven for their outdoor patio. We enjoyed assembling yummy pizzas to be baked and shared family style. Kevin got to pick his choice of ingredients which were: pesto, mozzarella, goat cheese, Parmesan, chicken basil sausage, and caramelized onions on a olive oil brushed crust. The evening was fun but chilly. Kevin was pretty exhausted by the end, but as he said, "I have all weekend to rest."

After the Excitement

Kevin had a wonderful birthday, and much of that success is due to all of you—friends, family, friends of friends and so on. We now have a ridiculous amount of chocolate cakes, cupcakes and candy in the house, but that’s not the worst problem to have! Kevin has been enjoying dessert samplers every evening.

The birthday cards also were a huge hit. We put all the cards in a big wrapped box (pictured in the post below... that's about twice the size of a shoe box). When Kevin took the lid off the box, he squeaked out an overwhelmed “wow” before his eyes teared up. This was a great way to show him how much support he has. When all the messages of support come at once, it’s so much easier to comprehend how many people are out there thinking of him. Plus, the fact that he can hold each card in his hand makes the volume much more tangible. Showing him numbers of how many people check the blog each day just doesn’t have the same impact as holding a box of a few hundred cards on his lap. We haven’t reached an exact total count yet because he’s still working on opening and reading all the cards. Thank you so much to all of you who sent cards and postcards—you’ve helped Kevin truly understand how much he is loved by you all!

Even with all the emotional excitement on his birthday, Kevin managed to keep his energy level high. On his birthday and the day after, he was able to complete some great exercises with his left side in physical and occupational therapy. The day after his birthday, he stayed active and up in his wheelchair until about 6:30 p.m.! Yesterday, the excitement finally caught up to him, and he was pretty exhausted. Once Kevin got home from speech and physical therapy, he got to rest for the remainder of the day.

Today, Kevin is very concerned about his eyes. His double vision has improved over the past couple months, but his bouncing vision remains. This was one of the first symptoms to develop back in November, so the doctors have said it may be one of the last symptoms to leave. Over the past few days, his eyes have also been watering, stinging and giving him a bit of a headache. Kevin is very worried about this, since he’s very in tune with each new symptom that arises. However, the rest of us have a hunch that this is a combination of allergies and side effects of chemotherapy rather than a new symptom. Whatever it is, we hope it resolves soon so Kevin can be a bit more at ease.

Thank you again to everyone who sent Kevin a birthday card! We hope his new comprehension of his huge support network will give him new strength to fight Steve and Bob day after day.

Happy Birthday Kevin!

Today is Kevin’s 22nd birthday. It’s a gross understatement to say we’re all happy that Kevin can celebrate his birthday this year. We’re thrilled beyond belief. To be quite frank, there were times in January, February and March when we weren’t sure if Kevin would be able to celebrate another birthday. Of course, none of us are ever 100% sure if we’ll celebrate another birthday, but looking forward to our next birthday is something that we twenty-somethings take for granted. When the reality of our mortality stares us down so intensely, birthdays seem to be much larger milestones. So, the fact that Kevin has gotten out of bed, is sitting in a wheelchair at the table and will eat Texas Sheet Cake (the birthday cake Mom has made for us since we were kids) on his birthday is extremely impressive. Combined with his current upward trend of improvement, this day is truly a cause for celebration!

Above is a picture of the birthday cards we’ve received from friends and family around the world. Thank you so much to everyone for sending them! We have yet to give him the cards and presents—he’s still working on breakfast—but tomorrow I will report how he liked seeing all of your support.

It’s a typical grey, foggy and cold summer day in Aptos, but we will try our best to make the atmosphere as warm and celebratory as possible. Just a few months ago, Kevin couldn’t sit up, speak, eat, drink, and could barely move any part of his body. Now, his movement and abilities have improved so much that his unique mannerisms are returning. There are moments when I look at him out of the corner of my eye and see the real Kevin—the healthy Kevin. There are moments when a “yeah” escapes from his mouth with completely normal inflection and his true tone of voice. We have a million of these accomplishments to celebrate today, and we’ll celebrate them the best we can. Thank you to everyone for sending in birthday cards or postcards. We really appreciate you all sending in a physical showing of your support! Happy 22nd Birthday Kevin!

Learning to Walk

On Thursday, Kevin had a great day in physical therapy. He began working on the parallel bars, which the therapists use to teach patients to walk. The patient helps hold their body up with their arms on the bars, and they can walk between them. Kevin didn’t do the motions by himself; the therapist helped direct his arms and legs. However, the point remains that he has started to take some steps toward walking!

When Kevin gets home from physical therapy, he usually wants to sit in the blue reclining “comfy chair” to relax and take it easy. However, after the amazing physical therapy session on Thursday, he wanted to sit up at the table for lunch in his wheelchair. He didn’t get into the comfy chair until after 3 p.m. We’re thrilled that his attitude seems to have improved—he’s willing to take on new challenges and exert a lot of effort nearly every day.

Kevin has tried a new milkshake from Marianne’s that he really likes. However, it isn’t technically a chocolate shake, so it can’t go on the rankings list, but I’ll mention it here. Kevin took one sip of the Heath Bar milkshake and made a face, so Mom and Kathlin thought the shake was too cold and gave him a brainfreeze. However, the face meant that he was amazed at how good it tasted!

So far, we have received about 145 birthday cards! Thank you so much to all of you for sending birthday wishes to Kevin and showing your support. The cards and well wishes will really mean a lot to him, so thank you, thank you, thank you!

Joys of Food

Tuesday morning, Kevin received more chemotherapy. The Dominican Hospital oncologist who oversees Kevin’s care in Santa Cruz hadn’t actually seen Kevin for a month. Kevin was worried that he hadn’t made enough progress for the oncologist to be impressed, which was one of those things that we simply couldn’t convince him otherwise. It’s tough for Kevin to believe that he’s improving when he has heard that so many times before. Of course, though, the oncologist gave Kevin a thumbs up today—he was very happy with how Kevin looks and the coordination and muscle strength he can display.

Kevin got through the chemotherapy appointment well. On the way home, they stopped at Pleasure Pizza for dollar Tuesdays (for those of you not from Santa Cruz, Pleasure Pizza sells darn good dollar cheese slices on Tuesdays). The whole family got to enjoy dollar slices once they got home from the hospital, which was a great reward for an appointment well done.

On the topic of eating, we have recently been thinking about how Kevin’s eating has vastly improved. When Kevin was in the Dominican Rehab hospital, it took him hours to complete a meal, and he often needed Ensure shakes to supplement the calories. Heck, in February, Kevin was receiving nutrition and calories strictly through his stomach tube. Now, only four months later, he’s almost eating at a normal pace again. He almost can finish a meal faster than I do—but that’s not saying much, because I eat very slowly! But he is now able to get all his calories by mouth, and we can’t remember the last time he had an Ensure.

Kevin’s outpatient physical, occupational and speech therapy sessions continue to go well. Each day he goes into therapy is a big outing that tires him out, but he’s continuing to do well in therapy. Kathlin, Mom and Dad are great at remembering the exercises that the therapists do with Kevin so that they can replicate the therapy at home.

The birthday cards have started pouring in—thank you so much! If you haven’t sent one in yet, you still have time, so go ahead and drop one in the mail. I’ll have to post a picture of how many cards Kevin receives. He really appreciates all of your support and love, so anything we can do to remind him of it definitely improves his mood. Thanks again!

Luminaria

We’d like to thank the several people around the country who have participated in Relay for Life events over the past few months. A few months ago, I mentioned the Colgate Relay for Life and the one our cousin Patrick walked in. Many more people who are in Kevin’s support network have also walked. Accompanying this post are a few pictures of the “luminary” bags that have been decorated for Kevin by more friends across the country. Another Relay took place last night at Cabrillo College in Aptos, and there was definitely support expressed for Kevin there. Thank you to everyone who has participated in a Relay in Kevin’s honor!

Kevin continues to improve on various things every day. The improvements are small, but sometimes can take us by surprise. I walked into Kevin’s room last night to ask if he wanted cookies for dessert, and he said in a perfectly clear and un-slurred voice, “I do want a cookie, but I probably shouldn’t,” seen as he had just finished half of a Snickers bar. My jaw dropped at how crisp his words were, and I told him he could have a cookie because his speech sounded so good.

Overall, his mood has improved as well. Yesterday he was a bit bummed out, but in general over the past week, he’s been pretty upbeat and positive, considering what he’s going through. He’s been smiling and laughing more often. He’s also been more actively engaged in his surroundings and feels more comfortable inserting comments into a situation. For example, when we were getting him out of the car one morning for outpatient therapy, Kevin reminded us to hang up the handicapped placard on the rearview mirror. He’s heard me sneezing like crazy (it’s a tough year for my allergies), and once when I walked through the room he was in, he stopped me and commented on how bad my allergies must be. A few weeks ago, he didn’t seem nearly as aware of his surroundings, and he didn’t feel confident enough to talk more than was absolutely essential.

Because of the up-and-down route we’ve had thus far, it’s hard for all of us to get too excited about the progress Kevin is making. However, the improvements this time around seem to be occurring more quickly and compounding to create even better progress.

Thank you for beginning to send in birthday cards! This will be a great way for Kevin to comprehend how much support he has around the world. His birthday is in a little over a week, so if you haven’t yet sent a card or postcard, there’s still time. Thank you again for being part of such a wonderful support network for Kevin and our family!

Upstairs

For the first time since he’s been home, we got Kevin to the upstairs floor of our house. On Sunday, Dad, Mom, Kathlin and I managed to carry Kevin upstairs (and back down again) while he was sitting in a plastic deck chair. When we split his weight between the four of us, Kevin wasn’t too difficult to carry. He kept laughing while we were carrying him in the chair because he felt like a king. We just needed a couple friends fanning him with palm fronds, and the scene would have been complete.

Once Kevin was upstairs, he watched the World Cup final game with the rest of the family. However, the game was made so slow and boring by the continuous fouling, so Kevin nearly fell asleep several times. He managed to shake himself awake to see the end of the game. Later that afternoon, he watched the preparation of Reuben sandwiches in our kitchen. We have been working through Kevin’s special requests for food, and Reubens was on his list. They enjoyed a late lunch / early dinner of what they described as awesome Reuben sandwiches. The sandwiches were all the more amazing because it was Dad’s first time making them, and he put in a lot of effort—he slow-cooked the corned beef for a couple days and made the cabbage from scratch. Kevin said it “felt like torture” to be in the kitchen and not be able to do anything, but we have since then talked with him about that. We are encouraging him to take that negative feeling of helplessness and turn it into something positive. If it feels horrible to not do anything, then next time he’s up there, we’ll make sure that he can do something. Plus, if he wants to do something that badly, he has a lot of incentive to practice the movements and work on it.

In previous weeks, Kevin has gotten nauseated on the Sunday nights that follow a Tuesday chemotherapy session. However, this Sunday he didn’t have any problems. We made sure we were staying on top of his nausea with anti-nausea medications, and he got through the afternoon and evening just fine.

Kevin is getting closer to being entirely off the oral steroids he’s been on since November. He is now at a very low amount per day. This is great news—it means his body is getting closer to handling the swelling on its own. However, the tough part at this stage of the weaning is the emotional and mental side effects of the steroids. Kevin’s body has grown so accustomed to having the steroids, so now that he is almost off of them, his body is trying to chemically rebalance, and his emotions are getting thrown all out of whack. Kevin needs a lot of pep talks and reminders about how well he’s doing, because his own brain likes to tell him otherwise while “the steroids are talking.” In the room where Kevin hangs out most of the time, we’ve started sticking post-its listing things he can now do that he couldn’t do just a few months ago. The progress is going so slowly that Kevin sometimes forgets he’s improving. However, when he’s reminded that he couldn’t eat a few months ago, he realizes how far he has come.

Three Chemotherapies

On Tuesday, Kevin received all three chemotherapy medications that he is currently taking. The appointment was a long one; he was at the hospital from 9 a.m. to 1 p.m. However, he managed the appointment and the trip to and from the hospital well. The Netherlands/Uruguay soccer game on TV helped the appointment go a bit faster—plus, Kevin, Kathlin, Mom and Dad were happy they got to see the entire game!

After the major dose of chemo on Tuesday, we have been keeping a close eye on Kevin’s nausea and coughing. So far this week, he hasn’t had many major problems (knock on wood!). He has been coughing a bit more, which always makes us nervous because it might mean he isn’t controlling his secretions well. For those of you keeping close track, the secretions, coughing and swallowing issue is one of the main symptoms Kevin has been dealing with since he got sick. However, Kevin’s coughing hasn’t prevented him from eating well over the past few days, and he’s managed to keep up a good appetite. He has a new favorite milkshake: the Mexican Chocolate shake from Marianne’s. The cinnamon and chocolate combination seems to hit the spot—he even requested the shake a second time this week.

Today Kevin starts outpatient therapy. Mom, Dad, Kevin and Kathlin have just left for a long appointment for speech and physical therapy evaluations. After today, we will get a feel for how Kevin handles traveling to therapy.

We have thought of another way that you all can show Kevin your support. Kevin’s 22nd birthday is on July 27th. Since it’ll be an extremely emotional day for Kevin, he won’t be up for a huge party. However, we want to continually remind him how much support he has out there, so we thought of another way for you all to give him birthday wishes. It would be wonderful if each of Kevin’s supporters sent him a birthday card or postcard via “snail mail.” We will collect the cards as they come in. Presenting all the cards at once to Kevin on his birthday would be an impressive physical showing of just how many of you are cheering him on.

You can send postcards or birthday cards (no packages please!) to:
Kevin Williams
240 Quail Run
Aptos, CA 95003-9565

Thank you so much for your continued support and readership of the blog. If you feel like taking a few moments to write Kevin a birthday card or postcard, please do! Even if you don't directly know Kevin well or know him through someone else, receiving cards from you all will show him just how many people are thinking about him. Feel free to send the cards at any time; we’ll collect those that come in early and save them for his birthday. Also, thank you for the great suggestions for podcasts and geology / geography videos—if you think of any others, please pass them on!

Happy Fourth of July!

Kevin continues to do well at home. He has completed the sessions of physical, occupational and speech therapy at our house. There were a limited number when the therapists could come to Kevin. Now, we will give outpatient therapy a try. This will be a larger ordeal and more difficult for Kevin because of the car trip to and from appointments, but we’re still going to give it a shot.

In the last couple sessions of occupational therapy at our house, the therapist was working on playing games with Kevin. Holding a hand of cards and placing a single card down on the table is very difficult for Kevin because it requires fine motor skills, but he’s willing to practice the motions and play some games. The other day, he managed to beat Kathlin and the occupational therapist at “Go Fish!” He’s also been playing (and doing very well at) “Turkeyfoot,” a traditional Williams family game that’s similar to dominos.

The Colgate community continues to be extremely supportive and helpful for Kevin and us throughout this process. We’d like to thank Kevin’s Colgate friends who have flown out or stopped by on their road trips to California. It’s been wonderful for Kevin and Kathlin to see you and reconnect to their life back at Colgate. Thank you so much for your visits, and please continue to stay in touch with Kevin and Kathlin!

We also just received a list of interesting online lectures and podcasts from a few of Kevin’s Colgate professors. We have been searching for things to engage Kevin’s mind, but it’s difficult when he can’t yet read books or articles. Kathlin has been reading him some Geography and Geology things, but we’re excited to have Kevin start listening to and watching these USGS lectures, climate change podcasts and other material. Please let us know if any of you have suggestions for videos or podcasts that would stimulate Kevin’s mind (without requiring him to read anything). Anything relating to Geography or Geology is wonderful, but anything interesting on other topics is also welcome. Thank you again to the Colgate professors for the suggestions.

Happy Fourth of July to everyone—we hope you have a wonderful holiday!

A Bit of Nausea, A Bit of Improvement

So far (knock on wood), Kevin has only gotten nauseated once after his latest round of chemo. He received chemotherapy on Tuesday, and he got sick on Sunday. We are pretty sure this nausea was due to chemotherapy because two weeks earlier, Kevin got sick on Sunday night after Tuesday chemotherapy. So, in the future, we’ll b extra careful about Kevin’s anti-nausea medications on the Sunday after his chemotherapy! However, since Sunday night, Kevin’s nausea hasn’t been an issue.

While it’s difficult for Kevin and people who see him every day to notice any improvement, progress is definitely noticeable when one doesn’t see Kevin for several days. Last week, my friend Emma and I drove Kevin’s car and belongings home from New York, so I spent about six days away from home. When I returned, I noticed significant improvement in Kevin’s symptoms. Kevin’s speech was much more clear and strong. His feet looked infinitely better; the swelling has decreased enough that he’s now able to wear shoes for transfers and physical therapy sessions. I have started helping out with “edge-of-bed” exercises, in which Kevin sits on the edge of the bed to work on balancing, sitting up straight and strengthening his torso. I was blown away by how well he’s doing; on Sunday, he spent nearly an hour sitting up on the edge of the bed. He is now able to look at himself in the mirror to see which small adjustments he should make to correct his posture. Of course, Kevin doesn’t really acknowledge his improvement because his progress isn’t as fast as he would like, but Kathlin has started to tell Kevin that his opinion no longer counts on this matter! When I returned from the cross-country drive, I could definitely see that Kevin has improved.

We just received news that Kevin’s platelets are 229,000! This is the highest they have been since he got sick in November. His low platelet levels have always been an issue—for a while they were hovering around 50,000. When his platelet levels get too low, doctors scale back treatment such as radiation and chemotherapy. However, now that Kevin’s platelets seem to be doing very well, we may ask about giving Kevin stronger chemotherapy treatments.

The pictures posted today are of the paper chain and cranes made by middle school students at the school where our Aunt Ellen teaches. The chain is so long that it doubles back along our entire banister, and many of the links on the chain have good wishes or words of encouragement written on them. The students also made a few long chains of paper cranes. The chain and cranes add a lot of color and cheer to our house. Thank you to everyone who is thinking of Kevin and sending him good wishes in whatever form you can!

Belated Father's Day and Chemo

The past week has gone relatively well for Kevin. The last drop in the level of steroids was tough for the first few days, but it seems that his body has now adjusted to the lower level. He’s able to swallow and eat a bit better—until he makes the next drop down in steroids!

Kevin also received another round of Avastin on Tuesday. This is the chemotherapy he receives every two weeks. The appointment went well, and he was at the hospital for a shorter amount of time than previous visits. The doctors were impressed with Kevin’s improvement since the last time they saw him. Because of everything that Kevin has been through, he has a tough time believing doctors when they tell him he’s improving. However, we might have finally been successful in convincing him that the doctor was telling the truth.

After the last chemotherapy administration, Kevin got very nauseated for the next few days. However, that doesn’t seem to be as much of a problem this week (knock on wood). We are trying to stay more on top of giving him his anti-nausea medications.

When Dad walked into Kevin’s room on the morning of Father’s Day, Kevin surprised Dad by pulling a card from under the blankets and saying, “Happy Father’s Day!” Kevin had actually signed the card as well. His handwriting is not wonderful; however, it’s much better than it was when I last saw it a few months ago. When Kevin was in the ICU, had a tracheostomy and couldn’t talk, he would often try to write in order to communicate. Back then, we sometimes couldn’t decipher Kevin’s handwriting, but his name on Dad’s card was pretty clear!

Kevin has also been performing well in his physical, occupational and speech therapy sessions. His feet have greatly improved over the past week; they’re still a bit swollen, but not nearly as swollen and red as they were before. Kevin’s feet are also a bit less painful for him, so he is able to do a few more transfers.

The home environment is much more relaxing and enjoyable than living in the hospital. A while ago, when both the physical and occupational therapists were at the house working with Kevin, a family of deer, babies in tow, paraded across our lawn. Kevin’s window looks out onto the lawn, so the therapists, Kevin and Kathlin got to watch the deer family cruise by. That’s not usually a sight seen from a hospital bed! We hope the relaxing environment will continue to be good for him and will help foster more improvement.

Trying to Resolve Some Issues

Kevin’s feet have started to improve over the past few days. They are still very swollen and red, but they are a bit less painful for Kevin. His feet have caused some interference with physical therapy, so he hasn’t been able to practice in the standing frame recently, but he is still transferring in and out of chairs, sitting outside in the wheelchair and working a lot on occupational therapy exercises.

Our best guess is still that this swelling is a side effect of one of the chemotherapy drugs. Plus, the partial blood clots in both his legs do not help his circulation, so the clots are probably exacerbating the situation. These are the same clots that were discovered at Santa Clara Valley’s rehab hospital—Kevin still has a filter to prevent the clots in his legs from moving to his heart. We’re happy that his feet are less painful, but we’d like them to return to normal a bit more quickly!

We’re also working on tapering Kevin off the oral steroids he’s been on for months. He’s down to a low level, but with each drop down a milligram, his symptoms get a bit worse. The steroids decrease the swelling around the tumor, but each time we try to taper the steroids, the swelling increases a bit until his body readjusts to the new level. At this point, he can only eat soft foods because the swelling has affected his swallowing, but we’re hoping that within a few days he’ll be able to eat regular food again.

Kevin continues to enjoy being home. He is able to sit outside on the deck, and he watched Kathlin and I give Chammy a bath a couple days ago. Kathlin is also convinced she can teach Scooter, our cat, how to sit. She gives Scooter a treat every time he sits on command; I’m not sure if Scooter actually realizes what he’s doing and why he gets a treat, but Kevin gets a kick out of the cat eventually sitting on command! Kevin still enjoys watching the Food Network, and he’s also been watching a bit of the World Cup. It’s a good thing we got satellite TV installed; NBC and a couple Spanish channels wouldn’t have been very entertaining.

Thank you to everyone for your support, tips, help and hope. Please keep sending Kevin good thoughts and prayers!

Mystery of the Swollen Feet

A new issue has arisen over the past couple of days. On Sunday, Kevin woke up with very swollen and red feet, and they caused him a lot of pain. His feet especially hurt when he attempted to bear weight on them when transferring from bed to wheelchair to recliner. We are not sure exactly what is causing this, but our best guess is that this is a side effect of one of the chemotherapies he’s taking. Dad ran in several rounds of Kevin’s bloodwork to the hospital lab, and everything came back normal—even Kevin’s platelets and potassium are at decent levels! We were worried this might be issues with blood clots (again), but after consulting several doctors and having a couple come to the house to see Kevin, the best consensus seems to be that the swollen and painful feet are a chemotherapy side effect. His feet had improved today, and hopefully the swelling will continue to decrease.

The good thing through all of this is that Kevin’s nausea has abated for the time being. His appetite is slowly returning, and he’s finally able to keep some food down. When he’s not nauseated, Kevin is able to sleep pretty well in his own room. The dark, foggy mornings certainly help him sleep in and get enough sleep. While it’s stressful to go through one more roller coaster dive with the appearance of yet another new symptom, we’re happy to have him home in a warmer and more relaxing environment than the hospital. Thank you all for the love you have been sending Kevin and our family. He continuously needs emotional support and motivation, so if you have anything inspirational or hopeful to tell him, please send it his way.

A New Shake and Continuing Chemotherapy

On Tuesday, Kevin received another round of Avastin, one of the chemotherapy drugs he has been taking. This was the family’s first time transporting Kevin in our car, so it was a milestone. The drive to the hospital and chemo administration went relatively well, though the chemotherapy took much longer than expected. Kevin was doing fine until he got home again, when he got nauseated and sick. He had been doing well in terms of nausea over the past few weeks—so well that we had started to forget about the anti-nausea medication. Tuesday and Wednesday, Kevin was sick pretty frequently, but he’s managed to keep some food down.

We have a new #1 shake from the Santa Cruz area: the Fudge Brownie shake from Marianne’s. At least Kevin was able to keep that down!

Everyone has been getting used to the new routine at home. Physical, speech and occupational therapists come regularly to the house to work with Kevin, and he’s frequently working on exercises with Kathlin and Dad. I’m sorry I haven’t been posting many updates lately; I’ve been pretty bogged down with writing papers for finals week, but soon I’ll be home to help out. Thank you so much for supporting Kevin!

Home Sweet Home

Kevin has had a good few days at home. He hasn’t even gotten in the hospital bed yet because he’s been enjoying being in other comfortable chairs (especially the recliner) instead. Plus, it’s a mental boost to not sit or lie in a hospital bed all day. Two days ago, Dad barbecued Corralitos bratwurst with Kevin by his side. Kevin’s been enjoying eating some different foods besides the ones he’s had to eat in the hospital for several months. While the food in the Santa Cruz hospital was decent, they had a rotation of meals, and Kevin had gone through that rotation a few times. He was ready for something different. Kevin has really been enjoying the food you all have been sending us; time seems to slide away really quickly these days, so it’s extremely convenient for my parents to run to the fridge and heat something up when Kevin is suddenly hungry. Thank you all so much for your wonderful meals!

Kevin has also been enjoying several chocolate (plus some other ingredients) milkshakes. So far, out of the Santa Cruz options, Kevin has enjoyed that rather deluxe milkshake from Cold Stone the best. The chocolate, banana and peanut butter shake from Chill Out Café had just a few too many flavors for Kevin’s taste!

Mom, Dad and Kathlin constructed their own “standing frame” for Kevin to practice standing. This is a device was in the rehab hospital’s gym; the device has support for the patient’s knees and a strap behind their rear to keep them standing. This was one of Kevin’s favorite things to work on in the gym, so they were planning to take him in a few days a week to use the frame. However, that trip may no longer be necessary, since they have created a “frame” using the deck railing, pillows and a strap. Kevin is getting better at standing, and his endurance is improving. He is also able to move his left side a little bit more.

Now that he can move his left side, Kevin wants it to be instantly back to normal, so he’s frustrated that things are going so slowly. Kevin is also constantly worrying about another setback, so it’s hard for him to fully believe in the progress he is currently making. However, he is still continuing to work very hard, and he’s exhausted by the end of each day.