Visitors? (One finger for “Yes”)

YES. Join Gabe’s real life support team and make a big addition to his recovery. Gabe is just starting on a 1 to 4 year road to recovery. Friends will be needed the whole long bumpy way of it.

Gabe’s life was saved at San Francisco General. Those of you who visited at SFGH are in the very brave category of hospital visitor friends. You saw him with tubes, lines, IVs, and comatose. The most you could do was hold his hand and wonder with us “Will Gabe ever wake up?” Often you choked back the tears. Sometimes you cried with us. Except for some subtle eye opening and right hand movement he was “sleeping” 24/7.

Finally came the day when he reached for Inge’s valentine and put it on his lap. We cheered! We knew he would wake up and he did. The teary visits came to a stop.

Then Gabe moved to Kentfield Specialty and Rehabilitation hospital north of the Golden Gate bridge. Slowly, over the course of September through December he gained strength. He was levered into standing positions and touched the ceiling. He was transferred into a wheelchair and started to learn to move it with his strong right arm and hand. Outside he ran his hand over Kierie’s bike agreeing about various adjustments and proposed changes. Kierie and I were taught to sit him up in bed so that he could have extra time to work on balancing himself in sitting position. Gabe has a strong right side but a non working left side (as of now) so is still not “rolling” on his side or sitting himself up. Once sitting up he can balance in position with little or no propping. In Speech Therapy he learned to indicate “yes” and “no”, showed us he can read (but may have some double vision problems), pointed out letters on a letter board to form sentences, and with guidance started to write legible letters. In late December he started initiating conversations by questioning his medications and wanting to know where we were all going next.

Friends came and talked to him at bedside, outside in his wheel chair or when he was in the lobby or occupational therapy room. He would answer “yes” or “no” to their many questions. “Do you remember the _____ race? And the time we _______? And you were so happy that we ______? Visitors experienced the subtle smile of the “new” Gabe, his emphatic thumbs up, rapid “yes/no” finger answers and a lively set of raised eyebrows at a remembered outrageous memory. Toward the end they also saw him quietly “mouthing” his answers. He could whisper a mile a minute and so quietly we would still have to guess at his answer and fall back on the communication of one finger meaning “yes” and two fingers meaning “no”. The visitors who were patient, clever, and good at twenty questions could say when they left, “Our old Gabe is in there but this recovery thing sure isn’t like in the movies”.

Now Gabe is at Spaulding Rehab in Boston. The very day he arrived he was coming down with a potentially deadly drug reaction to a past medication. He was moved swiftly to Massachusetts General Hospital where he immediately stabilized and the rash concentrated on his mouth and soles of his feet leaving both blistered and sore. He was down for the count. Lethargic, feverish, lips and mouth sore as hell but still raising those vigorous answer fingers. Nicola, Allison, Tim, and Tyler who visited then were brave “hospital” visitors, quietly sitting at his bedside distracting him with “Do you remember when we _____? stories. He loved it and it helped him know this too would pass.

Now he is back at Spaulding Rehabilitation Hospital. Regaining his strength to the point of when we left California. Brain injury recovery is similar to bike racing in that both require tons of energy and leave Gabe exhausted. Therapy sessions are interspaced with power naps. He is the new kid on the block and is still being evaluated as to what he can do. Today Kierie and I should get approval to do bed sitting exercises. Respiratory therapy has him on the fast track to remove the trach and speaking valve that he breathes and speaks through. Fingers crossed that should be totally gone by Valentine’s Day. At that point he will be in training to get that whisper up to speaking volume. Then we will all know what he has been eager to tell us for the past month.

So potential and past visitor. If you are a friend who wants him to achieve his maximum recovery you must come. Now that he is East, Gabe needs support from his friends and relations. He is expecting you to come and see him. He needs to see with his own eyes his bigger community of friends is still there. Scienific research and our own personal research shows us that the patients who had the most caring and sensitive visitors improve the most. No pill replaces a visit and a hearty handshake and a look into those searching brown eyes. Also, Kierie and I need the boost that your visits bring.

Plan on coming a number of times. The first time come to assess the situation. See where Gabe is at. He will remember you and most of your shared memories. He will be alert or tired or power napping when you arrive and you take your chances on that. He should not be over stimulated and renting out a Fung Wah bus and a big welcome back east party group is not a good plan for now. Weekends are best, afternoon and evenings. On week days come in the evening because of therapy and power naps in the day time.

Then, if you want to keep up the support and friendship, come back for a second visit in about a month (or less) and see for yourself the rate of change Gabe will undergo at Spaulding. Kierie and I are close to the action and each new muscle that reawakes we immediately are on top of. But for you it will take a little passage of time to be able to say “Awesome, Gabe you are so much more able to ___ since I saw you last”.

Then, while we are still in Boston, make a third or more visits just to relax and enjoy yourselves ’cause in a month or two he will be communicating more easily and will have more abilities to show off. Finally, plan a fourth and subsequent visits to Gabe’s family farm in Winterport, Maine when he is through all his hospital and most of his outpatient rehab. For those of you from away, the Allens have plenty of bedroom space and Gabe will be relearning his partying skills. I am thinking drop-in pot luck dinners on Saturday nights would be a nice event for local Mainiacs. Gabe will be making the dessert. Moxie cupcakes it is!

Suggestion: Call Donna or Kierie before you come to see how many others are planning the same visiting date.

Directions:
Main Hospital Campus – 125 Nashua Street, Boston
Visiting hours are Monday-Friday, 1 pm. to 8 pm, and Saturdays, Sundays, and holidays, 11 am to 8 pm. A maximum of four persons may visit at a time but 1 or 2 is better for Gabe.

Go to this link for directions. http://www.spauldingrehab.org/ourlocations/maincampus/directions

Those of you coming on the T, the closest stop is Science Park using the Green line. You must be on a Green Line T train that says “Lechemere” on the front for the train to actually go to and stop at Science Park. Then when you get off you can see the Spaulding building down river.

2010.01.27 / 2 responses / Author: Donna

The Glorious Flight of the Red Wing

So where is Gabe Allen? Last we told you he was to fly East on January 12th, and so he did!
Is he in Spaulding Rehabilitation Hospital in Boston undergoing vigorous rehab? No, he is not!

Gabe is camping out in room 834 of Massachusetts General Hospital in Boston recovering from a drug reaction rash. In the Alternate Universe on the Ride to Recovery you can never quite be sure where you will be one day to the next. So let me tell you what happened….

In December came the great news that Mike’s prime resource for footwear at Winterport Boot Shop, the Red Wing Shoe Company, would provide their corporate jet — a snazzy Citation V, and two pilots, Chap and Jim–to fly Gabe east as a gift to the family. This was a fantastic gift saving many thousands of dollars. What remained was to have Kentfield Drs. release Gabe, Spaulding Drs. receive Gabe and Insurance approve. This was all completed by January 6th and we contacted the Flying Nurses International to organize the medical essentials of the trip. Dana of the Flying Nurses arranged for sending and receiving ambulances; in flight ICU nurse Allen; all necessary health equipment; and a car service to transport all the baggage to and from the hospitals. The Maietta Bike raffle proceeds really would be able to pay for the medical end of the trip.

Early in the morning of January 12th, so early that Kierie and I really didn’t go to sleep the night before, nurse Allen arrived to prepare Gabe for the flight. He dressed him in warm clothes and prepped the St Joseph Ambulance team. The night shift nurses and CNAs on the first wing all came to say goodbye, wish us well, and some cried a few tears. The Limo service arrived and packed in our luggage. It was a good thing that the Limo also packed a huge black umbrella because we sure needed it at 4:00 in the morning when we got to Kieser Air at Oakland Metropolitan International Airport. Dark, cold and pouring rain was our sendoff from California. The umbrella covered most of the sideways drifting rain while the ambulance and jet crews planned how to get Gabe through the jet door that was narrower than his shoulders.

Into the narrow jet he went and into the comfy reclining seat. Kierie and Allen on the port side stowing the final medical supplies, Gabe and I on starboard and pilot Chap and navigator Jim reading off the final preflight checklist. We took off like a spirited race car at the drop of the flag and headed for Fargo, North Dakota our midway fuel stop. Gabe had a bit of sedation to help keep him calm so we thought nothing of his laid back observation of the trip unfolding around him. Allen was kept busy with monitoring Gabe –heart rate, oxygen level, suctioning the trach and giving meds. Kierie kept Gabe entertained and comfy with blankets and pillows. I mostly took pictures and enjoyed the catered Danish breakfast and sandwich and salad lunch that came aboard in Fargo. Chap swapped flying duties with Jim at Fargo and often passed back the Flight GPS mini-screen to let us see what state we were over. When we reached the Hudson and Chap announced that Manhattan was just at the point where the river disappeared on the horizon Gabe looked wistfully off into the distance.

We landed in the private aviation section of Hanscom Field in Bedford, Mass. by 3:00 in the afternoon, well ahead of schedule. PrideStar ambulance was ready to receive us. This time we knew exactly how to extract Gabe and get him onto the waiting stretcher. It was good bye to Chap and Jim who planned to make it back to Red Wing, Minnesota by supper. Allen came along to hand Gabe off to his counterpart nurse at Spaulding. All went smoothly and we were soon getting Gabe into his private room overlooking the beautiful  suspension bridge in Boston. We unpacked the bags, met the nurses and had a quick meeting with some of the staff. Gabe was safe in Boston and it was time to find Tim Swan, our host in Somerville just 5 miles away.

Our new place is sweet, a third floor condo that Tim owns in an older renovated house. We have the penthouse bed and bath on the fourth floor. We had time to meet Tim and his girlfriend Ann, enjoy some tasty chicken pie then we dropped into bed totally exhausted.

Early the next morning Tim drove us in to be with Gabe. We experienced Spaulding PT, OT and ST in action as they evaluated him throughout the morning. At 10:30AM we were happily surprised when the Respiratory Dept. chief no sooner announced that Gabe could have his trach downsized to a 7 than it was done — before our very eyes. Gabe’s chapped lips and a few red dots on his cheeks raised no alarms. He was very sleepy during his evaluations and we thought he was still on west coast time. At noon a few more dots showed up on his hand and palms and it was time to alert the nurse. By 5:00PM when we took off his foot braces and found a severe rash on the soles of both feet it was time to call the Dr..  That started a chain of events that began with us in an ambulance on a ride to Mass General two miles away.

This was followed by a 17 hour wait in an emergency room cubby for a room in this hospital that by law cannot turn away any ambulance. Except for the suspense of the spreading rash we were as comfy as could be when they brought in a hospital bed for Gabe and a gurney bed for me. Kierie went ”home” to rest up to replace me on the day shift. She supervised his arrival to a real room in the White Wing at 2:00PM the next day

So that is where we are, in a fantastic hospital with great nurses and teams of Drs.. Neurologists, opthomologists, dermatologists, a physiatrist and teams of internists have decided on a clinical diagnosis of drug reaction rash to a drug he was previously on in California. A diagnosis that ranges in severity from mild to deadly, Gabe has the mild variety where only 5% of his body is affected. His lips, mouth and soles of his feet being most affected but already improving. Despite his lips resembling the loser’s in a 12 round boxing championship he is still trying to talk and is gamely doing his bedside situps.

So the flight took place, we are ecstatic that we are on the East Coast, and we can hardly wait to get back to Spaulding where they are holding him a bed. As this is the Alternate Universe you can bet it will have a beautiful view of the Charles River.

Call first before you visit to make sure Gabe can receive visitors and to find out where we are. If you want to send letters our official address for the next month or so will be 30 Victoria Street #3, Somerville MA 02144.

2010.01.18 / no responses / Author: Donna

A New Year!

Two days after Christmas, in a crazy sleetstorm, I drove 3.5 hours on rural roads to PWM (Portland, ME airport). Normally it should be a little over two hours, but Winter in Maine can get pretty hairy.  I arrived unscathed that evening in time to visit with Gabe and mom for a bit before bedtime.  It was very exciting to see him, since the last time I saw him, he was still generally unresponsive. He actually began waking up the day after I last left! So, it was obvious that much progress had been made. He was able to lightly speak “Hi Summer” through his trach speaking valve, which was heart-meltingly excellent. He recognized me in a few seconds and his mouth began to move, eager to talk to me. Throughout the week, he would get excited to talk, and start moving his mouth and mumbling a bit when he saw me, mom, or other people. His speech is coming along, though it was really only possible to tell what he was saying if you knew what words he was going to say. However, this progress was super exciting to see.

It was also wonderful to see him able to eat pureed foods, such as yogurt and mashed sweet potatoes. For New Year’s Day I made him applesauce. It is weird and exciting to feed your 27-year-old brother, but I loved it, and especially when he wanted to feed himself. The eating and swallowing of such foods is a very important development, since it leads to improvements in trach weaning as well as speaking. I truly saw improvement in his swallowing just while I was visiting, which was very cool.

Throughout the week, I told Gabe about things back home, and he seemed very interested. Sometimes I joked with him and received his funny half-smile (his left side is still slowly coming along so the smile is mostly on his right). His eyes were wide and alert as he “talked” to Kierie (who was visiting family for the holidays) and our mutual friend Allison on the phone (she did the talking, though he was moving his mouth in response often). I sat with him and encouraged him as he worked with his therapists, and helped with all the bedside things that need to be done. It’s quite a workout and very emotionally demanding as well. But when the effort is rewarded with a hug, a high-five, or a garbled but definitive “I love you,” it is so amazing!

I didn’t get many pictures except a few from my mom’s camera phone. I’m in the process of getting those in a format that is actually usable, so perhaps I will post some later.

Happy New Year to all the Gabe friends, family, and fans!

xoxo

2010.01.04 / 2 responses / Author: Summer

Christmas

All the presents under the balsam branch this year were for Gabe. There were two kinds, the ones we gave to him and the ones he gave to himself.  

We celebrated a little early so Kierie could watch him open his presents before she left for a long planned visit to Mom and Dad.  Her big present to Gabe was Duplos and Legos. With the help of Kentfield maintenance I made him a mini skateboard for his left arm to ride on in PT.   I must say the Duplos were the more fun for Gabe. He snaps them together one handed for now.  A bright red sweatshirt from Aunt Laura and Uncle Randy and snazzy Adidas PT pants for those cold days ahead in Boston rounded out the gifts.  A pack of cards and dominoes were in his Christmas stocking along with a card holder and a chocolate bar.  

On Christmas day the weather in Kentfield was balmy and hit 55 degrees.  First dinner and then a walk. Speech Therapy had approved pureed foods for Gabe so I set up a banquet in his room.  I gathered my roast beef dinner from the cafeteria and placed it on the pillowcase/tablecloth draped tray table. Fancy gold rimmed serving dishes from our apartment made it quite festive.  Then on Gabe’s side of the table I arranged his meal in three little bowls and a china teacup–pear apple sauce, some hummus, mashed potatoes, and of course for the special day—eggnog.  He loved the variety and especially the after dinner drink, a few tiny spoon tips of ice water his first in 4 months.   

Next it was into his new clothes for a walk outside. Thanks Laura and Randy for such a cheery, festive sweatshirt.  We left Gabe’s restrictive feeding apparatus behind at the hospital and hit out for the town of Ross a quarter of a mile away.  The park path was lined with leafy trees and the green grass was vibrant. Flowers and berries are still accenting the path and nearby stream. Head centered and upright, body erect, Gabe was enjoying the day. The few passersby, bicyclists and walkers, all smiled and offered a “Merry Christmas”. Tiny Ross offered some good window shopping especially the bicycle store and also some beautiful distant views of tree and grass covered hills.  Finally in the gathering dusk it was time for the ride back to Kentfield.   

The simple dinner and stroll had shown me many of the hard won gifts Gabe had given himself. How many hours of swallowing exercises in Speech Therapy and countless frozen lemon swab swallows with Kierie had resulted in the ability to enjoy the eggnog and the slippery, easy to choke on water. Two days ago he had laid on his stomach in PT, shoulders hunched, propped up on his elbows and with great effort had kept his head erect and centered for three minutes while he stared intently at the sweep second hand of a watch.  Then in the same session he had sat unsupported by PT helpers leaning on one elbow for more than two minutes, shoulders twitching with the effort. Last week two PT staff cinched him into a light gait apparatus and suspended him over a slow moving treadmill. With a therapist at each foot they helped him walk for 6 minutes, step by laborious step, until the right leg actually started to respond. Gabe you never stop trying. You are always up to the challenge.    It was a great Christmas.

2009.12.27 / no responses / Author: Donna

Gabe draws winning Maietta ticket!

Back in September, bicycle builder Anthony Maietta had the idea to raffle off one of his custom-built beauties to benefit Gabe’s medical flight back home to the East Coast. The ball got rolling in November and mail started poured in. Maine, New York, Kansas, Rhode Island, California, Washington, Colorado, Arizona, Florida, Massachusetts….all over. When the raffle ended on Tuesday, December 15, we counted over 700 tickets.

It took four days to collect them from their corners of the country, then Gabe was ready to draw one single ticket…

You can watch the video here. Tony gets a call announcing the winner……

Jarrett Shambian! Hailing from New York City, he is a devoted cyclist, bike polo player, and is generously making the prize a gift to his sweet, lovely lady. A very large THANK YOU is paid to each and every one of you who contributed–whether it was to win the bike or simply to make a donation.  A gigantic chunk of change off the expected billing for the air ambulance we will take very soon. Because so many of you have paid such devoted attention to the raffle as it has progressed, Tony will update his blog and website with photographs of the bike being built, painted, and hopefully its display at the North American Handmade Bicycle Show (NABHS) in February 2010.

A brief side note, Gabe is doing wondefully and is showing new progress in the last two weeks. He is helping to get himself dressed, assisting more readily in grooming, physically participating in activities like games and reading and physical exertion in the PT gym. On Saturday, Day 114, he initiated wanting to leave his room by grabbing hold of his wheelchair wheel and pushing himself forward. He moved 15 feet on his own. A few days before that, he sat on a stationary bike and made full revolutions of the pedals by powering his right leg. His comprehension, memory, and increased effort to communicate reveals to us that Gabe is not a brain injury patient who will have 180-degree change in personality. Last night, Donna and I asked what video-editing program he had on his computer and he spelled out, F-I-N-A-L-C….

“Final Cut Pro?” we asked, and he signalled YES. He understands what state we are in and why, the calendar, the spelling of words, and he is beginning to gesture to tell us what he wants. Two nights ago, in regard to my going away for two weeks to visit family, he motioned “call me” without any prompts or ques. He is beginning to mouth words readily, and we can pick out the Ff and Pp and number of syllables flowing out. His will to speak also promises less of us interpreting his needs and desires through our observation and intuition.  Increased mouth, lip, and tongue movement means the trach will be out sooner rather than later because he’s using those same muscles to swallow. And right now he has nothing more tempting than pancakes, home fries, and of course, cupcakes to spur him on. In fact, Gabe passed two swallowing tests two weeks ago and this past Friday enjoyed two ounces of orange juice! He held and dipped the spoon himself.

There is a lot more to share, and I know just the woman to do it. Please check back in the next week for a holiday post and more good stories shared about the Madd Fajita. Much love, Merry Christmas, and Happy New Year,

-Kierie.

2009.12.21 / no responses / Author: Kierie

Gabe says, “Get me home!”

Hey. The Madd Fajita is jonesing for some East Coast vibes. Time to get the fella home soon. The wicked ill MAIETTA Bike Raffle ends December 15, so you have 11 days to send a check made out to the GABE ALLEN FUND (mail to: Summer Allen, c/o Winterport Boot Shop, ATTN MAIETTA RAFFLE, 264 State Street, Brewer, MAINE 04412) OR pick up a ticket from one of the bike shop closest to you:

• Continuum Cycles – New York, NY
• Bike Works – New York, NY
• Rose Bicycle – Orono, Maine
• Pat’s Bike Shop – Brewer, Maine
• Winterport Boot Shop – Brewer, Maine
• Paradigm Cycles – San Anselmo, CA
• Sunshine Bicycle – Fairfax, CA
• West Marin Pharmacy – Point Reyes, CA
• Box Dog Bikes – San Francisco, CA
• Mike’s Bikes – San Francisco, CA
• Community Bike – Boston, MA
• Back Bay Bicycles – Boston, MA

So the question is, where exactly is Gabe going and when is he going? After extensive research and trips to several of acute rehab hospitals, we whittled it down from 12 to 6 to 4 to 3 to 2 to 1. Nothing in stone yet, but our first choice is in Boston. It’s almost a sure thing Gabe’ll get there, but wise is the saying, Don’t count your chickens before they hatch. And that’s all you get until we’re safely there and settled in. But here’s a fun fact! Did you know Gabe’s favorite animal is a chicken? Yes, it’s true.

And as to when we leave, that’s a gooooood question. Gabe is making fan-tabulous progress, but he’s not ready for aggressive, accelerated therapy sessions just yet. He’s maxxing out at 2-3 planned therapy hours a day, and needs to be enduring 3-6 before he moves on to acute rehab. To be honest, there’s no doubt he gets 6 hours a day because Donna and I work a lot with him. We’re reading, holding pencils and crayons to practice writing (he’s good at Xs), shooting hoops with beanbags, playing dominos, fitting pegs into a pegboard, boppin’ a balloon back and forth, doing oral motor and sentence completion exercises to gear up the tongue and mouth muscles for speech, helping with grooming and getting dressed…whatever he needs we’re there and asking him to play an active role by participating. He obliges willingly. Every activity contributes to greater dexterity and strength, and lengthens his attention span. Because he’s constantly changing, so is the forecast on how much longer we’re here. G’s evaluated by his medical and rehab team and they recalculate the number of weeks remaining on his length of stay before he’s ready for acute rehab.

Hope this throws a lil light on why we’re still in California. And hey! Go get your MAIETTA ticket! 100% funds go to his +$20K med flight back East!

-Kierie

2009.12.04 / no responses / Author: Kierie

Happy Thanksgiving

With a title like that, you can guess what this post is about.

It’s 100 days post-accident and boggling to think of where Gabe’s been and where he’s at now. The outlook was so positively bad that there was nothing more to do but throw all hopes in the pot and hold tight to the lid. In this short of time though, he’s overturned professional medical opinion and is defying the odds against his recovery. Part of me says, “Yeah, of course this is where we are today,” while another thinks, Wow, we’ve come soo far.

How do we foresee the future, immediate and distant?  how do we plan to get there? There’s really no way to sketch out a detailed map, and I’m talking map as in what’s going to happen in the next week, next month, next year. I think we each have a different drama unfolding in our minds. But Gabe’s the guide and we’re marking down Points of Interest along the way. For instance, he’s been “drinking” coffee the last two weeks. If any of you ever met up for the morning coffee ride to 9th Street or sat with him outside Gorilla for 2-hour increments or shared a cup of joe with him anywhere else, you know he’s darn pleased to be getting that a.m. jolt. It’s impacted his alertness and participation in speech therapy: his stamina is longer and attention focused to answer cognitive questions in a concentrated 30-minute period, from the relationship between objects and people, to signs coded within language.

Another Landmark is successful sleeping throughout the night and our established morning routine: face wash, teeth brushed, head wash/massage, with a shave every other day, then open up the day planner, look at the calendar, cross off yesterday’s date, and key into where we are (hospital room in California and why we are here). What’s cool about each of these activities is that he’s helping do everything. He’s taking over more, putting fat Xs through the date and pulling the washcloth across his brow. The joy is so sweet when he reaches out to do something himself, initiating on his own without prompt or cue. His endurance is building. G’s been boosted up to a straight hour of physical therapy, which will prep him for the kind of sessions he’ll receive at the acute rehab hospital. And to think he couldn’t push through even half of a 30-minute session six weeks ago!

Some more gloss: for the last couple of weeks, Gabe has been having private phone conversations. Yeah, they’re kind of one-sided so the caller must be armed with stories. His hand poises the phone beside his ear and he listens intently. On a friend’s birthday last week, he mouthed “hi” to her and then, “happy birthday.” Once the speaker is done talking and says goodbye, he passes the phone back. No prompt needed.

Talk about no prompt needed, this past Monday (Day 104) we were hanging out in the OT clinic and Gabe’s eyes widened and he pointed to the stationary hand-cycling machine on the table. After I set it up, he got three full and unassisted revolutions, powered primarily by his right arm. His left arm was in place, but he has more healing to do before he begins moving volitionally. He DOES move his left side, but it’s reflexive—like when he wakes up his fingers stretch out, or his foot flips around when he’s tickled. But it’ll come. We’re sure of it.

Going back to that uncertainty mentioned a coupla paragraphs ago, existing in the unknown is a lot less uninviting when we think about existing in the moment. I think a lot about Donna and me, our togetherness in the daily-evolving scenario of being with Gabe and managing our own trajectories. We have a good home, just two miles up the road from the hospital. Our pantry is well stocked. Yesterday, fresh zucchini bread appeared on the kitchen counter. We have a car, generously lent by the Mowen family, and my bike to get us to and fro. The sweet town we’re in has a great public library. The hospital cafeteria food is actually pretty good. Though Mike and Summer are far away, their fingers are on the pulse and we’re all united on questions or issues.What a gift it is to be accepted by and welcomed by such a great family like the Allens. Every day, friends and strangers send encouraging messages. Many offer up a house, a meal, advice in small and big ways. And as each day passes, Gabe’s communicating more about what he wants, what he needs, and our intuition of those things grow. There’s a freak ton to be thankful for this year.

-Kierie

p.s. here are some fun, outside links for everyone:

• Want to know more about Gabe? Check out the blog he’s had the last few years: www.maddfajita.com
• Interested in what we do aside from kick it wtih G-Star all day? Read this.
• Radio programming to stimulate your brain: www.radiolab.org. We recommend the “Memory,” “Numbers,” and “Laughter” episodes.
• MAIETTA HANDBUILT BICYCLES is raffling off a custom-built bike for Gabe’s flight East.
• Awesome co-op bike shop in SF blogs about Gabe: www.boxdogbikes.com

p.p.s. Here is a picture of Gabe and Donna on Thanksgiving. As you can tell, he’s eyeing the sparkling apple cider. I went into the OT clinic and cleared off the big wood table of its equipment and games; Donna had the bright idea of adding a white “tablecloth.” We all sat together there as the sun streamed in, and dined on our T-giving meal, enjoying each other’s company. Gabe unfortunately wasn’t able to eat with us (remember, he has a trach tube and on a PEG feeding line), but it means he gets double helpings next year.

2009.11.27 / no responses / Author: Kierie

The Three-Month Mark

Last Friday marked three months. As in Day 93. Two Thursdays ago was 12 weeks. Want to know the date for Day 100? November 19. That’ll be 14 weeks. Don’t ask about hours unless you want to see therapy schedules and read clinical notes. Care to know the day he woke up? The date his friends emptied his apartment? When he was taken off the ventilator? The day he started what drug when and how much of it? The time he crashed?

Facts thrown like pebbles on a path to be retraced later on; all details written down. And here we are, three months. It feels like something special should be shared to mark it, or perhaps a new theme procured. The only one really around though is that Gabe is just getting better. Change in his behaviors is evident in a matter of days, always evolving.  Below are some stories of getting of how his progress manifests, as well as two pictures.

It’s afternoon of Day 86 and we’re in the OT clinic after a therapy. Donna comes in, peeks in at some of the games/puzzles/toys kept in the three closets, and emerges with a set of dominos. We start out with a 1:2 and a 2:5. He connects those and then picks up a 3:5. Next he pulls a 1:6 and he puts that down. Four pieces connected, and three days later, he’s connected five and we play a game of Go Fish. It takes 15 minutes to play with 10 cards, but we play.

On Day 88, Donna and I wheeled Gabe out to the parking lot so I could ride my bike around for him. I did some figure-8s, then pulled up alongside and he immediately took the right drop with his right hand. I asked him different bike parts and he touched each one. Headset. Top Tube. Drop bar. When I asked him where the brake was. In my mind I thought, “brake lever” but said “brake.” Gabe heard “brake”, thought brake, and pointed to the actual brake. He dropped his hand below the headset and head tube and grasped the brake itself. Oh! I said aloud, “I meant brake lever!” In response he raised his hand and not only touched the brake lever, he pulled it.

For the last 3 weeks, he’s consistently responding to us, to questions, to requests; we’ve adjusted our behavior by offering a choice in our words. Something like, “Do you want to do your Speech homework?” and asking for a yes/no response, or through an activity board (essentially a matrix with different items he can select, i.e. “I’m tired,” or “Bed” to get back in bed). Last week, Days 96 and 97, a thought we were taking a step back, a fluctuation in cognitive recovery (to be expected). The entire day there was frustration written in his features. A downturned mouth. A furrowed brow. His answers were not consistent or did not come at all; there was an abundance of mumbled lip movement. That night I realized, “Whoa! Maybe he’s sick of communicating yes/no through his fingers.” True enough, he confirmed it the next day and since there is more action from his lips. Gabe isn’t at a point where we can read his words at all times, but a simple yes, no, good are discernible, as well as the answers to the auto-completion sentences he’s given by his speech therapists (i.e. “What do you put over your eyes to protect from the sun?” Sunglasses.”

Another integral part to offering him a choice between two things, is also giving him time to do something himself. He can put a toothbrush in his mouth, switch sides, and remove it to place in our hands. It just may take 5-8 minutes. It’s so easy to take control and get it done for him, but certainly that’s not enabling him to relearn it himself. So he receives watchful assistance as he rebuilds everyday activities we all do.

On Day 99, he and I had a wicked thumb war. The air smelt of brimstone as we battled that day. I pulled no punches. His thumb was lightening quick. Our arms tangled back and forth across the table. My thumb, puny beside his, was crushed twice and “Uncle!” was cried out.  Later, the arm wrestle was a draw.

Last week a lot of attention was paid toward that right arm and improving its range of motion. A new exercise crossed with speech and occupational therapy was invented, in which a 3- or 4-letter word is chosen, and each letter hung above his head. He looks up, and reaches up, up, up to take it and place it on his lap. In a matter of six days, he went from lifting his elbow 4 inches off the bed to stretching his arm out completely above his head. Now that effort is being waylaid into reaching across his body to grasp the bed rail so he can learn to shift his weight.

Yesterday, I came across a bottle of bubbles at a local variety store. Before our nightly reading, he signals “Yes,” when asked if he wants to see them now or tomorrow. As they fly across his chest and lap toward his feet, he reaches for them, catching the bubbles as they float. Quick rapid movements, like his thub darting back and forth during a thumb war. He takes the wand and holds it just right. He purses his lips in a perfect O and I blow through the wand. As you can guess, his trach tube is still in place. He alternately passes and fails blue dye tests, however he’s improving in his ability to swallow and it’s typical for a patient to have it beyond two to six months. The oral motor exercises given by speech therapy train his tongue for better control of saliva and consistent swallowing, so we keep working at those twice a day this past week. If you remind yourself that he has to retrain every muscle in his body, it’s pretty fantastic that in those seven days he can lick his lips, teeth, and reach up for his nose and down to his chin.

Last story—since November 1 the calendar is taken down every morning. The day, date, and year is recited, and then he’s asked to point to it. Since the First, he’s gotten it right each time. On the Eleventh and Twelfth, he pointed to the right date without being told what it was! Last week he received a day planner, which breaks the day up into 30-minute segments. We write his therapy schedule in it, a couple of homework exercises to do, schedule a shave, plan on checking out some pictures on the computer. Stuff to organize his day, and the planner is helping him visualize it all. He’s now looking at the clock, and when told the time and asked to point out where that is in his planner, he does it with ease. A reminder is given each day of where he’s at, what state he’s in, and why he’s here. He understands he’s in a hospital, though the fact that we’re California is lost. That fact really isn’t important in the big picture. He knows who he is and who we are, and he recognizes faces and names that are important to him. He’s certainly still foggy, and his short-term memory is shaky. He certainly has a short attention span.  But we’re learning exercises to improve these facets, and we read the signs on when he needs rest and when he can keep up, keep participating. Gabe’s putting forth an effort that would squelch that belonging to any human being I’ve met. He’s exceeded all medical predictions in the doomsday and silvering lining categories.

2009.11.18 / 2 responses / Author: Kierie

Thanks to all

On behalf of Gabe I send thanks to all those that donated time, effort, assets, thoughts,music,smiles and even cupcakes to Gabes cause. All are important, and one is as important as the next.
In addition, the organizers and behind the scenes ,so to speak, people such as Laurel Coulter and PIE, Louis Littlefield of MY FORK PUB fame, BELS portrait for the great album, Phil Pitula for his musical and auctioneering skills, the bands of Nevah, Rising Tide & Anna Mae Mitchell, and Marilyn Does’ 4 cupcakes, if placed one on top of another would be 4 feet tall, would bring a smile to Gabe. Thanks again all. Mike the Dad

2009.11.09 / no responses / Author: Mike

Bring Gabe Back East! (a.k.a. The Maietta Raffle)

Design by the illustrious, the beautiful, and overly talented BrittLee Bowman

2009.11.08 / 1 response / Author: Kierie