| Mikey's Recovery Update Archives. (go back for current update page)
5-20-2K.... Got into see the dee really early today and he was just getting up... After his breakfast of GI delight, he and I took a spin outside. It was kind of cool this morning, but Mikey seemed in pretty good spirits. I asked him if he was wondering why he was at Spaulding and if anyone had ever told him what happened to him and if he wanted to know. I held his hand and explained to him all of the trauma and drama and ups and downs and why's of the last three and a half months. He had a right to know and I kinda figured he was brimming with questions that he just was too tired to spell out. He was stunned at all I spilled onto him. The look on his face was pure "stun". I asked him if he was angry at me for telling him his state of affairs and got a real definite "no". I asked if he had any questions, he also said "no".. I think I covered everything pretty well for him. He seemed a bit relieved afterwards. We even had some pretty good laughs outside (I haven't made Mikey laugh in weeks, and it felt great to see him laughing his head off). He wanted to go back in cause he was getting chilly, so I wheeled him up to his grand suite and played him some "Replacements" while playing mom to his room. Cat came in to read him the newest Entertainment Weekly as I was leaving. His spasms seem a bit more calmer today, but alas the crystal ball predicts that tomorrow they will increase, since the doctor is weaning him off of his old spasm medicine to try yet another that hopefully will not make him so drowsy and confused. I can't wait for Mikey to get better.. I'm starting to get impatient and really am starting to get hungry for one of Dee's Sunday Brekkies of the best home fries in the world and whatever else was in the fridge.. we even had just baked chocolate chip cookies for breakfast once just for the hell of it.. Hurry UP but take your time Mikey...I'll wait for those home fries for as long as it takes... tina bugara <tina@eink.com> medford, ma USA - Saturday, May 20, 2000 at 21:58:38 (EDT) 5.17.00 - Not too much to report today. Mikey continues to impress his therapists, both in PT and Speech, with his willingness to work hard and improve his abilities. Unfortunately, his mood is pretty low. He's feeling frustrated and frightened, understandably so. It must be very difficult for Mikey to see clearly the miles of progress he has already made, when he feels like he is stalled at the gate. We appreciate the love and support Mikey has received so far; in fact, we want some more. Please take an extra moment to send some more lovin' to The Dee; a psychic hug, if you will. M.A. Ricciardi <parkdale@mindspring.com> USA - Thursday, May 18, 2000 at 14:21:33 (EDT) 5.16.00 - If today had a theme song, it would be Led Zep's Good Times, Bad Times. Mikey's speech therapists were rigging his sensor devices to various parts of his body today to make communication as easy as possible for him-shoulder, toe, knee, etc. He seemed to be getting a bit frustrated by the poking and prodding, but gamely moved his knee into the switch a few times. Once the therapist was leaving, he looked at me and began moving the arm of the message clock until he got to "GO AWAY." I asked if he meant me, and got a no. I asked if he meant the therapist, and he laughed and said yes. He then clicked on "I LOVE YOU," and "ROAST PORK." Attaboy. His pal Cat showed up, and brought Mikey a nice T-shirt. Unfortunately during our viewing of a South Park episode, Mikey began to weep; his legs were very tight. We got Mikey placed into bed, where he was more comfortable. Shortly after, Tina arrived, as did Robert Fisher and Alisha (sorry if I spelled/got it wrong). Though Mikey enjoyed the conversation, he was wracked by spasms painful enough to bring back the tears. It's very hard to keep in mind that these spasms are a positive sign of muscles receiving messages from the brain when they cause such agonizing pain…. Mikey is in a place that the rest of us, I pray, will never experience. M.A. Ricciardi <parkdale@mindspring.com> USA - Tuesday, May 16, 2000 at 20:01:36 (EDT) 5-15-2K - Mikey turned into "Lobster-man" this weekend as his friend Joey took him out for a stroll in the wonderful Sunday sunshine and didn't think about sunblock. Mikey's very pink and actually really looks good, albeit a bit hot. A BANNER DAY FOR MIKEY!!!! Walked in when Shelley, his speech therapist was working with him on the computer. She is trying to train Mikey to use the computer with an eyeblink sensor which is really really sensitive, so if he blinks at the wrong moment, the wrong letter is posted, or the wrong message is sent. We (Mary and I) told her about Mikey's great controlled, left foot/left knee movement, so she went and got him this knee switch that she plugged into a clock. You put messages on the clock and when Mikey wants the hand to stop on the appropriate message, he knocks his knee into the switch (this switch can also be used with the computer software instead or in conjunction with the eye blink system). We posted all sorts of messages on the clock and had him point at first, to the one's we wanted him to. Once he got the hang of it, he was controlling the clock himself with the knee switch. He told us that "Mary Rules", "Hi Tina" and "I'm tired". We will change the messages to fit whatever mikey wants to say.. THIS IS A BIG BREAKTHROUGH FOR MIKEY!!! - Being able to communicate sentences in a controllable manner. He also has been working really hard with the lollipop. He actually asked for one today with his knee/clock. I left him tired and tuckered from a day of hard work. He's really trying hard.. I promised him that if he kept up the hard work and didn't give up, that I would give him my car.. and he KNOWS I don't break my promises... So he's moving that foot getting ready to drive... All in good time. tina bugara <tina@eink.com> medford, ma USA - Monday, May 15, 2000 at 19:30:06 (EDT) 5.13.00 - I came in today to find Mikey watching "American Beauty," aka The Film of The Decade, so deemed by the Dee. We watched every sordid moment of life in suburbia, and Mikey seemed quite relaxed. His legs, which have been giving him no small amount of pain lately, were stretched out and only twitched slightly now and then. When Joyelle and I removed Mikey's socks to do some stretching and massaging, he showed me how he can wiggle the toes on his left foot, and hold them still, both on command. His responses are a bit delayed, but they are conscious movements, made by his intense concentration. I was very proud. After the movie, I held a lollipop for Mikey, which he proceeded to lick 4 times before getting tired. This is HUGE. The more Mikey can control his tongue, the closer he gets to learning to eat solid foods and to speak again. And I know that everyone is looking forward to that, especially the folks at Redbones BBQ, who've no doubt experienced a slight recession since Mikey went into the hospital. M.A. Ricciardi <parkdale@mindspring.com> USA - Monday, May 15, 2000 at 14:09:26 (EDT) 5.12.00 - Mikey was up in his wheelchair when I showed up today, but was still pretty zoned. He's coughing (or trying to) a bit more now, since I guess the previous muscle relaxant was keeping him from coughing before, and he's got some fluid accumulation in his lungs. Not a danger, though-just the normal amount that you'd have with a slight cold. He's still got the Mercer's infection, but is continuing the antibiotics, and now he has a new roommate, a lovely fellow named Ralph. I'd brought Mikey some lollipops, and he was able to do the "touch the lolly" trick for me a few times before getting too tired. He works so hard for the tiny movements that we make without even thinking about them. It's truly staggering. Linda V. dropped by and we read Mikey some emails (keep 'em coming, people!), and took him for a short spin to the solarium. Mikey's spirits are understandably low, so please send him some heavy-duty positive energy. Get out in the sun, soak it up, and send it along-Mikey really misses being out and about in the summertime. PLEASE NOTE!! I am trying to get a (temporary or permanent) video library for Mikey going. If you have videos to loan or to donate, please send them to: 41 Parkdale Street, Somerville, MA 02143. Please indicate if you need the tape(s) back. Thank you! M.A. Ricciardi <parkdale@mindspring.com> Glorious Kingdom of Somerville, USA - Friday, May 12, 2000 at 19:38:23 (EDT) 5-10-2K... Ok, I honestly didn't get to spend much time with Mikey today, but the time I did get to spend with him was quite amusing. He was on his way to speech therapy with Shelley when I arrived, but I had to deal with bureaucratic paperwork for Mikey so I only caught the tail end of his therapy. He kept nodding off because he is being taken off the anti-spasmotic which has been making him extremely loopy and sleepy. He was wheeled up to his room and another speech therapist was working with him, trying to get him to answer a question Shelley had asked him. Shelley used to be a Boston Music Scenester and was trying to find out from Mikey the name of Adam Buhler's band before he played with Splashdown. Mikey starts spelling on his board.. A....D....(and we all think he's spelling Adam's name) he continues... V....I....L... and that's it.. The therapist and I look at each other and I'm like "Advil.. Mikey, I've never heard of a band named Advil...".. The therapist is like "Me neither... are you telling us the name of the band or like you want drugs".. he blinked for drugs.. so much for the name of Adam's band.. I laughed.... Addendum by Brian Westbye.. "The band's name was Sirensong." Left Mikey to deal with the pain and the rain... tina bugara <tina@eink.com> medford, ma USA - Wednesday, May 10, 2000 at 22:21:41 (EDT) 5-8-2K.. Got into see Mikey just as his physical therapists were sitting him up in his wheelchair. He apparently didn't sleep well the night before but he sure slept thru this.. and my visit.. which is kind of a blessing, cause when he is asleep, the spasms seem to subside a bit. His doctor is trying every avenue of oral antispasmotic medication. He wants to get Mikey to a level of comfort where his spasms subside and he is not zoned out. If this method doesn't work, they will have to try intravenous medication injected into his spine which totally sounds even more painful than the spasms. The spasms themself wipe him out beyond belief. The cool news of the day is that the physical therapists had him lift his left leg up in the air which he did consistently along with moving the left three toes on his left foot. We attempted the lollipop exercise, but by the time I got to him, he just kept nodding off.. Okay, I know I'm boring. Dee's just reiterating it to me... He can snore in my presence all he wants if it means relaxing and a break from those nasty spasms... Out! Out! Damn Spasms! tina bugara <tina@eink.com> medford, ma USA - Monday, May 08, 2000 at 20:36:45 (EDT) 5.7.00 - Mikey had a uncomfortable day, due to bad leg spasms. He was alert throughout my visit, but less responsive than on days when he's in less pain. I brought him a Positive Energy candle, and we both focused on it, visualizing Mikey on the town again, walking, rocking, speaking, and of course, eating. Of course we won't be able to light it (oxygen levels, etc.) right now, but it adds to the positive energy in the room, graciously put there by all who've sent cards, all the photos pasted up, toys, decorations, and the disco ball T Max filled with love at all the benefit shows. Sadly, Mikey's spasms were very intense, causing him terrible pain. Brian and Tina showed up, and the three of us piled atop the bed, soothing Mikey, stretching his legs (and holding them still), and reading the latest emails he's received. After much sweat and tears (and drugs), Mikey seemed to relax, and dropped into an exhausted sleep. It's hard watching Mikey endure this pain, but he is very determined. As one email he received put it (sorry I forgot who, to give credit), "Ain't no leg cramp bigger than Mikey Dee." M.A. Ricciardi USA - Sunday, May 07, 2000 at 21:41:00 (EDT) 5-6-2K... Fortunately, Mikey wasn't too hung over from Cinco de Mayo and was pretty awake when Brian and I got into see him. We bumped into Shelly, his speech therapist, who was telling him all about the Sheila Divine show and that she really liked the Gravel Pit. We discussed alternative communication software with her and are trying to find the best one for the Dee. Today, Mikey and I started our own little alternative therapy designed to get more control over his tongue. I let him pick out a flavor of lollipop and held it in front of his lips. His goal is to try really hard and stick his tongue out as far as he can to touch the tip of his tongue to the candy. He tried really, really, really hard and actually got to the candy once. So as a treat, we got to swash the lollipop all over his tongue and lips (his first taste of candy and anything else but medicine in three whole months).. We are going to try this every day with a different flavor until he gets more tongue control back... then we will try popsicles. Then porksicles (maybe I should try those first..) He's trying so hard.. its so amazing. The leg spasms seem less painful today but he is still in need of a good stretching. Left him watching "Being John Malkovich" and he seemed really into it, laughing at all the ridiculousness of the movie.... American Beauty comes out this week so we'll try and snag him a copy. Lester Burnham Jr. is on his way back.. Keep sticking out that tongue dee.. Pretend its.. ... aah.. never mind... tina bugara <tina@eink.com> medford, ma USA - Saturday, May 06, 2000 at 19:11:32 (EDT) 5.5.00 - Found Mikey outside today with T Max, strolling about the patio area that overlooks the river. Mikey looked a little zoned, given that he was on his antispasmodic drug. But he enjoyed being out, feeling the sun and the breeze on his face. T told me about his therapy session, in which the PTs set Mikey atop this huge rubber ball (lying prone over the top), so he could feel shifts in weight and position as they moved the ball around slowly. I'm guessing that's what the purpose was; all of the therapy measures are aimed at reawakening Mikey's motor functions and getting him reacquainted with his body and the space it occupies. How lucky we are that this is something we develop over time as we grow from infancy-and how scary it is to think of how it can be taken away from us after a brain injury. Mikey indicated that being on the ball was scary, but he was glad he did it, and will keep on working. Mikey's bravery and will is so incredibly moving. His face rarely registers expression (extremes of sadness and laughter only), which makes his silent determination enough to shatter the hardest heart. On our journey outside, we met a cute Chihuahua, who sat on Mikey's lap and sniffed his face. I rubbed Mikey's hand on the pup's back, and his face lit up with joy. When we went back inside, Mikey's acupuncturist showed up and did some deep-tissue massage on him, and began a course of needles. When we put Mikey to bed, he dropped off immediately, but woke up shortly after. I got into bed with him after slipping some Willard Grant into the CD player, and held his legs until he fell asleep. Good-night, Mikey. Hope you dream of puppies. M.A. Ricciardi <parkdale@mindspring.com> USA - Saturday, May 06, 2000 at 12:34:57 (EDT) 5.3. - 4.00 I tried to post yesterday's update from the school library today, but the computers were down…So here's a two-day update: On Wednesday, he was in bed when I got there in the afternoon. Mikey has contracted an infection called Mercer's, which is a syndrome common to people staying in hospitals. He's on antibiotics, which should knock it out of his system in a week or so. If you are visiting him, please speak with the nurse before entering, and be sure to wash your hands before/after. He was in a fair amount of leg spasm pain, but I pulled his legs straight and massaged them the best I could. I asked him if he wanted to spell a message to the BRO folks, but he wasn't feeling up to it. So I tried to read his mind. "Do you want me to tell 'em, 'Do it for the show?'," I asked. A big YES with those hazel eyes. And later that night, BRO did indeed do it for the show-as well as for The Dee. The benefit rocked, and was full of love for Mikey. Today (5/4), Mikey was busy spelling a message for the Sheila Divine, playing tonight at T.T.'s.: "Hello, everybody! Enjoy the show!" We visited with T. Max and Tim Robert (BRO/MFO/NYC); Mikey really liked hearing about the highlights of the evening. He's looking forward to seeing the video. Mikey's head control is getting better and better; he's looking around, turning upon request, and doing a bit of nodding "yes." The leg spasms got bad again (seems around 5-ish, the neuron monsters start biting), but Mikey's really bearing down and breathing through the pain. He'll make a wonderful Lamaze coach someday, if anyone needs him. M.A. Ricciardi USA - Thursday, May 04, 2000 at 20:00:32 (EDT) 5-4-2K.. A lot of love was floating through the air last night.. music and karma channeling its way from Axis where the Boston Rock Opera performed, right into Mikey's heart. Saw Mikey this morning and he looked pretty peaceful, especially after the massage therapist visited him... I filled him in on last night's gossip, who came, who I saw, who said hi, who sent hugs.. he was enthralled with the whole shebang.. I can't wait until he gets to see the performance on video. He's gonna love it. Left him sleeping, albeit still having leg spasms while he dozed. I hope he is dreaming of running, dancing and playing air-drums in his sleep and not of the pain those spasms seem to cause him.. More Mikey Music tonite.. keep sending that good karma his way... tina bugara <tina@eink.com> medford, ma USA - Thursday, May 04, 2000 at 18:09:08 (EDT) We're attempting to get the Dee in shape for the impending Cinco de Mayo fest; Corona and lime, pulled pork burritos, and amazon redheads await! Ok, maybe a bit optimistic, but Mikey's spirits seemed to be up today. Took him outside for a breather (any excuse to give his new prescription shades a spin), and took in the lovely scenery that is the ramps of 93 and the Boston Sand and Gravel (pit) company. Got him laughing at tales of my congestion and the methods chosen by me to remove said congestion. After a while outside, the spasms returned, so we got tha Dee back upstairs for an injection of something or other...left him watching Bean and breathing deeply through the pain. I think we're all doing that to a certain extent. Brian Westbye <brianwestbye@hotmail.com> Medford, MA USA - Tuesday, May 02, 2000 at 20:31:16 (EDT) 4-29-2K - The sun finally came out today, but Mikey's pain didn't go away.. Mikey had a tremendous amount of pain today, which we narrowed down to one tight tendon behind his knee which runs up the back of his leg and is so spasmed out, that it actually feels like it could snap. Cat, Carolyn and I spent the day holding his hands, applying pressure to the spasm and basically teaching him lamaze to breathe through the pain. The pain only subsided when one of us cradled the tendon with slight pressure. The minute we took our hands away, the pain would start... The nurses gave him some Codiene which drugged him to sleep, while Cat called the acupuncturist. She came while we were taking a break and Mikey was quite relaxed when we returned after she had worked her magic with him. Adam Lewis brought Mikey some bundles of mail and read it to him while Cat and I were trying to calm another round of spasms down. We left Mikey asleep, surrounded by his teddy bears, stuffed kitties and the nurses and therapists who take great care of him always (Mikey says thanks Michelle, Joyelle, Jessica, Rochelle, Stephanie, Megan, Shelly, Kathy, Tim, and everyone else I have failed to mention.. but you are all great...). Lets hope tomorrow he is free of pain.. It hurts him a great deal, and hurts us even more to see him crumpled over in a spasm. Maybe Pete Sutton is right.. Mikey needs a good shot of Wild Turkey to set him straight. Tina Bugara <tina@eink.com> medford, ma USA - Saturday, April 29, 2000 at 21:41:40 (EDT) 4.28.00 - Spent about 2 ½ hours with Mikey this afternoon-he was pretty tired out from a visit from Planetary buddies and extensive PT. I read to him from High Fidelity for a while, until his legs began to ache from the muscle spasms. It's hard to see him go through them, but according to PT, it's appositive thing-the neurons in his extremities are waking up. Seems like they're pretty cranky first thing, too. Anyway, when I asked Mikey if he wanted some Coedine, he gave a big YES, but he actually opted for the lower dose rather than the higher, brave lil' trouper. The spasms got pretty intense (he started sweating profusely), so I climbed into bed and held him until he drifted off. What's a little sweat between pals anyway? M.A. Ricciardi USA - Friday, April 28, 2000 at 19:27:17 (EDT) 4-27-2K - Went to see Mikey early on today. Got there just as Megan, his speech therapist, was finishing up spelling some stuff that he was trying to say. He was spelling out "go now" which we figured out he either wanted us to leave or he wanted to leave.. It turned out to be the latter.. He's been really wanting to go home the past few days.. I don't blame him.. But he has miles to go before he leaves and he knows that...We are looking into seeing if he can at least come home for the day every few weeks but will not know until the doctor gives his approval. His massage therapist Christine came in and totally gave him the best relaxation massage of his life.. She also did some cranial-sacral work on him which relaxed him even more and he totally fell asleep. His legs are still cramping intensely and this massage seemed to give him some relief for about an hour and a half. Tomorrow we try acupuncture... Cross your fingers for pain relief. Tina Bugara <tina@eink.com> medford, ma USA - Thursday, April 27, 2000 at 15:56:36 (EDT) A bit of a torpor lately for all concerned. Grey and pissy April SNOW greeted our arrival at Spaulding today, and Mikey's leg spasms have not gotten any better. When I arrived, Stephanie was in the process of stretching out his legs and arms, and he blinked that they felt a little better by the end. T Max helped in the process, and then Carolann from Lens Crafters arrived to adjust Mikey's new glasses and new shades. That shi-shi basthad has gone Newbury St. on us all of a sudden! But he's stylin' as usual...kinda looks like Peter Wolf with *JUST* a bit more pate. Dee was dosed on Codine today, but his response was fairly good considering. He was able to spell out "When do" via his letter board, and T Max correctly guessed that Mikey was trying to spell out "When do I get to go home?" This is when I discovered that tough love seems to work...had a good chat, reminding him again that he's got a ways to go, but also how far he's come in a mere 2 1/2 months, constantly demanding that he aknowledge all these platitudes. The new Spaulding mantra is "You've gotta WANT it", and Dee wants it. Upon command, he managed to give some good effort at his Gene Simmons impersonation, sticking his tongue out a bit. Not much, but more than nothing. I've come to appreciate these little things so much as of late, and I hope we all do. Tough to imagine life without functioning. One week to go before benefit-ville. We'll be there. Brian Westbye <brianwestbye@hotmail.com> Medford, MA USA - Wednesday, April 26, 2000 at 20:09:34 (EDT) 4-22-2K... A gloomy, rainy, saturday has penetrated the mood of our friend Mikey. Today and yesterday, he has been quite sad.. He is frustrated that he is not able to communicate in the way he and we are accustomed to. We have told him that his progress has been great, he is miles away from where he began, but still has miles to go. He is still very intent on working as hard as he can, but is now coming to the realization that progress isn't going to come as quickly and as easily as he and we would like it to. Mikey actually fully cried (tears and sobs) for the first time...although this breaks everyone's hearts (I've been crying since..).... this is a great sign. It means that Mikey is totally still with us, mentally and emotionally. It means that Mikey still is Mikey inside his body that refuses to work in the way he wants it to right now. Mikey is going to fight like hell to reconnect those nasty neurons who won't cooperate with him... and we will all fight with him, holding his hand, wiping his tears, and sending all our good karma his way... Keep sending good karma and thoughts to him... He needs some sunshine right now.... even just a ray... tina bugara <tina@eink.com> medford, ma USA - Saturday, April 22, 2000 at 16:46:19 (EDT) 4.21.00 - When I arrived at Mikey's room today, he was finishing up a session with PT. He was tired out, but not so much that he refused to sit up in his wheelchair for a while. (They were doing the therapy while he was lying down.) Before placing him in his chair, they edged towards the side of the bed, and encouraged him to put some weight on his legs. Mikey's lack of expression (a common occurence for recent stroke survivors), it was painful to see his body being shifted about by the therapists. It's difficult to watch someone you're used to see being quite lively in this kind of state. While I was saddened, I took tremendous heart at the sight of Mikey, obviously somewhat disoriented as to where his body was in space at the time, was concentrating VERY hard on working with the therapists, and stretching his muscles with them. As he neared the edge of the bed, he was nervous (his left leg kept drawing up--a sure sign), but he clearly wanted to try standing on his feet. It's not possible for us to really empathize with this: he doesn't have the control over his muscles yet that would prevent him from being hurt if he were to fall on the floor. And it may seem a small distance to fall, but with total vulnerability. It may as well be a rooftop. But while this is sounding very negative, I want to express how incredible it was to see Mikey STAND ON HIS FEET, even for only a second, and at that putting his total weight in the therapists' arms. HE STOOD!!! We were scared, we were winded, but mostly, we were proud. It's a long road home, but that's exactly where we're going. M.A. Ricciardi USA - Friday, April 21, 2000 at 21:09:37 (EDT) 4-20-2K...Aaaah the sound of Mikey's voice...I came in today to find Mikey sitting up in his chair, clad in his Varnaline t-shirt, looking pretty relaxed. Got him laughing at the fact that he gave "Eyes Wide Shut" a four star rating on the Mikey Dee scale of movie rentals but neglected to inform his roommate that the only reason he did it, was because they had no clothing budget.. So I rented it and then told him I was mortified by the whole movie and thank god my mom wasn't with me watching it... UGH! Anywho..I read him some of his email which he seemed to really enjoy (he loves hearing the gossip from the music scene- send more!). The kicker of the day was that since Mikey's trach tube is out, he has been re-discovering his vocal chords. Although, he can't form words yet... He sat there making all sorts of neat, controlled sounds. I sat and sang some scales for him and he even tried a few times to change the tone of his "aaah", which I thought was cool and a great step towards singing Handel's "Messiah".. He used his newly rediscovered noise to indicate that he was quite uncomfortable sitting in his chair by getting really loud and kinda angry sounding.. communication!!!!. First sounds.. next songs.. Go Mikey... I can't wait to hear your first words.. "Pass the Pork Chops!".. tina bugara <tina@eink.com> medford, ma USA - Thursday, April 20, 2000 at 22:08:54 (EDT) I know Eleanor already posted.. but I have to reiterate the excitement. TODAY WAS AN ENORMOUS DAY IN MIKEY'S RECOVERY.. The doctor came in and yanked his trach tube out.. This means.. Mikey can totally 100% breathe on his own and is swallowing well enough not to be suctioned. Eleanor and I were there when the doctor came in to remove it, but he wouldn't let us watch or keep the trach tube for Mikey's life scrapbook. We were going to make a whistle out of it for him or a keychain, but the doctor refused. After the removal.. Mikey was so totally relaxed and very tired from breathing on his own. We do it so naturally, but he has had to reorient himself to breathing out of his nose and mouth. It is a big step considering only 8 weeks ago, we weren't sure he would ever breathe without a respirator. GO MIKEY.. YOU KEEP ROCKING OUR WORLD...even if it is with your breath!!! tina bugara <tina@eink.com> medford , ma USA - Tuesday, April 18, 2000 at 19:46:21 (EDT) BIG NEWS! Mikey got his trach tube totally removed today!!! I stopped in to see Mikey for the first time in a while to fill him in on the BRO benefit goings on. He was sitting up in bed wearing his Permafrost T-shirt, quite alert. We had some really good communication, although I'm not as experienced as a lot of people are with it. I asked him if he wanted me to read to him and he said yes. He rejected the newspaper but gave a yes to Ray Davies' book Waterloo Sunset (a loose collection of stories about an aging rock star and his manager, natch). So I read. Two lovely physical therapists were going at him all the while and got his muscles quite relaxed. Later on Tina arrived and we were asked to step out of the room while they removed the trach and checked his breathing. WOW, just seeing him without it and still pretty relaxed -- ok he was zonked after the experience -- he looked so much like his old self. It was very moving and I felt privileged to be there. We left him napping. I didn't want to leave. 4.16.00 - Sunday - Mikey had several visitors today; by the time I got to see him (around 5.30ish), he was all tuckered out. He is very responsive, and Tina reported that he was making a lot of noise today, both with his speaking valve on and off (the valve caps his trach tube, so that he can control how air flows into his lungs, and past his vocal cords. This is very promising; Mikey is practicing the exercises he learns in speech therapy, and is making great progress towards speech. We'll all be glad when we hear the Voice of the Dee again. It'll be good when Mikey can make his wishes known himself, instead of us having to try to interpret them, or to get at them through yes/no questions. His temp was up today; both Tina and I gave him ice baths during our respective visits, which helps. Sadly, all medical evidence thus far suggests that temp control is not something that drugs can take care of. It seems that damage to the brain's temperature regulator is a common occurence for stroke survivors. But we're still looking and hoping that there's something out there that can be done. I suggest that all visitors (which, by the way, should still be kept to close friends and family unless arrangements have been made) check his temp with the nurses, and give cool compresses when he wants them. Mikey continues to make amazing progress, and though it seems gradual, each little gain is monumental, and should be celebrated. Now getcher asses to all those benefit shows, and be sure to buy a fetching teal-green Mikey Dee Good Karma Ribbon or two. All proceeds go to the Mikey Dee Musicians' Trust. And believe me, unlike capri pants, teal looks good on everyone. M.A. Ricciardi USA - Sunday, April 16, 2000 at 20:25:12 (EDT) 4-14-2K - Spent the afternoon with Mikey... He was a little groggy today cause he said he didn't sleep well last night, but wouldn't tell me why. I told him all about last night's Boston Music Awards and how I was collecting money for his trust. So many people came up asked about him and wanted me to relay their well wishes. So I pulled out my list and ran my own gossip column for him on who was there, what they were wearing, who they were with, etc.. He was so enthralled by the whole shebang.. (if anyone can work a room, its Mikey).. Then, I read him the music award listing from the Herald and I told him about all the dedications that he got from the winners.. He really seemed uplifted by that and totally stoked by the winners (the Shelia Divine, the Pills, etc..). Got him some really cool glass fish and set him up a pseudo-fish bowl to look at. Mary came and then I departed for home, leaving Mikey to dream about last night and weave his own Boston Music Awards scenario in his head. We all wished you could've been there, Mikey.. Cross your fingers for next year..... tina bugara <tina@eink.com> medford, ma USA - Friday, April 14, 2000 at 18:53:27 (EDT) 4.12.00 - Evening. I know there'a already a posting for some great news about Mikey from this date, but I wanted to add my two cents. I gave Mikey a much-needed haircut this evening, something I've wanted to do for a while, but had held off for various reasons (Mikey's stamina, ability to sit up for a period of time, the risks of just one stray hair going where it shouldn't, etc), but the time had come. Nursing Assistant Jessica (who's a peach, if I do say so) draped him in a sheet, helped me bring his Ironsides wheelchair to a more upright sitting position, and removed the headrest, and...MIKEY SAT UPRIGHT, HEAD UP, UNASSISTED, FOR THE WHOLE TIME! I had thought perhaps someone would need to support his neck or something, but he was so great! It was an effort, too, since he was sweating pretty good by the time we were done. It was kinda hard to trim around the neck strap that holds the trach in place, but I did the best I could. Right before we finished, his head began to list a bit towards the port side, but when asked if he could keep going, he bravely blinked "Yes." By the time I finished, he was exhausted. One truly must suffer to be beautiful. M.A. Ricciardi USA - Thursday, April 13, 2000 at 19:29:32 (EDT) 4-12-2K: Now I know why Mikey is tired. I got to witness all of his therapy in full force today... Got there when they were working his arms and legs... then the occupational therapists were working on his hands... then respiratory came in to check on his new SMALLER trach tube (the last step before they yank it out). Then two different speech therapy sessions with two different people. One of the therapists gave him a letter board which he blinks what line the letters of the word he wants to spell. He did excellent at that.. answering appropriately all questions when we asked him and to spell out the answer. It takes a while to communicate this way, but it is a major first step. (The therapist said a person wrote a book this way, Dominique Bauby "The Butterfly and the Diving Bell - all written with one eye blinking since he was completely paralyzed). He seemed very alert when I got there, but was zonking out when I left. I asked him to spell out what he wanted and he spelled out "sleep". So I left him reclining, taking a nap and listening to the new "Star Ghost Dog" cd. His therapists seem very pleased with Mikey's progress but do not hesitate to remind us all that this will be a long, slow, process. Keep your spirits up Mikey... we're all here to help you for as long as it takes.... tina bugara <tina@eink.com> medford, ma USA - Wednesday, April 12, 2000 at 21:03:20 (EDT) 4-8-2K - Nothin' could be finer at Spaulding than to meet the Sheila Divine.... Its a warm, sunny, spring day, Mikey is sitting up in his chair listening to Tina's boring drivel when all of a sudden.. Brian walked into the room, followed by three of Boston Rock's cutest faces... The Sheila Divine.. which, of course, we all know is Mikey's favorite band in the whole world.. next to Butterscott of course.. If a face could say a thousand things, Mikey's did all at the same time.. His eyes nearly popped from their sockets, he laughed and cried (we think) at the same time and gave an enthusiastic "YES" to the query..."Are you excited to see these lads?". They filled in Mikey on all the 'gossip' he was missing out on in the Boston Scene and spent a good chunk of time with him. We then all adjourned outside to the prominade deck (thats the sunroof off the caf) and hung outside in the gorgeous sunshine...admiring the dirt we were getting covered in by the Big Dig. This was the first time Mikey has felt sunshine on his gleaming head since Feb 7th.. It was great! The Divine left him with their mercy and a cool t-shirt and promised to send him up some new stuff. T-Max, Cat, Brian and Tina then watched Mikey through his flexibility exercises in physical therapy.. which then wore him out even more.. so we left. (Addendum by Westbye): Ah, the more things change. Mikey has a stroke in winter, yet in resplendent spring glory, Mikey still swaps war stories with musicians. Sheesh, you'd think that three bleepin' brain stem strokes would take the guy out of commission from the Boston Scene! He's a terminator, I tells ya...a terminator! Uber thanks to all Sheilas for insane coolness, grace under pressure and valor in the face of adversity. Once again, they deliver. A great day had by all. tina bugara and brian westbye <tina@eink.com; brianwestbye@hotmail.com> medford, ma USA - Saturday, April 08, 2000 at 20:59:57 (EDT) A cold has kept me away from Spaulding for the last few, not wanting to spread the wealth, but I finally got in to see Mr. Dee today. Myself, Tina, and Smudgie-nicely toasted on catnip. When we got there, Mikey was pretty zoned, but after a bit of cat petting, he came around. Smudgie was a bit fidgety today; Tina claims that she was under the impression that we were at the vet's, but I think she might have been paranoid due to her recreational drug use. Either way, she finally settled into Mikey's lap. Mikey was staring down at her, and also followed Smudgie around the room. Got a rip roarin' laugh out of him today in response to tales of his garbage picking friends; probably the hardest laugh yet. He also loved my Keith Richards impersonation (vocal, not-thank goodness-visual). I was a bit worried by the forward pitch of his head, but this may be due to the fact that he's spent the last few days in bed; thus not exercising those muscles. He was turning his head to the right fairly extensively today, but we were told that that was a spasm. Still, it's better than no movement at all. He also turned his head left to look at Tina once. Voluntary? Who knows, but given the other alternatives, I'll take Manhattan. We've sort of clued him in to the crux of the "For the Benefit of Mr. Dee" biscuit...more details to come for him, and for all involved. Funniest moment of the day? While preparing to leave, an elderly volunteer came up and started talking to Mikey. We started chatting, and it turns out that she volunteers her time reading to patients; surely a wonderful gesture! Such a sweetheart. She mentioned that she got a computer printout of something to read to Mikey, but that she had to leave out a lot of "Dirty Words". Yes, she somehow managed to get ahold of an online Sopranos transcript! She turned to us and said "You watch that filth?!" in the kindliest way possible, almost making me wish I had a sin to confess. Didn't have the heart to tell her that Mikey was probably wondering where half the dialog went! Oh well. Until tomorrow. Brian Westbye <brianwestbye@hotmail.com> Medford, MA USA - Friday, April 07, 2000 at 21:12:02 (EDT) 4-5-2K: Ok, I snuck out of my house of surgery convalescance to see Mikey today. I haven't seen him in a while and was amazed at how well his responses are. He is clearly communicating with yes and no answers. He had a little respiratory setback today and was put back on some mist for the day. Apparently they think he had some mucus that he couldn't get up himself and he panicked, which made him look like he was having a seizure. When the mucus got out, Mikey was fine and totally tired. The MOST INCREDIBLE EARTH SHATTERING KABOOM NEWS OF THE DAY IS... that I held the schedule of bands who are playing for the 'Benefit of Mr. Dee' up in front of his face and he looked like he was reading it... I asked him if he was, he said "YES". I asked him if he understood what he was reading and he gave me a big "YES". MIKEY CAN READ!!! We have all been wondering this since the stroke. T-Max came in and verified it that he has been holding articles up in front of Mikey and that he has been reading them. This is the most amazing news! I'm so weepy. That just opens way more paths to Mikey's cognitive abilities. NEXT, we have him read to US.. in due time.. in due time... tina bugara <tina@eink.com> medford, ma USA - Wednesday, April 05, 2000 at 19:15:46 (EDT) Hey there! Went to see Mikey yesterday, April 4th, and spent some wonderful time with him just hanging out, doing some physical therapy, listening to music, having a mellow conversation etc. When I got there Mikey was very alert and lying quietly. He seemed to perk up when he saw me and when I asked if if he felt like listening to some music he said yes, and then the coolest thing was, we went through a pile of CDs and he very specifically picked "Sheila Divine", well known to many of you as one of his favorite bands! So we cranked it pretty loud. During the whole visit, communication between us was very very clear, you can really have conversations with him now, sure, mostly yes/no types of questions and answers but you can feel Mikey really wanting to communicate. The hard thing is I could feel his frustration, and towards the end of our visit he was actually physically trying to say things which I could tell was extremely frustrating! But he's vocalizing! Which is incredible!! His nurse Tim said that the speech pathologist had been there that day and he was very optimistic that Mikey would be talking soon, it may take a while to be understood, but the fact that he will be able to make vocal sounds is incredible. We worked on his hands, arms, legs, feet, all of which Mikey was able to move on command. In fact after we had moved a bunch of stuff and were just sort of sitting quietly, Mikey kept moving his legs and feet voluntarily, and looking at me like he was saying "look! I can do this!". One of the best things that happened was I was giving his some cool water and when I thought he had had enough, I said "would you like more?" and he MOUTHED "more"!!!! I almost fainted!! He's probably done that with a bunch of people but I hadn't seen that before - I was so proud of him!!! Towards the end of the visit I could feel him getting tired and frustrated and maybe a little sad, and that's not easy to see - it breaks your heart. But it's part of the process and I want to acknowledge it. It's a long road ahead but to see the changes, the progress, the things Mikey has accomplished already is truly inspiring and moving. There is so much hope for Mikey's recovery - so keep your healing thoughts and prayers coming!!xoxo L.V. Linda Viens <linda.viens@eudoramail.com> USA - Wednesday, April 05, 2000 at 09:13:35 (EDT) 4.3.00 - "For Every Millimeter, a Milestone." I saw MIkey on Friday (3.31) and Sunday (4.2); on Friday, he was pretty zonked out from a full day of visiting and therapy, although he perked right up at my offer to take him for a spin around the ward. I took him into the solarium/gymnasium, where we sat before the picture windows and watched the river, the sun, and the Big Dig. Mikey really enjoyed the warm sun on his face; I can't wait 'til we can go outside! On Sunday, he was in bed and pretty sleepy, so we just sat quietly. The consistency of Mikey's responses continues to improve--having a conversation with him these days is a lot cloer to having a conversation with him pre-stroke--he's able to answer more complex (though still yes/no type questions)more definitively these days. The nurses say he is doing great--they are very impressed with his efforts. They've been "capping" his trach tube for longer and longer periods--nearly the entire day, now--which forces him to breathe through his nose and mouth. This is something we were very worried about, but he's doing great, and with continued progress, they'll be able to remove the tube altogether. Let's all take a deep breath for Mikey: one, two, three.... M.A. Ricciardi USA - Monday, April 03, 2000 at 22:21:36 (EDT) 3.29.00 - I had a good visit with Mikey today. He was extremely alert, and very consistent with his eye responses. One of the speech therapists was working with him on a communication device that will allow Mikey to indicate short answers by moving his head or leg (whichever the sensor is attached to). Yes, he's moving his legs on command! It's very encouraging to see him working so hard, and making such progress. His voice is beginning to come back, and even though right now I mostly hear it when he coughs (and lets out a sort of groan, which is at once terrible and wonderful to hear), it's so incredible to hear that voice--albeit a bit hoarse--it's a sound I've missed so much. As is typical these days, Mikey responds best to humor. It seems to hurt his throat, but I know he enjoys a good laugh--right now, it's the thing that he does that's the most "Dee-like," to the observer, and probably, to him. He always was the only one who ever got all of my jokes, anyway. M.A. Ricciardi USA - Wednesday, March 29, 2000 at 19:49:06 (EST) I visited Mikey yesterday afternoon. He looked GREAT when I first got there, alert, relaxed. His friends Valerie and Brian W from the Noise were both there and T Max had just arrived. Since we were in an Oscar frame of mind, T and I showed Mikey a book of gorgeous photos from the golden era of Hollywood which he seemed to absorb and enjoy. T told bad jokes, and actually got a laugh or two from Mikey, I read him Cintra Wilson's hilariously nasty Oscar screed from salon.com. We both worked on his arms and hands the whole time too, getting him to relax and then going through the whole process again as he'd tense up. Mikey's really beginning to gain control of all his facial muscles and can relax his arms when gently encouraged to. It's all very promising and exciting to see. Left him with his brother amid the hustle bustle of the arrival of a new roommate. Leaving the hospital I noticed a white plastic bag whirling around the entrance rising and dipping in the breeze as though on a mission. It blew past me through the entrance doors as I exited. I imagined it catching the elevator to the fourth floor and landing in Mikey's room and took it as a very good omen... Eleanor R. <eleanor@rockopera.com> USA - Wednesday, March 29, 2000 at 14:55:13 (EST) March 27 - Mikey was up and alert in his wheelchair this afternoon, clad in a lovely purple-striped shirt, pants, and Chuck Taylors. His therapists say he is really working hard on his speech therapy, resp. therapy, physical and occupational therapy, etc. The kid's a fighter, and they know it. They also said his flexibility is great, and improving every day. I noticed this as well; his hands are more relaxed, and he is gaining more control over his arms and legs (he is really working on lifting and moving them _with_ you, not just remaining limp) each day. He brightened up at the Oscar Update, and seemed pleased that his "film of the decade" American Beauty, had taken top honors--who'dve thought the Academy would approve of the ol' shower scene?? Anyway, a very encouraging sign arose when Mikey began coughing. He has been learning to breathe without his trach tube (he's working on breathing though his nose and mouth), and when he coughed, it seemed that he was drawing breath into his nose and mouth as well as through the tube (if that's possible). In doing so, he made some actual sounds!! Of course, they were kinda wheezy sounds. But it was Mikey's voice!! Not since the advent of the Sex Pistols has a little phlegm brought so much joy... M.A. Ricciardi USA - Monday, March 27, 2000 at 19:26:43 (EST) March 25, 2K - Saw Mikey sitting up and all spiffed up in his plaid pj's and high top sneakers. He's got great movement in his neck and will totally turn to whoever is talking to him. Brian, Cat and I were completely blown across the room when Mikey began on making noises through his throat. I was giving him some water on a spongy thing (they won't let him drink yet until they are sure he can swallow properly) and asked him if he wanted some more.. "More" came out of his mouth with a weird gasp. We all almost fainted. He is trying to make more and more sounds which was the first time he has done so since the stroke. We had him laughing up a storm telling him stupid stories and stuff which totally tired him out quickly. It was way excellent to hear even the softest squeal coming out of his mouth.. give it a few more weeks, he'll probably be chatting again.. Its tough to be patient when you miss someone's voice so much... Right now, anything he tries or gives us is a mega gift.. Its so wild.. Mikey's teaching us the greatest lesson of to never take ANYTHING for granted.. appreciate everything you have, even if you think it sucks... Bonne Voce Deedle!!! Keep on Keepin ON! tina bugara <tina@eink.com> medford, ma USA - Saturday, March 25, 2000 at 22:23:35 (EST) March 23, 2K - Mikey had a banner day. His trach tube was reduced to a smaller size in order to prepare him for total weaning from it. I spoke to his respiratory therapist who said that he has a great cough and probably doesn't need the trach for much longer. They will be capping the trach to teach him how to breathe normally out of his nose and mouth again, and then ease him back into using his vocal chords (which like any muscle, atrophy to a point when not used). He was sitting up and looking great but tired from his trach trade. Read him the whole latest Entertainment Weekly cause you know how he likes to keep up with the "industry". He really seemed into the Oscar stuff. Left him listening to Matthew Sweet's 100% Fun CD. Its good to see him relaxing more, responding more and ALIVE!!!!!!! tina bugara <tina@eink.com> medford, ma USA - Thursday, March 23, 2000 at 21:00:00 (EST) March 22 - I saw Mikey this evening--my second visit to Spaulding. There is a really good culture at this place--they are clearly dedicated to intensive rehabilitation, so I think we are going to see some real progress once Mikey adapts to his new surroundings. One of the things that I have noticed over the last several weeks is that (and perhaps this is common to stroke survivors) any type of change in his environment results in a temporary "setback" of sorts --his temp goes up, and the clenching (spasms) seem to come on--Tina attributes this (and I think, correctly so) to nervousness. It seems that when Mikey is stressed or nervous, his muscles clench up. But as Brian mentioned, the medicine is helping a lot with that, and Mikey is able to relax his muscles on command, as well as turn his head to one side or the other. Having Mikey back in Boston is key to his recovery: the physical proximity to the site of his "regular life" is, I think, important to the emotional closeness to normalcy that we will all help him pull towards. Of course, it makes it easier to visit him, too. Which brings up a concern, and I don't want to offend anyone who wants to go see him--the visitors list is still pretty small, and not for reasons of creating some kind of in-group among Mikey's friends. The issuea are this: a too-heavy influx of visitors will cause undue strain on Mikey, the staff, and Mikey's roommate. If everyone who knows The Dee showed up, I doubt Spaulding would have the space to contain us all--and they've got 10 floors! A more pressing concern is the state Mikey is in right now. He is in a very vulnerable position: unable to speak, tiring easily, and understandably upset and scared about his present condition. Before going to visit him, I ask that everyone ask themselves if they were in the same position, would they feel comfortable receiving lots of visitors? He'll be able to see a lot more people once he's made more progress. Again, I don't mean to offend ANYONE--I apologize in advance if I have done so--I'm just trying to think of what Mikey would want, since he can't speak for himself right now. Also, sorry if this update is longer than War and Peace. M.A. Ricciardi USA - Thursday, March 23, 2000 at 20:38:30 (EST) Mikey looked good tonight. Then again, anyone getting out of the funeral parlor waiting room that is Shaughnessy-Kraplan Rehab would look good. He was almost totally out of it by the time Tina and I got there. I think he was a bit dosed, but fatuige will be common now that he's getting real care. Intensive therapy, rehab, the whole magilla. Partially due to the drugs, Dee is no longer having spasms, and his arms were flat and stable. He only had one coughing fit, and his temperature went down with a good cold compress. Dee turned his head upon command, as well. The slow grind continues, but he's in the best hands in the world now. I look at the guy, and I can see that he's on the verge of some kind of breakthrough, like when the trache tube comes out, Dee will emerge. Maybe not unscathed, but more than he was a month ago. It's only been six weeks. Unreal. Hope continues in slight increments. Brian Westbye <brianwestbye@hotmail.com> Medford, MA USA - Tuesday, March 21, 2000 at 22:13:28 (EST) March 20, 2K - Well, Mikey is finally at Spaulding Rehab in Boston. He's got this great view of the Museum of Science and the bridge right out his window. He had a very full and tiring day being seen by doctors, therapists, nurses, social workers, - busy, busy, busy - the way rehab should be (well, at least in my mind). Mary came up and we decorated almost every inch of space in his room with cards, pictures, signed tube socks from Heidi. Mikey slept through it all. His temperature was up again, but nothing a little cold water couldn't bring down a bit. He's coughing a lot less and one of the imminent respiratory therapy goals is to wean him off of his trach tube so he can swallow (FOOD!) and work his vocal cords. He will be evaluated for the next few days before embarking on a consistent therapy program. Left him listening to the Sheila Divine - probably dreaming of the last time he saw them play live....Patience Mikey, we'll get you back out to the Middle East in due time... tina bugara <tina@eink.com> medford, ma USA - Monday, March 20, 2000 at 22:44:31 (EST) March 19, 2K - Mikey seemed very zoned today. I think his fever is up, however getting any answer from a nurse was futile. Sponged him down with ice and he became a little more responsive. MayAnn and Sandy came to see him. His eyes lit up at seeing Sandy his favorite Heidi band member. Tomorrow is the day for Spaulding. Lets all keep our fingers crossed. New Day Rising..... tina bugara <tina@eink.com> medford, ma USA - Sunday, March 19, 2000 at 18:01:10 (EST) March 18 2K Mikey is still at Shaughnessy. We have tentative liftoff date for Spaulding on Monday, unless some other bonehead gets in the way which will make us all very very angry. Mikey was sitting up in his chair when Brian, Cat, Smudgie the kitty, and I arrived. Smudgie proceeded to reveal her unwaivering affection for Mikey by curling up in his lap and rubbing her head all over his hands. Mikey was smitten with his favorite kitten. Mary came to visit as well. Mikey blew all of us away by moving both his left toes and right toes on command (which he hasn't done on the left side in over a month!).. We kept asking him to do it over and over again, which he did, so we kept kissing him on the head. Brian even went as far as flashing his oh so buff chest at Dee in encouragement. Positive and extremely alert reactions all over the place today. We are all "hold[in'] on hope.. its the last thing thats holding [us]". Tried to get him the hospital vcr so he could watch "Blazing Saddles" and "Young Frankenstein", but lo and behold.. the hospital couldn't find it. Makes one have hope in homeopathic medicine and home schooling. One more day of Salem and then onto bigger and hopefully better things. tina bugara <tina@eink.com> medford, ma USA - Saturday, March 18, 2000 at 20:17:21 (EST) March 17 -Saw Mikey this afternoon--his mood was a bit low, mainly due to the postponement of his transfer. He was coughing a bit more than I've seen lately, but not in alarming sense. He seemed tired, but alert; his head now moves to face you when you speak to him from one side. His focus seems to be improving, and he is gaining more control over his hands and arms each day. I was able to make him laugh several times (he always was my best audience), and I noticed something: despite the upsettingly weird surroundings and context that time spent with Mikey now takes place in, he looks more like himself than ever when he laughs. It's a pretty great sight. M.A. Ricciardi <parkdale@mindspring.com> USA - Friday, March 17, 2000 at 21:39:58 (EST) Hey Ho, Let's Go! Spaulding Rehab Boston is the place, tomorow is the date. After a few perfunctory signatures, the ambulance will be leaving Shaughnessy-Kaplan Rehab in Salem for the greener pastures of Spaulding. Fresh air! Copley Square! This is totally the best thing for our Mikey; the best clinic of it's sort in the world. When Tina and I got to Shaughnessy today, The Dee was up in his wheelchair, stylin' in his Yo La Tengo shirt and some plad jammie bottoms. He was a bit hot, but a good iced facecloth treatment took care of that. Best news of the day (aside from the move)? Dee was actually...laughing. Yep, laughing. For the most part, he was fairly tired, and as such a bit unresponsive, but when he nodded out a bit, Tina and I combined on an onion-breath tagteam. Dee looked a bit mortified (deservedly so), but it worked. He turned his head a bit on command, as well. Baby steps continue. We'll do it again after the move. Thanks to all for your support, concern and love; it's mutual. b Brian Westbye <brianwestbye@hotmail.com> Medford, MA USA - Thursday, March 16, 2000 at 20:58:15 (EST) March 15 - Saw Mikey this afternoon--his temperature was normal, and he was alert and responsive. He's still mouthing words, which is encouraging yet most frustrating, since I don't read lips! He's frustrated too, as one might imagine. His mood is still pretty low, which causes him to withdraw a bit and seem reluctant to respond. We discussed this (i.e., I lectured him in my best gentle yet firm manner, usually reserved for my 9th graders) that withdrawing from visitors and hospital staff sends a bad message and makes people worry. He agreed. On a positive note, he is gaining more control over his motor responses each time I see him, and was looking fresh-n-clean after his bath. I read to him, put some moisturizer on him, gave him a hand massage, and put him to bed. M.A. Ricciardi <parkdale@mindspring.com> USA - Wednesday, March 15, 2000 at 20:30:06 (EST) March 14, 2K Just got back from my Salem jaunt. Mikey was sitting up and dressed (complete with Chuck Taylors) in his wheelchair. He looked kind of zoned but totally perked up when I shoved my face in his. NO FEVER TODAY!!! 98.9 degrees.. He looked great and was really responsive to my innane chatter. I asked him a really weird question. In doing my research, I found that most people with brain stem injuries have double vision. I asked Mikey twice (no pun intended) if he saw only one of me or two. He said one (well, blinked one) which I think is a really positive sign since I don't think his vision has been checked yet. Still working on the Spaulding move. Its all red tape and insurance forms from here. Hopefully we will know by the end of the week. Left Mikey snoozing to "Semisonic" since he introduced me to their sounds and still raves about them.. Mikey loves his "pop" - even in a locked-in state... Music heals the soul.. Mikey's soul is still rockin'. Tina Bugara <tina@eink.com> Medford, MA USA - Tuesday, March 14, 2000 at 21:13:31 (EST) Well, I went to see Mikey on Saturday--a gloomy day outside the hospital, and truth to tell, not much better inside. Mikey was pretty warm when we got there--running a temp of about 102 degrees--which is lower than it's been, but still higher than I li ke to see. Anyway, we (Linda Viens, Sandy Monticello, and I) sponged him until he cooled down. He was in and out of alertness, seemingly zonked from the fever, or perhaps the dreariness of the day, or both. What I think is necessary for us all to bear in mind is that there will be good days and not so good days. We all know we are looking at a lengthy recovery process, and part of that is accepting that there will be times when Mikey's not showing us the great progress he's already made. Please don't thin k I'm preaching to you all when I write this; I write these words to remind/comfort myself as much as to inform everyone out there. The times that he was more alert, he was pleased to see us, and I did see a lot more control over his muscles than I saw th e last time I was there. He still has the muscle spasms, of course, but he can relax out of them and let his arms rest down on the mattress upon request. And let me tell you, years of drumming have left him with some impressive biceps, so trying to get hi s arms down before was more than a challenge! The PT guy who worked with him on Friday said Mikey has very good muscle tone, and when sitting up, has none of the slackness or head drooping seen in many of the other stroke patients there when they begin th eir PT. So he's got youth, strength, determination, and the Sheila Divine on his side--the PT guy's a big SD fan, as is the Dee, so they played the CD during the session and got good results. Let's all keep up the positive energy; better days are coming.< /b> M.A. Ricciardi <parkdale@mindspring.com> Somerville, MA USA - Sunday, March 12, 2000 at 18:55:21 (EST) Mikey has a bit of a neurological fever again. Brian and I arrived at the hospital and his temperature was 101.7. Mikey's temp went down two whole degrees after we sponged him off with iced facecloths for a good two hours. He seemed to be really ti red tonite, but perked up when we massaged his feet and really perked up when Brian gave him a kiss on the head. We are in the process of trying to move him to Spaulding Rehab Hospital in Boston, because their rehabilitation program is more intensive and we feel that Mikey could benefit more from the services they offer. Will keep everyone posted on if and when he is moved. Tina Bugara <tina@eink.com> Medford, MA USA - Friday, March 10, 2000 at 23:33:58 (EST) March 6, 2000 - Mikey had a full day of physical therapy, respiratory therapy and occupational therapy which totally knocked him out by the time I got there. He is totally off the ventilator, breathing and swallowing on his own..(readying himself for a nice greasy pork sandwich for when he gets his trach tube removed.) Physical Therapists are working with Mikey three times a day to rebuild him into the new Lester Burnham (American Beauty reference). As Mary Riccardi says "they have the technology, t hey can rebuild him." Read him Entertainment Weekly and showed him all the great pics... he especially liked the one of Angelina Jolie that I taped above his bed onto the ceiling. I figured that if he's gonna dream about someone, it might as well be her ... more later.... Tina Bugara <tina@eink.com> Medford, MA USA - Monday, March 06, 2000 at 21:39:45 (EST) |