Aidan's+Condition

Congratulations and welcome home to Aidan. Emily · **This page can be used to keep track of Aidan’s condition. If you edit it please leave the date and your name. All posts are from Brenda unless noted otherwise:

May 20: Where has the time gone? We adjusting to our new normal. Steve has devoted his week to getting Aidan into his new routine. The Sunnyview appointments and tutoring are going well. Aidan is getting around in the house pretty well and gets better each day. Just one mishap, which was a lesson to all of us that even small steps can present a challenge still. It is wonderful to have Aidan at the dinner table, on the couch, in his bedroom, and just part of the family again.

May 10: Aidan comes home on Sunnyview on Friday and begins the next chapter of his recovery. Steve and I are trying to figure out how to manage daily outpatient therapy appointments that will continue at the View (as we now refer to it). The house has been adapted with dual handrails on all stairs, grab bars in bathrooms, and a ramp system that will be installed on Friday at the back door. More difficult is getting the rest of the kids in the habit of leaving clear pathways for Aidan to travel throughout the house. I foresee a lot of pleading and crying (from Steve and me, that is). Thanks to all who have visited Albany Med and Sunnyview during the past two months. Please plan to visit us at home too.

April 30: Cards to home or Sunnyview (belated or on time) are welcome. Aidan is especially fond of monkey cards (family tradition, long story), Chuck Norris cards, or anything else that is funny. Please NO GIFTS.

April 30: Aidan’s tests this week were inconclusive as to whether his transverse myelitis is a single episode or the first manifestation of a more debilitating diagnosis. Steve and I are devastated that the MRI did not show more positive and conclusive results. His neurologist referred him to a specialist who will now be involved in his case. Aidan will likely be discharged from Sunnyview in mid-May and then will switch to daily outpatient therapy. His therapists are astonished by his strength, in all senses of the word. He is doing well. Aidan is in excellent spirits and is very proud of his progress. He continues to get around in a wheelchair, but expects to start using a walker for short distances such as maneuvering in the house. He started using forearm crutches in therapy but does not have the strength yet to use them outside of that setting. He went to the movies last Saturday and requested a visit to the barber tomorrow. On Sunday, we will all go out for dinner to celebrate his birthday (and Grandma’s). We are working with various contractors to provide for more extensive accessibility in the house in time for his discharge so he has as much independence as possible at home.

April 18: No word on a discharge date and we are hoping there won't be one scheduled for another four weeks or so. His therapy sessions continue to go well and he makes measurable progress, a critical determinant in whether he stays or goes home. Had a nice dinner with Aidan tonight at home and everyone enjoyed time at home. Lina is starting to verbally wish for Aidan's return home each day. He needs to remain in the hospital for the best treatment but it's definitely wearing on everyone. Steve and I are now focusing on paperwork -- for insurance, school, all kinds of details. It keeps us occupied. Thanks to all of you who seem to understand when we are up for talking about Aidan and when we can't. We have also come to the accept the likelihood that he will not return to school this academic year even if discharged in the next couple of weeks.

Apr 15: Not sure where the last week has gone but here's an update. Aidan continues with all his therapies here at Sunnyview. He continues to make steady progress. The rate of recovery is steady but certainly agonizing for a boy who just wants to resume his normal activities. We all try to focus on the victories which are reported by his therapists. One friend pointed out that Aidan has already progressed beyond the scary statistic on the NIH page describing transverse myelitis; one third get no recovery, so he is well beyond that. Aidan came home for a couple hours on Saturday and Sunday (a few folks happened to see him while we were outside enjoying the sunshine). On Tuesday, he was home with his therapists who were evaluating the house for accessibility. Aidan doesn't like to talk much about his recovery, so I will respect his privacy and stop here. He did have some fun when he was allowed to use some kind of modified three-wheeled bicycle that works with hand cranks. He was able to take a spin outside.

Apr 7: Aidan's physical therapy now includes using a walker with a brace on his right leg. He is excited about this progression. It's the beginning of this new phase of therapy. He is fighting off a blister on his right foot now. Many of you have asked about the visit home on Sunday. It was a mixed blessing. It was wonderful to have Aidan at the dinner table but it was a sober reminder of how much more recovery we want in order for Aidan to have the full run of the house again. The widened doorways were a huge help (thanks to Jim Downing, contractor extraordinaire!) but provided just a smidgen of accessibility that Aidan currently needs. Aidan did make it to the couch for a while. We waived the "no food on the new sectional sofa" rule just for him!

Apr 2: Another reminder of the complexity of Aidan's condition. On Wednesday he developed a large blister on his left heel, the equivalent of a bed sore. It's being treated with various approaches, including the infamous Waffle boot (www.waffle.com -- not a joke!) and now the heel cup. More annoyances for Aidan. Today in PT, he practiced transferring from his wheelchair into our Honda Fit in preparation for a home visit for a few hours on Sunday. Yahoo!

Apr 1: For OT today, Aidan had an excursion to Stewart's, just a couple blocks away. It was a rigorous arm workout wheeling over rough terrain, but got a mint chocolate chip cone as a reward. Also had more pool therapy. Aidan's physical therapist is pictured in the Sunnyview ad that was today's Times Union (Food section!).

Mar 31 : Aidan expressed tonight that he welcomes visitors of all ages. Feel free to join Aidan and his mom or dad in the cafeteria between around 5:30 - 7 pm any evening. This is a nice place to visit, have a cup of coffee, ice cream, etc. (Dinner service ends at 6:30 pm but there are vending machines nearby). There are plenty of seats and it's comfortable, and not overly institutional. There is a very nice outdoor courtyard right off the dining area too; check for us there in the coming days when great weather is predicted.

Mar 29 : Aidan had his first foray in the therapy pool today. He's getting a full range of treatment at Sunnyview. Days remain long. Keep texting. We're having three doorways on the first floor widened for ADA accessibility in hopes that Aidan will be able to come home for a few hours on a Sunday sometime soon and can have access to most of the first floor.

Mar 27 Aidan has some therapy this morning (Saturday) and may have tutoring this afternoon. If you are interested in visiting on Saturday, please call me or Steve so we can let you know if he will be available (or you'll have to hang out with us until Aidan's free!). Sundays are completely open. We will have dinner together as a family on Sunday, but visitors are welcome to join us during dinner (it's the usual Morse mealtime chaos). We'll be in the cafeteria dining room.

Mar 25 Aidan is in good spirits. He is making steady progress and his therapists love him. He is very motivated.

Mar 23 Aidan requested dorm pants, T-shirts, socks, and slippers for tomorrow. His occupational therapy has prepared him for this new wardrobe. It's progress.

Mar 21 Aidan has emerged from all his food poisoning symptoms and is ready to hit it hard in therapy on Monday. He greatly enjoyed visitors on Sunday. Keep texting him! **

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 * Aidan is ready for visitors again. Visiting hours at Sunnyview are 1 - 8 pm on weekends and 4 - 8 pm weekdays. It's about a 30-minute drive from Albany. Here's a [|link with interactive directions] Be sure to select "Sunnyview Rehab" as the facility. He's also texting again so feel free to connect with him by cell phone. **======

March 18 - Karen Driscoll Address for Aidan Morse Sunnyview Rehab Room 366 1270 Belmont Ave. Schenectady, NY 12308

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 * March 13, 2010 Emily: Aidan has been diagnosed with transverse myelitis. My understanding of it is very limited but what I figured out is that it is an inflammation of the spinal cord that results in paralysis (which is what has happened to Aidan). I think at this point there are many unanswered questions about his treatment and how long it will take, next week he will be transported to SunnyView for Rehab but they do no know how long he will be there. **


 * March 13th Pat Fahey added this link [] **