Hello Everyone. I know we always say this but… sorry it’s been soooo long since we have given an update.
We went to Philadelphia today so Aaron could get an x-ray of his neck. He was having quite a bit of pain in his neck last week and his physician at Kennedy wanted his neurologist to check it out and confirm that he is able to participate in rehab in May. We got the results almost immediately today. His neck has healed nicely and his pain is not from loose hardware or any areas that might not have healed. Because the pain is intermittment (he can go weeks without pain), we believe that it is probably caused by certain positions or not changing position often enough. We will be keeping a close eye on that as Aaron seems a bit resistent to pain meds and can’t get much relief when it comes.
We are very excited about getting back to rehab at Kennedy Kreiger beginning May 3rd. Aaron will be there for 2 weeks and hopes to get in the pool this time. We have been stimming his muscles faithfully since his last visit to Kennedy and have high hopes that he will make even greater progress than his last visit. Since his last visit he has been able to move his thumbs, most of his fingers, turn his feet inward when lying down, and move his right knee inward when seated. These are all small movements and he can’t do it with 100% consistency yet, but they are assuredly intentional movement.
Aaron has to work long and hard to get a little gain, so please continue to pray for and encourage him. It really is important and means so much to all of us. 🙂
What a fantastic week! It was everything we who were there with Aaron (Woody, Gina, Diane, & Denise) were hoping for and more. Aaron was surrounded with so much hope, energy, and positive attitudes from everyone he was in contact with this week; it was truly refreshing and energizing for all of us. His therapists, Kristen and Erin are obviously well qualified and take Aaron and his goal to someday walk very seriously. We didn’t have to listen to any speeches about the high level of Aaron’s injury and never heard the words can’t or won’t. Aaron worked very hard for 5 hours every day and can’t wait to get back there for 2 weeks beginning May 3rd. We were all very pleased to meet Dr. John McDonald (see pic below), the director of the International Center for Spinal Cord Injury at Kennedy Krieger. He stopped and talked with Aaron a few times during the week and talked with him about his progress, both present and what he believes he can accomplish in the future. He also took time to work with Aaron on moving his hands and fingers. Much of the week was spent using electrical stimulation on various muscle groups, riding the bike using E-Stim, and standing up in the stander/glider. By the end of the week he was able to move the “arm skate” (in the video on a previous blog) with his triceps and biceps on his own without E-stim! Yesterday he showed us how he can move his left thumb and today he was moving his right thumb. Not big sweeping movements, but definately controlled movement! We will be getting an E-stim unit for use at home soon, eventually a stander, and then a stim bike so that Aaron can work hard every day, not just at Kennedy. 🙂
There were 3 little girls at rehab all week that had a princess party on Friday and Aaron was invited; he got a necklace and we got to eat some cupcakes (see pic below). 🙂 I’m guessing that they were aged 2 to 4 and it was just amazing how focused and hard working they were. They really touched our hearts. 🙂
We arrived home on Friday evening, all of us pretty well beat! Thanks again Diane for staying the night so we could sleep. Only one nights rest and you were on night duty again. You’re a sweetheart! 🙂
The above video is fairly large and will take a minute or two to load.
Here are a few pictures of Aaron’s day at Kennedy Krieger on Monday and the Friday before at home. Aaron is having a great week at Kennedy. They are as aggressive as we had hoped and Aaron is working hard. They have been using Electrical Stimulation on his muscles to make him move and to re-teach his body that it can move by stimulating peripheral nerve responses. His therapists as well as Dr. McDonald (the director at Kennedy) told Aaron that his response to E-stim is classic textbook, and if they were going to grade his response to it, it would be an A+!!!! Hopefully we will have some more pics soon!
You can click on the above link to watch video of Aaron. The video is sideways, but I can’t figure out how to fix it yet. It’s still fun to watch. Aaron’s arm is moving with the “skate” with the help of E-Stim. When he did it the first time he lifted the entire skate off the table, hence the 5 lb weight on top of his arm in this video. 🙂
Aaron had his evaluation at Kennedy-Krieger today. We arrived shortly after 9 am and wrapped up shortly before 1 pm. His physician was very well prepared and very thorough in his evaluation and examination of Aaron. His attitude was one of hope and lofty goals (not an attitude we have encountered very often). His recommendation for Aaron is to begin therapy at Kennedy in about 6 weeks. He wants Aaron to further strengthen and stablize his breathing first and also begin “traditional” outpatient therapy close to home as a “warm-up” to his Kennedy program. He talked like their program may really kick Aaron’s butt; Aaron is up for the challenge! Everything about Kennedy from the staff to the facility itself was just very impressive and we all felt very encouraged when we left there today. In the picture below on the wall behind us are the words “In my mind I can do anything”. There were encouraging words like that at various places in the building.
Jaime was in Myrtle Beach for the past 4 days. Please keep her and her family in prayer as her grandfather Paul is in the hospital as a result of complicatons from his diabetes. She was unable to be at Kennedy with us today, but she is here at our house now and she and Aaron are cuddled up watching a movie. A perfect ending to the day. 🙂
One of Aaron’s nurses was with him all day today. When I returned home from work around 3 p.m. she reported that Aaron was capped (his trach completely sealed off) all day again; he has been doing this for almost a week now. He’s breathing normally all day through his nose and mouth with no extra oxygen. The new pulmonologist that we saw last week directed Aaron to use his spirometer at least 10 times every hour while he’s awake; this is how Aaron can strengthen his lungs and the muscles around them in order to eventually wean from the vent and get rid of his trach. We’re really seeing the results of that! The even bigger step that was made today was that as of this writing, Aaron has not had to use the coughalator, a machine that helps him to cough up secretions, nor did he need to be suctioned. Suctioning consists of putting a thin tube down his throat via his trach to suck out excess secretions that he can’t cough up. It also creates some additional secretions because it is invasive… a real catch 22. This is huge as it’s the first time since his accident that he has not had to coughalate or suction almost first thing in the morning. It wasn’t that long ago that he could spend quite a bit of time especially in the morning trying to get his lungs cleared using these aids. He was also able to move all 3 balls upward on his spirometer today. Awesome! We’re all soooo proud of your determination Aaron. Keep it up!
Hello Everyone. Sorry for the long silence. We have been very busy the past couple of weeks with getting into the swing of things at home and the upcoming holidays. Aaron is doing quite well. He is enjoying home cooked food and getting stronger every day. We are working in conjunction with Lehigh Valley Respiratory to continue the process of weaning Aaron from the vent. He is doing much better with the spirometer which is an instrument that measures the strength of his breaths. In the past few days he has spent several hours each day on just room air (no vent, no oxygen) and has done quite well.
Aaron, Jaime, & Tory went Christmas shopping at Target last week and had lots of fun. Aaron also did some shopping a couple of days ago without Jaime! 😉 Aaron, Jaime, & Tory will be leaving for Malvern today to spend Christmas Eve with Sue and Carl and family. Please keep them in your prayers as the weather could be a bit of a challenge. They will be returning Christmas day (weather perrmiting) to celebrate with his Dad’s family and Sunday they will be celebrating with his Mom’s family.
Aaron has his initial evaluation at Kennedy-Krieger on January 11th. For Aaron and his family, it can’t come soon enough, but we are all very excited and can’t wait to get to work at some aggressive physical therapies. Aaron is especially ready to get to work!
We will try to do better at keeping all of you up to date. We so appreciate all your support and prayers. Merry Christmas!
Aaron was still a little under the weather today, but did manage to do about 3 hours off the vent anyway. He really seems to have gotten over his fear and apprehension about being off the vent; he just needs to get past whatever bug he’s battling now so he can make greater progress. 🙂 Isaiah and Mandie stopped by for a while in the early afternoon :), he got to ride the hand stim bike which he always likes to do, watched a little baseball, and wrapped up the afternoon with an appetizer from the Olive Garden. 🙂
Woody, Jaime, and I met Aaron at Hahnemann Hospital for his bronchoscopy today. It wasn’t that long ago that packing up and moving to another location was a stressful and exhausting affair for Aaron, but not today; the trip over and back as well as the test went well. They had a hard time getting Aaron sedated so he was actually very awake for the whole thing. He said he could see the screen that displayed footage as they inserted a camera into his lungs and said it was really pretty cool to watch them clean out his lungs. What they extracted was very white so at this point there is not much concern about infection, but they are testing it to make sure.
Upon returning to Magee, he had 3 solid hours of therapy and even squeezed in a trach collar trial for about 45 minutes (good considering how busy his day was). We just really had a good time laughing at ourselves, each other, and just getting a little silly sometimes. Below is a picture of Aaron in the gym during physical therapy.
Aaron was off his vent for 5 hours straight today! Until today Aaron hasn’t done anything or gone anywhere while off his vent, but today while he was off his vent, he had 1 hour of therapy, he went down to the 2nd floor to check out the cafeteria and porch, went back upstairs for a make-up therapy session, and he even ate a little bit near the end. He was exhausted when he finished; I think both mentally and physically. It’s hard for us to really even imagine (much less know) what Aaron is really going through, but I can tell you that there is a lot of fear and anxiety in anyone who is weaning from a vent. Imagine that you are having great difficulty breathing; you just can’t get a deep breath and you feel like you’re going to suffocate. Then someone gives you a machine that makes it much easier to breathe; its comforting and makes you feel safe again. Now imagine that you have to give that up and you have to work for every breath you take, and even though you’re not really suffocating, that’s what it feels like. That’s what Aaron did for 5 hours today. If he can do this every day, he will gain strength and it will begin to become easier. I thank God he has been able to come this far. I ask that you pray that Aaron will be able to put his life in the hands of God and overcome his fears and to quote my cousin Chuck… soon toss that vent into the weeds!
Every Wednesday in group therepy at 11:00 a.m. they set goals for the coming week. Today Aaron set his goal of being off of the vent for 1 hour & 30 minutes by next Wednesday. By 4:30 he shattered his goal. Aaron did 2 hours and 4 minutes off the vent today, AND he didn’t sleep afterward! Woo-hoo! Go Aaron! 🙂 Oh yeah, and that was 2 hours straight, not broken up into 20 minutes here and there!
Aaron passed the “pizza test” today! He just had to eat a few bites of pizza successfully, which he did easily in order to get “free reign” over his diet. It was about a week ago that he was allowed to begin eating food. He started with it pureed (lovely experience; he had to read the menu to figure out what exactly he was eating :)). He graduated to ground food a few days later. A little better. Today… no restrictions!
As you can see Aaron finally got the long awaited shave (yesterday). Did all of you have as much fun voting and watching the results as we did? I love the pic Jaime; thanks for sending it. 🙂
He no longer has an IV as of yesterday which allows more freedom of movement in physical therapy.
Aaron also spent time on the tilt table today with good results. What happens is he gets strapped to a table and they slowly move him into a more vertical position. The purpose is to increase his tolerance to being in the standing position which helps to normalize his blood pressure and circulation. It’s good for his bones and may stimulate nerves. It’s also good to help expand and strengthen his lungs which brings me to “the vent”. Aaron spent a total of 1 hour off the vent today. That’s great Aaron. Keep moving forward. 🙂
Whew! Well, I hope I covered it all!
Hello fellow Aaron supporters. 🙂
It was a full day at Magee today. Aaron had his 1 month follow up visit with the doctor who performed surgery on his neck the day of his accident. That was in Atlantic City; amazingly the doc’s office is less than a mile from Magee. Aaron made the trip via ambulance with Jaime (somebody pulled some strings for her!). The doctor said his neck seems to be healing fine so Aaron won’t need any additional surgery at this point. Aaron was hoping he would be able to “lose” his cervical collar today, but it just wasn’t meant to be; the doctor wants him to wear it for another month.
Please continue to pray for Aaron as he has developed another fever. The Magee staff are in the process of doing various tests to find the cause; we’ll know more in a couple of days. Aaron is very tired from his therapy, traveling today, and his fever. Hope to have him back making his own posts soon.
Hello all. Got a few pics of Aaron today. Aaron and his dad Greg (aka Woody) on the roof at Magee. You can’t tell from this pic, but on the roof level, there’s a library, pc’s, ping pong tables, picnic area, garden area and a car. I have no idea why there’s a car on the roof! Anyway, Aaron did his 2nd therapy outside on the roof today. 🙂
The 2nd pic is of Aaron with his friends Brian Sullivan and Greg Rittenberry who visited with Aaron today.
The 3rd pic is of Dave the respiratory therapist (I confess I don’t know Dave’s last name!) and Aaron. Dave has been working with Aaron to get rid of his ventilator. Dave said Aaron really worked hard on that today and made good progress. 🙂
We’re here in Aaron’s room at Magee getting multiple laptops setup for the Fantasy Football Draft tonight at 6:00. Aaron & Woody are coaching a team; Jaime & Marie (Jaime’s roommate) are coaching a team, and Brian Sullivan is here and will be drafting his team tonight with us. Aaron has a loose schedule today as far as “Magee stuff”. Yesterday, he had physical therapy in the gym. They completely re-evaluated him since he was away for a week. His therapist said he had really good flexibility and she was able to feel muscle activity in his right leg and deep muscle activity in his right arm. She was touching his left side fingers too and he could feel that as well. He will be back into a routine again tomorrow. Bret, Lexie, and Kat-lyn just arrived. It’s a full house! Aaron’s smiling and laughing. 🙂
Jaime did a test on Aaron today! She squeezed his fingers one at a time and asked him to identify which one she was squeezing and he got it right! In case you’re wondering he had his eyes squeezed tightly closed. 🙂
Aaron is very anxious to get back to Magee to see what else he can do. So far his tests are coming back with good results so PLEASE pray fervently that his fever will go away and stay away so he can move asap! In fact pray that NOTHING will delay his move back to Magee.
Also a side note… we were reading picture captions in Adam Taliaferro’s book (he was a Penn State football player with a similar injury and prognosis as Aaron’s and walked out of Magee in 10 weeks!) and the one showed him and his family in his room on the day he was discharged from Magee. You’ll never guess what his room number was. That’s right… 543… Aaron’s room number. Pretty cool, huh!