March 7, 2014
“There is more to a boy than what his mother sees. There is more to a boy than what his father dreams. Inside every boy lies a heart that beats. And sometimes it screams, refusing to take defeat…” – Ben Behunin
Charlie continues on his journey forward at remarkable speeds. We find ourselves asking what more to do to keep Charlie challenged. This week swimming at Caz College was added to his physical therapy routine. Charlie continues to quickly progress and expand his abilities, cognitive function and endurance. On one particular day this week, Charlie breezed through 3 hours of back-to-back therapy sessions, followed by an hour of homework and wrapping up with another hour of computer based memory building games. At the end of this very long day I asked Charlie how he was feeling. In reply Charlie simply stated, ‘I’m hungry, what’s for dinner.” He was quite surprised when I responded with laughter. The miles traveled to reach our current status seem but a blur. In speaking with one of Charlie’s doctors this week, I was caught off guard when the service provider reminded me that all of the things Charlie has accomplished to date are far beyond anything anyone could have expected or would have predicted. After I recovered from the shock of this stark reminder, the provider went on to explain that Charlie has every chance imaginable to journey beyond his current challenges completely. As I reflect back on those limitations originally presented as possibilities what I recall the most is the sound of Charlie blowing by those limitations.
Children are resilient and typically recover from these types of injuries better than adults. Scientifically speaking, a child’s brain has greater plasticity thus allowing the brain to rewire itself and heal. Beyond that, the best thing about a child is his or her innocence and never ending optimism. It is not in Charlie’s nature to place limits upon himself nor is it within his wisdom to know science would place such limits upon him either. In other words, in the world of Charlie each day is a new day and all things he can dream up are possible. There are no limits when you believe in yourself. Keep up the good work Charlie, you make us proud.
Well wishes and thanks to all for your continued caring, support and friendship.
All my best,
March 4, 2014
February 28, 2014
February 25, 2014
Vacation was definitely good for all of us! Raeny returned to school rested and excited for all the events that were missed due to the snow day Friday. Charlie went to his therapies today and showed them he retained the skills up to this point and improved on most of them. Charlie has begun arguing with his sister, his father and me–and we are thrilled! Not only because this is more of what we are used to from Charlie, but also because it takes a certain amount of logic, energy and persistence to be in an argument.
Charlie’s stamina and his desire to initiate activities and ideas are increasing. Charlie has definite preferences not only for “what” but also now for “how” and sometimes even “when”. Some of Charlie’s preferences are the same as they always have been, and some are new–not much different from his sister who seems to change her “favorite” almost as soon as we recognize it!
Kevin and I want to again extend a heart felt thank you to everyone for their support. We continue to be grateful for the many ways you have all showed you care. Daily we are assisted, guided and held by your efforts.
“Life is not a solo act. It’s a huge collaboration, and we all need to assemble around us the people who care about us and support us in times of strife.”
I would add to the end of the quote “and can celebrate with us the small steps that keep us moving forward!”
February 22, 2014
Hello Everyone! We hope you all had an enjoyable school break.
Charlie, Raeny and I took our yearly trip to Ithaca for a few days. We love to get away (without going too far!), swim in the pool in the winter and take in the other offerings that Ithaca shares.
This year held a little different anticipation for me as I had no idea how Charlie would react to seeing, much less swimming in, the pool. Before the break began, I showed Charlie pictures of the pool on the hotel website. I also showed him pictures from last year of he and Raeny swimming there. Charlie said he was excited to go swimming, and talked about what a good swimmer he is (which is true).
When we arrived at the hotel, we walked past the pool on our way to our room. Again, Charlie was right with Raeny in their determination to get to swimming as quickly as I would allow. The hesitation I was expecting was not there at all.
Finally (can you hear the kids sigh with relief????) we were ready to go swimming. When we entered the pool area I was the only one hesitating. I had to stop Charlie from jumping in! He graciously agreed to walk into the pool with me instead. Charlie got right in and loved it. Within minutes he was splashing, going underwater and laughing with Raeny. Raeny, in her infinite love and wisdom, stayed with Charlie and encouraged him in ways that were both helpful to him and soothing for me.
Over the course of that day and the next the kids went swimming 8 times! In addition to being exhausted, they had a lot of fun and figured out how to play in the water together in new and creative ways. Charlie showed me that while he is not the same in the pool, he still loves to play in the water. Much like everything else with Charlie, he has adapted and is moving on.
All of your prayers and wishes helped us to reach yet another milestone – Thank you and blessings to all of you.
February 17, 2014
Happy Winter Break everybody! Charlie and his family will be off having fun this week like the rest of you. The next update will be at the end of this week–and hopefully some pictures of how they spent their week.
February 14, 2014
“You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, embrace them with courage, faith and hope.” – Thomas Merton
As part of therapy and building reading skills, I presented Charlie with a list of quotes to read aloud. When I asked which his favorite was, he chose the one above. In his own words he explained to me that he chose this one because he does not always remember the schedule of the day, nor does he always know why we are making so many trips to Syracuse for therapy. But he is willing to do the work so he can get back to his Legos and video games and to feeling better. That pretty much sums up the week for Charlie; lots of therapy and lots of living the life of an 11 year old in between. Therapy is getting more and more challenging and demanding. We are working on reading, writing, math and memory. The focus is help the brain recall what has been learned in the past and to retain in memory what is being done today. This is currently very exhausting work for Charlie, but he continues to be determined to tackle the task at hand and to do it well.
In between therapy Charlie is thriving and continuing to improve. Time at home is beginning to sound and feel closer to normal. From the ‘sound’ perspective, there is lots of laughing and giggling between Charlie and Raeny as they interact and play. From the “feel” perspective the house vibrates and shudders as two young children run, jump and wrestle every chance they get. Irrespective of the past few months, Charlie is charging forward and enjoying every day. An attitude and practice I am learning to adopt for myself!
Thank you for your ever present support and prayers.
All my best
February 11, 2014
From Charlie: “I am doing good. I have been playing my 3DS and my favorite game is Bear Shark. I really liked doing the Gangham Style dance at Raen’ys birthday party. Grilled cheese is great for lunch and dinner.”
From Raeny: “Charlie has been wanting to punch me and has been getting back to himself and he is also getting stronger and stonger each day.”
From Rosemary: We are moving and loving it! Charlie is back to running and chasing–so fun and good for both him and Raeny! Charlie’s quickness is not limited to his physical activity. In therapies the most used phrase is “Charlie, slow down!” This applies to moving, thinking, counting, talking and anything else Charlie does. It is so good to see our Charlie rushing around again! The healing work is now focused on Charlie’s body continuing to remember its rhythm and on short term memory. As Charlie continues to work on more and more challenging intellectual skills, he is also working on higher balance, fine motor activity and continuing to strengthen the left side and core of his body.
We really appreciate that everyone continues to send thoughts and prayers. Also, the people we have seen in town have been very respectful of how we have asked everyone to interact with Charlie–we really appreciate this and love seeing Charlie become more comfortable in his interactions with others.
February 7, 2014
Charlie has had quite an exciting week. The week kicked off with birthday celebration for Raeny. Charlie enjoyed this almost as much as his own birthday just a few weeks prior. Next in line was yet another snow day! Although Charlie has not yet returned to school, he experiences the same snow day excitement that only children possess. Charlie and Raeny celebrated the extra day off by working on Lego projects, doing some arts and crafts and watching a movie. Over the last several weeks you have heard mention of many Lego projects. Believe it or not, Legos are an important part of Charlie’s therapy and come doctor recommended. The complex projects Charlie is building work his fine motor skills, builds strength in his hands and fingers, exercises his cognitive functions and improves concentration. On top of that, it’s just plain fun. Although I have to say, Charlie is never more serious than when he is hard at work on his current Lego projects. The largest project currently in progress is the Star Wars Ewok village boasting over 1900 parts. I enjoy helping Charlie with these projects almost as much as he enjoys building them!
Therapy continues on with as many as 8 appointments per week. The therapists are continuing to raise the challenge level each session. Much of the time is now focused on challenging Charlie’s cognitive and memory functions. Short term memory is a struggle and will take time to build back up. Charlie seems aware that his short term memory is a struggle but he takes it all in good stride and humor. His strength and ability to persist amaze those around him.
In between therapy sessions Charlie is enjoying getting out and about as we go about daily life. With our increasing presence in the community we have had the opportunity to visit with many friends. We very much appreciate everyone’s efforts to keep the conversations with Charlie light and general.
Our continued thanks for following our progress and your every present support and well wishes.
All my best,
February 3, 2014
Happy Birthday Raeny! Raeny has been able to work through the last few months with amazing resilience, resourcefulness, patience and compassion. She has been Charlie’s biggest cheerleader, teacher and instigator. We are grateful for the lessons she has taught us about unconditional love and holding your head and expectations high so that no matter what life offers you keep moving forward.
Charlie is looking forward to celebrating Raeny’s birthday with the traditions we hold in our family. Currently, he is holding his focus on Legos, Minions and his therapies (yes, in that order!). Today Charlie decided to supervise my cleaning of his turtle tanks–this means he had many comments about how I was cleaning the tanks along with observations about the turtles. It did not include, however, any actual cleaning of the tanks by Charlie.
As we are more out and about in the community, Kevin and I have noticed that sometimes people are not sure how to approach Charlie, or if it is okay to ask him about the accident, hospital stay, how is doing now, etc. In an effort to keep Charlie from being overwhelmed and to have everyone be comfortable, we thought we would offer the following information:
Charlie enjoys talking with people and hearing about how and what they are doing, though you may have to listen close as he is quieter than we are all used to.
At this point, we are NOT discussing the accident, hospital stay, etc with Charlie as he has not shown he is ready for this yet. We understand that everyone cares, and we are very grateful, but Charlie is also not ready to hear how people have prayed for him, held us in their thoughts, what a miracle this/he is, etc as that is too close to information he has not yet had a chance to begin to process. Also, while hugs help us all to feel good, Charlie is not comfortable sharing this with people he does not see regularly, so offering a handshake or knuckle bump would be more comfortable for him at this time.
Thank you and Blessings to each of you and your families!!!
January 31, 2014
After so many weeks of having so much to write about, I am pleased to say I find myself thinking a little harder about what to post in the blog this week. Stay with me for a few lines as I reflect on the recent past and then the present. The last 3 months have been a wild roller coaster embedded with fear, hope, progress, joy, frustration and thankfulness. It has been a high speed, white knuckle ride full of twists, turns and upside down loops bringing us to here–but what is here? This week was another week packed full of therapy and progress. Physically Charlie is growing quite strong and progressing closer to his normal abilities. In physical therapy this week he did soccer kicking drills with his therapist. The therapist quickly had to increase the distance between him and Charlie to minimize the chances of being the next submission to America’s Funniest Home Videos–hits to the head, gut or groin are always popular on the show. In occupational therapy Charlie demonstrated basic reading, writing and arithmetic skills. At home Charlie played multiple video games, worked on several Lego projects, tackled his sister, provided input to the blog updates, and complained about being woken up much to early in the morning. His exact words were, “Daddy, the clock says 7:21 it’s still dark out. Why are you waking me up?” Charlie had lunch at Dave’s Diner, breakfast at McDonalds, went to the drug store and the grocery store. He assisted with these tasks and also did some basic chores around the house. Although Charlie is functioning at a slower pace than we are accustomed to, he is completely present and engaged in life. He still has a long way to go and much work to do before he returns to full speed Charlie, but he is well on his way. So where is here? If you look back to the first few updates on our blog, ‘here’ is a million hard fought miracles miles from where we started. Here is just what the word states. Charlie is here!
So what’s next? We keep moving forward. There will be more therapy, more progress, more healing, much more thanksgiving, and most of all, celebrating life. Our journey and our story will keep unfolding. In time Charlie himself will take over updates. Until then we thank God and celebrate the progress Charlie is making.
Aside from updates on Charlie’s progress, we continue to offer our thanks to our friends and community. You continue to stand by us offering your help, encouragement and prayers. Not a day passes where someone does not ask if there is anything they can do to help. My standard answer is to continue to keep Charlie in your prayers. But now I am going to ask a little bit more of you all. Our story has been nothing short of amazing from the start. Charlie’s story has drawn followers from around the globe. Your presence, support and prayers have been powerful and have aided in Charlie’s success. Now I am going to ask we focus some of the collective energy on preventing our story from becoming someone else’s story. What happened to Charlie, although an accident, was preventable. There are plenty of opportunities all around us for such accidents to occur. Pipes, wells, catch basins, abandoned farm equipment, etc. These things are called attractive nuisances. They are eye catching and look inviting to a child, but often go unnoticed by the rest of us. They are also accidents waiting to happen. As we near the end of the what has been one of the coldest Januarys in recent history, and allow our minds to flirt with the hopeful thoughts of an early Spring, please put on your “must do” list to inspect your property and surrounding area. Call attention to and correct the attractive nuisances that could easily become the next preventable accident. Ben Franklin once stated, “An ounce of prevention is worth a pound of cure.” Working together we can make a difference by spending a few ounces on prevention.
All my best,
January 28, 2014
From Charlie: “I am doing good. Legos are fun, and they are what I am working on right now. The therapies at the hospital are going great–I like seeing the people there and doing the activities they have. I am looking forward to Raeny’s birthday party.”
From Rosemary: Charlie has made it his mission to brighten everyone’s day. He has a ready smile, laugh and wave as we walk through the hospital or the grocery store. He plays pranks during therapy, on Raeny and whenever he can think of one that will make us all laugh.
Charlie continues to progress through re-learning the many stages of development that were temporarily blocked by the accident. In every way, Charlie is doing an amazing job practicing and re-creating the connections his brain needs to function, thrive and be happy. Speech, movement, emotion, humor, creativity and logical thought are all becoming more natural and advanced at lightening speed. The therapists show Charlie something one time, he struggles with it, and by the time he does it at home he’s got it down!
Thank you all for your continued care and support!
January 24, 2014
“I might not be where I want to be, but thank God I’m not where I just came from. I’m ok, and I’m on my way!” – Unknown
Once again life is quickly settling into new routines. Ro and I have both returned to work on a part time basis while taking turns tending to Raeny and Charlie’s schedules. Charlie continues therapy and is improving rapidly. Each new challenge he quickly masters. Almost daily he makes significant advances–the latest is snowboarding on the Wii balance board. He even managed to beat me on the down hill race! It is amazing how much therapeutic value can be found within our electronic gadgetry. Out patient therapy at 2-North is nearly ramped up and includes multiple speech, occupational and physical therapy appointments per week. The therapists are now providing homework for Charlie and family to work on in between visits. There is not much time for rest!
Cognitively Charlie is gaining strength and clarity, but still has much work in front of him. His speech continues to improve at an absolutely impressive pace. We are all enjoying listening to what Charlie has to say. The most typical topics of conversation continue to be food, games and noxious bodily functions! This is exactly what you would expect from an eleven year old boy.
Charlie seems content and pleased with his progress. We continue to let him set the pace, but each day he challenges himself with new activities and achievements. Laughs and giggles are always present and the prankster within him is fully engaged. Unfortunately for Raeny, she continues to be the primary target! I am proud to say that Charlie joyfully makes the best of every day. He is not content to sit back and ride out the proverbial storm. He is smack dab in the middle of it dancing in the rain.
Support, well wishes, prayers and positive thoughts continue to bless our family. Thank you to our friends, family and community for continuing to travel this journey along our side and for offering to lighten the load whenever possible.
All my best,
January 21, 2014
Charlie is watching me write today’s blog and said to tell you all that he is doing good! Charlie’s days are filled with a typical variety of activities in addition to his therapies. Some of his favorites are: eating, reading Doctor Proctor’s Fart Powder (by Jo Nesbo), working with legos and playing. Charlie says, “Definitely eating!”
Charlie has also resumed torturing Raeny in these last few days. Charlie has tried to steal Raeny’s food, unplug her headphones while she is using them, chase her around the house and anything else he can think of. Raeny is handling it all in good humor…for now!
Charlie continues to work on speech, daily living activities and cognitive skills. Charlie makes leaps every few days though he still has a ways to go. Since Charlie is still needing to concentrate so much on things the rest of us take for granted, we are protective of his space to practice. This means Charlie is not ready to return to school or be as out and about in the community as we usually are. We are grateful for the everyone’s patience and ability to show caring while granting us the space to focus with Charlie.
Thank you to Miss Gilliland’s class for the new wonderful shirts – Charlie loves it!
January 17, 2014
Tuesday, January 14th Charlie turned 11 years old. We kicked off the celebration with a birthday breakfast and Charlie’s first public appearance. The chosen venue was the most fitting of places, none other than our beloved Dave’s Diner. Charlie walked right in, took a table, and in his own voice and words ordered his “usual” as he has many times before: lemonade, French toast and bacon. To look upon Charlie from a distance, one would not realize the miles this boy has traveled. Just 11 weeks ago he stood at the edge of the abyss. Through strength, prayer and perseverance, Charlie turned away from the abyss and is truly here with us today in all his charm and personality. Charlie is still on the mend but he is growing stronger and moving forward in giant leaps at what seems like an impossible pace. As Charlie ate, joked and giggled, I realized that Charlie is showing us all to have patience with that which remains unresolved and to enjoy what is here and now. No matter how long or short the ride is, you might as well have some fun and eat some French toast!
As you can imagine, the entire week has been one for celebration with many friends and family and making contact to wish Charlie a very special birthday. But birthday or not, the work continues on. This week speech has been Charlie’s self determined focal point. Less than a week ago the extent of his talking was limited to 3 or 4 words, spoken only a few times a day. Virtually overnight his vocabulary has grown extensively and speech flows consistently throughout the day. Charlie is now able to verbally communicate wants, needs, basic thoughts and emotion. For example, Sunday morning during breakfast I was encouraging Charlie to use his weaker, left hand to feed himself. To encourage this behavior I explained to Charlie that using his left hand would actually help the part of the brain that controls speech which would result in less effort for him to talk. Charlie didn’t say anything for a few moments and seemed deep in thought as he pondered what I had just told him. Then he looked me right in the eye, and clearly said, “Really!” The “really” was completely dripping with sarcasm! This big speech improvement occurred over the weekend. What a surprise his speech therapist had during her visit on Tuesday afternoon, and what a special gift to us all to be able to exchange words with Charlie on his birthday.
We are truly thankful beyond expression to share Charlie’s birthday with you and just as thankful that you care enough to read. It was an absolute blessing we were able to take Charlie out for a birthday breakfast and were proud to do so at our favorite diner. Many, many thanks to our friends, family and community for your continued prayers and support.
All my best,
January 14, 2014
As we prepare to celebrate Charlie’s 11th birthday, we acknowledge that he has given us the most precious gift of all: the reminder that though we all have life we should be mindful to live each day.
WOW!!! Charlie continues to improve in spurts that take our breath away! Physically, Charlie has increased strength, is doing more on his own and is starting to initiate more for himself (including the frequently detours to visit the refrigerator). Eating, playing, exercising and writing are among Charlie’s top therapeutic activities.
Charlie has been mimicking a small number of words until two days ago. At this time, Raeny decided to take charge of Charlie’s speech therapy and next thing we know he is repeating everything, deciding some things he wants to say for himself, answering questions and reading words out loud! Along with this change, Charlie’s writing skills have also jumped forward.
Charlie continues to have a great and varied appetite though we are starting to see a return to some of the more favorite foods. The G-Tube site is healing well, and we are all glad to see Charlie’s system functioning without extra equipment (though we are grateful for its presence when it was needed).
Outpatient therapy begins this week, and we look forward to working more intensely a few days a week and then “working” at home for the time in-between.
Your prayers and presence have been a great gift for us. Thank you.
January 10, 2014
The deeply rooted tree continually weathers the storms and dark of Winter only to show it’s brilliant blossoms come the warmth of Spring.
Warp speed ahead. Three weeks into home therapy and we have reached the next turn in our journey. Much to the surprise of the home therapists, Charlie is progressing so well and so quickly we will be moving on to out-patient therapy. Although the schedule will be more challenging, the services and therapy outside the home will be more aggressive and will support the speed in which Charlie is choosing to recover. On a daily basis we continue to hear from our wonderful therapists and doctors how amazing Charlie is doing. This week Charlie returned to the 2 North Rehabilitation clinic for physical, occupational and speech skill assessments. The therapist were all amazed at the progress Charlie has made over the last three weeks.
Medically speaking Charlie is well beyond all expectations. The changes in his abilities and skills are measured in hours and days, rather than in what would typicaly be weeks and months. Tasks that the therapists challenge Charlie with today are the skills he has mastered tomorrow. For example, three days ago it was a challenge for Charlie to side step to the left. Today he performed the maneuver with the grace. Several days ago Charlie was only able to administer a week squeeze with his left hand. This morning he repeatedly used his left hand to hold a fork and feed himself. His strength and endurance are increasing dramatically as well. A few days ago Charlie struggled to roll a ball across the room. Today he was dribbling a basketball for short periods of time. The home therapists commented that their challenge is to keep coming up with new items they can bring to the house to keep Charlie challenged and interested–hence the timing is right to move to out-patient facility based therapy that will offer a much wider range of equipment and resources. Thus, beginning next week we start the transistion to out-patient therapy. Physical and Occupational therapy will be 2 to 3 times a week. Speech therapy will be 4 to 5 times a week. Verbal communication remains Charlie’s biggest challenge. Each day his abilities and range of speech improves, especially with the right motivation. Just yesterday a package of Oreo cookies offered by Aunt Kelly elicited a very clear ‘Thank You’. But since this area is where Charlie needs to most help, we will apply the most therapy.
Aside from physical improvements, more and more of the Charlie we all know and love is shining through. His day is full of giggles, smiles and jokes. To keep his therapists on their toes he will purposefully do the opposite of their requests or not perform at all until they have determined he is not currently able to perform a task. He is also starting to initiate more typical Charlie games. The other afternoon I was unexpectedly hit in the head with a couch pillow. Charlie’s giggles identified the source of the infraction. The other night he even took the opportunity to bite his sister’s toe while he pretended to be asleep! It is heart warming to see Charlie being Charlie and keeping his comical disposition in spite of his challenges. Often times in childhood the child looks to his parent or parents as his or her heroes. I have to say that as I witness Charlie’s strength, poise and determination he is my hero. His demeanor and attitude make us all very proud.
I am hoping that 2014 is off to a great start for all. Your continued support and prayers continue to be graciously appreciated.
All my best,
January 8, 2014
Hello Everyone! I apologize for the delay in doing an update ~ Charlie had some appointments Tuesday, and I wanted to wait so the update could be complete.
Charlie is doing very well. He continues to thrive and demonstrate improved skills almost daily. We are still being told from the doctors that they have never seen a recovery like this. Charlie is eating so well that he has just about returned to his typical weight and was able to have the last of his tubes (the g-tube for the stomach) removed today. Charlie is getting stronger and is requiring less and less help from medications as well. The therapists continue to revise their plans each visit as Charlie works on his own, in between visits, to perfect what is being asked of him.
Charlie has all of his outpatient therapy evaluations this week and then outpatient services start next week. The HCR (Home Care) therapists are wonderful and we have appreciated their time and input. However, it will be good for Charlie to receive services from someplace other than home and to have the equipment available that will encourage Charlie’s body to strengthen in all ways possible.
The most fun has been watching Charlie initiate jokes and choices. He loves to play pranks on us and to get a laugh out of Raeny. Charlie has pretended to fall asleep when I have asked him to do things, played like he is going to eat things we usually consider inedible, walked in the opposite direction of where he knows we are going, smiled at the therapists as he chose the wrong answer to their question on purpose, etc. His spirited approach to things always makes us smile. While there is still a ways to go, we are taking Charlie’s cue to enjoy each step of the way!
Thank you for your continued prayers, help with Raeny (who is doing great!), meals and other kindnesses you have given. Please know that our gratitude is expressed every day for all you have offered to our family.
January 3, 2014
“Look not mournfully into the past, it comes not back again. Wisely improve the present,
it is thine. Go forth to meet the shadowy future without fear and with a manly Heart.” ~Henry Wadsworth Longfellow
Charlie is now home nearly two weeks and settling well into his busy schedule with a very strong focus on improving the present. In spite of his current challenges he maintains excellent Charlie type humor full of laughs and giggles, and has even made a few attempts at giving his sister a wet willy. In typical Charlie fashion, the forward movement has been nothing short of extreme. When Charlie was released from the hospital he was approved for a pureed food diet only supplemented by liquid food through his G-Tube. That lasted 3 days. On Christmas morning Charlie demonstrated his readiness for ‘normal’ food by grabbing a lollipop and sticking it in his mouth. I sternly advised him not to chew on the lollipop. He looked directly in my eyes, bit down hard on the lollipop and vigorously chewed the candy on the stick. While the flavor of blue raspberry lingered upon his tongue, the empty lollipop stick emerged from his mouth and was handed back to me. From that point we rapidly progressed to real food including the beloved pop-tart, waffles, pancakes, hot dogs, chicken nuggets, pie and even meat loaf. The special pump to put food into his feeding tube has sat lonely and idle for several days while Charlie works to clean out our refrigerators. His walking mobility and stamina are improving faster than we can get the home therapists can keep up. Today (Thursday) Charlie even took a walk through ankle deep snow in our backyard. Progression is going so quickly we hope to move right onto out-patient therapy by month’s end. As we have stated many times, Charlie has a long recovery road in front of him, but he shows everyday he has no intention of obeying the speed limits. I stand in awe of this little man. He amazes us everyday with his strength and resiliency.
As 2014 is now gearing up, I wish you a very Happy New Year. May the generosity, caring and compassion you have shown my family come back to you three-fold. The start of a new year is really just another day, but we hold it significant as a time for new beginnings. The start of 2014 starts a new chapter in Charlie’s journey. I cannot tell you the specifics of this chapter as that would spoil the story of life, but I can tell you that the story will be full of fun, hope, challenge, adventure and success.
As 2013 folds into 2014, be mindful to enjoy and cherish each day as is comes. Honor it as the most cherished day of your life. Charlie’s accident has shown us that it takes a split second to turn everything upside down. He has also shown us that even the most adverse conditions can be overcome and that even in most extreme circumstances, success and happiness can be found within yourself and with those around you.
Cheers to you and a very prosperous 2014.
All my best,
December 30, 2013
It is unbelievable that Charlie has been home a whole week! In full Charlie style he has exploded into eating (anything and almost everything!), is playing games with Raeny and doing more for himself each day. Charlie’s days at home are typical meals, chores, entertainment and rest) combined with therapies to help Charlie continue to strengthen and move forward. Charlie still charms the therapists out of doing some of the work while later showing his father or I exactly what he can do!
Charlie had his first outpatient doctor appointment with our family physician last week. He is doing well physically and we have begun weaning the last of the medications he has been taking. Charlie has gained weight, has greater range of motion and continues to work to rebuild his mind-body connection.
While Charlie has made great improvements we are still feeling protective of his new sensitivities. To this effect, we are working to maintain a balance between having some “normal” activities and plenty of time for integration and rest. At this time it is unclear when Charlie will be returning to school, but it will not be for a while (though Charlie will receive tutoring at home).
It has been wonderful to watch Raeny make Charlie laugh and encourage him to keep moving forward – she is his toughest therapist, favorite comedian and biggest supporter all rolled into one! What a wonderful bond they share.
As we approach the new year, let us all remember to approach and live each day with love, curiosity and faith as surely these are what created the miracle we have all been part of these last few months. If we expect miracles, that is where our focus will be, and we will create and witness miracles every day.
December 27, 2013
A belated Merry Christmas and thank you all for your Christmas wishes! We have enjoyed a low-key and very happy holiday. It is wonderful and exciting to have Charlie home. We have so much to be grateful for! We hope happiness and peace have filled your holiday as well.
Charlie continues his pattern of resting for a few days then rocketing forward without warning. Charlie is eating like crazy and enjoying it! His sense of humor has expanded and Raeny is his favorite comedian! Charlie often smirks at me now when I ask him to do something as if he is saying “Maybe…maybe not”.
Charlie has begun home care and, true to form, tried to do absolutely nothing the first time the physical therapist came to work with him. After a bit of re-framing the names of the activities by Kevin, Charlie participated fully. Charlie has a daily exercise routine to help strengthen his legs, arms and core, not to mention just being home and all the activity that involves.
We are very grateful for the community (both Cazenovia and beyond) pulling together for Charlie and our family–it makes us smile to read the blog entries and helps us to stay connected to the bigger picture. We will continue to update the blog, though less frequently. The next blog entry will be on Monday, then Mondays and Fridays after that. We do not want to be repetitive in our reports and life with Charlie and Raeny is very busy right now! A HUGE thank you to Juliane Worthington for creating and managing the blog for us~this has been an amazing gift and we could not have done it without you.
“YOU are YOU! Know YOU can! YOU must not be afraid because God has a prosperous future plan for YOU! YOU got to know YOU! Guess who you are? YOU are a blessing to all others especially me!” ― Israelmore Ayivor
Christmas Day 2013
I have a little story I saved for Christmas Eve. On this past Saturday night, the last night I spent with Charlie at the hospital, he and I set out for an evening stroll. We made our way up see our friends in the PICU. On duty that night was a particular doctor that I like to call Dr. Ominous. I call him this as during our first few days in the PICU he painted a very ominous picture for Charlie’s future. We do not begrudge the doctor for the assessment he provided. He is a very skilled and compassionate doctor. He was simply doing his job by describing the picture based on experience and the current circumstances. Anyhow, as we happened upon Dr. Ominous this particular Saturday night I asked Charlie to go shake the doctor’s hand. I then let go of Charlie’s hand and let him walk unassisted a few steps up to the doctor. Upon reaching the doctor Charlie weakly held out his hand and shook the good doctor’s hand. With a look of disbelief Dr. Ominous took Charlie’s hand and said, “Amazing”. Doctor, we thank you for your amazing skills and care, and for being straightforward with us. We also very pleased you underestimated Charlie’s resilience. Charlie coming home is our Christmas present and our Christmas miracle and we could not have asked for anything more!
“It came without ribbons! It came without tags! It came without packages, boxes or bags!’… Then the Grinch thought of something he hadn’t before! ‘Maybe Christmas,’ he thought, ‘doesn’t come from a store. Maybe Christmas…perhaps…means a little bit more!’” –– Dr. Seuss
Onward we go, and it is now just about Christmas–that magical, wonderful day observed and celebrated worldwide. What is Christmas? It is a time to reflect on the past, renew strength for the present, and build hope for the future. It does not matter what your religious belief may be. Christmas is that time of year that reminds us we are here for something bigger and grander than just ourselves. The Spirit of Christmas reaches all with the wish of peace and joy. Open your eyes and open your heart, and let the magic shine through. Now just imagine how wonderful it would be if that magic could live on in our hearts all year long. If you live amongst our community its actually not too hard to imagine at all.
As I write this Christmas Eve post, Charlie and Raeny are snug in their beds waiting for Santa to visit. I have finished my frantic running around and last minute preparations to ensure a special Christmas morning. A cup of hot coffee generously garnished with some Baily’s is now in my hand. Just a few days ago I never would have allowed myself to think that Christmas Eve 2013 would be spent at home with both children. The last 2 months are just a blur, but Charlie is home! There is an old saying that states, “At Christmas time all roads lead to home.” Well Charlie has found the road home and has made the transition with flying colors. For that we are enormously thankful. We still have many miles ahead of us to travel and our story does not yet end. But the last several weeks I have learned that the story matters so much more than the ending and the current chapter is by far the best one thus far. I have faith that Charlie’s tale will progess in an ever increasing positive direction, and we will continue to share Charlie’s progress. We are exceptionally blessed that there is a story to continue.
On this Christmas Eve we take the opportunity to again thank you all so very much for your kindness and support, but more importantly, we thank you for being part of our story. On this Christmas, and always forward, may peace, joy and the blessings of the holiday reach you and your family. Enjoy your time with your family for it is the most precious gift we all have.
In honor of the holiday, there will be no updates written on Christmas day. We will focus on celebrating the spirit of the day, Charlie being home resting up for what comes next. I sincerely hope you have the opportunity to do the same. A very, very merry Christmas to all.
All my best,
December 24, 2013
Charlie is home!
Discharge from the hospital was good, with many friends who work there coming to say Merry Christmas and wish Charlie well. Charlie enjoyed looking out the car window on the way home and seeing everything moving and going on out in the world. When we got home the first things Charlie noticed were the “deflated and dead” pumpkins near the porch and he laughed and laughed! It was such a great welcome home for him.
As we went inside Charlie immediately went to the youngest turtle’s tank, and the turtle swam as close as he could to Charlie. They watched each other for many minutes and then Charlie, and the turtle, moved on. That settled things and Charlie went to the couch he typically occupies and was ready to see what would happen next.
The transition thus far has been good, though tiring for Charlie. The best part has been being able to watch Raeny and Charlie together again at home – they are so funny! Raeny, having learned well from Charlie, has no shortage of material to amuse him with. For his part, Charlie keeps the smiles and laughs going.
I couldn’t wish for anything more special for Christmas.
December 23, 2013
Charlie is resting in bed now, watching a movie, preparing for his big move home tomorrow. We are so grateful that all of your prayers have helped us get to this point. It is amazing what can happen when we all believe.
Charlie and I made rounds tonight to thank all of the teams that have helped us while in the hospital. We delivered smiles, giggles, fart/butt jokes and treats (thank you Wangler for providing the treats). At the ER, staff were amazed to see Charlie again as they do not usually get to see what happens after people move to the units. We are very grateful for their patient and persistent care while helping Charlie’s heart to beat again. And for their willingness to have Kevin and I involved in bringing our boy back to this reality. Then we returned to the PICU where Charlie was greeted by several nurses and one of the doctors. We even visited a young child who has been there since Charlie’s stay. This young one took Charlie’s hand and they looked at each other seeming to offer strength and comfort. This is exactly what the staff at the PICU gave to us–persistence in helping Charlie to breathe and the strength and comfort we needed to move through the daily work of watching and supporting Charlie in his healing process. Also, we appreciated all the teaching that allowed us to do much of Charlie’s care ourselves. From there we journeyed across the hall to 12E. The nurses greeted Charlie with warmth and encouragement. The staff here kept Charlie moving forward and allowed his record breaking pace with the rest he needed in between–they took it in stride which helped us to do the same. And that brings us to 2 North where we are currently. We appreciate that the staff here being able to see where Charlie is and expect him to do more, to be more and to give more the same as Kevin and I would. The creativity and motivation Charlie experienced here will help him to keep moving forward for a long time to come. In addition to each of these units, we want to acknowledge all of the other specialties that offered their expertise to Charlie and to us while we were staying in these units: respiratory care, physical therapy, occupational therapy, neurology, pediatric surgery, GI, music therapy, speech therapy, case management, housekeeping, security, etc. The care we have received has been extraordinary–compassion, patience, encouragement, laughter and many fart “tools” (machine, jokes, slime, etc) have been the perfect combination for our family. If you have an opportunity to support Golisano Children’s Hospital or Upstate, please do so. These amazing places can’t survive without community support.
Also, thank you to Molly and KeriAnna for allowing us to use their photos with Charlie. We will see you when we visit for our outpatient appointments.
Finally, we want to say, “WOW” and a huge thank you to the 5th graders at Cazenovia Middle School for the absolutely fantastic quilt they sent Charlie for Christmas. Reading your words to him gave him many smiles today and we know he misses you as much as you all miss him! What a great way for all of you to help Charlie stay strong!
December 22, 2013
One of the most joyous sounds to a parent’s ears is the sound of their child’s voice. Today I pray not to ask for anything special, but to simply say thank you for allowing me to start my day to the sound of my child’s voice.
Last night was the 2nd to last night of sleeping at the hospital with Charlie…and as are most Daddy nights, it was an eventful night. Charlie seems to have hit another patch of rapid forward movement, or awakening as many in the world of brain injuries call it. The closest thing I can relate it to is what most of us who have or are raising children call growth spurts.
Yesterday I spoke of Charlie’s first meal since being in the hospital. I allowed myself to think that with such a full belly, Charlie would sleep sound. Charlie was thinking just the apposite. With eating checked off his to do list, it would appear that Charlie now has his sights set on verbalizing. Charlie chose the very early morning hours to work on this task. I was woken around 2 a.m. to the sounds of Charlie humming. Later in then evening I was woken again the sounds of mumbling. I checked the clock…4 a.m. I asked Charlie if he was ok and he quickly replied, ‘yeah’. 7 a.m. came along and it was time to get Charlie up and ready for Saturday therapy. As I reluctantly woke the now sleeping Charlie, he looked me in the eye and said, “Hi”. I said, “Say it again” and he complied….absolute music to my ears. I jumped around hooting and hollering making a big deal of Charlie’s accomplishment. Based on the look on Charlie’s face I believe he thinks I had a nervous breakdown as he has not uttered a word since. In more medically thinking lingo, Charlie is regaining skill in a very normal manner. Typically after eating begins, talking skills kick in. What is not typical is the speed of Charlie’s progress and his habit of practicing new skills during what should be Daddy sleeping time!
As the day progressed Charlie’s new found appetite and eating skills brought a visit from the dietician. Our homework is to track every bite of food Charlie consumes. With luck, the tube feedings will be reduced substantially as we march towards the goal of complete elimination tube feedings and the stomach tube removal. Charlie is showing us again and again he is on a mission to make his mind and body whole. In addition, he does not want to miss out on the Christmas Pumpkin and Lemon Meringue pie.
Each day closer to departure Charlie’s room gets sparser. For the last few days we have been sending home the loads of toys, clothes, books etc. that have accumulated over the last 2 months. We have had many visits from numerous hospital staff that bid farewell to their friend Charlie. We are very happy to be going home, but remain thankful for the wonderful hospital staff, their skill and compassion.
I hope everyone is well on their way to enjoying the holiday season. Thank you for being part of our Christmas miracle. Many blessings and thanks to all.
All my best,
December 21, 2013
“The expected is boring–we already knew it would happen. It is when the unexpected happens that things get interesting and sometimes fun!” – Me
Charlie has rounded the last turn and has entered the final straight-away in his race to go home. With typical Charlie grace and style his motor is running full throttle to show everyone what he can do! Yesterday we celebrated the ability to lick a lollipop which is a major accomplishment in the quest to regain control of the mouth and muscles required to eat. But Charlie was not satisfied with that accomplishment. Today in therapy, he demonstrated his ability to put a spoon to his mouth, bite food and drink from a cup. This unexpected overnight gain of skill drew the attention of several therapists to the point they gathered round to watch. Charlie’s eating improvement was so impressive that the “no food by mouth” order was lifted. Tonight Charlie’s first real meal, albeit pureed, in over 2 months was delivered to his room. To celebrate Charlie ate Turkey, sweet potato, apple sauce, corn, banana smoothie and chocolate ice cream for dessert! The nurses and doctors on duty tonight responded in amazement to the food consumed by this boy! Charlie has set his sights on regaining his eating ability and apparently, much to everyone’s amazement, wants this task checked off the “to do” list quickly.
As we enter the final weekend of our hospital stay, Charlie will not be given the opportunity to loaf. He has a fairly full schedule of therapy both Saturday and Sunday. After seeing such great accomplishments these last couple days, the therapists agreed to keep the pace going as much as Charlie is able. For Mom and Dad, well, the initial shock of the impending discharge has past and we are blazing forward making preparations for Charlie’s return home and working on putting in place in-home therapy. I don’t expect many dull moments for some time to come.
Many, many thanks to all the wonderful people of our community who continue to offer help, support and prayers. Many friends have asked what we need to help the transition home. We have no real good answer at the moment as we really don’t’ know what we need until the need arises. Right now, the hospital staff is doing an excellent job helping arrange for appointments, equipment and supplies and in home training. I’m sure once we get Charlie home and into his new routine we will need some help, and then we will graciously accept your offers. In the mean time, just knowing support and help are available is an incredible comfort.
In closing, I would like to take this opportunity to congratulate Duerr family on the birth of their 5th child. The Duerr’s are members of the Cazenovia community and our neighbors. In addition, State Trooper Duerr was one of the officers that responded to Charlie’s accident. A very exciting day for the growing Duerr family and we offer them our blessings, prayers and congratulations!
As we enter the final count down until Christmas, we offer to you all the peace, joy and spirit the season has to offer.
All my best,
December 20, 2013
Charlie has had another outstanding day! He continues to eat more, move in more ways and to communicate in any way he can. The victory of the day is that Charlie can stick his tongue out to lick a lollipop (which he has been working on for a week!). Each victory gives Charlie confidence that he can be the master of his physical self again and propels him to the next challenge.
Also today, Charlie has begun saying goodbye to the hospital staff including hugs for the nurses. We have begun to pack up his room and bring things home. It is amazing what has accumulated! We have the supplies at our houses (thank you Kevin for doing the shopping) and other than equipment delivery and a bit of organizing we are ready for the first stage–just getting Charlie home. There will be more to consider once we are actually living at our houses daily, but we will make those adjustments as we see the need for them. It is a comfort to us to know that your prayers and offers of assistance are there. Thank you.
Here is a short story I found on the internet and will read to Charlie tomorrow as I think he will find it very funny….
“When I was in the hospital they gave me apple juice every morning, even after I told them I didn’t like it. I had to get even. One morning, I poured the apple juice into the specimen tube. The nurse held it up and said, ‘It’s a little cloudy.’ I took the tube from her and said, ‘Let me run it through again,’ and drank it. The nurse fainted.” Alan King
December 19, 2013
“Part of the healing process is sharing with other people who care.” Jerry Cantrell
THANK YOU!!! We were very touched by the wonderful and heart felt responses to Charlie going home. We very much appreciate all of the offers for help and support. The care and comfort you all provide through your words, offers and activities has helped Charlie to continue to progress and helped Raeny, Kevin and I to have what we need to be with him every step of the way. This is truly, as many of you have written, a Christmas miracle.
We are working to get everything set up, appointments made, double checking supplies, etc. It is a lot but it is going very well. Charlie’s homecoming is a huge transition and we need to keep it as low key as possible. This will allow Charlie to focus the energy he has on being home again and the shifts in healing that returning to his normal settings will bring. While we are so grateful for the many offers to make Charlie’s homecoming amazingly special, we need to humbly decline in an effort to make this as smooth and effortless as possible for Charlie. Your continued prayers fuel our strength, faith and hope. Thank you.
Charlie made leaps forward today, as is his style! Charlie showed that with the right food (Cotton Candy Go-Gurts) he would lift the spoon to his mouth and feed himself. This small task requires a lot of muscle planning and coordination and is a fantastic sign of improved hand/eye coordination and Charlie’s determination (it took a lot of practice to get here!). This also means Charlie is starting to eat more–not enough to reduce the tube feedings, but a step toward it. With the increased movement in his mouth muscles, Charlie is making more sounds and said “ow” today when he did not appreciate the movement he was encouraged to make in therapy. (He was not hurt, but therapy stretches otherwise stiff muscles and can be uncomfortable). We can’t wait to see the continued improvements when Charlie comes home!
A little present from Charlie: Charlie’s Twelve Days of Christmas (From the hospital…)
On the 12th day of Christmas someone gave to me:
12 sleep position changes
11 brand new jokes
10 million new friends (Thank you!)
9 sock monkeys dancing
8 walks to PICU
7 nights not sleeping (for Daddy)
6 alarms blaring
5 “A Christmas Story” viewings
4 nose tubes out
3 hours of therapy
2 useless sedatives and
A can that was full of farts
December 18, 2013
“Nobody knows how things will turn out, that’s why they go ahead and play the game…You give it your all and sometimes amazing things happen, but it’s hardly ever what you expect.”
― Gennifer Choldenko, Al Capone Does My Shirts
A week ago Raeny went to see Santa Clause. Like many children there were some toys on her wish list, but she also had a much grander wish. While sitting upon Santa’s lap, Raeny looked at Santa and said, “I know you cannot make this happen, but what I really want for Christmas is for Charlie to come home.” Well Raeny my dear, your wish for a Christmas miracle has been granted. We are happy and thankful to announce Charlie will be going home Monday, December 23rd–just in time for Christmas!
As I write tonight’s update I sit in a very surreal state of mind. The speed in which we have reached this stage is as surprising for us as it is for all of you. Charlie has moved forward at record speed! He has progressed so well both physically and mentally that hospital/in-patient care is no longer necessary. Physically and medically speaking, Charlie has grown strong enough that he no longer requires the care provided in a hospital setting. Neurologically, Charlie has progressed so rapidly that he is ready for the next phase which is in-home therapy. Charlie’s doctors and therapist feel he will progress better and more quickly in his own environment. As such, Charlie will be sent home and reintroduced to his home life. He will continue physical, occupational and speech therapy from home for the next few weeks. After a few weeks of home therapy, he will be enrolled into a more aggressive outpatient therapy program. We still have a long way to go, but this chapter has now ended, and we will move onto what comes next!
Over the next few days Rosemary, I and the hospital staff have a lot work to do. Our homes will need to be readied to accommodate Charlie’s needs and ensure his safety. Charlie is still being fed through a stomach tube so there is equipment and supplies to get setup in home. Finally, with therapy moving to a home environment, there are therapists and appointments to schedule. Although the transition will be a little overwhelming, we are so very thankful to have Charlie coming home and look forward to furthering his rehabilitation.
We could not ask for a better Christmas present this year. Our continued thanks to all for your support and your prayers. I cannot say it more strongly, your prayers are being heard and are a big part of Charlie’s progress. Thank you and blessings to you.
All my best,
December 17, 2013
As we go from day to day, the rehabilitative therapy continues to intensify always building on yesterday’s gains by adding new challenges today. Charlie’s added daily struggles continue to end with new steps forward. During today’s physical therapy Charlie amazed those who had not seen him since last Thursday with his tremendous improvements in walking. A week ago a few steps were a challenge. Today we rise, to the top of the stairs and back down again. What was a shuffle a week ago, has progressed to an assisted jog down the hall. Charlie continues to amaze those working with him with his progress, charm, strength and contagious laugh. In spite of the difficult road Charlie has traveled these last few weeks, his smile and laugh were the first to return and have been the most consistent sign of Charlie’s strength.
As we move forward this week much focus and work will be directed to improve hand/eye coordination, eating and speaking. Charlie has used very few words thus far, “nose” being the most recent. Charlie is working very hard and showing improvements in these areas, but there is a lot of work to do. The challenge continues to be finding therapeutic tasks that are fun and motivating for a 10 year old boy!! Today we found an amazing I-Pod app that emulates the various sounds of flatulence by pressing a number on the screen. This brings about much laughter along with inducing a desire to practice hand/eye coordination. For those or you following the blog, I am sure you are seeing the gassy theme behind the things that motivate Charlie. Honestly, I don’t know where this somewhat juvenile sense of humor comes from. In actuality, the therapeutic goal is to help the brain recover through the use of age appropriate games and toys. Later this week Charlie will try his hand at a remote control car! Charlie is looking forward to adding this activity to his therapy.
As I close for today I chose to include a quote in honor of the late Nelson Mandela. Mr. Mandela once said, “The greatest glory in living lies not in never falling, but in rising every time we fall.” I came across this quote over the weekend as I read through the Nelson Mandela news coverage. This evening, as I took Charlie for his evening walk through the hospital we were greeted by the many friends we have made these last few weeks. Charlie’s quick smile and chuckle over a simple joke never ceases to lift the spirits of those he encounters. In life we are all going to stumble and fall at one time or another. Tough things happen to good people everyday. The key to survival and peace is taking the hit and bouncing back up with a smile on your face ready to take what comes next. I wish a peaceful rest to you Mr. Mandela and humble thank you to Charlie for reminding us to always keep smiling. Smiles and laughter are contagious.
To our family, friends and community, thank you for your continued help and support.
All my best,
December 16, 2013
Charlie has had another great day! I love watching the way he thinks about what he is doing and the expressions he uses to convey the choices he is making. Charlie is also trying to use sounds more and I can’t wait to hear him once he gets talking. Charlie is mostly practicing things we don’t think about enough to even consider them routine; going up and down stairs, pointing, kicking legs and waving arms, vocalizing, etc. These all take a great deal of effort while Charlie’s brain continues to awaken and rewire itself, so Charlie is sleeping really well!
I want to thank everyone who continues to support us though making food, doing laundry, snowplowing, taking care of pets, cleaning, playing with Raeny, etc. We would be lost and overwhelmed without you!
Also, thank you very much to the Caz Cub Scouts, Boy Scouts and their families for the fundraising they did by selling ornaments at the Christmas Walk. We appreciate all of the time, effort and generosity you have shared to make our situation easier.
“Our prayers should be for blessings in general, for God knows best what is good for us.” Socrates
Many blessings to you all,
December 15, 2013
Charlie enjoyed a very active day today. Charlie had a few hours of therapy that involved running in the hall and rolling a ball at my head (all assisted but still fun)! We also enjoyed a visit with Raeny where they shared a video and laughter. This evening we again cruised the hospital in the wheelchair and surprised our friends on the PICU with a brief walk around their area. We ended the active part of the day by swaying to “Grandma Got Run Over by a Reindeer” (sorry Mom!). Charlie is beginning to use this mobility to make his choices more clear–walking to books at the library or to his chair when he tires and moving his feet when he is ready to be out of bed. Over the next few weeks we look forward to Charlie being able to do some of this unassisted and maybe add a few new moves as well.
Charlie’s miracle is due to his strength and the connections he has with family, all of you, the hospital staff, etc. These connections show and strengthen each of us in many ways. Every laugh, smile or success Charlie has brings the energy of strength, perseverance, hope and love to each person that has prayed, sent wishes and participated in our lives in any way. In this way, we help each other’s goals and dreams come true. With each day we hope and pray for all of your holiday wishes to come true.
“We cannot live for ourselves alone. Our lives are connected by a thousand invisible threads, and along these sympathetic fibers, our actions run as causes and return to us as results.” Herman Melville
December 15, 2013
Thursday night was Charlie’s first full night trach free. It was also the last night he had to wear his oxygen sensor. The oxygen sensor was needed just to be sure he was able to maintain his airway on his own. I am happy to report the night went very well albeit in typical Charlie fashion. I was abruptly awakened at 4 a.m. to sound of the low oxygen alarm blaring, a flurry of nursing activity, and the sound of Charlie giggling. Yes, he was outright giggling. I guess his form of celebrating the trach removal was just one more pulling off of the oxygen sensor wire and setting off the alarm! That’s our Charlie!
Friday marked the end of the first full week of therapy for Charlie. He will still have some therapy on Saturday, just not a full day’s worth. The assessment of the therapists is remarkable. All are very impressed with how quickly he is improving. Given the severity of his status just 7 weeks ago compared to where he is today, the difference is truly miraculous. Stay Strong Charlie!
Another very remarkable achievement to announce today is the results of the Charlie Thompson Benefit Dinner. I was informed that over $10,000 was raised for Charlie’s care. This is beyond generous and belief. There are a multitude of expenses that Rosemary and I are facing to aid Charlie in his recovery. Many of these items are not covered by insurance. These funds will help immensely in providing Charlie the care and services he requires. Although he is progressing more rapidly and better than anyone predicted, we are looking at many months of rehabilitative therapy and services. In addition, there will be several types of home equipment and minor home renovations required to help Charlie transition back to home life. We again offer a very gracious and heartfelt thank you to Dave’s Diner, all the volunteers and to our community for your exceptional efforts and generosity. I wish there were better, more eloquent words to express our gratitude. Whether you see it or not, your generosity is truly a miracle in the making. When Charlie fell into that well 7 weeks ago the experience was tragic. But in the bottom of that well we found the love and generosity of a wonderful community made up of extraordinary people. Thank you.
“In the end, though, maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it’s wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices.”
― Elizabeth Gilbert
All my best,
P.S. – For anyone interested, Dave’s Diner has additional shirts available.
December 14, 2013
“Being challenged in life is inevitable, being defeated is optional.”
― Roger Crawford
Charlie will not be defeated! Today he has racked up one more triumph on his road to recovery. The trach is now gone. A quick procedure to remove the trach was done and Charlie didn’t even miss a beat. The procedure took 2 minutes and he immediately resumed his briefly interrupted therapy session. His physical body is getting stronger quickly and he continues to make remarkable progress in record time. Young Charlie has an incredible fire burning within.
Mentally, his alertness is also strengthening quickly to keep pace with his daily therapy. The therapists are pushing him hard. In some areas Charlie is doing very well, while other areas Charlie is taking more time to improve. It is a fine balance between the amounts of therapy Charlie requires versus the amount of rest necessary to continue healing. So even on days when we don’t see a significant improvement, the fact that Charlie now tolerates the rigorous schedule and completes the day’s tasks is remarkable enough! I think we may also be struggling with finding the correct motivation to coax a 10 year old boy to play (boring) rehabilitative games like toss the ball or to use his arms on the hand exercise machine. I found when we changed “toss the ball” to “hit the therapist in the head with a ball” Charlie’s interest increased dramatically. When I told him he was being chased by a crazy Turkey that launches exploding eggs from his backside Charlie also found a little more energy for the exercise machine. We are just getting started and Charlie has many miles left to travel on this road–and Mom and Dad have quite the task to help the therapists turn the mundane into exciting and fun.
Finally, I was very happy that Raeny and I had the opportunity to attend the Charlie Benefit dinner at Dave’s Diner this past Tuesday night. Although our time there was short, it was great to see so many in attendance. Our heartfelt thanks to the organizers, the volunteers, those who donated and to those who attended. The dinner was great, but the community support was better. We cannot say thank you enough. You are all true heroes. When ordinary people give of themselves to help one another that is what makes our community extraordinary. Many blessings to you all.
All my best,
P.S. Keep the jokes coming. Charlie loves them!
December 12, 2013
“Success is steady progress toward one’s personal goals.” Jim Rohn
Charlie had a great day today! He remained consistent with the things he is doing and maintained a good mood throughout. Sometimes a slow and steady day is exactly what we need!
Charlie’s therapies continue to focus on his motor skills and ability to let everyone know what he does and does not want in a variety of ways. Charlie walked a great deal today but declined his afternoon nap; a great indicator that his stomach is doing well with the slowly increasing tube feedings. Charlie also had school and enjoyed playing an IPAD trivia game about the 50 states. Music therapy was about the therapist showing Charlie she had done HER homework–learning to play songs from Minecraft! After a rest, Charlie also played the gigantic electronic floor game screen the hospital has running for the kids. During the three games, Charlie popped bubbles, squished frogs and exploded ketchup and mustard packets with a grin on his face.
Charlie is doing very well with the trach capped so we are expecting it will be gone tomorrow or Friday. Charlie will be so happy as every intervention removed helps his body to feel more in his control and is a direct result of healing work that he has accomplished.
Charlie really enjoys the jokes…keep them coming!!!
December 11, 2013
“As for accomplishments, I just did what I had to do as things came along.”
Well, Dr. Charlie did what he had to about the nose tube last night and it turned out he was right; the tube is no longer necessary. Charlie is doing well with the stomach feedings and the bits by mouth. Go Charlie!
The doctor and staff here have observed Charlie swallowing and breathing well enough to begin the step-down process to having the trach removed. A smaller trach with a cap has been placed for Charlie today. The purpose of this set up is to allow Charlie increased air volume and the chance to breathe completely normally while maintaining the trach if Charlie does need help. If Charlie continues to do well with this, the trach will be removed on Friday.
Charlie has added another word to his growing list today. As therapists encouraged Charlie to pull himself to a standing position he said “up”. We love being able to hear Charlie’s words and laughter. Jokes and cartoons (Phineas and Ferb is a favorite) help Charlie to exercise his sense of humor and enjoy himself in between all the work. If you have a joke you would like to share, please post it and we will happily read it to Charlie–and he would love to hear some new jokes as I ran out a while ago!
A HUGE thank you to everyone at Dave’s Diner, Ten Strings Duo and all the auction item donors for the amazing fundraiser, and to everyone who attended! I received updates through the night on how busy and fun things were. I know that Charlie feels all of the love, light and happiness that you are all so generously sharing with us and is using them to help move toward his next accomplishment.
December 10, 2013
“It’s sometimes funny to watch some people doing something the wrong way but doing it confidently. Even more funny, they succeeded.” ― Toba Beta
Good news: Charlie no longer has a nasal feeding tube! To recap where we have been, Charlie started with a surgically implanted stomach tube to allow liquid feedings into his stomach. For a variety of reasons, the doctors decided to stop using the stomach tube and switch to a nasal feeding tube to prevent the risk of aspirating food into his lungs. Dr. Charlie has not agreed with this medical approach for quite some time. He has continued to demonstrate his point with performing multiple removals of the nasal tube. Each extraction resulted in the reinsertion of the nasal tube. As we continued along this medical approach tug-of-war, the doctors finally agreed to try the stomach feeding tube again, but required that the nasal tube remain in place until all were sure Charlie’s stomach and system would handle this method of feeding without causing any aspiration of food into the lungs. Everything was moving along just fine until a little accident happened over the weekend. The stomach tube got caught on a piece of equipment and was pulled loose. This left Charlie with nothing but the nasal tube. Back to square one. After many conversations and consultations between Rosemary, myself and various specialists, the doctors’ chosen course of action was to place a stronger button valve in Charlie’s stomach and resume feedings directly into the stomach. This was a simple procedure requiring no surgery, no sedation and could be performed at Charlie’s bedside. This was very good news. The original recommendation included another surgery to put in an entirely new tube in Charlie’s stomach that would allow the choice of putting food directly in Charlie’s stomach, or to bypass the stomach and put food directly into his intestines. Rosemary and I objected to this course of action as we both felt strongly that Charlie’s stomach was ready for direct feeding. Dr. Charlie also believed this to be true. I am happy to report that the button valve procedure was accomplished this afternoon and feedings have begun. Unfortunately, the doctor in charge of the procedure chose to leave the nasal feeding tube in place for the time being. This course of action was very dissatisfying to Dr. Charlie and as a result he has chosen a different direction. During a brief period of ‘minimal supervision’, Dr. Charlie quickly and decisively removed the nasal tube. He is now resting most comfortably and enjoying a popsicle and an episode of Sponge Bob sporting somewhat of a self-satisfied grin on his face. Unfortunately, Charlie’s nurse for the evening does not seem at all impressed with his self inflicted medical procedure.
Now, for those of you that maybe worried that tonight’s turn of events may have been harmful or introduced undue risk, I assure you no harm has been done. Hypothetically speaking, there may have been a comment made by a medical specialist alluding to the fact that if Charlie chose to pull the nasal tube free tonight, no harm would be done and we would leave well enough alone. Again, this is just hypothetical of course:) In the end, maybe not through the most appropriate means, Dr. Charlie, possibly aided by some unnamed accomplices, has won yet another small battle.
All my best to you and yours,
December 9, 2013
“A good rest is half the work.” – Proverb
Today was a day of rest for Charlie and family…well sort of. Charlie started the day with a partial extraction of his nasal feeding tube. His quick and practiced hands made a fast attempt to remove the tube, but quick action by Mom prevented the completion of the medical procedure before tube was fully extracted. Much to Charlie’s disgust, the removed portion was quickly put back in place by Charlie’s nurse. Aside from that little drama, there were no formal therapy sessions. But that does not give Charlie the chance to just lie in bed. In rehab, Sunday is a day to continue therapy in a non-formal way. This gives Charlie a chance to practice in an environment free of doctors, nurses and therapists. For Charlie this means more practice eating things like popsicles, pudding and ice cream, taking a walk, taking a wheelchair ride, and watching a movie. We even snuck in a little nap. As hard as it was, I was able to directly participate in the nap task. No matter how difficult, I am willing to do anything in the spirit of therapy and helping Charlie recover. The main theme of the day was to provide a ‘low stimulus’ envioronement and allow Charlie to set the pace. His 6 day a week rehabilitation schedule is full of work and challenges . For his brain to heal and recover, Charlie has to let his brain rest as much as he is willing to. Tomorrow will bring about more therapy and more challenges…but tonight we will not worry about that, tomorrow will happen just the same even without our worries.
In closing, a special thanks to the Cazenovia community. Friday night was my night home with Raeny. We were able to venture out for a short while and enjoy the tree lighting. I saw many of Raeny’s friends and parents along the way. It was nice to have some time to enjoy some community fun and for Raeny to have some time with her friends and just be a kid. The last few weeks have been busy for her, and the chance to be out having some fun and normalcy for a little while did wonders for her spirit. During the event I ran into many friends and neighbors. I took the time to slow down a little more than usual and enjoy many meaningful conversations. Living in Cazenovia I have always considered myself part of a community, but in reality I’ve been more often an observer than a contributor. Events of the last few weeks have shown me that to truly be part of the community requires slowing down, opening up oneself, and committing yourself to actively participating in the community and the encounters we share. It takes more than just showing up to the ball game to be a be a good player. As you start off your week, take a little more time than usual to converse with your neighbors in our community. You will find many truly remarkable people living among us–I know I have. We are very blessed and fortunate for the community we have built.
All my best,
December 8, 2013
Another great day for Charlie! He had speech twice and both OT and PT today. In speech, Charlie passed his “swallow test” which means he swallows great and that he is not aspirating or having reflux. Charlie also worked on blowing bubbles and hearing the sounds he makes with his own voice. During OT today Charlie worked on sitting up and still (HA!) and using fine motor skills. During this session Charlie was trying to take the humidifying cover off his trach and when I asked him to leave it alone he said “off”. For PT, Kevin and Raeny played with Charlie. With Raeny they batted a balloon and with Kevin he went fishing on the Wii.
Charlie took a great nap before dinner. As we were getting ready for his nap I asked him if he wanted his sneakers kept on or taken off. Charlie, without hesitation, said “on”. During dinner Charlie was treated to two of his favorite tastes for all of the hard work he did today. He enjoyed a very tiny amount of Sprite and the same amount of lemon pie. While we were eating dinner we talked about the Disney trip we took when Charlie was two as that was where he had his first taste of Sprite. Charlie enjoyed going through the memories of the trip and was smiling or laughing as he recalled each image.
As for the G-Tube, on Monday or Tuesday the pediatric team will evaluate what is needed for Charlie’s benefit. They may replace the outer tube with the same kind he already had, or they may use a different version which is meant for more long term use (read: harder to pull out!!!).
Charlie and I are really looking forward to tomorrow as he is getting a break from all the therapies and we will have family movie time with Kevin and Raeny (which is one of Charlie’s favorite activities).We wish you all an equally relaxing Sunday.
December 7, 2013
“You reflect on the people who used to be in your life, and it’s like, ‘Wow, I can’t believe that person was ever really in my life.’ But people are put into your life for seasons, for different reasons, and to teach you lessons.” Selena Gomez
Charlie is teaching and learning from so many people right now! As are we all. Charlie is adjusting to the many new people helping him to reach his goal of going home. These are wonderful nurses, doctors, therapists, technicians, etc., who have dedicated their lives to helping their patients live as fully and independently as they can. We appreciate all of them more than we can say.
Today, I saw the least amount of “possum” behavior that I have seen from Charlie. He played catch with Dad and walk assisted with a walker in physical/occupational therapy. He chose a new favorite color (blue) in cognitive therapy. In speech therapy Charlie tasted a lollipop and later in the day he also had 1 swallow of pudding. For dessert this evening Charlie had a tiny amount of marshmallow ice cream. Recreational Therapy was a bit of a different story. The therapist needs to evaluate Charlie before he gets to have “therapy” on their fun toys (like Wii). When she went to begin the evaluation, her computer was broke in a way that she had never seen before. I asked Charlie what he did to encourage this and he simply smirked and giggled!!! That meant an extra half hour break for him! (Of course there is no way Charlie really could have gotten to her computer…or could he?)
CAVAC crew members came by today to congratulate Charlie on his successes. Charlie enjoyed the stuffed tiger and balloons and shared a few laughs with his friends. We also took a ride to the 12th floor to visit with our “old” friends from PICU and 12E – more laughs and fun with amazing people!
This evening, as Charlie was getting ready for bed we found yet another reason to get the tubes out of him. As I was moving Charlie his G-Tube (that allows him to be fed directly into his stomach) pulled out. The feedings through this tube had been going very well and we were hoping to get the nose tube out in a few days. Well, it will be a couple days longer now! There are two tubes that make up the whole G-Tube; one is outside of Charlie and one is inside his stomach. The outer tube pulling out did not hurt Charlie and x-rays confirmed that the inner tube is still perfectly in place. Tomorrow, the pediatric team will find the best way to re-install the part that came out. For tonight Charlie will be fed through the nose tube. Again, we are all learning a lot! The entire team that helped us with this tonight, including several different disciplines and people who had not worked with Charlie before, were thoughtful, decisive and timely (especially considering the hospital staffing is limited on Friday nights). So, as we pray for Charlie over the next few days, let us also offer prayers and gratitude for all of the angelic help he is receiving at the hospital.
Many blessings and gratitude to all of you who are following this with your love and prayers. We are honored to share this journey with you and wish you all a most joyful holiday season.
December 6, 2013
“Hard work spotlights the character of people: some turn up their sleeves, some turn up their noses, and some don’t turn up at all.” – Sam Ewing
Charlie has turned up and is ready to go! Today, as expected, our new venture called rehabilitation began promptly at 7:30 am. The morning started with speech therapy, followed by physical therapy, then a daily visit from the doctor. During physical therapy we took a field trip the extensive gym located here at 2 North. To kick off the therapy, the therapist helped Charlie out of his wheel chair and onto his feet. Charlie must have felt inspired on this first day as he immediately, with the aid of the therapist, took off walking. He walked, and walked, and walked, and walked some more. He made his way across the entire length of the gym. His walk is a little bit better than a shuffle, and he requires someone to help support his weight, but nonetheless he was ready for exercise. The walk across the gym must not have been satisfactory so he headed out the door. The therapist asked him where he was headed and his only response was a sly giggle. So we all followed along. Soon we had a parade. There was Charlie, supported by the therapist, followed by me, then an assistant pushing his wheelchair. Out the door we went. Once in the hall we were joined by a nurse and nurse’s aid, all curious to see where Charlie was going. We walked the entire length of the rehab facility. 5 minutes later Charlie led us into his room and back into his bed ready for a rest. It was quite the procession through the facility, and there is now no doubt that Charlie has arrived. His journey on his first day was quite impressive indeed. As the afternoon progressed, we had more speech therapy followed by more physical therapy.
Today is just the warm up and the intensity will only pick-up as we move forward. The rehab doctor has ordered intensive therapy–as much as Charlie is ready to absorb. Why? Good question. With brain injuries, everyday abilities that we take for granted get lost or locked inside the mind. It is the job of the multiple therapists to help the recovering brain find or unlock those skills. The therapists will work with Charlie to help him regain his motor skills, swallowing skills, speaking skills and communication skills. Most of today was just a warm up to assess Charlie’s current abilities. All therapists provided positive remarks and were impressed with how quickly Charlie has progressed over the last 2 weeks. Working on the everyday skills repetitively will help the brain unlock and remember what everyday life is supposed to be like. The work will be hard, but at times will be fun. There are a lot of fun games and equipment in the gym that Charlie will be exploring very soon. For cognitive and speech therapy, there are a lot of I-Pad applications that will be introduced–including the favorite Angry Birds game. Charlie was even given a remote controlled device that mimics the sounds of passing gas. Charlie seemed quite happy and impressed that video games and passing gas is considered part of therapy! For the next several weeks, the therapy will be very interactive involving Rosemary, Raeny and myself. The belief is close family can be the best form motivation. Thus far, Raeny has had the most success with motivating, or should I say, instigating Charlie into action. I am sure Charlie will have a long list when payback time comes around.
Our continued thanks to our community and friends for the ongoing support and prayers. We are very blessed to have such wonderful community behind us.
All my best,
December 5, 2013
Today has been a BIG day for Charlie in terms of good news and progress. The results of his gastric emptying test demonstrated that his stomach is working as it should, thus the transition to feeding directly into his tummy can begin tomorrow. This gets us a step closer to ridding Charlie of his nasal feeding tube–the doctors understand with no uncertain terms that there is a very short window of time to make this transition before Charlie executes the tube removal himself with the precision and skill that only a practiced hand can demonstrate. The second good piece of good news is Charlie has been released for rehabilitation. Today was moving day! As of this writing we are settled into our new room at 2 North Rehabilitation. This will bring about many changes for Charlie. He will have several hours of therapy 6 days a week. Therapy will include occupational, physical, speech and cognitive–this is just the beginning! We are looking forward to the transition and to the further recovery of Charlie. To celebrate his move Charlie took an assisted walk down the hall to the nurses station during his physical therapy session, then a ride around the 12th floor to visit some of his favorite nurses and doctors and concluded with a trip to the bathroom–another first for Charlie since his accident just over 5 weeks ago.
During his stay, Charlie has accumulated a rather large fan club here at the hospital. Before our move, many nurses and doctors that have worked with Charlie these last several weeks stopped by to check on his progress, bid him farewell and wish him luck in rehabilitation. Although rehab is located just a few floors below the children’s floor, they all wanted to personally wish him the best and good luck. As we departed, the doctors and nurses marveled over Charlie’s very rapid progress he has demonstrated over the last several days. The brain, when traumatized, can take a long time and a lot of work to heal. 5 weeks ago, expectations for Charlie were very low. Today, although no long term prognosis can be determined, Charlie has far exceeded expectations with no signs of slowing down. When one of the doctors received a compliment regarding the level of care provided to Charlie and how much that care contributed to Charlie’s success thus far, the doctor simply stated, “Charlie has been kissed by God Himself.” Our continued prayers are being heard and have made a difference. Charlie has a long road in front of him, but today we embark on the next leg of our journey and will follow the road diligently no matter how long it is until we reach the end and stand triumphantly.
As we wind down this busy day, Charlie is resting comfortably and seems content in his new space. Tomorrow the fun will begin as Charlie works to train his new doctors and therapists and indoctrinates them into his philosophy on rehabilitation and medicine. The first introduction to Charlie started today with the initial assessment performed by the rehab doctors. Upon the doctor’s entry to Charlie’s room, his gaze become immediately blank. For the next 10 minutes he remained unresponsive and failed to react to any of the doctor’s requests. When the doctors left the room Charlie suddenly regained focus. I looked him directly in the eye and said “You ignored those doctors on purpose.” Charlie responded with a sheepish grin and devilish giggle. As frustrating as they are, these little moments are the ones I am sure I will laugh about for years to come. We look forward to writing about the progress, events and upcoming antics we will witness during the next several weeks in rehab.
On a side note, visiting will continue to be quite restrictive while we are in rehab. Charlie will have multiple hours of therapy Monday through Saturday. Although we will be open to and appreciative of visits from close family and friends, we request that you contact either Rosemary or I ahead of time so we can coordinate an appropriate time that does not conflict with Charlie’s rehab schedule.
In closing tonight, I reference back to a remark I previously made. On Thanksgiving day I mentioned that bad things happen everyday. Often, we are so inundated by these “bad” things that we become immune to them and often don’t even take notice. Well, the same thing can be said of miracles. Amazingly good things happen every day all around us. Sometimes they are big and easily noticed, other times they are minor and do not catch our attention. The seemingly small things that Charlie is doing today are truly amazing. To me, given where started 5 weeks ago, they are a miracle. A miracle that every one of your prayers has helped to create. Today we achieved yet another major milestone–we can breathe a sigh of relief and not fret for tomorrow, for tomorrow will be here soon enough.
Thank you and God bless.
All my best,
December 4, 2013
(written last night)
Today was a restful day for Charlie after so much movement in so many ways yesterday.
Charlie started the day with the gastric emptying study. This test will show us how well Charlie’s stomach is functioning and if there is any further danger of aspiration. Charlie managed the test beautifully considering he had to lie still for an hour – thankfully he slept through most of it!
At this point, we are being told that Charlie will begin his adventures in 2 North (rehab) tomorrow. We are looking forward to seeing the progress Charlie will make in a more focused setting. We are also looking forward to the staff of 2 North getting to know Charlie.
The music therapist was with Charlie for a while today. Charlie tried to play possum but found himself too intrigued to completely ignore her–especially when she made up a song about his stinky dog Ben.
When not sleeping, Charlie continued to laugh at stories and even a joke from one of the PICU doctors. He also enjoyed looking at book of pictures of people and animals and taking his regular tours of the hospital.
“At the height of laughter, the universe is flung into a kaleidoscope of new possibilities”- Jean Housten.
December 3, 2013
Do you remember when Kevin wrote that one of the PICU doctors said that Charlie was a pain in the butt, and those are the kids that do the best? Well, our little pain in the butt is showing us a very satisfied smile as he pretends to sleep right now. Charlie has laughed, cried, sucked on a candy cane, walked and even talked (well, one word) today.
Charlie, for reasons only he knows, decided to participate FULLY in physical therapy. The therapist was thrilled to see Charlie doing all of the things that she has asked him in the past. Then, when she asked Charlie to help her stand him up, he chose to walk. He was so persistent in this demand that she finally took him for a brief walk into the hall and back. Later in the evening, Charlie seemed uncomfortable and when we approached him, he grabbed us to help him sit up, got to the edge of the bed and then to stand. Charlie, with a little assistance, walked to his chair demanding a late night ride.
Right after PT, the speech therapist joined us. Charlie did not choose to participate really at all with her. However, she attached the speaking valve to his trach anyway. This valve allows air to come in through the trach and be redirected to the upper airways so his voice can more easily be heard. Charlie refused to make any sounds at all for the time the valve was on. When the session was done, the therapist asked Charlie if he wanted to valve on or off, and Charlie said “Off”.
Charlie took many opportunities to share his wonderful laugh with us today. Charlie watched “A Christmas Story” twice and really enjoyed when the bad guy got shot in the butt during Ralphie’s daydream. Charlie also laughed a lot with family, friends and the nurses as we were telling him stories or sharing about our day. He especially enjoyed hearing about the “Cheese Cow Club” and all his past antics! Also the speech therapist helped us to work on thumbs up for yes and down for no – which Charlie now uses easily. It is so much easier to be able to know what Charlie does and does not want!
One of Charlie’s friends had their mom deliver lovely purple and white rubber band bracelet for me today with the money she raised from selling the other bracelets. I showed Charlie the bracelet as I was telling him about his friend and Charlie took the bracelet off my wrist and put his fingers in it – I love this kind of clarity!
Also, we (Kevin, Raeny and I) took a tour of 2 North while Charlie napped. Rehabilitation is a busy place; lots of work and lots of fun! We learned about the many different therapies Charlie will use to strengthen himself enough to come home. On one of his many hospital tours, we took Charlie to the doors of 2 North and introduced him to the idea of moving as this may happen as soon as tomorrow.
All of your prayers and wishes for Charlie have supported him in so many ways to allow this to happen! Charlie’s actions are nothing short of a miracle ~ a miracle that is shared by us all! Thank you.
December 2, 2013
“You measure the size of the accomplishment by the obstacles you had to overcome to reach your goals!” – Booker T. Washington
Such a good day for young Charlie. The last couple restful days left him ready for action today…right up until the occupational therapist showed up. Charlie awoke at 7:30 this morning full of energy. He and I spent half an hour watching cartoons…to date that is the longest duration yet that Charlie has been able to maintain fully aware focus. After cartoons and bath time we placed him in his wheelchair and were given free rein of the hospital. We took stroll down to the coffee shop for some hot coffee, and then strolled the hospital floors looking out the various windows at the great city of Syracuse. Charlie seems to enjoy looking out the windows at the Syracuse buildings. Charlie was up in his chair for an hour and half; a testament to his strengthening body. After our tour of the hospital we settled backed down in our room for rest. This afternoon his sister came for visit and was able to elicit a brief smile and giggle out of Charlie…this major achievement caught us all pleasantly off-guard. With Raeny’s help, what started as a small, unexpected giggle from Charlie grew as the day slipped by. By night-time, we were able to provoke many good laughs, giggles and smiles from Charlie. Typical of a 10 year old boy, some good stories about our family dog passing gas seemed immensely funny to Charlie. Quite frankly, even at 42, I found the stories funny as well. I guess the humor in gaseous bodily functions never gets old for us guys:) As for the laughs and giggles, to most this is such a simple thing that we take for granted, but being able to smile and laugh is a major milestone in the brain healing process. By this evening the story of Charlie’s achievement had spread through the hospital which prompted several of his nurses to come by and congratulate him. In neurological terms, this is a big deal!
In spite of such great accomplishments, Charlie did have to manage through some difficulties. The difficulty is known as Danielle, the occupational therapist. As she made her presence known this afternoon, upon hearing her voice, Charlie promptly closed his eyes and played the best possum act ever seen! Really an Academy Award winning performance. This was done not in jest, but a in a very specific and direct display of his displeasure. Charlie very much desires to go at his own pace and definitely struggles with the concept of directed therapy. This little man prefers to be the director rather than the directee. Displeasure or not, the afternoon workout included having Charlie up and standing on his own feet, helping seat himself into his chair, and then another stroll around the hospital with Mommy and Raeny. The afternoon ended with popsicles, lollipops, and laughter…a terrific treat for a Sunday afternoon.
In closing tonight, for those of you following the ongoing saga of the nasal feeding tube I have an update to provide. I’ve previously mentioned that keeping the tube properly in place is the current challenge. Charlie has removed this tube on his own 3 times now and there is no doubt in my mind that a 4th removal is on his agenda. In order to deter Charlie from removing this tube during the night while we are sleeping, the hospital provided a pair of mitts to cover Charlie’s hands. In theory these are meant to prevent him from using his thumb and forefinger to grasp the tube and pull it out. The theries do not take into consideration children like Charlie. Charlie is what statusticians like to call an outlier. Reluctantly, last night before bed I placed the mitts on Charlie’s hands. We can question how much clarity and understanding Charlie has at this stage of his recovery, but this morning I found the mitts removed from his hands and laying neatly on the side of his pillow as if to say,”Nice try Dad, can’t you come up with something better than that?” Charlie Houdini strikes again! Fortunately the tube remained in place. Call me paranoid, but I think he is taunting me:)
Our heartfelt thanks to all for your continued support and well wishes posted on the blog. Charlie enjoys hearing them almost as much as we enjoy reading them.
All my best,
December 1, 2013
“What lies behind us and what lies before us are tiny matters compared to what lies within us”–Unknown
As if in preparation for what comes next, Charlie seems to be resting and saving his energy. Today has been a day of many naps in-between physical therapy and a couple short wheel chair outings. The highlight of the day was sharing a Blue Raspberry lollipop with his sister Raeny. Lucky for Charlie, lollipops and popsicles are part of his daily therapy. These treats are used to keep the mouth, taste-buds and swallowing muscles stimulated…for Charlie, they just taste good and helps to break up the monotony of healing. It would appear that Charlie is getting a bit board and frustrated with hospital life. Charlie is not one to sit with his motor idling. All care takers are in agreement that Charlie is ready for next step…rehabilitation. Our doctors have informed us that transfer to the rehabilitation center is immanent within the next several days. This will bring about some very busy and taxing days for Charlie. He continues to have some medical challenges that are getting better, but require additional care and testing. So, with rehabilitation several hours daily along with doctor visits, the days will be heavily packed with activity. At this point, it appears that Charlie will qualify for the in-patient rehabilitation center called 2 North, which luckily is located here at Upstate Hospital. Rosemary and I will receive a tour and introduction to the center and the program early next week. We are both very excited to see things moving in this direction. The sooner rehabilitation starts the better the results. For Charlie, I think the change of scenery and increased activity will be good for him. The challenge will be Charlie is going to have to work, and work hard. But based on his progress thus far, I am confident he will rise to the occasion.
I hope everyone is enjoying a the long Thanksgiving Holiday weekend and getting in some high quality family time.
All my best,
Novemer 30, 2013
Charlie slept 10 hours last night!!! As a result, he was a bit more awake today and seems to be releasing the last of the sedative from when the nose tube was replaced a few days ago. During his occupational therapy session today, Charlie made known his displeasure about the nose tube by working very hard to do nothing that was asked of him. The therapist assured us this is typical in the children she works with. After a while, Charlie wanted to be done and to ride in the chair so he showed us he could grab things we asked him to. Charlie enjoyed being out and about in the special wheelchair for an hour. These “trips” spark Charlie’s interest in things around him and stimulate all of his senses. Charlie especially liked watching Raeny and Daddy play a huge digital floor game of air hockey. The chair has been adjusted for Charlie specifically so we will be able to use it for more “outings” this weekend.
Also today, we were able to meet with both gastrointestinal and neurological pediatric specialists. Gastrointestinal tests will help us to get Charlie’s natural digestion functioning more strongly. Neurological testing will allow us to be confident that the services and medications Charlie is receiving are the best match for continuing his progress. We were also told today that the goal is to move Charlie to rehabilitation here at Upstate early next week.
After all of the busy-ness today of therapies, evaluations, an outing ,etc. Charlie and I watched The Grinch (cartoon) and Shrek Christmas. I am sure Charlie would be encouraging all of you to start watching your favorite holiday shows now, as there is so little time with them and Charlie REALLY loves them! Charlie’s favorites are The Grinch (cartoon or Jim Carey) and A Christmas Story.
November 29, 2013
We hope everyone had a wonderful Thanksgiving. Our families joined us at the hospital to share Thanksgiving with Charlie. The hospital has a fund that provides a catered dinner for the families of the pediatric patients and it was very good. After dinner, Raeny and the cousins decorated his room for Christmas – this is a day earlier than we traditionally decorate, but we wanted the kids to create this special atmosphere of fun for Charlie. We all had many smiles watching and listening while they did this, and it looks beautiful! Charlie has a small tree with lights and his favorite Yoda ornament, blue stars strung around his door frame, a new Christmas blanket and many ornaments around the room that he and Raeny created or chose. Raeny and one of the cousins also made Thanksgiving pictures for the nurses. They were thrilled with these gifts and have them hanging in their break room to enjoy. We are grateful to have had such a lovely day all together.
Otherwise, this has been a much needed day of rest for Charlie. Charlie had a bit of adjusting to do – another nose tube, a new trach- and he has done it well. We keep a sock monkey in Charlie’s most active hand all the time and it cuts down on his trying to remove the carefully placed nose tube. Charlie has shown us a few new facial expressions in the past 24 hours. We are happy to see these new levels of awareness and curious to learn what is going on in his mind! We are getting closer to this as some work with speech therapy last night helped Charlie demonstrate that he can give us a “thumbs up” when he means yes to a question we ask him.
While our families were here, Raeny and the cousins sat on Charlie’s bed and interacted with him. At one point, Charlie made a sound (which is hard to do through a trach, especially without the voice valve). Raeny took this as her cue and asked him to do it again, then demanded he respond in her best “mommy voice” and Charlie did–all 4 times! It is inspiring to see Charlie keep working on these skills that most of us take for granted. To help Charlie stimulate the muscles and nerves in and around his mouth and throat we have started to offer him tastes of a lollipop. This has gotten more a of a response than the popsicles and will help Charlie to keep focused on improving his coordinated efforts here.
Again, we have really enjoyed our time together today and kicking off the holiday season. Christmas decorating and celebrating are always fun, and Charlie especially enjoyed the excitement. Let us all remember what it is like to be a child at Christmas and share that excitement and joy starting now. Start a new tradition, add something from your childhood traditions to share with your children, volunteer as a family at a nursing home, hospital, soup kitchen, whatever. The more love, gratitude and joy we share, the more there is for us all.
November 28, 2013 Thanksgiving Day
On this evening before Thanksgiving day, Charlie is resting comfortably. This morning he successfully endured two separate procedures. The first procedure was to replace the nasal feeding tube. We already know how Charlie feels about this. The doctors lightly sedated Charlie to ease the stress and discomfort. Within minutes of waking up Charlie made his first attempt to remove the tube. We are hopeful and confident that this form of feeding will only be needed for a short while. Besides, Charlie has made it very clear that it is not a matter of if, but when he will decide to remove the tube for the 4th time. The second procedure is a little more exciting. Charlie’s trach was replaced today with a smaller size that will allow him to pass air across his vocal cords. Within a couple days, the last step will be to place a special valve on the trach that will force his exhaled air out though his nose and mouth. This will allow Charlie to exercise his vocal cords. Speech therapy has been ordered to start this week and will focus mostly on swallowing, but he will now be able to work on speech as well. Due to the sedation this morning, Charlie has had a very low activity day and rested much of the time. I am anticipating a busy night tonight!
As this update will post on Thanksgiving Day, I would like to write a few lines regarding the spirit of the day. This is a bit of a challenge as there are not words created that can describe the ‘thankfulness’ I feel this day. I have no clue what lies in front of us before we reach the end this, as Charlie would put it, “Epic Journey.” But whatever lies ahead, we are ready, willing and able to meet that challenge head-on. But for Thanksgiving day, this one day we keep to give pause, be thankful and watch football, I will honor this day as I have never before. I am so very thankful and blessed that my son is here to share it with his family.
In the spirit of the day, Rosemary, I and our entire family give special thanks to the entire crew that responded to the call for help on October 26. This includes CAVAC, Cazenovia Fire Department, the NY State Troopers, Cazenvoia Police and Madison County Sheriffs. To our entire community, both near and far, we also want to graciously say thank you. Thank you for your support, your kindness and your prayers. We are amazed and blessed by your endless acts of kindness and love. We live in a wonderful community that we are proud to call home. To our friends and family who have been our front line support team; you have gone, and continue to go, so very far above and beyond the call of duty to help make this challenge a little easier. We cannot express to you how thankful we are for your support, devotion and many visits to the hospital bearing treats and coffee. You are all a big part of the success we have had to date, and will be part of that success going forward. We are tremondously thankful that we have access to the Golisano Children’s hospital. This is top notch health care at its finest. For myself, I specifically want to say thank you to my employer and my entire team for your continued support. To Charlie, I want to say thank you for showing me the meaning of spirit, courage and strength. You are one tough little man! Finally, thanks to God for the miracle of both Charlie and Raeny, and the two very special children that you are.
Bad things happen all around us everyday. How we choose to react to these events directly impacts our quality of life. We have chosen to find the positive in each and every day no matter how difficult the situation. Charlie, time and time again, reminds me that you can find humor in any situation. This humor has preserved our sanity these last few weeks and allowed for us to write many fun to read updates. We have received many fine compliments regarding the updates and stories we include in our blog. When you have a character like Charlie to write about, the stories unfold effortlessly.
Now that you have read my ramblings, I offer some free advice: turn off your computer. Put your cell phone down for a little while. Turn off the TV. Seek out your child, your significant other, someone important to you, your dog, your teddy bear or whatever it is you hold most precious. Seek them out and hold them tight and be thankful for what you have right now in this moment. Tonight’s advice is free because it really is cliché. Life can change in a moment with no advance notice. Take what is most dear, embrace it now, and give thanks. Do it loudly. Do it joyously. Do it sincerely. Then, if life allows, do it again tomorrow.
Happy Thanksgiving to you and many blessings.
All my best,
November 27, 2013
“Today you are you, that is truer than true. There is no one alive that is youer than you.”
- Dr. Suess
“A Miracle!”, “Very Encouraging.” and “Very Exciting!” These are some the words I have heard over the last 2 days to describe the rapid progress Charlie is making. During physical and occupational therapy on Monday, Charlie had a very difficult time holding his head up and controlling his left hand. During his therapy session Charlie was rather oppositional and became quite annoyed with the therapist. After his session was complete, when he thought no one was watching, Charlie appeared to be practicing the very exercises he refused to do for the therapist. Rosemary and I silently watched as Charlie practiced picking up a small toy with his right hand and transferred it to his left hand. He did this over and over for several minutes until he was firmly grasping the toy with his left hand. This is very much typical Charlie. He wants to perfect his moves before performing them in front of a live audience! In today’s (Tuesday) session, Charlie demonstrated much improved left hand control and head control. He was able to firmly grab my finger with his left hand, and hold his head up on his own for a short a duration. This effort earned him a wheelchair ride around the 12th floor of the hospital and visit to the ICU staff that he left behind last week. At the end of each therapy session today, the therapists actually had Charlie standing on his feet, albeit with much support. As we progress forward, the therapy and the work will become more frequent and more strenuous. This is all in effort to fully assess Charlie’s current physical and neurological status as well as needs, and prepare him for entry into the appropriate rehabilitation program. At this point, all are quite impressed with Charlie’s improvement and are very optimistic that he will be ready for admittance into one of the 2 rehabilitation facilities Rosemary mentioned within the next week or so. We are keeping our fingers crossed!
Even with this amazing forward progress we still have some challenges to overcome. The most pressing is the issue of nutrition. Charlie is not yet eating on his own and must be fed through a tube. The doctors have determined that his stomach is not yet ready for use as there is a risk of reflux and aspirating food into his lungs. The solution is a tube that runs through Charlie’s nose, past his stomach and directly to his intestines. As I mentioned a couple days ago, Dr. Charlie is not a big supporter of the nose tube. Charlie has a deep seated philosophical difference of opinion when it comes to the use of nasal feeding methods. Thus, he has taken it upon himself to extract said tube from himself a total of 3 times now. Unfortunately, in this circumstance, the need for nutrition will out weigh Charlie’s personal preference. The nose tube will be put back in place for the time being. The good news is, with Charlie’s demonstrated dexterity in performing medical procedures, he shows promise for a future medical career.
As I close for tonight, young Charlie is resting well. Every day he impresses me with his strength, endurance and heart. There is much more going on inside his head than he is able to currently do or say, but he is showing us that success is found by being stronger than your situation rather than fleeing from it. Aside from that, I am sure he is saving his energy for later tonight and his next opportunity to attempt a self tube extraction!
Many thanks to all for your continued support and prayers. Through your help and support we continue our march forward.
All my best,
November 26, 2013
Charlie did not sleep long last night – he is determined to make the most of being awake. In spite of a lack of sleep, Charlie showed everyone that he is moving forward today. Usually, Charlie responds to requests from his father and I and not so much from others. In addition to responding to requests, Charlie hugs us, squeezes our hands, holds toys, soothes himself, etc. When the nurses, doctors or therapists are in the room this mostly stops and Charlie either pulls on tubes or goes to sleep.
During OT sessions, the therapist asks Charlie to move his body in many ways and to work with areas that are slower to respond. Today, Charlie spent this time pushing the therapist’s hands away, closing his eyes and generally doing anything but what they asked. We call it spunk, the therapist calls it purposeful movement; either way it is VERY good! The therapy uses these movements – anything purposeful – to build on. After the therapist left, Charlie began to hold his toys and transfer them between his two hands all on his own. Seems like Charlie would like to design his own therapy program!
Charlie is moving closer to being able to leave the hospital floor to go to inpatient rehab. There are two amazing inpatient rehab units – one at Upstate (for higher functioning patients) and one in Schenectady (serving patients on ventilators and lower levels of awareness). The level of Charlie’s ability to follow requests consistently will determine which facility is best suited to his needs. If Charlie continues to show the spunk he did in therapy today, he may be eligible for the inpatient rehab at Upstate.
Also today, Charlie had a very special visitor. NFL Hall of Famer and the Assistant Athletic director at SU, Floyd Little shared a few minutes with us today. Unfortunately, Charlie slept through the visit, but we enjoyed meeting Mr. Little and very much appreciated the time and energy he shared with us today. Go SU!!!
Lastly, WOW!!! It is amazing to think of everyone wearing their Charlie shirts today. We don’t know how to thank all of you for your efforts (not just the t-shirt fundraiser – everyone) so we thought we would let Charlie help. Here’s Charlie…
November 25, 2013
As Kevin wrote yesterday, “He (Charlie) spent a lot of time reaching out with his hands, exploring what is around him and pulling incessantly on the tubes currently sticking out of him. Inside his mind I am sure he is plotting his next tube self extraction.”
Sure enough, Charlie no longer has the nose tube in! He extracted it very quietly, so quietly that Kevin thought he was sleeping! As a result, Charlie is on fluids only until tomorrow morning when the doctors will evaluate the possibility of using the stomach feeding tube again. The reason that tube has not been used is that Charlie was aspirating the liquid food into his lungs . However, Charlie does not have the same risks for aspirating that he had before and we are hopeful to be able to use this method of feeding again.
Otherwise, Charlie had a very alert and active day with Dad. Kevin left with Raeny about 2pm and Charlie has been sleeping like a sweet angel ever since. He wakes briefly when we need to fuss with him, gives me a hug and goes back to sleep. I guess he wore himself out fighting the “wet-willies” and is smart enough to rest up before Daddy comes back for another round!
Raeny and I had breakfast at Dave’s Diner at Common Grounds this morning. It was amazing to see the group that was making/selling products to raise money for Charlie and to see the staff all wearing their Charlie shirts. Thank you all for your efforts and support. Also, thank you to the providers at the Synergy Center and to Ali and Circa for for their equally impressive fundraising efforts tonight.
“Healing is impossible in loneliness; it is the opposite of loneliness. Conviviality is healing. To be healed we must come with all the other creatures to the feast of Creation.” (pg.99, The Body and the Earth by Wendell Berry, The Art of the Commonplace: The Agrarian Essays.)
Thank you all for coming together to help us heal.
November 23, 2013
Well after a very active day yesterday, the night went as I expected! Charlie slept very soundly…for about 4 hours. After that, he was ready for action again. From the observations of this newly Google educated neurologist, Charlie is regaining more mental awareness and is actively exploring, or better yet, rediscovering his abilities. Some of this is the natural brain healing process, and some of this is the decrease in pain relieving and sedative type medications. Since he and I were awake in the wee hours of this morning, I took the opportunity to lie down next to Charlie and let him lead the interaction. He spent a lot of time reaching out with his hands, exploring what is around him and pulling incessantly on the tubes currently sticking out of him. Inside his mind I am sure he is plotting his next tube self extraction. During this time he would take my hand and place it on the sock monkey riding shot-gun on the side of his bed. He would than return my hand to its original position, followed by reaching out with his own hand and grasping the sock monkey himself. Because at times I can be a bit of an instigator, on several occasions I threatened Charlie with a dreaded wet-willy. This elicited a clear defensive response of Charlie reaching up and covering his ear with his hand. Finally, we all enjoyed Charlie’s renewed abilities to provide a much welcomed hug!. Although seemingly simple things, these are all good indications of Charlie’s healing brain! From a medical standpoint, the nurses and doctors continue to be pleased and impressed with Charlie’s rapid progress.
Aside from that, Charlie enjoyed a nice visit with his sister Raeny. She enjoyed reading to him and showing him pictures she drew for him. Charlie and his sister have a natural bond that only a brother and sister can have. Her visits and presence in the room always liven Charlie up. He remained awake and alert during their time together. Raeny took the opportunity to tickle Charlie and was thrilled with his movements to block her attempts. It was definately good for the both of them to share this time.
In closing, our gracious thanks to those who organized and participated in the ‘Stay Strong Charlie’ shirt campaign. Your efforts and willingness to support Charlie and his family are impressive and very much appreciated. For those responsible for organizing the efforts, you should be very proud of your accomplishments and success. The good deeds that you do to today will grace you again and again in the future. I am forever touched by the generosity and support of our community.
November 22, 2013 6:30 pm
“Millions and millions of years would still not give me half enough time to describe that tiny instant of all eternity when you put your arms around me and I put my arms around you.” ~Jacques Prévert
Today has been a very active day of settling into Charlie’s new room. It was time for a change a scenery. This is a significant milestone for Charlie. Although Charlie continues with some physical challenges such as a feeding tube and the trach, his overall general level of health has progressed enough that he no longer warrants the highest level of vigilance and care provided in the ICU. The difficult part is getting to know an entirely new staff of doctors and nurses. Charlie worked very hard to acclimate the ICU staff to his schedule and antics…now he must start over:) To celebrate his move Charlie rewarded us with his most active day yet. He was awake for over 9 hours straight. This is the longest stretch yet. As we have mentioned in the past, during his awake times Charlie moves in and out of mental clarity with varying degrees of awareness. Today, Charlie remained quite awake, alert and responsive for a majority of those 9 hours. During this time Charlie showed us he could grasp objects with his hands upon request and then hand them to individuals as directed. This a terrific accomplishment. Charlie spent well over an hour performing these exercises. Charlie was also able to clearly communicate his dislikes…such as occupational therapy. Charlie’s response to displeasurable requests was to simply close his eyes, turn his head away and ignore the therapist, his mother and I. Charlie made it very clear, in his own little way, when he had enough and was ready for a break. To celebrate his remarkable success, I bent over Charlie to give him a hug. He responded clearly by extending his own arm over my head and around my neck, returning the hug. We cannot expect everyday to be as active as today, but tonight I will sleep with a smile and as proud of my boy as I have ever been. I would like to say I expect Charlie to also sleep well tonight after such an active day. But, it is Daddy’s night at the hospital thus I expect that is just wishful thinking.
Many thanks to all for your continued support, prayers and well wishes.
All my best,
November 22, 2013
“I eat obstacles and problems for breakfast” – author unknown…doesn’t this fit Charlie? Thank you, Charlie, for showing us all how to do this!
Today I had the challenge and privilege of introducing Charlie and our experience this past month to the staff of the children’s unit at the hospital in preparation for Charlie to be moved out of ICU. Initially, it was difficult to relate the facts of Charlie’s story. As I continued to explain how things have gone, I was very proud of Charlie’s journey toward health and our understanding of and participation in what Charlie needs to reach this goal. I was encouraged by the staff’s genuine regard for both Charlie’s progress and respect for our intention that Charlie will have a full recovery. Each of you reading this are a vital part of Charlie’s story, strength and success ~ words can not express our gratitude enough.
This evening Charlie moved out of the ICU. As I type, Charlie is sleeping comfortably in his new room. Granted, his room is just a few feet down the hall from the ICU, but it is a huge step for us. The doctors, nurses, residents, respiratory care, OT/PT, and entire staff of the Pediatric ICU hold a special place in our hearts for their care, patience and respect of us during our stay with them. They believe in Charlie and have helped him move forward while teaching us what we need to know to continue his care. These are truly people who are living their calling and many lives are saved and richer from their courage to do so.
I shared with the nurses on the new unit tonight the news video of Charlie and Raeny from the bracelet fundraiser. I am looking forward to seeing the staff here get to know Charlie and share in his “eating” future obstacles and problems and in his successes. We have, at least for now, been able to help slow Charlie from pulling the tubes and sounding the alarms so much…we will have to wait and see what he thinks of next!
Lastly, a HUGE thank you to the staff, students and parents of Burton St Elementary!!! The change drive was an amazing success. Again, we are humbled to live in such a caring, compassionate and giving community.
November 21, 2013
Charlie is, I believe, getting bored with ICU life. As I write, he is lifting his head and chest as if he is trying to go somewhere – which does not include going to sleep. Typical Charlie!
Today Charlie and the amazing Occupational Therapist worked together to get Charlie sitting up straight on the side of his bed. This is not an easy thing for Charlie – or for the therapist! However, Charlie did sit up and was receptive to several other requests like looking at his father, looking at me and following Raeny’s picture with his eyes.
Charlie is continuing to move through phases in the rebooting of his brain/body connection. It is as if he is revisiting early developmental stages and practicing them to make sure the pathways that allow these motions are still functioning.
We are thrilled to continue to see fine motor skills, different movements or patterns of movements with his body and that he will work to follow requests that are new.
Textures are a large part of this process right now. Charlie is moving his hands over many things and feeling, several times in a row, the sensations they create on his hands. Everything from his stuffed animals, the tubes around him, my hair, peoples hands or faces, the rails on the bed, etc is of interest to him now. In addition, Charlie continues to make us aware of his preferences by pushing hands away, moving objects near him like his blanket or a stuffed animal and even on occasion pulling us closer to him.
We are told that in the next few days Charlie will move out of pediatric ICU and to the Children’s floor. This is possible because Charlie is no longer on the ventilator and they are successfully feeding him through the nasal tube. We are excited about this change and looking forward to further, more definitive conversations regarding rehabilitation services for Charlie.
We are very grateful for the continued respect and support from the community. The t-shirts look great on the Caz Firefighters in the picture they texted us tonight!
November 20, 2013
“All you can try to do is be better than you were yesterday, everyday.”
― Marcus Harrison Green
Today was a better yet busy day for Charlie. After a predictably active night last night, we started the day by once again placing the feeding tube in Charlie’s nose. This time it was a success and the tube ended up in the correct spot! This tube will allow liquid food to by-pass the stomach and flow directly into the lower digestive system. This will limit any chance of the liquid food from refluxing up his wind pipe and aspirating into the lungs. This will only be needed for a short time, but is necessary to protect Charlie’s healing lungs. The question remains whether Charlie will allow this tube to stay in place or not–my bet is “or not.” Charlie continues to breath on his own with no issues. He remained awake and alert through most of the morning. This afternoon physical therapy came to visit for light work out. We had Charlie sitting up and placed in a chair for short duration. After spending over 3 weeks lying flat in bed, a short duration sitting in a chair left Charlie quite exhausted. After this excitement Charlie spent much of the afternoon sleeping peacefully and resting up for this evening’s Daddy time. As expected, the evening has been quite active. Charlie continues to have bouts of brain storms mixed with times of clarity. Remember, this is part of the process and expected. After several hours of high activity accompanied with many alarms, detached wires and tubes and bedding in complete disarray, Charlie is finally quiet and sleeping peacefully…for now. It is still early yet. On “Daddy” nights I have come to expect a second act which usually occurs during the hours of 1 to 4 a.m. For now I will enjoy the peace and quiet.
Up till now, we have been focused on the day-to-day and we have purposely not commented much beyond what is expected beyond the next day. After nearly 4 weeks in the Intensive Care Unit, we are cautiously hopeful that our time here will soon come to an end. Provided Charlie continues to improve physically, within the next week he will be moved to a regular room. This will be the beginning of the transition from Intensive Care to rehabilitation. Rosemary and I are working daily with the various health care providers to understand what the next weeks and months will look like, and there is still much to be determined. The good point is, we are having these discussions and slowly moving forward. Progress is being made…Charlie is staying strong and moving forward with all the grace and style we have come to expect from our little man.
Our continued thanks and gratitude to all for your never ending support. The “Stay Strong Charlie” shirts are awesome and I will wear mine proudly!
All my best,
November 19, 2013
“Start by doing what’s necessary, then what’s possible; and suddenly you are doing the impossible.”
As we progress along this road, some days are going to better than others. Today I would classify as bumpy ride–kind of like driving on route 81 through Pennsylvania in an old truck. For the last couple weeks, Rosemary and I have been on a 2 night rotation. We each spend a majority the daytime with Charlie and the array of doctors and nurses. In the evenings, one of us will go home to take care of Raeny. The going and the staying is done in 2 consecutive night intervals, then we trade. The routine is difficult, but seems to be working. At the same time, Charlie seems to have developed his own cycle. For the most part, the nights that Rosemary stays at the hospital he sleeps well with only moderate interruptions. The nights that I stay at the hospital tend be high energy/high activity nights that extend into the early morning hours. Sunday night was my last night at home with Raeny. Today, as if on queue, as soon as I showed up at the hospital Charlie went from 0 to 60 in 3 seconds. We started with a lot of moving around in bed, popping the oxygen sensor off his foot and sounding the alarms…again and again. Next we progressed to pulling the cover off his trach…a skill he has now mastered. Then for good measure, he regurgitated on me…yuck! In the midst of the chaos, Charlie reached up and pulled the feeding tube from his nose. This was all in my first 2 hours here and before I had even finished my first extra-large coffee. For those of you who know Charlie well, chaos is his favorite form of artistic expression. He can also be a bit of a comedian and instigator… which is a skill he most often utilizes on his Dad. Surprising to me, as I am sure he inherits those comedic traits from his mother. It is doubtful that Charlie is doing this entirely on purpose, but at times I cannot help but think this is payback for all the tickle tortures and wet willies he suffered at my hands.
As frustrating as these “highly active” sessions can be, from this we observe that Charlie is continuing to build strength and regain energy. Even more positive are Charlie’s abilities to isolate sources of discomfort and accurately act upon them. Maybe next week we can add “appropriate” and accurate actions to his repertoire. Right now, It takes a lot energy and oversight from Rosemary, myself and the great nurses, friends and family that are here assisting to keep Charlie calm and out of harms way. As Charlie’s awareness is increasing each day, he needs considerable help tolerating the wires and tubes as not to cause injury to himself and damage to the equipment. As a result of today’s self-removal of the feeding tube in his nose, we will have to repeat the procedure again. For most it is a very simple procedure that typically takes 5 minutes. For Charlie, somehow it takes repeated attempts to get the tube down his throat and into the correct position. We have tried twice unsuccessfully today–the last attempt resulted in the tube going all the way down to Charlie’s stomach, curling back up the throat and poking out of his mouth–something no one here has seen happen before. Leave it to Charlie to choose this time to express his originality. Tomorrow morning we will try again. That said, we are overjoyed that he is requiring this level of assistance as his current antics demonstrates the existence of some level of physical coordination, emotion and expression. Beyond this, I am very happy to report that Charlie has managed 35+ hours breathing on his own and going strong. Unassisted breathing is a very important milestone that needed to be achieved as we start our preliminary rehabilitation discussions.
Daily life will be a teeter-tauter of ups and downs, but today the ups have again surpassed the downs. We have much work ahead of us, and Charlie will be the one who will have to work the hardest. But, he is certainly showing us the strength, resilience and tenacity to overcome all obstacles.
My continued thanks our very extensive support network and continuous well wishes and prayers.
All by best,
November 18, 2013
The… patient should be made to understand that he or she must take charge of his own life. Don’t take your body to the doctor as if he were a repair shop. ~Quentin Regestein
Charlie has taken charge again! Though he has spent a great deal of today resting (so he can keep his father up tomorrow night), when awake he has made it known he is leading the way. Charlie has demonstrated improvement on all levels. The first is that Charlie is breathing on his own again, the ventilator was turned off earlier today, and Charlie is holding his levels well.
Mentally, Charlie has more clarity in sharing his likes and dislikes with us. Charlie will sometimes help the nurses by beginning to turn the way they ask him to or completely choose to ignore a request by closing his eyes and then looking away. Charlie is tracking people with his eyes and can more quickly locate the new voice in the room. Charlie continues to pull at the tubes and things he has on him and seems to smile when we ask him not to.
Emotionally, Charlie is expressing himself through his eyes and facial expressions. It was very sweet today to see Charlie relax his body and breathe more deeply while his sister was sharing pictures she made for him. We had many laughs over the faces Charlie has made at various requests that he did not feel the need to go along with.
Physically, Charlie is more flexible and able to move himself about in bed. Charlie enjoyed a 2 hour nap in a chair for the first time today.
Each day brings a different pace, challenge and joy with Charlie. Thank you for sharing these with us.
November 17, 2013
(written last night)
Thank you all for the lovely writings in the blog for Charlie–we have enjoyed reading your kind words, updates, prayers and wishes for him. Also, it is fantastic for him to hear from so many of his friends during this time.
Charlie, as you know, had an active night last night and an active early afternoon today so he has been resting for a while now. Charlie’s activity has shown us the next challenge we are facing. It was found that Charlie has been aspirating his food into his lungs. In other words, when pressure is applied near or in Charlie’s gassy stomach it causes an acid re-flux reaction which then brings the food “down the wrong pipe” into his lungs. This pressure may come from Charlie arching his body, through the ventilator pushing air into his lungs, laying too flat while the feeding is happening, etc. As with many of the challenges Charlie has faced, there is no one direct solution.
The doctor has changed Charlie’s medication to be less sedating and more relaxing to his muscles. This allows Charlie to be more awake with less agitation and less arching. Charlie is breathing very well on his own with minimal help from the ventilator and his chest x-rays are improving. The doctor will continue weaning from the machine to reduce any unnecessary pressure on Charlie’s system. With less arching and less tubes, Charlie will be able to sit in a chair each day in addition to sitting up in bed – all of which allows for less aspirating. The more immediate assistance given was to insert a feeding tube in through Charlie’s nose that allows all food to bypass the stomach and give it a much needed rest.
One of our greatest joys right now is that Charlie looks like Charlie! His color is great, the swelling that was in his face is almost gone and his awareness has increased enough that for periods of time he moves, makes faces, etc that are all his own. Way to go Charlie!
November 16, 2013
(written last night)
For those of you interested in yesterday’s Charlie vs. Daddy competition, I think the outcome was a tie. Charlie motored on until about 12:30 a.m. at which point we both passed out exhausted. He definitely gave me run for my money. Out of that, the good point is Charlie is starting to transition back to a more normal sleep/wake schedule. He was awake throughout most the of the day on Thursday, then slept very soundly throughout the night. In fact, when the nurses came in for his 4 a.m. check and rotation, he did not protest and went right back to sleep upon their completion. As far as sleeping at the hospital goes, it’s the best night sleep I’ve had up here yet–albeit I use the term “best” very loosely.
Now, as I sit in my corner chair this early Friday morning sipping the previous night’s cold coffee, Charlie is sprawled on the bed in odd positions that only Charlie can find comfortable. The edges of his bed are now lined with pillows and bumper pads in attempt to keep arms and legs safely within the confines of the bed and grabby hands away from the monitors and wires. I am comforted to hear Charlie’s rhythmic snoring and tickled to see, in spite of our best efforts, a foot extrudes from under the bumper pad and hangs mockingly from the side of the bed. It is the little laughable moments like these that lift my spirits and provide the energy for the challenges of the day.
Now as we fast forward to the end of the day, and Friday comes to a close, I’m happy to report the day has been much a repeat of yesterday. Charlie remained wakeful throughout the day. Although he continues to experience the “brain storms,” today has been much less intense and Charlie progressed throughout the day with no sedatives required to calm him. He did very well with his physical therapy and was lucid enough to respond to some simple direct commands such as removing a wet wash cloth from his face. In spite of the trach in his throat, he was able to force enough air though his vocal cords to make his frustration known to the therapist. The sounds he is able to make sound just like Chewbacca from the original Star Wars movies. These are all very simple things, but exciting none-the-less. With less medication in Charlie’s system, today he was more in touch with his environment. He more frequently responded to simple commands such as, “open and close your mouth” and “blink your eyes.” Most importantly, he demonstrated some limited use of fine motor skills by using a thumb and finger to remove a wash cloth from his head. He has performed this task twice now. Better yet, he demonstrated this ability this evening in front of the Rehabilitation Doctor and the Attending Doctor. Both doctors were very encourage to see these functions so soon after the accident and prior to the start of formal rehabilitation. Beyond that, Charlie’s breathing and lung function continue to improve resulting in further reductions on the breathing machine. The progress speaks volumes to Charlie’s inner strength and desire to be well.
We have trials and tribulations ahead, and much work to be done. But tonight I am content. Progress, no matter how small, has been made.
It was Confucius who said, “It does not matter how slowly you go as long as you do not stop.” Keep going my boy–you make me proud.
All my best,
November 15, 2013
(written last night)
Today has been and incredibly long day for Charlie–the length of my update is going to depend entirely on whether young Charlie will give dear old dad much of a break. The “storming” Rosemary mentioned yesterday has continued in varying intensities throughout the entire day beginning at 8:30 this morning. As I begin this update it is now 9:30 pm and he is just beginning to settle down. Storming is considered normal after a brain injury and is part of the healing process. It can be a little unsettling to watch and may continue for some time. The doctors continue to decrease the sedative medications in order to increase Charlie’s awareness. As the medications are decreased, the duration and intensity of the “storms” may actually increase. As the doctor puts it, we are looking for the “sweet spot” with the medications. We reach this spot when the medications are at a level that allows Charlie to be lucid, yet comfortable. This is a process of trial and error and requires multiple adjustments as the brain awakens and heals. The right combination varies from person to person and there is no perfect recipe. Sound frustrating? Absolutely. Modern medicine has made many great advancements in recent decades, but a true understanding of the brain, how it works and it’s capabilities remain in many ways a mystery–I know this as Google told me so:)
On the positive side, Charlie’s general physical health continues to improve. The inflammation in his lungs has shown improvement and doctors have again begun the process of backing off the ventilator; just much more slowly this time as not to aggravate the inflammation, but rather give the body room to build strength. He is also healing well from the tracheotomy surgery, and we are seeing great improvement in his swallowing. This is a major positive sign. In addition, Charlie experienced his first real physical therapy session today. The therapist fully extended and stretched all limbs and had Charlie sitting up in bed for 20+ minutes. All vital signs remained normal during the exercises, which is an excellent indication of Charlie’s physical strength. We really hoped the physical therapy would burn off some of Charlie’s excess energy, but true to the spirit of Charlie it seems to have fueled his energy levels. Soon we hope to transition Charlie to spending some time sitting in a therapeutic chair. With less and less sedative drugs in his system Charlie is very much showing us his inexhaustible reserve of energy. With all this energy we struggle to find adequate outlets to direct the energy. Tonight it seems to be a direct father vs. son challenge to see who can hold out the longest.
Looking forward many continue to ask what comes next. The truth is we do not know. Recovery from this type of injury is day by day, and the path for tomorrow is defined by today’s achievements–Charlie has control here. Yesterday a dear friend asked me what I hoped and expected for Charlie. There is only one clear answer to this question: a full recovery and nothing less. Charlie’s mother and I refuse to think any other way. We will not allow any doctor, nurse or otherwise to speak of any limitations for Charlie. Why? Because Charlie has blown by every limitation ever placed on him from the day he was born. I read all the “What to Expect” parenting books, but unfortunately these books were written before Charlie was born. Charlie has had his own agenda right from the very beginning. With Charlie, the only thing I knew to expect was the unexpected. From the night he was admitted into the ER, every expectation mentioned, Charlie has exceeded. In the last few weeks Charlie has reminded me of several important lessons that I have misplaced in middle age: limits are an illusion created by people who wish to stop pushing themselves to a higher level of achievement, God exists and grants miracles every day, and the power of community and prayer knows no boundaries. So when asked what my expectation is for Charlie I answer to you, “The sky is the limit.” Everything will be OK when we reach the end of this road…if its not OK, then we have not yet reached the end.
In closing I would like to make a few mentions of gratitude. First and foremost, I want to say thank you to my employer Marquardt Switches. Your understanding and flexibility to allow me this time to take care of my family is very much appreciated. Marquardt is a great place to work. Secondly, to my dedicated departments at Marquardt, thank you for your perseverance and drive to achieve my objectives in my absence. Keep up the good work! To Bill and Catherine, your support for Rosemary and Charlie on a daily basis does not go unnoticed nor unappreciated. Finally, to the extended community following Charlie’s progress, sending positive and supportive messages, leaving food and treats at our houses, and the many other supportive activities in process, I am truly humbled by your continued generosity.
Until tomorrow, all my best,
By the way it’s 11:45 p.m. and Charlie is still going strong!
November 14, 2013
What a day yesterday! Charlie, after resting almost 20 hours, is in full brain awakening mode! Charlie had about an hour of quiet in the morning where he was responsive and held my finger for a while. Since then, Charlie has been experiencing “storming”. Storming is when the flight or fight reaction from the brain is inappropriately stimulated due to injury; in this case lack of oxygen for an extended period of time. Thankfully, these episodes are less severe than earlier ones. With the less intense storms, Charlie is easily able to maintain his heart rate, breathing and oxygen levels.
Doctors are monitoring how Charlie’s lungs are progressing and are encouraged to find no infection so far. The rest his lungs are getting by being on the ventilator will allow the healing process to continue to move forward more smoothly.
Also, we are hopeful that physical therapy will begin tomorrow, which will allow Charlie an alternate focus and a way to use up some of his energy so he will be able to rest well each day. Also the increase in movement, we believe, will be an important part of Charlie’s healing process.
A big thank you to the Duerr family for the “Believe & Hope for Charlie” bracelets! And to everyone who pre-ordered a “Stay Strong Charlie” T-shirt.
Novemeber 13, 2013
Charlie’s nurses are awesome! Right now they have him is hugging his stuffed dog Bear-Bear. So he looks really cute and he can’t reach the lines he was trying to get tangled in earlier!
Charlie has been bursting forth in any way he can–breathing on his own, wiggling out of his bed position, kicking his feet off the bed, pushing away nurses, squeezing his eyes shut to answer questions or keep the lights out, etc.,and yesterday was a much needed rest day for his body and mind.
The staff here has determined that Charlie’s difficulties in breathing were caused by his lungs being weakened from the accident and by Charlie breathing so shallowly when he is upset. The combination of the weakened lungs and the quick breathing creates a great deal of stress in the respiratory system and can be exhausting and painful for Charlie. Being on the ventilator allows Charlie to rest his mind and body so he can prepare for the next steps forward.
Charlie, as many of you know, is not a child who easily takes a break to rest physically – and never rests mentally (another trait from the Thompson side of the family)! Yesterday was a chance for Charlie to see that rest is not so bad and leads to rejuvenation (I hope the nursing staff is prepared today).
Also yesterday, we were honored to have a couple of the firefighters from the scene of the accident visit Charlie. We appreciate the opportunity to thank the first responders for saving Charlie and to share in their relief when they see how well Charlie looks and is doing. We gratefully encourage all first responders to call or text to let us know when you are ready to visit Charlie, or when you would like to see him again.
November 12, 2013
As I predicted yesterday, Monday came right on schedule. I also mentioned that we are living day by day, and each day brings it’s challenges, difficulties and successes. Today brought about all of these. Our success for the day is the doctors removed the chest tube installed in Charlie’s side. This tube was placed to help drain excess fluid from the lungs. This is one less “thing” sticking out of Charlie and adds to improving his general level of comfort. Our difficulty for the day is Charlie has hit a bump in the road on this journey to recovery. Around mid-day Charlie’s breathing became more difficult and strained. He struggled throughout the afternoon to maintain adequate levels of oxygen in his system. By the end of the day Charlie had exhausted himself trying to keep pace with the needs of his body. After several stressful hours of trying to keep Charlie comfortable the decision was made to put him back on the ventilator. When people with severe lung disorders have been ventilated for extended periods of time it is not uncommon to have to go back and forth between unassisted and assisted breathing. The fact that Charlie’s first attempt lasted nearly 48 hours is remarkable. The doctors are now working to determine whether infection or fatigue are the cause of the difficulty.
For those of you reading this and traveling this journey along with us, understand that there will be ups-and-downs along the way. That said, the doctors assure me this is only a temporary setback, and Charlie’s lungs just need some more time to heal and regain their full capacity.
In typical Charlie fashion he has made the transition back to the ventilator with grace and style–the sounding of the alarms seem perfectly timed to each time Charlie’s nurse sits to eat her dinner, and Charlie lies wide-eyed awake despite repeated doses of sedatives. We remain strong and upbeat and refuse to dwell on the negative; rather we focus our energy on overcoming the negative.
Thanks to all for your continued well wishes, messages and prayers. I’ve come to look forward to ending my day reading your messages out loud to Charlie and writing about the day’s events. Good or bad, it helps to bring closure the day and let go of the stress that comes with being a parent under these circumstances.
In closing I say, being a parent is the most important thing I will ever do and if I don’t do this well, no other thing I do really matters.
All my best,
November 11, 2013
I truly wish I had a lot of “new” news to report today, but it has basically been quiet and status quo. So instead I offer you the random ramblings of an overtired dad. The big news from yesterday is Charlie has successfully taken control of his own breathing. We are 24 hours plus with unassisted breathing. To our relief, the ventilator was removed from Charlie’s room tonight. After several nights of listening to that machine’s array of beeps and alarms we were overjoyed to see it wheeled out of the room. Beyond that, today has been mostly a day of rest for Charlie filled with lots of sleep and listening to us read books aloud. The humor in the day comes to me by watching the nurses try to adjust Charlie’s sleeping positions. Nurses tend to be very orderly by nature. They like to see their patients laying straight in bed, with heads properly supported by pillows and slightly elevated. Charlie prefers to lay in bed at odd angles with various appendages hanging off the edge of the bed. Most often it is foot sticking out and occasionally an arm. Charlie likes to slide to the bottom of the bed and lay crooked with his head cocked at what would appear to be unnatural angles. The nurses, at least the one’s that have not given up, like to come in and straighten Charlie up, pull him to the top of the bed, and arrange feet and arms within the confines of the bed. To pass time tonight, I measured the amount of time it takes to arrange Charlie according to the nurses preference, and then for Charlie to arrange himself back to his typical state of being. The best time for the nurses was 7 minutes and 30 seconds to have Charlie arranged all neat and orderly. The best time for Charlie to migrate back to his cock-eyed and controrted position is 2 minutes and 35 seconds. Most of the nurses have come to the conclusion it is best to let a sleeping Charlie be as he is, but a few still seem to think they can beat the odds. I just sit back and enjoy the opportunity for a good chuckle and celebrate the unique individuality and stubbornness of my son. The stubbornness definitely comes from his mother’s side of the family!
Moving on, over the last couple days the question has been posed to me several times regarding what comes next. We have been in the ICU for 15 days now, and will continue here for at least another week. When this journey started 2 weeks ago, we were living minute to minute and holding our collective breaths. After few days Charlie showed his remarkable resilience and we upgraded to hour to hour. Now I am happy to say we are day to day. Today, when asked what comes next, after deep consideration I simply answered, “Monday.” Each day continues to be filled with challenges, difficulties and success and that will continue to be the trend until we reach the end of this part of the journey. There really is no more to say on that topic.
As I close my ramblings for the evening, I will mention that tonight I had the opportunity to just sit and chat with one of the 5 outstanding doctors that run the Pediatric ICU at The Gilisano Children’s Hospital. Typically the ICU is very busy and active. To have the chance to sit and chat with the charge doctor outside of their regular rounds is rare. As we pondered the many challenges we faced over the last 2 weeks this doctor was quite frank with me in pointing out that Charlie truly has defied all odds to be where he is today. For that I am incredibly thankful in ways words cannot describe. But the doctor was clear that this journey has just begun. We still have a long road in front of us and we can not predict what lies at the end of this road. What we can say is Charlie has shown incredible strength, resilience, persistence and stamina. He continues to charm those around him even when he is not aware of what he is doing. The charm comes from my side of the family:) No matter the challenge of the moment, we find a shiny spot that makes us give pause, smile and appreciate the spirit of our Charlie.
Looking forward, “We may run, walk, stumble. drive, or fly, but let us never lose sight of the reason for the journey, or miss a chance to see a rainbow on the way.”
― Gloria Gaither
Many thanks to all for your continued support, well wishes and enormously generous gestures.
All my best,
November 10, 2013
“I am never alone wherever I am. The air itself supplies me with a century of love. When I breathe in, I am breathing in the laughter, tears, victories, passions, thoughts, memories, existence, joys, moments, and the hues of the sunlight on many tones of skin; I am breathing in the same air that was exhaled by many before me. The air that bore them life. And so how can I ever say that I am alone?” C. Joybell C.
Charlie has shown us that we are truly never alone. He has used the power of all of our love, prayers, kindness and intentions for him to maintain breathing on his own again! Charlie is no longer requiring any breathing assistance. With the help of the trache, Charlie is maintaining his oxygen level, heart rate and respiratory rate with no problems even when the nurses irritate him! (not on purpose of course – they take excellent care of Charlie…he just doesn’t always agree to be cared for when they would like to do it).
We are relieved and grateful that Charlie has made this fantastic step and are looking forward to all the small steps over the next few weeks – including more moving around, eating, going from the ICU to rehab, etc.
November 9, 2013 7:00 am
Charlie has had an alternately restful and active post-surgery day. He is recovering well, had his catheter removed and will hopefully be off the ventilator today (Saturday). With the tubes being removed, Charlie has had the freedom to wiggle about and lay on his sides in bed – meaning the nurses are having to rearrange him constantly to keep him there!!!
Also yesterday (Friday), Charlie started some OT/PT work. They sat Charlie up at the side of the bed to evaluate the best ways to move him out of bed on a regular basis. This weekend, Charlie will have his own very cool chair to begin sitting in, both as a way to get him moving and to stimulate a different set of brain activities.
Charlie is getting used to the trache and feeding tubes and seems relieved of much of the discomfort from the tubes that were in his throat and nose. As of last night (Friday), it seems that Charlie is able to swallow without pain which is a great step in his healing process.
While resting Charlie enjoys being read to (we just finishing My Side of the Mountain by Jean Craighead George), listening to stories of things he has done, your posts from the blog, talking or singing, and being gently massaged.
We would like to thank everyone who has made donations of any kind or assisted in the various fundraisers that are underway. We are blessed and honored that you are all pulling together and initiating such creative, caring, and kind measures of support.
November 7, 2013 10:00 pm
Tonight I sit in quiet content and gaze upon my sleeping boy fresh from surgery. A very healthy dose of anastetia assures me I have at couple hours of quiet tonight! Luck was in Charlie’s favor today. Two pediatric surgical teams were able to clear time to perform both a tracheotomy and a feeding tube. Originally only the tracheotomy was scheduled for today which would have required an additional surgery next week to place the feeding tube. Performing both procedures at once saved Charlie (and mom and dad) additional stress. The surgical procedure was successfully completed in just over an hour. The most difficult part of the procedure was deciding just how much anesthetic Charlie would require. You see, he has now been labeled as a difficult child to sedate. Two anesthesiologists were consulted to determine how best to knock this boy out! Right before they took Charlie down to surgery, he was provided healthy doses of a sedative and morphine. This was meant to assure a sleeping Charlie by the time he reached the surgical room–they will never learn! Much to the doctor’s dismay, Charlie lay in his bed wide-eyed awake listening to the surgical discussion.
Now asleep as I reflect on the day, Charlie looks calm and peaceful. All tubes have been removed from his mouth and nose, and he has only a simple ventilator pipe attached to his neck. Charlie looks like Charlie again. Raeny will be thrilled her brother no longer looks like an alien as she so eloquently describes him.
Looking forward, we are anxious for Charlie to wake up from the surgery. We believe he will be much happier with the tubes removed from this throat and nose. He will need a few days recuperate and will be in ICU for that duration. But, with the tubes gone and calmer Charlie, we can continue healing, get to work on assessing his neurological functions and formulating his rehabilitation strategy. Another mile of the journey has been traveled and we keep moving forward.
“You never know what’s around the corner. It could be everything. Or it could be nothing. You keep putting one foot in front of the other, and then one day you look back and you’ve climbed a mountain.”
― Tom Hiddleston
Thank you to all for your prayers and well wishes today. Charlie and his family are blessed many times over.
All my best,
Novemeber 7, 2013 6:00 pm
I just heard from Rosemary that Charlie just back from the surgery and he did great!
Thanks for all of your prayers!
November 7, 2013
Good news for Charlie today. The MRI scans from Tuesday night showed no spine or neck injuries. This is a big win for Charlie and allowed the doctors to finally remove the cumbersome neck brace from his neck. It was certainly nice to see Charlie’s full face again. It also has allowed Charlie a little more freedom to move, sleep and rest in a more natural and comfortable posture. Unfortunately, Charlie is not content with his day’s progress. As we have communicated in past updates, Charlie remains on a ventilator. Removal of the ventilator has been delayed several days due to the fact that Charlie has some pneumonia and he has not demonstrated strong and consistent gag and swallowing reflexes. Although the ventilator has some continued benefits in this situation, long term use of a ventilator can actually contribute to additional problems. In order to step down from the ventilator and allow doctors the opportunity to better assess Charlie’s reflexes the decision was made perform a tracheotomy. The earliest this could be done was Friday or possibly next Monday. Charlie decided this needs to be done sooner as the tubes running down his throat are causing him a great deal of anxiety and discomfort. To demonstrate his great displeasure, Charlie began biting down on the air tubes and disrupting the flow of air. Every time he does this all kinds of aggravating alarms go off and the machines monitoring his vitals go haywire sending the nurses running in to check. Remember the doctor’s comment about Charlie’s ability to create pain in one’s posterior? To counter Charlie’s actions, additional sedatives were provided to calm Charlie down. Every time they administer additional sedatives to Charlie I have a good laugh. Conventional methods do not seem to work well with Charlie. Even under sedation, Charlie manages to bite down on the air tubes triggering an array of alarms. As I sit and write this post, I have counted now 4 times in the last hour Charlie’s evening nurse has come running in to check the breathing alarm and Charlie’s status. The end result is the minor tracheotomy surgery is now scheduled for today (Thursday) late morning.
The tracheotomy will allow the doctors to remove the ventilator tubes from Charlie’s throat. This will allow him to be much more comfortable and will actually speed the recovery from pneumonia. More importantly, this will allow doctors to finally assess the full extent of Charlie’s abilities and to determine what rehabilitation services Charlie will need. The sooner we can understand the status of Charlie’s brain function, the sooner we can move on to what comes next.
We have a journey in front of us we must take. I wish I could tell you how far it is and how long it will take to get there, but I cannot. I can tell you Charlie is a tough little man, and he will reach his destination. In the last 12 days he has shown me the true meaning of courage and strength. He has already defied the odds and continues to do so everyday. No matter how difficult the day, Charlie somehow manages to make me and those around him laugh. The beauty of it is, not by trying but by simply being the Charlie that he is.
As always, my humblest gratitude to all for your continued support and prayers. With this update I leave you with a quote from Lord of the Rings, one of Charlie’s favorite stories:
“‘Go back? he thought. No good at all! Go sideways? Impossible! Go Forward? Only thing to do! On we go!”
And on we shall go.
All my best,
November 6, 2013
“It is always the simple that produces the marvelous.” – Amelia Barr
The number of “simple” things that Charlie is doing increases almost daily. Yesterday, the nurse was able to allow Charlie the freedom to move one of his arms however he liked. Charlie began to sooth himself by rubbing his head – which is something we have always done with him. This made us smile! Seeing Charlie choose what to do with his body and make it happen is a fantastic relief and fuels our hope and expectations. Charlie is using his facial expressions and body to be clear with the staff and with us about what he likes and does not like and how he is feeling in general. Imagine if you could not talk or write…what would you do to get your point across and be understood? This is what Charlie is working on now in addition to the physical healing he is experiencing. There are many “simple” things that Charlie needs to work on and we look forward to seeing his progress over the next few weeks.
Yesterday the decision was made, by ourselves and the Dr., to schedule surgery for a tracheotomy and a feeding tube. This provides many benefits to Charlie: tubes that are currently in his mouth and nose can be removed, his throat will heal so he can begin regaining his ability to swallow, more effective suction when needed, and most importantly this will allow Charlie to start MOVING! And we all know how Charlie loves to move!
Also yesterday, Charlie had spinal scans and an MRI to see how healthy his spine and neck are. We will get the results of the scans sometime today. If they are clear, as in no injury, the nurses will be able to remove Charlie’s neck brace and begin turning him in bed. The increases in Charlie’s ability to move, no matter how small, will assist him in the healing process.
We really appreciate how respectful and patient everyone has been about visiting Charlie. He still needs more rest than he will take on his own and having a calm, quiet atmosphere is necessary.
We are very grateful to live in a community that genuinely cares enough about each other to balance the need for information (which assists in community healing) with the importance of respecting our space and states of mind. It is daunting after a situation of this magnitude to return to places and settings where things are “normal”. However, our community has shown an incredible amount of care, flexibility and understanding so we feel welcomed and assisted rather than uncomfortable. Thank you.
November 5, 2013
Charlie my boy,
“It’s probably my job to tell you life isn’t fair, but I figure you already know that. So instead, I’ll tell you that hope is precious, and you’re right not to give up.”
Today has been a fairly quiet day in this temporary world of Charlie. He has chosen to slow his pace down and rest his body. For Mom and Dad, and all the good Doctors and Nurses, a slower day with Charlie was actually welcomed. As I stated in my last update, rapid forward progress is often followed by a natural rest period. Today Charlie actually gave me the opportunity to pull a chair next to his bed, put my head down on his pillow, and take a little nap. As long as he could reach out and pat my head from time to time he was content. Internally, Charlie continues to work hard healing. The removal of the ventilator continues to be delayed to provide more time for the pneumonia to clear and for his swallowing and gag reflexes to strengthen. Removing the ventilator too soon would put a lot of stress on Charlie which we would all like to avoid. He continues to work through the ‘brain storms’, but they are becoming less intense. This is all part of the ‘awakening’ process that occurs and is considered normal for this type of accident. From this point forward, Charlie has control and sets the pace. The recovery milestones that he achieves determines each next step.
On a side note, I would like to share a Charlie story. Yesterday, while pacing the halls of the hospital which I often do, one of Charlie’s several doctors stopped me in the hall to chat. Given my predisposition to providing nicknames to many people I know, I call this particular doctor the CEO. He is very business like and straight to the point. The doctor took time to explain to me how remarkable Charlie’s progress is. The doctor stated there is no text book, no learning, no teaching that explains how well Charlie has done in such a short period of time. Not a single doctor would have predicted the progress we have witnessed. He went on further to state, “Mr.. Thompson, you should be proud, your son is truly a pain in the butt.”(Considering the audience reading these posts, I took the liberty of editing certain words) Those of you who know Charlie personally, know Charlie’s high energy level, curiosity, zest for life and need for constant motion. I am sure you can certainly appreciate the good doctor’s sentiment. What is truly important in that message is the fact it is the kids who are rambunctious and who keep the doctors and nurses jumping; these are the kids that surpass all hurdles and expectations. These are the kids that achieve the highest levels of recovery.
We continue to thank all of you for your ever present prayers and well wishes. I know in my heart this is a significant part of Charlie’s recovery and source of strength and inspiration for the rest of the family. I have never been one to accept help, but I am accepting it now. I am humbled and thankful for the enourmous generosity of our friends, community and dedicated followers. Many worries we have beyond taking care of Charlie have been lifted and carried by your efforts. Charlie’s story and support has reached across the globe and I am truly touched in ways I cannot even begin to describe. I have come to look forward to taking time to keep you all updated on Charlie’s progress and to take every opportunity to thank each and everyone of you.
November 4, 2013
As I write this Charlie is resting very peacefully. Charlie has been having longer, restorative bouts of rest today. When he’s not resting Charlie is showing a slowly increasing ability to participate in his care by opening his mouth, trying to move his body a little, ect. These seemingly small improvements are exactly what we are looking for.
We had the privilege of a visit from the CAVAC responders who were on the scene of Charlie’s accident. In our brief visit the amount of support exchanged offered additional comfort and healing.
Over the next couple of days, we are looking for Charlie to demonstrate a consistent ability to swallow. This is the final step to showing that he can come off of the ventilator. Charlie has shown that he can maintain breathing on his own, and we are looking forward to being able to allow him do so.
The prayers and well wishes have been immensely helpful thus far. The focus now is on Charlie feeling at ease and his ability to swallow.
November 3, 2013 6:00 am
“You never know how strong you are until being strong is the only choice.”
When the body undergoes a traumatic experience getting well is a journey with no defined road map. Over the last several days Charlie has made rapid improvements and has dramatically surpassed expectations. Everyday can not be accompanied with such rapid forward progress. Yesterday Charlie showed us he needs to slow down the pace. The goal was to discontinue the use of the ventilator by the weekend. And although Charlie is currently needing very little breathing assistance, a minor bout of pneumonia has slowed his pace and post-poned that goal for a couple of extra days. It is critical that the lungs be healed enough to sustain un-assisted breathing without wearing Charlie out. This is part of the process–we take 5 steps forward, then 1 or 2 backward. Margret Thatcher once said, “you may have to fight the battle more than once to win it.” So we slow down, wait and support Charlie through the healing process.
On a positive note, Charlie continues to have increasing amounts of alert and clear consciousness. This is mixed with times of foggy consciousness as well. Today he showed us his ability to respond to some simple requests like squeezing a left or right hand, holding his eyes closed or holding them open. According to the doctor these are all very positive responses. After an accident were the brain is deprived of oxygen, and then heavily sedated for an extended period of time, it has to go through an awakening process–almost like a computer reboot. I know in many of our favorite medical TV dramas, this happens almost instantly. I’ll let you in on a secret: it happens quickly on TV because each episode has to fit into an hour time slot! In real life, it takes time and patience for the brain to recover. How much time is determined by the individual. For all that know Charlie, he has demonstrated explicitly that his desire is to accomplish everything in half the time anyone expects. The nurses and doctors are amazed that a small 10 year old boy can take enough sedative to last 2 hours and wake up after 10 minutes! Repeatedly! Charlie is strong, determined and pushing himself to recover. The rest of us are trying to keep up with him.
As always, I want to thank our friends, family and community for the continued support and well wishes. Reading the posts and messages have helped both Rosemary and I keep our spirits and energy up during many long nights of holding Charlie’s hand and providing him comfort. In addition, we appreciate the patience many have shown by holding off on visits. Charlie remains in critical condition in the ICU. There is always much activity. Our desire is to keep stimulation to a minimum until Charlie has awakened fully and no longer requires intensive care.
Novemeber 2, 2013 7:30 am
Thank you all for the kind and motivating words. Reading the blog helps us to feel connected, cared for and recharged which is a great gift for us.
Today we witnessed Charlie moving along in the natural healing pattern we all participate in. For every few steps we take forward, our body needs to take a rest or bring to our attention a symptom to clear that is limiting our potential for health. Charlie continues to hold the improvements from yesterday while showing us some clearing today. It was a tiring day as healing requires great energy–and our Charlie showed that he still has a greater than average amount! Charlie is currently resting peacefully preparing for his next steps.
We want to take a minute and express our gratitude to the staff at the Golisano Children’s Hospital. We have felt incredibly held, respected and motivated by the consistent and powerful care from everyone. Truly an amazing group and we invite you to add them, and their patients, to your prayers.
November 1, 2013 2:00 am
Today’s theme is “all fires start with a simple spark”. Yesterday was a wonderful blessing for the Thompson family. What would seem to be very simple things to most are reasons to celebrate! Starting late Wednesday afternoon, the doctors discontinued the medicine that was assiting Charlie’s heart to beat–his heart beats strong and true. Yesterday afternoon Charlie was placed on a ventilator to assist his breathing–as of this writing Charlie is breathing with a very low level of assitance and is already fighting that. His seditives were disontinued late Wednesday afternoon allowing him to begin the process of waking up. Thoughout this day he has had many episodes of ‘foggy’ consciousness. After 5 days of a motionless Charlie (if you can imagine that), we experianced him squeezing our hands while showing us his opened, trade mark, big brown eyes. Each episode of awakeness lasts only a few minutes. During those times Charlie has shown considerable body movement and has reacted to hearing our voices. Given where we started from Saturday night, this is nothing short of a miracle.
I caution everyone: it is very early in the waking up process–this will continue over the next few days. Not until then can the doctors assess the full impact of Charlie’s accident and what will be required to help him recover. We have a very long way to go, but for now, we are grateful we have made it this far and that Charlie is gearing up for whatever comes next.
Thanks to all for your continued support and prayers.
October 31, 2013 1:00 pm
Happy Halloween!!! We hope you all enjoy trick or treating this evening and thank you to those of you who are offering to bring candy for Charlie.
Please as you read the post know that we are happy and excited with you. Please post your comments on this blog for everyone to read as it will be increasing difficult for us to respond to phone calls, emails and texts. Also, we are restricting visiting even further in an effort to preserve the improvements that we are seeing.
As of now, Charlie is responding to the voices and activities around him. Charlie is able to move his body in small ways and has already figured out the best way to get our attention–by trying, and sometimes succeeding, to open up his eyes. Charlie will squeeze our hands, try to stretch and frown when he does not like something. This is amazing and we still have a ways to go so we appreciate everyone’s continued prayers and love as they have most definitely helped to allow Charlie to get this far. This is very exciting and we also need to remember that we do not have the brain and spinal scans and that this situation requires long term patience.
We will update further when we can. We are truly humbled and blessed to live in a time where this fantastic amount of support, love, grace and sharing can be given and maintained.
Thursday, October 31, 2013 8:00 am
We appreciate everyone’s love and prayers. Thank you for checking the updates here and respecting that our focus needs to be on Charlie and Raeny.
WOW! Yesterday was a big day for Charlie. He has successfully switched from the aggressive breathing system to the ventilator. This allows Charlie to have the sensation of a more normal breathing pattern and allows the Dr.s to begin moving him and reducing the medications further.
We were very humbled to see pictures of the vigil and know that there are so many sharing time, love and energy with Charlie. Also today the Tibetan Healing Monks came to the hospital and offered Charlie a healing service which was uplifting and soothing for everyone.
We want to encourage prayers and gratitude for the rescue workers that were on the scene. Their exceptional skill, timing and care have contributed greatly to Charlie’s success today. In addition, we have received calls from them checking on Charlie’s status and offering assistance. Please support your local rescue providers in whatever ways you are able to.
(Charlie’s friends are asking classmates to Trick or Treat for Charlie tonight and to take his spirit of joy and generosity with them as they celebrate today.)
Wednesday, October 30, 2013 9:00 pm
Thank you so much to all of you who came to the prayer vigil tonight! We are blown away by the amazing community we live in and the way that you all support each other. Charlie continues to do well in his slow progression and response to the adjustments the doctors are making in his ventilation. We will have another update for you in the morning. Thank you for following this update, for your prayers, kind words and love. We have had over 10,000 views on this page in just a few days, and that in itself is powerful and something positive for us to focus on.
Wednesday, October 30, 2013
The theme for today is ‘small gains are big steps’.
In the grand scheme of things Charlie’s progress is incredibly slow, but in light of the trauma his body experienced, slow progression in the positive direction is perfect. Charlie continues to impress the doctors with his strength.
The healing process focuses on one set of functions at a time. For Charlie the most important is improving his lung and heart functions. As of today we have seen improvement in both areas. Most of the medication being provided to help Charlie’s heart has been discontinued and his heart is maintaining on its own!! This is a big step. Secondly, the aggressive breathing apparatus (called an oscillator) being used to breath for Charlie has been set to the lowest setting…Charlie’s oxygen levels have remained strong…this means his lungs are showing signs of healing. The hope is to replace the oscillator with a normal ventilator within the next two days. This healing process has to happen from within and is slow. Small positive changes from day to day are important and we remain cautiously optimistic.
On behalf of Charlie and the entire family, we are very grateful for the tremendous community support that has now extended for beyond Cazenovia. Charlie is a special little man and has managed to touch the lives of so many people. This very difficult week has been made much more manageable with all of your help. Charlie remains in very critical condition and has a long way to go. Please continue sending your prayers and positive energy his way.
Tues 10/29 3:00am
The nursing staff here just watched the news piece on You Tube of Charlie and Raeny. This is such a gift that they can see and hear him as he truly is and hold this in their minds and hearts as they work with his healing body. The staff here is amazing beyond any hope we could have held, and we are very grateful for their care.
Charlie continues to be stable (48 hours- way to go Charlie!). His vitals are consistent and in the normal range even with the slow decrease in the life support/medications to his body. This will be a long process. Your prayers and love have given Charlie the ability to rest and focus on healing. When we talk to Charlie, we encourage him to allow the love, peace and strength you are offering to enter his body and help the medicines and machines work effortlessly and efficiently. The goal for today is another day like yesterday–stability, rest and healing with the intensity of breathing assistance continuing to be successfully reduced.
Raeny continues to do well thanks to all of the love and care she is receiving from family and friends.
We are humbled by the heartfelt response of everyone and how so many in the Cazenovia community and beyond (way beyond) are pulling together. As you pray today for Charlie, please also share a prayer and gratitude for all who are praying with you, for the hospital staff and for everyone connected in any way with this situation.
“Thousands of candles can be lighted from a single candle, and the life of the candle will not be shortened. Happiness (LOVE) never decreases by being shared.” Buddha
October 28, 2013
As many of you have heard, Saturday night Charlie was at a Halloween party and fell into an 18 foot deep well during a game of hide and seek. Rescuers were able to pull him out and he was rushed to the Golisano Children’s Hospital by ambulance. He remains unconscious, on life support and in critical but stable condition. External injuries are minimal, with no broken bones and only a few scratches and bruises. Doctors are working to increase his lung capacity and hoping that further tests can be done soon to determine brain and spinal potential.
Mom, Rosemary and Dad, Kevin are asking that we focus on praying for Charlie to feel safe and restful. Charile’s sister Raeny misses him and is being cared for by close friends while mom and dad are with Charlie at the hospital. They are all very grateful for your prayers and love.
We will be updating this page with any new information available. The family is requesting no visitors, phone calls, texts or emails at this time.
For more support please contact local Caz clergy,
Rev., Dr. Ethan Worthington at Ethan.Worthington@easternhills.org
or speak with one of the school counselors:
Mary Horan, Burton Street Elementary at firstname.lastname@example.org
Jennifer Glasgow, Middle School counselor 315-655-1315
An account with Lots A Helping Hands has been created for the family. If you’d like to help by donating food or any other gifts please leave a comment with your name and email address so you can be added to the invitation list. As comments are approved, email addresses will not be made public.