Pray for Cade
November 19, 2009
Does any one out there want to play the "blame game" with me?
I am so frustrated I could scream. Why is it when everything seems to be going right, someone drops the ball and we need to scurry around to catch back up?
Cade had a remarkable day yesterday, but by the end of the day, his swelling in his hip was way up, his urine output was nil, his blood labs looked funky and he was lethargic and fatigued. WHAT'S UP, we kept wondering. Turns out that someone from Pain Management wrote an order for a pain med that increases bleeding......OK, definately not a good idea for someone with a clotting factor disorder. They DC'd that medication pretty quickly, but now we have to play catch back up. Two blood transfusions were ordered and repeat labs every 6 hours to check his Hemaglobin and Hematacrit. Things are slowly turning back around, but it made me angry as hell......all because someone didn't read his chart carefully. No discharge today.....trying to go back to that "one day at a time" mentality....we'll be home as soon as we can safely get out of here.
That's it for now.
November 18, 2009
Less than 24 hours out of surgery, and although it might be a bit premature to make predictions......we think we hit a home run. Surgery lasted approx. 4 1/2 hours and everything went very smoothly. He was treated pre-operatively with a clotting factor to control bleeding and his blood loss was minimal. His right femur was successfully seated in his hip socket and the doctor went with the cushion pillow between the legs and a knee immobilizer, instead of the dreaded spica cast like last time. That's a big step toward keeping Cade comfortable these next 4-6 weeks, but it does make me a bit more leary of transfers. No weightbearing, either leg, for 4-6 weeks.....then back to rehabilitating that hip and regaining his range of motion and motility in the walker. We did it before, we'll have to just do it again.
Cade was alert and responsive in recovery last night and is even more so this morning, despite his pain medications. He is resting comfortably. I love the fact that he is vocalizing, answering clear yes and no's with either eye blinks or vocal sounds. He followed several commands from attending doctors to wiggle his toes and squeeze their hands. Way to go, CADE. And he looks absolutely great. Talk is he may even be discharged tomorrow. We'll see how the day and night goes......but that would really be the best.
More to come later. Thanks for the phone calls and posts on Cade's guestbook.
November 17, 2009
How very bittersweet......Cade has made some wonderful progress these past few weeks, but today we are off to Children's Hospital of Los Angeles for right hip surgery.
Big Hurrahs for Cade.....a couple of times this past week, he took his first unassisted steps in the walker. He followed every command perfectly......"stand up straight, shift your weight to the left foot, bend your right knee, come up off your heel, and swing your foot forward". It took a bit of doing, but he got it. He has an amazing PT aide, with a tremendous heart, the patience of a saint and an uncany sense of knowing Cade and what he needs. It was so difficult yesterday after our walk around the block, to fold up the walker and store it in the garage until Cade is back on his feet again, hopefully sometime in January.
More big Hurrahs for Cade......his speech is coming along slowly but surely. We have pushed so hard in this area, it is not surprising to many of us that he is finally finding what it takes to make sounds and try to form them into words. It is still inconsistent and many times not very clear......but we hear them coming. Two weeks ago, Joel and I woke up hearing Cade talking in his sleep. It was sort of like......"mumble, mumble, mumble......look", he said, then "mumble, mumble, mumble....find number seven....mumble, mumble, mumble......look". We were speechless to say the least. We believe that what he was saying has to do with a computer game that we play with him, to visually scan and find numbers. Then one night when we went out, Luis heard him talking in his sleep as well. As the week went on, we distinctively heard "Don't" when Luis tried to give him more juice to drink, we sometimes hear "Yah" when we ask him a question, we hear "No" a lot more now, we heard him say "Cold" one night when we went in his room to check on him.....and during speech session last week, after telling him how to do something, he said, "I know, I know, I know", just like a teenager. So we continue to push hard in the direction of getting an answer to our questions and really forcing him to use his voice. After the surgery, we can really focus on speech and using words to communicate.
So you can only imagine the agony of today......we leave in about an hour to drive to LA, surgery is at 1:00. Cade has an amazing team of doctors there to help him through the surgery, including our new Hematologist, Dr. Edward Gompert, who will be making sure everything possible is being done to avoid the bleeding complications Cade experienced last time. No telling how the day will go......not even sure if he will come home in a spica cast or hopefully a hip immobilizer.....hopefully he will be discharged by the weekend.
I will post an update as soon as possible. CHLA is not great with an internet connection, but I will try to slip away to Starbucks with my lap top and post an update.
Thanking you again for all your support, prayers and love for Cade. He continues to amaze us with his motivation, tenacity and courage.
November 4, 2009
If we have learned anything about brain injury during these past four years, it has been "two steps forward, one step backwards". With all the amazing progress Cade has made over these past few months, we are now face to face with the "one step backward".
Cade is scheduled for right hip surgery on November 17, less than two weeks away. You may remember that Cade had a significant hip reconstruction surgery in October 2008. At that time, we were planning on doing both hips, but due to complications in surgery, only the left hip was done. We have been monitoring the condition of his right hip socket and femur head over the past 6 months.....it has been migrating upwards and out of the socket slowly but surely. Our comparison x-ray on Monday said it all.....time is of the essense to pin and plate the hip socket to keep it in place. The longer we wait, the worse the surgery and recovery is anticpated to be. So, after an extensive consultation with Cade's orthopedic surgeon at Children's Hospital Los Angeles, we took the first available surgery appointment.....November 17th. We are not anticipating the grueling procedure that Cade had to endure last year, nor the bleeding episodes that followed. Our plan is for the surgeon to successfully put the femur head back in the hip socket, using minimal hardware. We are hoping that he will not need the dreaded spica cast again, and that he can come home in 2-3 days in a hip immobilizer. Cade will not be able to bear any weight on that leg for about 8 weeks, maybe 12, depending on the rate of bone healing. So, with all the progress he has made in the walker......that is on hold until 2010. Upsetting, disheartening, frustrating......you name it. He has never moved his legs more purposefully in the walker than these last few weeks.
But deep down inside, I believe that this is necessary for Cade to move forward with his walking. The surgery last October left Cade with a difference in leg length which will be corrected in this surgery. So that alone should help with moving the legs forward when he is ready to go back at it. In addition, you just can't keep walking with a dislocated hip. In the long run, I think this is the step backwards that is needed in order for Cade to take another two steps forward. It is just so darn hard to put the walker on hold, and put Cade back in another surgery.
But besides the hip problem, all other aspects of his recovery are slowly moving along. Cade continues to find ways to move his body more purposefully every week. He follows commands more and more. He is more vocal every day. He is really eating great and is handling different textures and quantity with less difficulty. (His arms and hands are not moving enough for him to feed himself, so we are still feeding him.) He is working with a "switch" attached to his wheelchair that helps him make choices and turn pages on the computer. It is like a big red button that he pushes with his head to activate different things on the computer. He is getting more purposeful and better at it every day. So, in spite of his upcoming surgery, he still will have lots to work on and I am sure his therapists B-Rod, JoAnn, Shaun and Allyson will not let him take too much of a break while recouping from his surgery. We will need to keep him busy and working.....a much needed distraction.
Not enough hours in the day to get done what we need to.....both for Cade and ourselves. Sorry for the short update, but I wanted everyone to know what is coming up for us. We are hanging in there......thank you for continuing to keep Cade and all of us in your thoughts and prayers. Each day is hard but we work to remember all that we are grateful for. Hope you all do the same.
We will keep everyone update on Cade's condition after the surgery. Until then.....
August 26, 2009
SHAME ON US for not posting updates sooner!! Thanks for your patience.
But honestly, Cade's is doing so remarkably well it is hard to stay ahead of him! He is taking consuming every ounce of our time and energy, and he is making huge gains on his ladder of recovery. We are so proud of his hard work and it is beginning to pay off. Let me tell you what has been happening.....
Physical Therapy
- Increased endurance and distance in walking in the hemi-walker. Most days he can be spotted in his walker going around the block on our street.
- He is progressively increasing his active leg movements in walking. One leg is responding better than the other, but big improvements overall.
- Cade is close to obtaining independent sitting with huge improvements in head and trunk control. He can sit for long periods of time on the edge of the mat table, knees bent at 90 degrees, hands holding on the edge of the mat table and keep himself upright. He is able to lean side to side and right himself back up by pushing off his elbow.
- Most importantly to me, he is following commands and responding appropriately to what we ask of him. To me this is BIG, because for so long, he didn't have the motor planning to carry out a task that we asked him to do. We have a long list of things he is able to do by request, such as turning his head left, turn his head right, opening his mouth, lifting his arm, shifting his weight from one leg to the other....you get the idea. Every day, we are seeing more and more appropriate movements that are a result of his motor planning.
Occupational Therapy
- Cade is really moving those arms and hands around now. BIG CHANGE from the days when he couldn't even move his arm out of the way of the wheelchair. He has started to lift his right arm up when we ask him to say hi and wave to someone. And he sometimes gives "knuckles" with his closed fist.
- We've done some pool therapy this summer....at first he just couldn't get the arms to move at all....but now, we are seeing more consistent but still small movements with his arms coming up and down in the water.
- We bought Cade a touch screen computer and have just begun the process of reteaching his arms to come up and touch the screen. We just started this week, and it's a big learning curve for Cade, but we do think that he will get it and eventually will have the world at this fingertips. We designed him a personal home page with age appropriate choices and set up his own Facebook where he can reconnect with friends and others. We want to keep the computer motivational for him.
- We are trying any and everything we can to get those hands moving in a purposeful fashion. We think the touch screen computer is a great start, but we want to see him holding a pencil, feeding himself with a spoon, pushing his hair out of his face, or reaching for an object. We are still miles away from this, but with the recent, more active movements in his arms, we are ever hopeful this will come. So we keep stretching, pulling and working those hands to remember how to become purposeful again.
Speech, Vision and Eating
- We're making smaller gains in the speech area, but things do continue to improve. His overall oral motor movements are increasing and we are working tirelessly on making the sounds for beginning speech, such as Mmmmmmm (lips together, turn on your voice), Ohhhhhhhh (round your mouth into an O shape, and turn on your voice), Yeah (pull back the corners of your mouth, tuck your tongue back and turn on your voice). As you can imagine, it is a lot of work. But we hear stuff that sounds like words and we just keep working on getting it right.
- Just as important, we keep working on all modes of communication. Cade wants to express his needs to us and we need to help him find the way to do that. So we keep working on his head turning left and right for no, nodding for yes, vocalizing NO or a sound that mimics that, and ahhh for yes. I know it sounds primative, but none of us have a difficult time understanding what he needs or wants, if we are dialed in. As you can understand, we just want it clearer so that everyone gets it.
- Cade's vision is improving and we have still yet to get a clear cut assessment on specifically what his deficits are. A big part of it, I think, it that his brain has a problem interpretting what it is seeing. We have worked hard on looking directly at someone or something and holding the gaze, as well as looking at short, three word sentences and then doing what it says to do.
- As for eating, well.....he still has that darn g-tube, but he is typically eating two meals a day by mouth and one by g-tube. He works hard at getting the food mashed up in his mouth and down the hatch without coughing and he is doing a great job at it. He is also drinking about 8 oz of juice or other liquid at one meal. Still lots of oral motor deficiencies, but again, it is getting better with every meal, every day.
So, as you can see, all in all, Cade is really doing great and we are excited about his progress. There is more to tell, but I need to sign off. Tomorrow I will add some new pictures so check back soon. I promise to update more frequently!
As always, thanks for all your prayers and support for Cade's recovery. We are truly blessed.
May 23, 2009
Here it is Memorial Day weekend, and we decided to drive to Bass Lake, near Yosemite, to stay with Cade's Uncle Jeff for the weekend. Yesterday, we took Jeff's wakeboarding boat out on the lake and Cade enjoyed the wind in his face and the ride on the boat. Today, we spent the day at Yosemite National Park, just a short drive from Bass Lake. We were awestruck by the beautiful nature of Yosemite Falls (roaring this year), Half Dome, El Capitan and all the other natural wonders of this beautiful God-given place. What a gift to experience God's wonders and spend time with family. We feel so blessed. And we can see the benefits in Cade....he is relaxed, alert and enjoying himself to the max. He is enjoying the beauty of the area, being with family he loves, eating baked beans and drinking soda, and riding in the wakeboarding boat. Our plan for tomorrow is to spend the day on the lake, relaxing in the cove, resting and floating in the tube.
It is wonderful to hear from Jeff and Kim how great Cade looks and how much he has changed since they saw him at Christmas. They report that he is much more alert, responsive, and assisting in transfers and everyday activities. They have been so wonderful to plan the whole weekend around Cade's needs and wants. Uncle Jeff and Cade LOVE riding in the golf cart around Bass Lake after dinnner, and after the Laker game. It will be hard to say goodbye. We have had a wonderful time. La familia.
We anxiously watch McKenzie's blog to see what she is doing on her Study Abroad trip in Europe. It's her first week and is currently in Paris, on her way to Munich. She will be home in the beginning of July.
A short post, as we are away from home. Things continue to go well, and as always, are grateful for Cade's presence in our lives and his determination and drive for recovery. He continues to be our inspiration. Thank you for your ongoing prayers and support.
April 18, 2009
Cade is doing just great. He continues to make gains in all areas of his recovery. We are so grateful for the incredible team of therapists and aides who are patiently working with Cade and helping him rebuild his life. His progress is slow, and his challenges are big, but he is doing it.....inch by inch, step by step.
This past month, Cade has made some big leaps. First of all, his eating has improved so much that we are skipping G-tube feedings. There is so much that needs to happen to eat safely.....from being able to open your mouth, use your tongue to move the food around, chew, separate and swallow safely. His #1 PT aide has really worked hard and consistently with Cade to master these skills, which has paid off enormeously. He is eating a more regular diet now, although we still mash and mix things up to a smoother consistency. There are many things he still can't handle like salad, rice, raw vegetables, etc, because he is still working on chewing, but I know he will get there. And he handles drinking liquids like a pro. Serial gulping juice, soda, smoothies. We try to get in three meals by mouth a day, although in the evening, he is so tired and it is harder for him. Our focus now with eating is to increase the quantity, master harder foods to manage and to concentrate on good nutrition.
Speech is coming along, too. Cade's oral motor skills have improved so much that we are hearing the beginnings of actual speech again. Cade has two speech therapists working with him, each offering different approaches to helping Cade regain communication skills. All of us are excited and encouraged by this recent improvement. At this point, he is working on No, More, Yah (for yes) and the sounds of mmmm (lips together), Ahhhhh (mouth open wide), Aaaaaaa (corner of the lips pulled back) and others. Sounds easy, but for Cade it is really challenging. He not only needs to form the sound with his mouth, tongue and lips, but then he needs to "turn on his voice" and put it all together. With JoAnn, his school district speech therapist, he said "No" 17 times on command in session the other day. It seems like they worked on getting his tongue to the roof of his mouth FOREVER (she used a thin wooden stick with either peanut butter, jelly or powder candy and put it on the roof of his mouth for him to find), but he's got that down now and is able to push out "No" when asked. With Shaun, his private speech therapist, she is getting different sounds on command in every session, and has even gotten "highs" and "lows" sounds, working on inflections by changing the tone or pitch of the sound. Impressive, for sure. We do not know how far Cade's speech will come, but just being able to express himself through simple words such as Yes, No, More, Stop, Done, would be a huge step for him in communicating. Even though he is making these gains in his speech therapy sessions, I was concerned that we still hear so little outside of his sessions, during the daily activities. Our speech therapist explained that this is called "generalizations", meaning at this point in Cade's recovery, he can perform these things in session, but isn't able to carry it over to his daily activities. She assured me that the more he works on his speech in therapy sessions, it will become more automatic and we'll hear more of it from him during the day. So the work goes on.......
All of his regular therapists agree......his cognition level, understanding and processing is high......but his skills to implement tasks, either physical or speech, is severely impacted by his apraxia. Apraxia is the difficulty in planning and carrying out purposeful movements. It's like, "I know what you are asking me to do, but I just can't seem to find the place in my brain that let's me do it." Apraxia is Cade's biggest challenge. He has physical apraxia, verbal apraxia, ocular (eye movement) apraxia.....you name it. Although Cade will forever be challenged by his apraxia, through constant therapy, he can break through the apraxia as he is showing us now. It takes lots and lots of hard work and rewiring of the brain to get around the apraxia roadblocks. That's why repetitive movements, also called patterning (such as repetitively bringing the hand to the mouth for feeding), can bring about more purposeful movements by retraining the brain to do what it already knows how to do.
So, lots of good things are happening in therapy land. Walking and physical therapy are doing good too. Every day, Cade is assisting more in the stand, pivot transfers. Every day, his sitting is getting better. Every day, his knees bend more. He is turning his head left and right more purposefully. He even responds to things like, "Cade, turn your head to the right." "Cade, lower your right leg." Cade, open your mouth bigger." These things may seem so primitive, but it's big stuff for us. We keep reminding ourselves that Cade never moved anything, not even his pinky finger, or responded to any commands for over 20 months after his accident. So he is obviously re-wiring his brain and trying hard to reorganize.
Medically, we have gotten some long needed answers this past month. Cade spent 4 days with over 40 electrodes attached to his head to record any possible seizure activity. The report came back showing none. That is good news. He also spent the time at Casa Colina's Sleep Center, also attached to dozens of wires and equipment, to determine if he has issues at night. The report was very disappointing, but not surprising, as we are aware he sleeps very little at night and is extremely fatigued during the day. That night he slept a total of 146 minutes, no periods of REM (which is your most restorative sleep pattern) and had several episodes of apnea where he stopped breathing. His diagnosis was "obstructive sleep apnea", meaning there is something obstructing his breathing pattern which could be allergies, scar tissue, or adnoids. I have found out that this is better than being diagnosised with "neurogenic sleep apnea" which is where your brain forgets to tell you to breath, as there is no real cure for that. So for now, until we get more answers on the "obstructive" part, he needs to wear a face mask that blows cool air in at night. He is miserable with it and just can't get used to it. He has stayed awake all night fussing with that thing, and then just wants to sleep during the day. FRUSTRATING!!! And I feel like I am back not getting any sleep at night because I worry about it. Anxious to get some more answers to this problem.
That's about it, I think. We continue to ride the roller coaster of brain injury recovery, trying our hardest to tackle any and all issues that arise. It is an exhausting journey for all of us. We are trying to figure out a way to get Cade some friends his age. Poor guy, he has just been abandoned by all of his old friends, with the exception of one or two. And he needs that socialization and acceptance. It would really help push him ahead in his recovery. It does make me angry.....I try to understand it.....how hard it must be......but then I remember and see every day, how hard it is for Cade. Sore subject for us.
Check back soon for more updates. Thanks for sticking with us.
March 10, 2009
As you can see, I have spent some time updating the look of the website. We are still working on it so bear with us. You may notice that some of the entries on this page accidently got deleted and we are trying to restore them. Check out the Photo Album....we have downloaded new pictures of Cade using the walker. He has made huge strides in his walker....he actually can push the walker out in front of him, and we are now seeing both feet try to move. We were only getting movement from the left, but now we see the right foot trying hard to swing out. He is following commands well.....we have settled into using this language...."Push the walker, move your left foot, move your right. Push the walker....." And on we go. He is really getting the hang of it. We go up and down our long hallway about 4 times or more, every day he is doing more of it on his own with less assistance from his PT aide. He is bending his knees, holding up his head (except when he wants to look down at his feet) and clearly communicating with us that he wants to keep on going.
Speaking of communicating, it has been a big week with Cade's vocalizations. Last week in speech therapy, he shook his head no and repeated No, No, No in response to Ms. JoAnn's questions, at least 6 - 8 times. And we are starting to hear, Yeah, Yeah we believe. He is more vocal that ever and we are trying to teach him through oral motor activities using his tongue and mouth to form more purposeful words. Another great speech session today with Ms. JoAnn at her Eastbluff School.....they worked the entire session on putting his voice with the oral movement and he did the best he has ever done. Speaking is such a complex function where so many different things must happen to just make one word. But he is really making gains this area and we are so excited!!
We are moving in the right direction and pushing ahead. I know that each of Cade's team members are humbled by how much work Cade puts in to each activity. We are so incredibly grateful to have talented team players who bring the best of themselves each and every day to help Cade with the daunting task of recovering from a brain injury.
We are looking forward to giving you our next update. Keep praying for Cade. We are making it!!!!
February 26, 2009
WE ARE SO THRILLED WITH THE PROGRESS CADE HAS MADE THIS PAST FEW WEEKS!!
Ever since the shunt adjustment, Cade has been consistently climbing the ladder. I do believe, however, it's a combination of hitting therapy hard every day, feeling better and being neurologically stable. We fall into bed exhausted every night, but wake up with such excitement to see what Cade can bring to the day.
First off, check back in a couple of days, as my friend is going to help me download some new photos. Cade has only been using his new walker for 3 days now, but he is really getting the hang of it. The first day, he could barely hold himself up....his head fell back, his legs wanted to buckle, his arms wouldn't stay in the arm holders. But today, he stood straight up and could hold himself steady with no assistance.
(We are sorry, but this end of this entry somehow got cut off during our recent changes to Cade's website. Bravehost is working on trying to recover these last entries. Sorry.)