Pray for Cade 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.)