Home! Week 10

After 4 weeks in the piicu and 10 weeks in rehab, today was Caden's first full day at home! He woke up this morning smiling and said: "My bed! My window!" It was a busy day full of brothers, play and errands.

The therapists gave Caden homework to do each day until his outpatient therapy begins, so we made sure he fit that in too. Plus, he tested out his new 'going home' walker and wheelchair during a few errands. Maybe tomorrow he will work on some resolutions for 2011 ;)

We hope that you have a very happy and healthy New Year!

Snow day! Week 9

The winter wonderland came a day late, but boy was it a big one! Caden and I enjoyed watching the wind whirl the snow around outside the windows all day and into the night. The therapists brought a little of the snow in for Caden to play with, and fortunately big brother Conlan was on hand for an impromptu snowball fight :)

Caden had a busy week: there was lots of pool time on the schedule, and one of the therapists who has not worked with him for awhile noted how much stronger he has gotten; he did some walking with the casts on between parallel bars; then on came the shoes for some practice in a walker. The walker was a little scary at first, but by the end of the week Caden was much more confident. Now homework is two laps in the walker around the floor!

As previously noted, Santa was very good to all of the children here, but it appears Santa also brought Caden his voice. The rare single word was exchanged for multiple words on Christmas Eve and he is now coming out with big sentences. It is difficult to understand everything - unless, as one of his brothers said, you speak Caden - but we know practice makes perfect and it is fun to hear what he has to say.

Gifts and Visitors, Week 8

This holiday season we are counting our blessings!  Not only for Caden, but for our family, friends and supporters who have been so helpful on this journey.  So many people have done so many things, big and little, to help us along the way. We thank you.

Week 8 brought several special visitors.  Santa visited the halls, not once, but twice, and was very merry for all the children.  Caden also enjoyed a great ping pong game with his neighbor from home (ok, the ball was dented and Caden needs to brush up on his ping pong skills, but he had a wonderful time nonetheless).  And then there was a special visit by Officers Brian and Jason.  These two officers were among the first responders in September, and went above and beyond the call of duty.  Caden was thrilled to have them visit him in the gym:  Officer Brian plays a mean game of Uno and Officer Jason is not too bad of a soccer player ;)  As the officers said, Caden has come a long way since that September day.

We are starting to hear a little more of Caden's voice.  He mouths words, whispers several, and in therapy will occasionally vocalize some vowels and sounds.  We had fun this weekend singing Christmas carols and having him fill in the words - a couple of times we heard his voice come through.  In therapy he has been successful trying to say something at the end of a forced cough; and we found this weekend during some fun time with his brothers that the same thing works at the end of a giggle. So, "giggle, giggle, Mom" was Caden's gift to me.  Music to my ears.

New things, Week 7

One thing that we have learned is that the therapists are very creative, and even doing hard work can be made fun. In speech, Caden has been using whistles to improve his exhale. When he started blowing through the whistles a few weeks ago, he could barely make any noise. Now he easily blows out nice, strong musical notes. I told him they were going to graduate him to the tuba! Caden's physical therapist broke up the week by introducing him to the Wii Active. Caden got to play goal keeper and easily saved the rapid fire incoming shots with his arms, torso, head, and occasionally his nose. Good thing it is 'virtual' reality! OT saw Caden army crawling through tunnels and pulling himself on a net swing. And RT put Caden on his tummy on a scooter so he could pull himself across the floor with his arms.

Caden's wheel chair was traded in for a lower one that he can propel with his feet and hands. We did one lap around the floor last night - took us awhile but he made it all by himself :) He was also fitted with casts this morning to try and improve his gait. Caden was naturally disturbed by the idea, but was a good sport and chose one red one and one green one in the spirit of the season. His mood was much improved when they decided to make the casts the removable variety (phew!). He is also being fitted for a vest which he says is slightly more comfortable than the weighted one he and Kieran tried out before. Hopefully these new accessories will help speed up the pace to the big prize: walking!

Getting Stronger, Week 6

For those of you intending to make that New Year's resolution to head to the gym, make sure you persevere through week 6.  I told Caden that with all the intensive workouts he has had, I think he is now 2/3 of the way to those 6-pack abs! He has also gotten quite adept at arm wrestling with both righty and lefty - and to think we could only thumb wrestle a few weeks ago.  I'm sure your gym regimen will be quite different than Caden's, but here is a little of what he has been up to this week.

He proved such a soldier in the "stander" that he has graduated to a new one.  This one requires him to do more work, but is also much cooler looking and that has to count for something! Unfortunately, Caden's chest muscles have become very tight, requiring him to spend some time on a "prone cart".  Although I think this flat bed cart looks very inviting for a nap, Caden assures me it must have been a medieval torture device.  This week also saw Caden fitted in a jumper harness which holds him upright so that he can test out walking on his own two feet.  He got to take some steps on the gym floor and then go for a few minutes on a treadmill while the therapists helped him relearn the bio mechanics of walking.  Just when things were looking tough and frustrating in the gym, big brother Kieran came to visit.  Kieran was a great sport and did everything Caden had to do, including donning a weighted vest and doing sit ups and push ups. Caden's tip for your New Year's resolution:  get an exercise buddy!

Fun things this week included a Recreation sponsored "out trip" to a nearby Target with a couple of other patients; playing Connect 4 with Rory and deciding to change colors half-way through; having the Seton Hall men's basketball team chant his name as he lined up to take a shot; and indulging in chicken nuggets and french fries. Yum!  Boy is that Pediasure a distant memory now :)

Irony, Week 5

This week we had our "family" meeting with the staff overseeing Caden's rehabilitation. They are pleased with his progress, as are we, but expressed some concern at the slow pace of recovery. The main issues are the recovery of Caden's speech and fine motor skills, and getting him ambulatory. Leaving the meeting, we were a little numb trying to digest the news that the release date from the hospital will be later than originally planned, and the recovery of his fine motor skills are many months away.

 

His speech, yet to return, does seem more likely any day now, as he frequently mouths words to us. The phrase "the words are on the tip of my tongue" must be reverberating in Caden's mind every day. Those that know Caden can attest it is ironic that the one thing Caden did exceptionally well - talking - is one of the slowest abilities to return. On the way down the elevator back to Caden, Alex said the blog had a very appropriate title. The doctors in the ICU and at Specialized have reinforced that the one person in control of Caden's rehab and release is Caden.... As in he will do it his way - hence, Caden's Way Home.

 

 

Happy Thanksgiving!

We hope that you are enjoying a wonderful Thanksgiving. We have so much to be thankful for today and would like to extend heartfelt warm wishes to you all. The support of our family and friends has been amazing. Thank you!

Caden enjoyed this special Thanksgiving by making his first trip home. It was just for a few hours, but he was able to visit with some friends, pet his kitten, get some dog kisses, play in his room and hang out with his brothers. Wonderful!

Happy Thanksgiving

Working Hard Week 4

Caden's schedule keeps growing and Caden keeps going - often from 9 to 3:30.  Core strengthening and stability continue to be big foci for therapy, and Caden has to do much more of the work himself.  The therapists have discovered that Caden will work hard to earn Silly Bands, so he has a growing collection on his arm. 
Highlights of Week 4 include "lefty" participating in an Uno game; hanging from the rim after a "dunk" shot in the pool; a double thumbs up for the Physical Therapist; and feeding himself Froot Loops.      
Newly added this week:  the "stander".  This device allows Caden to stand up and put some body weight on his bones and muscles.  He has worked his way up to 45 minutes and is shooting for an hour.  The stander makes him taller than mom and he says the view is pretty good up there ;)
Caden's personality is starting to shine again.  His speech/swallow therapist has been helping him to communicate by creating word charts taped to his tray.  Each week she adds more words for him to point to.  She is also trying to help him progress beyond the baby purees to more solid foods.  During lunch, she asked him how he was enjoying his meal of shredded pot roast.  Caden pointed to the words "yuck" and "stop!" on his tray and grinned from ear to ear.

Out on the town

Have pass, will travel!
Since ice cream has been incorporated into the diet this week, I thought Caden needed to celebrate. Fortunately his supervising therapist and doctor were on board, and provided us with a pass to hit the streets of New Brunswick. Caden and I ventured out on Saturday afternoon, took advantage of the beautiful weather, and found our way to Thomas Sweets. Caden gave the vanilla ice cream a thumbs up, and enjoyed watching the world go by.
We repeated our adventure on Sunday, however this time Dad and Conlan and Rory came along to help eat the ice cream (ice cream does attract company), and Caden had the added entertainment of a motorcycle parade. The parade probably would have earned a thumbs up, but Caden was working too hard at covering his ears from the noise! (Even 'lefty' was employed at ear covering - whatever it takes! ;) )

Progress Week 3

This has proved to be a big week for Caden.  He did so well eating over the weekend that on Tuesday the doctor pulled out the feeding tube.  What a difference that makes!  Yogurt and pureed foods certainly beat Pediasure...and ice cream is allowed now.  Things are looking up :)  Caden's biggest challenge is getting all the fluids he needs.  He hasn't "graduated" to thin liquids (water, juice) yet, so he is still sipping chocolate milk through a straw.  It's a slow process!

As he is able to do more and has more energy, they have beefed up his schedule.  Additions have included Pool therapy (the water is a warm 90 degrees) and an independent exercise program (Caden has to pedal a bike for 30 minutes, 3 times a week).  Not to mention that after a full day of therapy, he attends an hour of individual school instruction. 

Caden continues to work on standing and walking, regularly taking assisted steps during transfers to and from his wheelchair.  He is trying to do more of that work, but after all that pedaling he sometimes has spaghetti legs!  He is working hard on his core and his head control continues to improve.  Another goal this week has been to get him to use his left arm.  The therapists have definitely gotten it more active through ring and ball games - and he really enjoys the therapeutic brushing and massage of his left arm. 

Rehab Week 2

Caden made more progress this past week on several fronts. With a lot of assistance from the therapists, Caden stood on his own two feet and also took some tiny yet big steps. His swallowing improved as well as he began the week taking in 2 or 3 small spoons of yogurt - and by the end of the week, he finished an entire yogurt. His Pediasure consumption also changed a bit with a new ability to drink with a straw in his mouth rather than a feeding tube. His feeding tube is still in but he is hoping that it will come out once he shows he can eat and drink all on his own.

Therapists continue to work on strengthing his midsection and neck. He can do things more consistently but we notice that it still is exhausting work for him.

He also had some giggles and laughter this weekend. It is a bit disturbing for mom, but 8 yr old potty related humor seems to do the best trick to get a laugh :)

Caden's Journey

On the morning of September 23rd, Caden was playing at recess with his classmates when he suffered a spontaneous rupture of an AVM in his brain.  From the information that we have been able to gather, he may have stumbled around a little, then just fell down.  Most fortunately, the little boys that he was playing with knew what to do and immediately ran for help.  We are so grateful to those boys!  Timing turned out to mean everything that day. 
He was airlifted to RWJ and thus began his journey.  We've been told Caden will not remember anything from that time - and for that we are thankful - but he probably would have loved that helicopter ride under different circumstances ;)  That first day he underwent 3 separate operations, each one of them at critical junctures as the extent of his injury revealed itself.  Friday brought another surgery, and then the onset of a drug induced coma. 
Caden was in the coma for 2 weeks, and had his share of ups and downs along the way.  Coming off of those major meds was another roller coaster ride, but the greatest moment was when Caden opened his eyes.  (The doctors had been very kind to me and let me see his eyes when they checked him each morning, but nothing beats Caden opening them on his own!)  He then had to be weaned off of all of the tubes, wires and apparati that had been doing all of life's work for him the last few weeks.  Finally, one month after the injury, he entered the rehab hospital to start the hard work of recovery.
Caden was truly limited in what he could do that first day.  He could move his arms and legs in rather grand gestures, but with no purpose.  He could squeeze his right hand.  He and I had learned to communicate by his blinking for "yes".  He could not lift his head, swallow or speak.  He had only just started to spend a little amount of time in a seated position before he left PICU.  He could not walk nor move his body from a set position.
What a difference two weeks of therapy makes!  With great effort, Caden has improved his head control.  He can sit in his wheel chair for extended periods.  He sits assisted with his therapist to play games of Uno and Connect 4 against his mom (and usually wins!).  Caden has improved the dexterity in his right hand so that he can pinch the game pieces and cards and place them in the correct places.  He enjoys rolling over on the mats, and is working really hard at sit-ups so he can have his own "6-pack".  He waves hello and good-bye.  Gives thumbs up for "yes" and thumbs down for "no".  And just as it had been a delight to see his eyes open, it has been a wonderful joy to hear him laugh again. --Alex