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