working hard

Hi everyone, Jo is working hard at Seattle Children's and completing his first week of in-patient therapy.  In just 7 days we have seen more progress in Jo's recovery than over several months!  He is busy everyday, a "typical day" consisting of:

• 2 physical therapy sessions
• 2 speech therapy sessions
• Intermittent visits from in-house school teacher, staff psychologist, recreational therapist, music therapy, time with volunteers and their dogs!.

Jo is in his chair on and off for 4 hours or more a day, playing games, practicing his reading, or playing music!  

For the first time in 8 months Jo was able to lay on his stomach and rest.  I can't remember the last time he looked so peaceful.

Jo has 3 upcoming procedures that will aide in his recovery.  None of them are considered "major" surgery but we still need your thoughts and prayers for successful procedures and speedy recovery.  2 changes will have a direct impact on his abilities to succeed in physical therapy.  Over time his tendons have shrunk a bit and need extending  in the each leg to get his ankle mobility back to at least 90 degrees.  In addition he experiences a great deal of discomfort on his right side when his muscles "tone" (basically since the injury his right arm and leg will spasm, stiffen, and extend without control) he takes a drug to lesson the activity but it only last so long, and its effectiveness is fading.  You can imagine how that would impede his progress in physical therapy.  Jo will receive an internal pump that distributes medicine directly for immediate and continuous relief for Jo.  It will be extremely helpful for both his recovery as well as give Jo some much needed pain relief.

The last procedure is very exciting.  Jo will have an endoscopy and swallow test to determine the need for his trach.  The Dr.s don't see any other evidence of a need and we are beyond hopeful that Jo can have his trach removed for good!  By this time next week, it is ENTIRELY POSSIBLE.  Please God Please!!!!

A great part of his recovery is the involvement of family.  We are an important art of Jo's motivation and keeping his mood up so he can continue to work hard.    With that we have some challenges being there as much as we'd like.

For the first time in almost 9 months Dad went a full day without seeing Jo.  At a time when you yearn for nothing more then being together with your family it was the only option we have.  As one son makes amazing progress in his recovery our autistic son Jimmy becomes more challenging everyday.  His inability to communicate his needs creates such unbearable frustration for him he lashes out.  He is big and incredibly strong, and there are times when he is a danger to himself and others.  It's easy to see why hospital visits must be well planned, timed perfectly, and often end in an unscheduled early departure.    When Jimmy acts out his behaviors are so poor only Dad can intervene and sadly it something I've gotten used to .   Jimmy does not want to get angry, he wants so badly to ask for what he needs.  His ability to remain as focused as he is could be considered a miracle.  Sensitivity to lights, sounds, a dog's bark, overlapping radio and tvs, creates a chaotic scene in his head, he flaps wildly  until he just loses it.   Lately is seems obvious we need to come up with a new plan, his meds need adjusting, a very difficult process to go through.  The final straw came as we visited Jo Saturday afternoon.  The drive is fairly long and Jimmy was pretty agitated by the time we arrived and after lunch he just lost it.  In the hospital Starbucks he ran across a table and jumped on Dad's back, knocking the table down and a picture of the wall.  Since we were already at Children's we immediately sought help and after about 7 hours of the admission process Jimmy was placed on the in-patient psychological behavioral unit.   His unit is about 1000 meters away, he is placed with other challenging autistic kids, and in 5-10 days we should have it sorted out.  And there you have it...

2 kids at Children's both recovering. One from an injured brain and the other from a malfunctioning one but by the grace of God, both home soon in a better place that when they left.  Thank you all for the love and support, one day at a time, things will get better.  We know God has a plan, we don't expect to know what it is, or how it will play it, but we have faith.  We were chosen for a reason, and although at times we wish we weren't, we are strong in our faith in love.  WE'VE GOT THIS.

Jojobinks we are with you and no now more than ever we see you are right there with us.  Working hard, pushing yourself, and winning over everyone with that magical smile.  Stay strong miracles are happening everyday.  We all can't wait for tomorrow, you are amazing!  We love you to the moon and back sweet angel.  You've got this!

Jimmy rest and relax, we can only imagine what it feels like to battle within your mind.  We know you love us and we love you dearly.  We will get this sorted out.  Stay strong and you will be home soon.  We love you!