little by little

Hi everyone!  Sorry for the long delay between posts, many things have happened, mostly good, and its been hard to keep everyone up to speed.  Detailing Jo's health as I have in the past is proving to be something I do with extreme caution.  Following up on my previous post my insurance company also has access to the site, and I've learned they read it.  When I post about Jo's amazing progress they make their own assumptions about his care needs, and in this case too much "progress" seems to equal less support from my insurance.  I digress, too many people need to know just how amazing Jo is!

He returned from the hospital on February 7th, a full 2 weeks past what  my insurance approved!  He has been working his way back to his previous success with speech and physical abilities.  The initial surgery for the medicine pump was challenging and getting the dosage right has also proved to be tricky.  Adjustments can be made only at the hospital, obviously we started with a low dosage and have had to increase from there.  He is still on a relatively low dosage, but micrograms make a big difference in Jo's spasms so adjustments and trips to the hospital have become more common.  After a regular appointment yesterday we think we've got it dialed in and Jo is comfortable!  The past 20 days have been difficult for Mom and I to watch Jo take a few steps back from a physical perspective.  While the medication relieves spasms and tone issues we've found that his left side, typically his most mobile side, had a setback because of the medication.  Turning his head slowed, lifting his left arm ceased, and he has seemed more lethargic and alert the past few weeks.  All perfectly normal side effects of adjusting to the meds.  

Jo is now fast tracking his way back to his old self!

• He now turns his head often and quickly to greet visitors
• His hand movement is coming back slowly
• He is opening his mouth, moving his tongue, all great indications of brain connecting to oral motor skills
• He  shows that million dollar smile more and more
• He is definitely more engaged and alert during therapy sessions
• His spasms have decreased and he is clearly  more comfortable
• He spends hours in the chair each day with minimal discomfort

One of the most amazing developments since Jo has been home is getting to hear his voice!  Jo is clearly recognizing his ability to vocalize and gets very excited when he hears himself.  He makes sounds all day now, and words are not far off.   It would be impossible to describe how important this would be to our family.  To hear Jo speak again is the miracle we want everyone to pray for everyday!  WE KNOW IT IS GOING TO HAPPEN SOON!  Soon Jo will be able to say what he needs, how he's feeling, what works and what doesn't.  Knowing rather than guessing will open the floodgates on is recovery  and we are so excited that he is SOOOO CLOSE.  Everyone keep praying and thinking of Jo's voice, pray for our patience, he's got this!  Our hearts yearn to hear him say "I love you", we know it is coming soon!

Jojobinks you are an amazing fighter and you continue to serve as a testimony to God's love and healing powers.  Each day a little more of you comes back, and we are so proud of your bravery.  You inspire us to never give up, always stay positive, and love what we have.  You are healing and everyone can see it!  We love you to the moon and back sweet angel, Mom and dad are here, YOU'VE GOT THIS!