a little better every day

Jo is doing great at home.  he has really stabilized in all of his vitals.  He still gets agitated at times and seems frustrated, but who wouldn't be.   He is getting more visitors now that he is home and we know he enjoys the company.  He is very engaged with whoever is talking to him, even if for short periods.  It is clear when Jo is awake and when he is resting, that type of "normalcy" brings us great peace.

Jo has a hectic schedule over the next 3 weeks, upwards of 5 appointments to check on this and that.  He met with his new pediatrician and their office did not an amazing job accommodating us with our new normal.  They were efficient, kind, and everything went off without a hitch.  Another difficult visit emotionally as we recall the last time we were there Jo was getting his physical for the upcoming football season...

Jo's days are fairly simple, a small medication routine, a detailed feeding schedule, some respiratory procedures, and last but not least consistent routine re-positioning in the bed. Jo is almost in his 3rd month on his bed, and with the exception of a few trips in his wheelchair he has spent many many hours resting on his back.   It is absolutely critical that we maintain a rigorous routine of rotating Jo side to side every 2 hours.  Every 2 hours all day everyday, morning noon or night.  It is one of the most difficult parts of his care actually, it can take 2 people to be efficient and you can imagine how time flies between each move.  Mom and dad have got this, along with help 2 days a week from Jo's amazing home care nurse Sergei, he is amazing!

We are working with a few different agencies to fill other days with nursing care.  While we will still be a huge part of Jo 's daily care it gives us the chance to get some of the other parental things done around the house.   If anyone out there has a great nurse in mind please let us know!

I'm sorry I haven't written in awhile, I'll do my best to keep something posted daily.  As things settle in it should be easier to keep everyone up to date.  Jo looks great and it is such a blessing to be at his bedside whenever we want to.  For dad,  in times when my hope or faith is tested all I need to do is visit Jo, pray and I feel better.  I could never imitate the connection Mom and Jo have, is beyond touching and brings me to tears.  We hold steadfast that Jo will make his way back to us one smile at a time.  He's got this, and every day he gets a little better.

Jojobinks we are so happy our family is back together.  You are an amazing fighter and we are so proud of you.  Your story has touched so many and it is far from over.  You have so many more people to amaze!  Mom and dad are still learning the best way to make you comfortable, please be patient with us and tell God to continue to give us strength.  Rest with the Lord and let his healing hands restore you whole, we are so excited about watching you come back to us.  We love you to the moon and back sweet angel, you've got this!

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