Introducing J.J.

J.J. is our Mr. personality! He is always finding ways to make you laugh or steel your heart!  He's currently 2 1/2.  JJ was born early because of mommy's health issues.  We were very concerned he was going to have to come much earlier than he should but we made it just a few days before 37 weeks because of lots of prayers by friends and family. 

J.J. seemed very normal from birth but he had some very immature breathing.  They watched him very close.  His first feeding however, is where his journey began. They were hoping all of this was just from some prematurity but as time when, he worsened instead of improved, showing them this was bigger than just immaturity.  J.J. immediately started choking on his feeds and they were pouring out his nose with every feeding.  Doc began thickening his feeds with cereal right away to see if this would help.

 It wasn't long after, we continued to increase his thickening until our family doc finally initiated his Mito journey with the team of docs our other two see.  He was eventually admitted, this being the first admission of many to come, because of his feet and hands turning purple during feedings as well as finding his lactate levels to be elevated. 

During this admission, they adjusted his feeds until they finally found Honey thick liquids were his safest.  They then got him connected with GI.  It wasn't long before they realized that J.J. was using so much energy trying to take in his feedings that he wasn't metabolizing his feeds at all. He completely stopped growing and weight loss started to kick in.  The resolve to this was almost more than we can handle!  GI sat us down and told us it wouldn't be safe to feed J.J. through a G-tube because if he would vomit the thin liquids that went through the tube feeding, they would go in his lungs compromising more than it would be worth!  They said it was time to try him on J-tube feedings. 

 An NJ-tube was soon placed. This is a long tube they take through the nostril, down the throat, bypassing the stomach and then feeds are pushed by a pump slowly into the small intestine.  He was on these feeds around the clock.  The feeds have to go very slowly so in order to get his calories and his fluid allotment in, it was a constant feed.  A few month passed and when they saw the progress, they surgically placed a GJ-tube into his abdomen. 

 J.J. is now able to take most things by mouth.  We tried very hard to go with out his GJ-tube but he has continued to struggle with growth and energy.  Just a few months ago, they had to place his G-tube back in. Thankfully, his reflux and his vomiting have improved enough that he's safe to have just the G-tube and he only needs nectar thick drinks now. 

Jeremiah also has

a lot of pulmonary problems.  He has some sleep disorders, but his main problem is through the day.  J.J has very low muscle tone especially in his chest and abdomen.  This low tone makes it so that J.J. has a difficult time moving air in his lungs. This lack of air moving has resulted in J.J. having numerous pneumonias.   

To keep J.J.s lungs clear, he has to have breathing treatments twice a day on healthy days where he gets Albuterol and then he uses what's called an airway clearance vest.  This vest is made to shake/rattle the walls of the lungs to help move the "yuck" that your lungs have.  Deep breathing would keep a healthy persons lungs clear, but with his inability to do that, this vest does it for him.  When he is sick he has to do this every four hours to keep his lungs free of pneumonias. 

 J.J. currently needs Physical

therapy to help with his tone and development. He gets Occupational therapy to help with the sensory issues that he has. Then he also gets Speech therapy to help with the swallowing and with his speech delay.  He absolutely loves and adores all of his therapists!  

 

J.J. also uses a tilt wheel chair to help him with his energy and the days he's floppy and needs added support.  J.J. is on over drive most of the time you see him!  He is nothing but "go" as a typical two year old would be!  However, this "go", is what makes him crash and become very fatigued and floppy.  He has several days a week that he's just too tired and he sleeps or just lays down where ever he is.  These days affect so much for him! 

 

So, how would an accessible van benefit J.J.?  It would give him the ability to have that much needed added support his tilt chair is made to provide for him especially on days he's more tired or floppy.  The thing about these chairs, some might ask why not a stroller or a wagon.  Think about when you are exhausted... you just want to lay down or put your feet up.  For kids with Mito, the very act of sitting up takes energy.  Holding your head up takes energy. These chairs are made to give their bodies total support so that at the end of the day, they aren't left feeling completely drained by having to sit up, or stand or even walk longer than they were able.  When they use these chairs while we are out and about, it gives them the ability to come home and play like kids. Otherwise, they come home and they crash on the floor, the couch or the recliner and they just lay there. So, as hard as it is, we have adapted life to make these chairs work! They each deserve a chance to have every moment they can to feel "normal." If using a chair helps that... then a chair it is!  So thank you for being a part of helping us get something more accessible to help save their energy when we are aren't home.