Monday, August 29, 2011

Promised update.....

     We went to see a new GI doctor because J's pediatrician has been managing his GI stuff since we moved down here.  Which is fine but J developed some Granulation Tissue (GT) by his button.  We tried to treat it with topical steroids but it really didn't do anything except make his whole button area very angry.  We we to see Dr. Meyers in Atlanta.  He was very nice and very patient with J.  He was very friendly and asked a lot of questions so he could have J's complete picture.  He said the GT was not that bad and to try the steroids again but if his button got angry to send him pictures...too cool, no trip to doc if he has issues with it !!  Loved this.  He was fine with J's diet.  I asked about his constipation issues and he said the dose of Miralax was very small so we could go up to keep things "moving".  He is a bit constipated now, had to have 2 enemas but is acting fine so I am at a loss.....  He is down to one can of formula per day.  The rest is food and juice calories.  Today we are doing very thin stuff till his bottom gets rid of some poo. 

     The next day we went to the CRS Seating clinic.  Since J will always have endurance issues we are looking to get him a wheelchair.  He is quickly approaching 40 pounds and getting to big to carry.  Also we want him to have more freedom and independence.  So we had to decide if we wanted him in a power chair or a manual chair.  Both have their issues.  With only one arm that functions normally he would have to learn to use that arm to manipulate the chair.  And then there is power....He is 3 1/2 half, has no you see where I am going with this.  While I think he could learn to use it we also feared it would make him "lazy" and more dependent on the chair.  So we decided to go manual.  He will use the wheel on the left to steer and maneuver it.  They explained how it works but I am still  This is a pic of a chair like he is getting....
     It is very low to the ground so he will learn how to get in and out of it.  I think that will happen fast because he has become a pro getting up and down off the couch.  It will take about 45 days to get everything submitted.....We can't wait to get it for him..... 

     We go to see the cardiologist on Sept 7th.  Nerves are already starting...Please.pray that his heart is unchanged.... 

Monday, August 22, 2011

A new feeding plan....and a big anniversary.....

Hello everyone....

     Hope this finds everyone well.  Tomorrow is a very big day....August 23, 2009 was the first day Joseph came home from the hospital.  This was after 180 days, 3 major operations and many prayers answered we were home !!!  It has been a wild crazy ride but I wouldn't trade a minute of it. 
Going home !!!!

Ok so an update....

     We went to the CRS  Ortho Clinic to get J's braces checked and to let them see how he has done after the botox injection last May.  He got his weight and height checked.....He was 35 pounds and 37 1/2 inches....he gained 2 pounds and 1 1/2 inches in about 6 months !!!  I know, I know INSAINE !! 

     So on to the feeding...ugh
So we tried to do a wean....massive FAIL !!  So we start a different road...
Thru an answered prayer we were able to get a Blendtec blender for J.  This blender is AmaZing!  So we are now giving J whole, blended food via his tube.  It is called a blenderized food diet.  This is how many people with feeding tubes were fed before formula companies got involved.  We started his new diet on Saturday.  So far so good, he is tolerating  more during the day and is only getting about half the amount of fluid overnight at this point.  Here is a list of the foods he has been getting:
  • Baby carrots (raw)
  • Spinach
  • Peaches
  • Mango
  • Blueberries
  • Raw Oatmeal
  • Quinoa
  • Soy yogurt
  • EVOO
  • Blackstrap Molasssas
  • Alvacado
  • Peas
It makes me feel like I am actually "feeding" him now.... ♥

     We have a appointment with a new GI doc in Atlanta on Wednesday.....I will update after !!