9/30/09

Riley had his echo today.  He actually slept through it, again.  HOORAY!!  His veins didn’t look to bad.  Actually not to much different then they did after his Cath. in June.  He will still have a Cath. in the next wk or two.  Dr. Rome will remove whatever scar tissue there is, and then start to analyze the situation.  We need to check the condition of his shunt, because he should have had that removed at 4-6 months of age, and he is now almost 18 months.  Also what is the progression of the scar tissue.  Can we move on to stage two? 

On another note….Riley now weighs 20lbs and 1 oz.  HOORAY FOR RILEY!!!  Now we can look at forward facing car seats.  However….he still doesn’t want to eat orally.  Soooo….Dr. Szwast’s secretary, Vivian, who is wonderful, set up Riley’s intake today at the feeding clinic at CHOP.  They will now call me to set up an appt.  Its great!  It will be intense, though.  Monday through Friday 8:30-4:40, but if it will work to get him eating and off this gtube we are there!!

Soo…I will update again when I have more info…thank you everyone for your kindness and caring:-)

9/29/09

I wanted to take a moment to thank everyone who supported us on Saturday for the It’s My Heart Walk.  Everyone who came out and walked with Team Smile 4 Riley….Mary Kay, Dad, Terry, Chris, Christine, Dennis, Deanna, Skylar, Billy, Kelly, Sue and Greg!  We made a good team!  Thank you also to everyone who donated to our team, especially Riverside School that held a bake sale and Jean’s Day to raise money to donate to It’s My Heart!  Also a HUGE Thank You goes out to my sister, Chris, who coordinated our team, and went out and got us team shirts!  Chris is a great sister and Aunt:-)

 Granny and Riley 

One more quick note.  Riley goes Wednesday for an echo.  Depending on how it goes will determine when he will have his Cath.  It will definitely be in October, it’s just a matter of how soon.  I will post when I know what’s going on.

9/7/09

9/1/09

Just a quick update to let everyone know that Dr. Rome has agreed to wait till the beginning of October to do Riley’s next Cath.  HOORAY:)

Here are some pics from today…..yeah he looks a little crazy in one!