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Sunday, September 9, 2012

18 months old!

Joey turned 18 months old on Saturday!  

Here he is when he was just a few days old; he was 6 pounds 8 oz and 19 inches at birth!




Here he is a year ago when he was 6 months old; he was 16 pounds and 26 inches!



And here he is today; about 24 pounds and 31.5 inches tall!




Favorite Foods: gold fish crackers; graham crackers; cheese; Starburst; peaches

Favorite Cartoon Characters: Spongebob and Scooby Doo

Favorite Activities/Things: going outside, climbing onto and into things; bubbles, balls, dolls (hey he has 3 sisters!) giving and receiving kisses- but his kisses are licks:)  the girls don't like those kind but the cats don't seem to mind;-)

New Words: bubble, shake, graham cracker, muh (milk) side (outside); up; out; all done;  

He likes to try and "play basketball".  He LOVES things that he can open and close- there is no such things as a childproof cap in this house; he can get ANYTHING open if he wants too!  He loves to play with his sisters and is a BIG helper around the house.  He likes to open their fridge and take out sippy cups of milk and hand delivery them to Summer and Grace.  He knows who's cup is who's and has never gotten it wrong! 

EB: while is EB is better than it was 18 months ago and even just 3 months ago he still has some REALLY bad skin days.  He still gets large open wounds and many, many blisters some days.  Bath and bandages still take about an hour.  His hands and feet are his best areas (amazing I know) and about 75% of his wounds are self inflicted (from itching:-/)  He is sick right like (likely RSV- the drs office can't test for it so we just treat him like he has it) and his skin tends to get worse when he is sick.  He is no where near where Sami was at this age but he isn't Sami and is MUCH more active than she was at this age (she wasn't even walking at 18 months)  So I am very curious to see how his EB progresses as he gets older.

G-tube: still leaks; some days a lot:(  We went to see the surgeon and we have three options: 1) do nothing and deal with the leaking; 2) admit him to the hospital for IV fluids for 4 days and take the tube out and allow it to close a little on its own and then put a small tube in; 3) remove it permanently.   We are going with option 1 but would consider option #2 if we get to the point where he is losing weight because more calories are leaking out than are going in.  #3 is not an option right now.  He is BARELY on the growth chart as is it.  But #2 isn't ideal either because of the IV, being in the hospital with all those germs and mostly because he'd NEVER sit still for 4 days with an IV in his arm.  He would have to be heavily sedated for that to occur!  So we just deal with the leakage and change his belly bandages 2-3 times a day if need be.   The doctor said it will either leak out of his belly or he'll throw up from eating/drinking too much or from the pressure of just him walking and bending and climbing.  Or in other words just be a normal 18 month old.  We'd rather have his belly leaking than him throwing up multiple times a day.  

Sleeping:  that is hit and miss too.  He is NOT (nor am I) adjusting to this new schedule since school started.  Some days he is up at 6:30am other days I am having to wake him at 8 when its time to take Grace to school.  Some days he takes 2 naps; some days 1 nap some days zero naps. Night time sleeping is hit and miss too.   




 Mr. Monkey



yes, he really tries to shoot the ball into the hoop:)

a cute one of Summer and Grace from tonight:



 

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