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Thursday, March 8, 2012

Happy 1st Birthday Joey!!!

Here you were 1 yr ago!  You weighted 6 pounds 8 oz and were 19 inches long:



And here you are today!  You now weight 20 pounds and 12 oz and are 28 1/2" inches tall.



You love to sit and play on the floor with your sisters.  You love Elmo, Mickey Mouse, banging on things.  You love to look at books.  You like to eat Cheetos, Animal Crackers and Gold Fish Cracker but will not eat off a spoon. You can clap your hands (when you want to which isn't often) you have crawled backwards a few times on your own.  You like to move around in your walker and pull magnetic off the Fridge.  You like to stand with help.  You LOVE to go for a ride in the wagon.  You also like to pull mommy's hair:(  You can say Dada, mama, all done, baba.  You also like to do fist bumps with Daddy.


Here are some picture from our birthday celebration here at home:



the birthday boy!
YUMMY!!!
turning into a smurf!
he loved his cupcake!
what? its all gone already?
birthday brother and sister!





Joey went to the GI doctor today and his blood work is in the normal range and his Hemoglobin is 12.0! (normal in someone without EB is 11-13)  That is AWESOME for someone with moderate to severe EB.  The doctor wants to add another reflux med because his still having issues but is on the highest dose of the medicine he is on already.  And we are switching him over to a medical formula called EleCare Jr.  He is lactose intolerant and allergic to soy and rice so here isn't much out there that is lactose and soy free!  It's SUPER expensive.  If the insurance won't cover it there are other options we can do to make sure he is getting 1200-1500 calories per day that he needs to heal, grow and gain. 

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