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Wednesday, March 28, 2012

Love for Lucas

Join us on May 12, 2012 at 5:30 pm for a night of fun, silent auction, raffles and unlimited bowling and of course food in memory of their baby boy. For more information and to purchase tickets click on the link below.

Love for Lucas


News Article about Lucas

All proceeds will benefit DebRA of America to fund research and assist families affected with EB.

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. 

Happy 6th Birthday Summer!!

Here is the day you were born.  You weighted 6 pounds 9oz and was 19 inches long.

Here you are today!  You weight 52 pounds and are 47 1/2 inches tall!



Your favorite Color is red.  You still love anything Hello Kitty and Tinkerbell.  You likes to play outside with your sisters and friends.  You like school (most days)  Since you have learned to read you love to read now.   You are VERY loud and often get in trouble at home and school for talking too loudly (and too much).  Your favorite expression is 'OMG' and have taught your entire class to say it all of the time much to the annoyance of your teacher! 


Happy Birthday Summer!!

Sunday, March 4, 2012

Busy, Busy week ahead

Just looking at the calendar for this coming weeks makes me want to take a vacation!

Monday- two girl scout meetings originally but has since gone down to just one meeting for Sami.

Tuesday- nothing major (so far)other than making cupcakes and wrapping presents:)

Wednesday- Summer's 6th Birthday!!!
                       Spirit night for school at McDonald's!

Thursday-  Joey's 1st Birthday!  And he has a doctors appointment.

Friday- Joey has another doctor appointment.

Plus I have to work on Wednesday and Thursday evening.  Speaking of work, I have been at my new location for 6 weeks now.  Hard to believe its been that long.  Things are going well for the most part.  The company did change something with their medical/dental insurance and I have to work an average of 24 per week to keep my insurance.  I had been working less than that.  So after much thought and seeing gas prices I am now leaving for work as soon as Joe gets home from work I can get there by 6:30.  They store gets out much earlier in the evening than my old store.  I have no problems working late but that is no longer an option.  So instead of trying to find a reliable baby sitter or paying more for gas, I am going to make my Wednesday and Thursday very stressful by trying to get homework done, bandages done and dinner made (and myself ready) so I can leave the house no later than 6:10 and pray I don't get all 16 traffic lights from here to work otherwise it will take me WAY longer than the 20 minutes (with all green lights) to make it to work on time.  If I am getting there too late more and more than I will have to start working 5 days a week.    Well that is about it for now.  Look for more posts later this week for the birthday girl and boy!