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11.12.2012

May Updates....in November

Trying to catch up....

May 5, 2012: Kalie’s Shower

We had a great time hosting Kalie’s shower (Justin’s cousin)! The decorations were so fun to make and the food was great! Our theme was the “oh, the places he will go…” based on her travel themed nursery. We had luggage tags as favors, and decorated with maps, green and blue. We did it open house style, which I thought was so nice so people could come and go as they wished. 

Kalie are her husband, Robert, are so special to us! They were the catalyst in building our website and getting the fundraising together to build our house.  They are going to be great parents!

 May 6, 2012: Juts Birthday

Justin celebrated his 32nd birthday. I love him so much! He is a great dad, husband and father!  He would never tell anyone, but do you know what he does now for his birthday?  He donates his birthday money to Harvest India, an organization dear to his heart after going there on a mission trip. We just wish India was closer so we could be more of a part of what they are doing! Here is a link if you are interested in learning more; www.harvestindia.org

May 7-10, 2012: Minnesota round 3

Well, I am big and pregnant, so Joan and Jut to the trip to Minnesota with the kiddos!  THANK YOU Joan for doing this so our kids could continue to participate!

Jayden is doing well, but has tested at only 13 months.  His strength is his mobility, and they said that he moves better than many Sanfilippo kiddos his age! Keep it up, buddy!  If you don’t believe us, watch him dribble a basketball!

Brooklyn is still progressing! Great news! Although she is still delayed, she tested at a 4.5 year old level in her domestic play skills. She loves dolls, singing, cooking in the kitchen and cleaning! Way to go, Beeba! 

It is always hard hearing the news that they aren’t at a normal age range. But, we know that is the reality and try to focus on all the things they CAN do, and make the best of what they need help with. We are so thankful for the team in Minnesota studying Sanfilippo with a hope soon for treatment or a cure. It may not be something we see in Jayden or Brooklyn’s lifetime, but they are heroes in my eyes for helping other children in the future.

May 23, 2012: Laremont, Jaydens new school

Summer school for Jayden is a go! I am SO VERY THANKFUL for a school that goes above and beyond serving students that have severe to profound disabilities. The spirit of the school is positive, and contagious!  They are fantastic advocates for Jayden and I didn’t have to fight for one thing! Jayden’s teacher even called me before school started to get to know us and explain the school. Although it comes with some sadness that this is the school he is at in first grade (we were hoping he could do public school until high school) we believe with all our heart this is the best place for him. They have 6 kids in each class, teacher aides, nurses, every adaptive communication, mobility, special ed-anything at their brand new facility.  It is state of the art like the staff.  Again, I am thankful. Thankful that he is just like his peers, he is loved, he is challenged, he is not being bullied or made fun of, and he can learn just how he needs to. Thank you LAREMONT!

May 30 also brought the arrival of Miss Elliotte Brynn, happy birthday Ellie! (see separate blog posts)