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!
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)
