Baby E

As we have navigated Matthew's journey, an unintended blessing is getting to know people we would have never known otherwise.  Doctors, nurses, therapists, office staff, teachers, aides, and so on.  I may only know these people in context to the care they provide for my son, but I do care for these people greatly. They have helped light the path when there was a great deal of darkness and for that, we are so very thankful.

Similarly, one particular sorority I joined being Matthew's mom is 'Moms of Unique Kids'.  Though no one shares Matthew's particular chromosome disorder, there are lots of kids who have very unique disorders, and some of them are similar to Matthew's.  It is a sorority I never would have pledged, but one I am thankful I have found.  These mothers may encounter different curves in their little one's journey, but we all relate to the fact that we are all on the journey of the unknown. 

I love to hear about, see and meet kids who have a similar diagnosis to Matthew.  I learn from their experiences and I hope that they are able to benefit from our experiences as well.  It is a small sorority so every connection is huge!

There is a little 7 month old boy who has a similar chromosome duplication to Matthew.  I believe he is also the only one known with his particular chromosome disorder (which includes a deletion as well). He and his family could use prayers and well wishes today as he undergoes open heart surgery to correct his Tetralogy of Fallot heart condition. 

Baby E sitting like a champ!

We appreciate you sending up good wishes and prayers today for cute baby E, his surgerical team, and his family.  I know your prayers and well wishes have helped us in our most trying times and I hope that E's parents will know the same.