Battles against terminal illness, anxiety, and life!


June has been a challenge for us in this house.  With less than two weeks left in my first trimester, I am now starting to feel human.  The fog is lifting, and life is getting somewhat back to normal.  All of Braden’s doctor’s appointments have been rescheduled to July.  His IEP for this next school year is also in July.  It will be a month of taking care of business for sure.  While visiting the pulmonologist, pediatric GI, and urolologist will bring us a great deal of information, what I really crave is for my children to feel sand between their toes, sunshine on their face, and laughter in their voices.  That is what I want to find a way to make happen this summer.  I want to hear their wild giggles.  I want both of my children to understand that no matter what life throws your way, you may still find beauty around the next corner.  Perhaps I feel they need for some fun as a thank you for letting me trudge my way through the last very challenging ten weeks or to help propel us through the next rounds at a children’s hospital.  Alas, I am going to make it my mission to find some fun for this summer, even if only for a few days.

Braden is still working on kicking his cold.  He had a major reflux situation the other day.  Unfortunately, all this congestion is making it a bit tough for his breathing as well.  The extra sunshine has really highlighted the skin discoloration that A-T causes.  We also got to meet up with Braden’s adoption worker the other day.  (Hi Tracey! )  It was actually a great thing for him.  He’s been asking all the time about the day we met him and brought him home.  So, this was another layer to add to his story.

It’s amazing how much growing up Braden has done recently.  He continues to be our little comedian and love bug! We’ll be sure to update again soon!



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