Monday, January 21, 2013

Helping his broken heart

I have a little catching up to do.  Sorry!  Life is crazy trying to learn to balance all of this. We had Christmas with our families this weekend, so I have been tucked away trying to get my house in some sort of order.  Reese loved having everyone over and all of the celebrating that went on.  

I am reminded everyday how special both of these boys are.  I couldn't ask for two sweeter or more handsome boys.  Reese is so loving and caring.  He truly has a heart for people and I can't wait to see how God uses that.  Yesterday he took a box of large band aids out of his drawer and put one of them on Brinkley.  

He said that it was for Brinkley's heart.  He has been a little obsessed with taking care of hearts lately.  For a long time we hesitated to try to explain to him about Brinkley's heart.  One of the Cardiologists in our group encouraged us to talk to him.  After some thought and prayer we told him that Brinkley had a hole in his heart and that was why he had to go back to the hospital.  We explained to him that the doctors would have to do surgery to fix Brinkley's heart.  Since this discussion he has insisted that every medical professional we see must check his heart including the therapist and the allergist.  He also insists that they check mine as well.  So far everyone but the therapist has complied with his requests.  

My Reesey is slowly but surely becoming himself again.  We have seen drastic improvements in his skin problems and improvements in his behavior.  He was retested by the Allergist and he has not developed any new allergies and he is still tolerating limited amounts of dairy well.  The doctor agreed that many of the symptoms we have seen are likely stress induced which would explain the recent improvements in the conditions.  He started play therapy last week and we will be interested to hear the Therapist's take on the situation when we return for his next session.   We anticipate that he may be diagnosed with OCD, but we know that the potential is there for ADD/ADHD due to his prenatal drug exposure.  There is one thing that we have no doubt about though, Reese loves Brinkley!

As for Mr Brinkley, we had his 4 month check up today.  He is a now a member of the 9lb club weighing in at 9lb 8oz and 22 inches.  That puts him somewhere between the 1st and 4th percentiles.  We love our little tiny buddy!  Most parents say they don't get much use out of Newborn clothes and diapers, but our little guy is rocking his tiny stuff and I love it.  I get the privilege of keeping him little just a little longer.  

We are still struggling with his feedings and the formula intolerance seems to be getting worse.  The fact that the specialty formula is out of stock with the manufacturer and I am almost out may help move this process along.    I am expecting the Pediatrician to get back to me on Wednesday with a plan.  As a precaution, she is sending us to a GI specialist to make sure that there isn't something else going on.  She and I both feel that it is truly and issue with the formula, but since GI issues are common with Downs we need to be certain.  It is also common for children with Downs to have eye, ear, and thyroid issues so we are getting referred for yearly or bi yearly evaluations with those doctors as well.  

It's time to get the wild man down for the night, so I must go, but I will try to update a little more this week.  Thank you for continuing to follow us, support us, and pray for us.  


  1. It's great to read this update. We are praying for your family. That's a neat picture with Reese caring for his little man.

  2. I loved reading this update!!!