Open Hands

It has been a while since our last post.  A lot has happened in the last couple of weeks/months.  We had been looking for a home for a few months as time permitted (Yes, we squeezed it in.).  We were living in my grandmas house who is now in a care home. The market is doing well so it was time to sell her house and for us to look for a house of our own.  We had specific requirements that needed to be met for our family and with as many trips that we take to PCH the old real estate adage "LOCATION, LOCATION, LOCATION rang true.  

We moved in 3 weeks ago.  WOW, moving is much harder when you have 2 regular munchkins and one special needs kid. We did it though!!!  We are moved and settling in. (I have over 95% of the boxes unpacked, stuff put away and boxes given away.) woohoo!!

Zachary has been somewhat stable for the past couple weeks.  He seems to be tolerating his feeds now that he is on two new medications to help his gastro motility.  He tended to spit up anywhere from 2-5 times a day.  For him that is significant because he needs every calorie he can get.  He is suppose to gain   about 1/2 an ounce a day but he is at 1/3 to 1/4 an ounce a day.  The doctors really need him to grow and be able to tollerate his feeds before they can do his next heart surgery.  So for now we are just trying to get him to grow.  We had an appointment with his GI doctor this week and we have made a plan to try and help him.

 We just want to help him grow and wait for surgery.  If the new meds don't work, we will have to switch the kind of feeding tube he has.  Right now his feeding tube goes right into his stomach.  The other form of feeding tube would be called an GJ tube.  Bassically it bypasses the stomach and goes past it directly into the duadinum.  It's complicated, I know.  

Next week we see his primary care doctor and get his shots up to date and the folllowing week we see his cardiologist.  Praying we might be able to have a better idea of when they might do his next surgery. 

I have been struggling with waiting for his next surgery.  I am so thankful he is home with us and I am taking every moment I have to enjoy this.  It is hard to keep waiting. 

 Zachary turned 9 months old last week.  I was looking back at all of his pictures that were taken from when he was born and WOW, we have come a long way.  

I have also been thinking about his 1st birthday.  That is only 3 months away.  WOW.  With this up coming surgery it is hard to not think about the worst outcome. I am so excited to be planning his birthday but part of me is reserved because we have such a hump to get over.  I pray I won't be planning his funeral.  I know that sounds horrible but that is the reality of a heart mom. 

Lord- We continue to commit our Zachary to you with open hands. We know you are in control. We love you. Amen. 

Thanks for praying!

God is good!