Update: July 31, 2015

We were informed today that they cannot find a local facility to take us for Wesley's weekly ERT infusions. They are still looking, but our nurse said that most kids come here every week, because our Children's Hospital is the best place to get the quality care needed. This delay hurts my momma heart. I don't want to drive this long road forever. I'm very tired. We are overly busy as it is with therapy and his other appointments. Infusions closer to home were great news. That's been put on hold for we're not sure how long.

Wesley had an audiologist appointment this past Monday to try and see what we were doing wrong with his right hearing aid. It keep feeding back (screaming) no matter what I did to try and fix it. Turns out, it was malfunctioning so it got sent off to get fixed. We are blessed with a wonderful audiologist who truly cares about Wesley and listens to my concerns. 

Currently we are at infusion number 7. Wesley didn't want to take his medicine today. I had to hold him down and force it and that's truly awful. I hate doing that.  :( 

The numbing cream completely numbed his chest port today, although he was screaming from having to be held down, he didn't flinch at all when the needle went in. I've remembered to put it on the last two times as I keep the cream in my backpack all the time now just so I will have it.  Wesley is about to fall asleep. He is falling asleep with his "Moogie", my mom. I'm laying with Ava trying to get her to take a nap. She is so cranky today and since she is mobile now, she is getting harder to contain and keep happy as she wants to investigate everything by herself.

Infusion # 7

Thanks for reading. 

Please keep us in your prayers. 

Have a warriors heart, 

Wesley's Mom