This week was a pretty typical week. Maddy has had a rough few weeks in therapy. Her therapists are shaking their heads trying to find a way to strengthen those little muscles when she fatigues so quickly. It's a good thing she loves her Suzan and Nicole and that they love her because sessions are not always easy!
Alex is still struggling to get his GI system to wake up and get back to his normal. He normally runs feeds at 50 cc/hr. We are stuck at 40 cc of half strength formula and have had no luck advancing past that. We ran labs this week and are hoping they may give us some clues as to how to help him further. He is still more tired then usual, but seems to be improving in that area.
This past Sunday was Scout Sunday. Our church is also the charter organization for Alex's scout troop so he was happy to serve during worship.
I have had a few people ask about our nursing situation. We used to have one nurse who worked 3 days a week and one who worked 1 day a week. The nurse who worked 3 days is the one who is leaving us. Erin (who was working 1 day) has decided to come o as our 3 day nurse. We are so excited to have her full time and not have to adjust to someone new. We will continue to search for someone to work 1-2 other days, but at least I have someone we know and love to care for Alex a few days!
This week was haircut week with both Zoey and Maddy getting haircuts. Alex loves Zoey to have a "show cut" which is shaved through her back and then long on her legs and stomach. He is always happy when she comes back from the groomer.
We are excited to share all about tomorrow next week!