Eli had his checkin with his surgeon yesterday. She said his mickey looked great, which we already knew! :) She's not super thrilled about the fact that he's been losing weight over the last 2 weeks. This started when his breathing started getting really bad at night. She's going to push the pulmonologist to get Eli in sooner. She also wants to add extra calories to his feeds. She wants us to add a substance into the breastmilk to add calories. It's a prescription, can't remember what it's called. She also wants his feeds increased to 10 hrs at night instead of 8. She is also going to be trying to get us a new pump, a portable one that we can just throw over our shoulder in a carry bag and take with us so he can get extra calories and feeds that way as well. The nurse and doc were shocked that we've made it almost 5 months with nothing but breastmilk! :) I was very proud of this fact and VERY thankful! If it wasn't for our friends supplying us with extra milk in the beginning and TONS of remedies to increase my milk and TONS of support we wouldn't be where we are! I'm currently pumping 13 to 14 oz a day and am barely ahead of his daily needs of pumped milk! BUT I still have milk in the freezer from all of our amazing friends as we go thru this next phase of increasing my pumping demands again! We have been SOOOOO blessed!
Eli also had OT this last week. She is impressed with the work we've done with his hands and so happy with his tracking as well! She's a bit worried about his legs and feet and showed us some exercises to start doing there! She is going to have PT come out and look at his feet and see what she would like us to do extra! She's also going to be having speech come out for another check in/evaluation. He is still barely making any noises. Sometimes it almost looks like he is trying to but he just can't get them out. He is definitely more interested in watching our mouth when we talk to him, so we are hoping with time he'll figure it out!
Everyone else is doing well! Ben is on an all day field trip today. Jace also has a special day today as a travelling play is coming to his school for a performance. The girls are having a quiet rainy day today at home! I'm trying to motivate myself to get some housework done! Bob is working. My mom is taking the girls and I out for lunch today to celebrate my birthday so that will be a nice break in my day.
more updates and pics soon!