Happy Blog Day!

Today has been wonderful. Michael had his appointment with his Cardiologist and he was so excited to see us. We haven't seen him since right after Michael got released from Children's. He was so happy to see Michael doing so well.I needed today. To have the Cardiologist see Michael and know that he is going to be ok. It has been so refreshing having Michael home. Don't get me wrong though, it's still tough. His sleep schedule along with feeds and meds have got me doing loops. Well worth it, I'm now seeing the benefits. Michael got his feeding tube out today!!!


Not only did Michael do great this weekend on his feeds but he's taking all of his medications orally. That is a huge win. I'm going to take a second and let you in to his medication schedule. This is what I have on my mind all day long. Making sure I'm not missing or sleeping through my alarms on my phone. Again with the alarms. At Children's and at home.

6am - Propranolol
9am - Amiodarone, Furosemide (lasix), Asprin
2pm - Propranolol
9pm - Amiodarone, Furosemide (lasix)
10pm - Propranolol

Unfortunately not all of these are on his feeding schedule which I have going around the clock as follows;

12am - 3am - 6am - 9am - 12pm - 3pm - 6pm - 9pm

You know when you wake up early every day to your alarm that goes off at the same exact time and for some reason you start waking up just a little bit earlier? Bless our body clocks. My body clock alarms be 15-20 minutes before my alarms go off. Every time. Even now it's 9:38 and I'm thinking "Only 20 more minutes before bed again. 20 minutes".

His dietician worked out an easier way for his eating schedule although I can't get this one out of my head. It's already set in stone in my mind. She said that we can try feeding him whenever he shows interest and make sure he's hitting a daily goal. Unfortunately I'm not great at math in my head - yet. I'm going to have to do this. I'm going to have to learn and I'm ok with it. He's gaining above his goal weight daily and thanks to his therapists that come to the house once a week I know weekly that he's doing great. They come and play with him and take measurements and weights. These women are outstanding and have shown me so much. They are helping me and showing me how to raise my son. I am so blessed to have these women coming to my home. It's a little unnerving having not only one person you don't know coming into your home. It's a whole other having three of them. Different times of the day, any day of the week. Not once have I felt uncomfortable inviting them in. These women were not only chosen to care for Michael but they were chosen to care for me as well. Thank you to everyone in the medical field for helping people in ways you'll never know. I am so thankful that these women go out of their way every week for Michael and me. They help me know and reassure me that I am doing a good job. Because mothers of any child can never hear enough that they are doing a good job. Every once in a while it needs to be said - and heard.