Oh goodness, the stories I have to share. I have some funny ones for you. I just don’t have the energy or brain cells left to do it right now. You will laugh if and when I get the chance to write them out for you though. As for now, Gideon appears to be doing great. He has grown out of his preemie clothes, his color is great, and his oral feeds are improving greatly. His fingers and toes still get cold from time to time but they don’t turn purple at all anymore which is a good sign. We have therapy on Monday and a 3 hour audiology appointment on Thursday with more therapy Thursday following that appointment up at Seattle Children’s. I look forward to seeing his in patient occupational therapist again on Thursday, she’s such a sweet gal. We are settling into a decent routine here during the week when Bo is gone at work and doing well. We haven’t returned to church or co op yet and probably won’t for a bit still. He still has “sternal precautions” so we have to be extra careful how we pick him up, hold him & move him. He isn’t safe to be worn in the carrier I have yet and I don’t want to just have him exposed holding him out in the open if we go to those places. Not until his sternal precautions are removed in a week and his sternotomy scar closes up in the last 2 tiny spots that have scabs still.
Prayers: Good results at the audiology appointment. We have to have this appointment because he failed one of his newborn hearing screens so we are praying for better results from this more extensive test they are doing. Also for peace for that outing. I’ll be taking him alone to Children’s and spending a decent amount of time there so I don’t want to get anxious about his eating/sleeping schedule that we are supposed to keep or using his food pump throughout the day or transporting him. I need to remember to put the stroller in my van so I can just push him around to our different appointments!
For his feeding plan. Things are changing and I haven’t been able to get clarity from his care team about what to do from here. We need to make more changes so I’m basically winging it on my own right now doing what I feel is best for him but would like clarity and confirmation from his team that I’m doing the right thing. We are so excited to see his cardiologist again to get all our questions answered and establish care with him officially but that’s not for a few more weeks so hopefully someone at his office can give us some direction while we wait.
That’s about it for now. I have lots more pictures and stories to share when I make the time. Thank you for following along and praying and encouraging us along this journey! We appreciate all of the help we are getting, it really does help us out immensely.
2 Replies to “Saturday 2/24”
Glad to see your update, I look forward to seeing your progress!! Way to go, he is looking so healthy!!
Glad to hear the up dates and glad to here things are going pretty good. He is a doll and please know we are praying for all of you every day. We also pray that the audiology appointment goes well this week and also all the other appointments you have in the coming weeks🙏 We are anxious to hear all the funny stories you have!! Love, hugs, and prayers❤️