We have had another eventful week of firsts and lots of playing. I hope you enjoy!
Medically, Nathan is still the same. His coloring looks good, so his bili level is normal, but his other liver enzymes are still high. His kidneys are still functioning at about 20%. His red blood cell count went down some this week, so we are going to do a more comprehensive blood count at the next bloodwork. This will tell us whether we have to start the epogen shots again. He is still on all of his meds for seizures, heart, liver, kidneys, etc. No changes there except we have had to go up on his seizure medicine because of increased weight and small seizures you can see by looking at his eyes. We still ask for prayers for a miracle for his brain, liver, and kidney functions as well as blood pressure. It is so hard to see him daily and realize that he looks so good but inside he is still so sick. We ask for prayers for our whole family.
Nathan has successfully transitioned to a 4 hour feeding schedule. He is sleeping better at night from about 11:30 to 6:30 with one feeding at 3am. Hopefully we can start trying to get him to sleep on his own. We didn't do cereal this week because of the transition to the new schedule. Hopefully we can start that back up this week.
ECI made some suggestions to use a mirror that Bev has graciously let us borrow as well as some techniques using a towel with Nathan. We are holding his head up with our hand, so his neck will get strong. We are using a towel in the bumbo, so he will hold his head up straight. He seems to like to look at himself in the mirror.
Jacen ate bananas this week and seemed to really like them. He rolled over from his back to his tummy yesterday (1/23). Of course, I had the cameras ready, but he did it for Daddy not me :( He is getting better and better at sitting up every day. He loves to grab things like paper and our faces.
Jacen still loves his thumb and decided Daddy needed to suck on his other thumb. He is already learning how to share. :)
We had the exersaucer close enough to the coffee table that he was able to reach the Babies R Us flyer. It was really cute because it looked like he was reading it. I guess I will have to start watching where I put the exersaucer.
Jacen had his first bath in his duck. He was getting too big for the infant tub, so we decided to transition him with the duck before trying the big tub. He wasn't really sure about this new way to take a bath.
Jacen still loves to try to get Patches' attention. He loves it when Patches looks at him.
ECI is working with Nathan holding his head up and Jacen was working on tummy time. It was too cute of a picture not to include since they are both looking in the mirror.
I had both boys practicing sitting up. Jacen is getting really good. Nathan has just started. I am hopeful we can do this even if the neurologist doesn't expect it to happen.
Jacen decided to hold on to brother. So cute :)
I try to do story time every day, so I put the boys in the bumbos and give them small books to hold while I read another book. Jacen threw his book on the floor and decided he would take Nathan's book instead. I guess the sharing of his thumbs with Daddy doesn't translate to sharing with brother.
The boys love Daddy play time!
5 years ago