13 Dec Update
Happy 3 month birthday, Keegan!! Today’s birthday gift? Double digits on the scale!! 10.12 pounds!!! YEAH!!!! By Christmas, he probably will be at double his birth weight. Slow but steady, right? His EKG and chest xray were good as usual; his echo showed good function, but when we left, they hadn’t looked at the clot yet. We should get an update on that soon. They keep us there at clinic until they evaluate the functioning of his heart in case they would need to prescribe any additional medications or admit him or what not. Looking at the clot takes longer because they have to compare it to the old echos, so they usually don’t tell us while we’re there. He had his second to last cytogam infusion; that’s the mega-drug that fights off CMV, a virus that most of us carry in our bodies with no effect except for transplants. We think that neither I nor the donor mom (babies Keegan’s age would give false readings b/c of mom antibodies) were carriers, but he gets the medication just in case. Lastly, they increased his main anti-rejection medication, Prograf, by almost double. The level of the drug they want to see at this time post-transplant is around 15; his was 5.4 yesterday. They said they just can’t keep up with his growth. It doesn’t seem to be affecting him though, as he’s showing no signs of rejection thus far. 5 would be perfect a year from now, but it needs to be higher until then. His medications are all a balancing game, which is why he needs weekly labs.
Other than that, Keegan’s got a nice little case of baby acne. Someone needs to explain to him that there’s no rush to be a teenager!! It should go away soon, but it’s awfully painful to look at. He’s sitting up better each day, and I think he finally realized that he can see the world from a pretty cool angle on his tummy. He’s really pushing up and looking around. He is polishing off 4 ounces at pretty much every bottle now, and he’s sleeping until about 3:30am before waking up for one. That usually means almost 6 hours for us – whew! Those new nipples really helped him start drinking more each time and not fighting us – that’s the best.
Well, I better get some more things done before he wakes up again. We’ll post a few new pictures soon. Thanks so much for checking in on us and continuing to pray for him. We keep praying for continued health and good reports! Have a great week, and stay warm!