WebMD article says, this is often normal in babies. So, they have not been too concerned, but the size was at least a little concerning to them, so they said they would do a blood test for hormone levels. If they come back normal they will leave it up to the transplant team to decide whether to check out her head or not (they did an ultrasound via her fontanel after the transplant and all looked good other than some vascular enlargement that they were not terribly worried about).
Since her fontanel is close to being closed now they would have to do an MRI to check it now and that requires her to be knocked out. So, we'll be watching and waiting to see if we have to do that. The hormone test consisted of her getting a shot (which she was not very happy about) and then waiting 40 minutes and having blood drawn. The shot is designed to send a "pulse" of hormones out, and they read the maximum level of those 40 minutes later to see if she is producing too much hormone. It takes two weeks to get the results, so we are now waiting. They seemed to think that with no other signs of issues with hormones, that she probably is fine, but they wanted to be sure. So, overall it was a very positive visit.
We also had our heart clinic visit and that was very positive as well. Her echo continues to look great, she weighed 21 lbs. 7 oz. and she is now 29 inches tall! She told Nancy, our transplant nurse, to "get out" when she came in the examination room, but soon warmed up to her and her Mickey Mouse watch that plays "Its a Small World". She is growing to hate the doctor's appointments though. I fear what the next year or so holds for us - while she is too little to really rationalize the visits but big enough to really protest everything. Nancy is so great though - she got her to let her take her blood pressure by letting her push the button to start the machine and count with the numbers as they were going down. It was fantastic to watch because Bean is very stubborn, but was willing to cooperate because she was involved in the process. Nancy is just great. So, I'm glad she didn't get out when Bean told her to! :)
We are now on schedule for another biopsy in six weeks and are hoping for another zero, which would allow us four months before her second annual exam (what? I can't believe its that close to two years already) and then hopefully if all looked good we could go to a six month biopsy schedule! What a relief that would be.
Other than that, Bean has been doing great. She is saying a ton of words (repeating after everyone and everything). She loves baths and brushing her teeth. She has grown out of her six month clothing and is now moving through the nine month clothes into twelve month clothes! So, she's only a year behind on the clothing size time line! :) She recently went to the snow near our house and visited the fish farm. Pics below!