Not Puberty

Bloodwork results are in and X is not in puberty.  What a relief!  X is definitely not in puberty and does not have Congenital Adrenal Hyperplasia.  We still do not know why his bone age is advanced 2.5+ years and what that will mean for him growth wise .  We will go back for a follow up and another bone age x-ray in 6 months.  When I spoke with the nurse she mentioned that many children will catch up with their bone age, so I am hoping and praying this is true for X.

I am relieved to hear this news, and at the same time am scared that they are missing something.  I always hope that a reason will be found for X's issues and there will be a quick and easy fix for them. All we seem to get are more questions and unknowns.  No one can tell us why his bone age is so advanced (and why his wrist shows delayed bone age while the growth plates in his fingers shows advanced bone age).  I am very happy he is not in puberty.  Very happy.  I am also frustrated that we have more questions.  This is such a crazy journey with X.  I suppose I shouldn't expect anything less considering X's personality.

X had his feeding button changed today.  That procedure is becoming less traumatic each time. (It takes about 3 minutes).  We could change it here at home ourselves, but that's not happening because, a) X would definitely not be able to handle that with his PTSD and b) I would probably pass out ( I can't even watch them change it out.  I tried today, but thought I was going to faint, so that was a no-go.  I totally suck when it comes to things like that).  When I told him yesterday about the upcoming change he was a little scared, but didn't scream and was still able to enjoy the day/night without obsessing over it.  This morning he was nervous, but was able to work through it.  These are very big steps for him and I am so proud of him.  He really is a brave little guy.

Tomorrow I am going to ask if we can try to go down to 1 tube feeding a day.  ONE.  I hope we get the okay for that.  Right now X gets one feeding in the am for 35 minutes and one feeding at night for 35 minutes.  This means he is usually up until 9:00pm so he can have time to digest any food he's eaten in the evening before getting his feeding.  His hunger doesn't usually kick in until around 3:00 pm and especially in the evening.  I believe that is because of all the continual feeds he had as well as the night feeds he had.  We still need to reset his hunger clock.  Hopefully by getting rid of the last feeding at night that will help.

All is going well over here.  We are heading into the cold/flu season and that can always be dicey for X, but I am hoping that he will do better this winter as his gut seems to be doing so much better.
Right now the biggest challenge with X is his halloween costume.  He wants to be a rotisserie chicken.

It's nice to update with good news.  I can't wait for the update that X is tube free and it is looking like we are getting closer to that update.