Thursday, June 25, 2009

New Post - Finally!

Hello all.  Sorry for the gap in posts.  Thanks for continuing to stay tuned in.  It has been a hectic week with lots of work and not enough sleep.  Brosie is doing well and finally growing again since I switched him back to his regular formula.  He has been home for 16 days now.  Still having a lot of secretions,  (When will it end?)  and preferring to stay up all night.  
We are trying to get into a routine of putting in his hearing aids to do hearing related activities (stories, songs, musical instruments, toys that make noise) but frequently have trouble with feedback.  We will be experimenting with options to try to reduce this, such as wearing his hearing aids on his shirt connected by long tubes to earmolds (will be a few weeks until we get them.) They are not getting put in as often as I would like.  When a baby first gets hearing aids, he is at a "hearing age" of a newborn.  If they are worn four hours a day  it will take 6 years to give him the hearing experience of a one year old.
Ambrose still has a rash on his back. It's much lighter but never really went away.  
Yesterday he saw his orthopedist and endocrinologist.  We are working on getting some splints that the ortho prescribed, but she says if he doesn't tolerate them, she doesn't think there will be any harm to his weight bearing. (His ankles turn in and his feet out.  Will try to post a picture soon.)   We also talked about his scholeosis (mild) and its possible effect on his breathing.  Apparently it is possible to have surgery to increase the size of ones rib cage to help the lungs.  She was not suggesting that he was anywhere near in need of that, but it is interesting to know that it is possible, although quite frightening.
 The endocrinologist said the results of all labs he had drawn a few weeks ago (cortisol, thyroid, growth hormone, sodium) were all normal and he was very pleased with how he is growing overall.  He has been monitoring Ambrose since Sophia had many of these problems, which are all related to the pituitary and Ambrose and Sophia both have very similar, flat, abnormal looking pituitary  glands.  He says that doesn't necessarily mean anything.  He told us that some people don't even appear to have a pituitary gland and have normal hormone levels as other cells take over.  Isn't the human body amazing? Ambrose's sure is!  He has so many "abnormal" (I prefer to call them "unique") parts.
Today Ambrose is going to a picnic at Mommy's workplace.  Tomorrow he is getting casted to have AFOs (foot splints) made.  

1 comment:

  1. Good to hear more Ambrose news - it certainly seems like no news is good news! :-)