Doctors Appointments

Normal, was the result of one of the tests Tommy had this week. This is not a word usually associated with his tests results. He had a hearing test and his hearing is normal!!!! His hearing was tested at the request of his orthopedic doctor.  Children with bone and collagen issues can lose their hearing over time, so his doctor wanted a baseline test.  Practically cried when they said normal, generally words like complicated, complex, mystery and puzzle are used.

Loved getting pulled in the snow.

His heart function is essentially the same as it was in Oct. Thankfully it really hadn't declined anymore. The big challenge continues to be the decline of his lungs.  The cardiologist is going to be talking with a pulmonary expert about some medication trials to see if they would help Tommy.  Any of you parents with kids with pulmonary hypertension have your kids on Atenolol(Senormin/Tenormin)? Apparently there is some reasearch that Atenolol might also help shrink Pulmonary Arteriovenous Malformations, thereby improving oxygen saturation levels. Tommy has PH and PAVM.

He had a lot of fun in the snow, but can only be outside for
about ten minutes before he gets too cold and
sat levels get way to low.

He will be admitted for a heart catherization in about three weeks. This will allow the doctors to really see what is going on with his heart and lungs. There is a possibility he has formed some venous collaterals that might need to be coiled off.

Thanks for all the prayers. Keep them coming.
Sincerely,
Grace
ps-My blog is open again. Blogger limits the number of people that can follow a private blog.  When I have time, I will be changing my blog to a way it can be more private and still have people read it. Thanks for your patience.