Monday, August 16, 2010
Summer is Officially Over! Annual Heart Cath Tomorrow
Tomorrow is Bean's annual heart cath. Although she has had many heart caths, this one is a little more extensive since it is her "annual". Her regularly scheduled caths include the biopsy for rejection, but her first one included a coronary angiogram - this one will repeat that test to make sure that she is not suffering from rejection issues that may be more long-term than the biopsy is designed to test for. She is on medication to lower these risks, so our hopes is that they detect none, but she will have this done every year for the rest of her life to catch any problems early on. We are hoping that she will repeat the same zero for rejection that we had last biopsy and all will look good - that will mean less clinic visits and more time between the heart caths, which would be great for both her and us! The drive to Stanford is long and with the hospital visit tucked in there, those days are extremely tiring - so the fewer we can have, the better!
In addition to that, we have our first endocrinologist appointment this week - where we might find a source for her lack of growth. No guarantees on that front, but it is possibly a hormonal issue which they may be able to solve. I am getting used to her petite stature, but it would be nice to get a little fat on her before winter and cold/flu season rolls around as that fat is her reserve if she gets sick. We dodged the bullet this past winter, but she was not nearly as active as she is now, so keeping her isolated will be much tougher this year. So, figuring out how to have her gain some weight would be great. She is 18 months old and is wearing mostly 3-6 month clothes (some pants have to be 0-3 months - others even newborn, although they look like flood pants, they fit her best in the waist). We are getting lots of wear out of her clothes, but we'd prefer a healthier weight! She is still seeing her developmental therapist through the Far Northern Regional Center, and will soon be consulting with the nutritionist and the occupational therapist about her eating - just to cover all our bases. We got good news from the eye doctor (she has a "lazy eye", especially when she gets tired) - no surgery! She may need to wear glasses because she is far-sighted (how they can tell that in a baby I will never understand), but he is definitely not advising surgery for her. Such a relief...
I think that about covers this week in the life of the Bean. Again, I plan to do some "What I did this summer" posts as school gets started (just to be able to revisit summer will be good for those first few weeks of total chaos at school) and I plan to do some additional posts on health, medical and educational resources for parents. I'm sure I will come across some other things to post about as well! So, stay tuned! We should get some basic results from her cath tomorrow afternoon after the surgery, so I will try to get something posted then, but it may have to wait until Wednesday when I get back home...it all depends on internet accessibility! Either way, I will update in the next couple of days!
I hope you all had a great summer and are looking forward to a good fall as well.