Hope Wanes

So far the news this week is mixed, generally good but as is typical with Max there's always something.


Starting with the good news:

• Dermatology can be checked off the list for the next 12 months as they found no changes in Max's numerous moles and other skin ailments. They sent us on our way with some ointments and a fond farewell.
• GI was happy overall but they are quite concerned with the fact that Max is starting to fall off the weight charts. This may be due to several things, impending puberty (say it isn't so!), decreased appetite or simply a growth spurt. Their biggest concern here was that if Max were to get seriously ill or need another cardiac surgery (again, say it isn't so!) he would not have the reserves necessary for a smooth recovery. With a good blood panel measuring the quality of Max's nutritional state and the instructions to step up the calories we can also check them off for 12 months.
• Hematology, the jury is still out on this one until some important blood work comes back looking at Max's blood clotting factors and other antibodies that were present in his blood after last summer's surgery. Either way we should be OK to cross them off the list for a year because no matter what the results are there's nothing that can be done to improve things other than wait and see what happens.
• Ophthalmology found Max's vision to be 20/20! His eyes still turn out a bit but his depth perception seems slightly improved. Continue the eye drops and see ya in a year! Check!

Moving on to the "iffy" news:

• Cardiology, ah good 'ol Cardiology. Here things are a bit sticky, as they always are. Max's echo cardiogram shows some changes on the right side of the heart and his pulmonary valve. I am REALLY starting to hate valves! We were told that this valve is usually slow moving as far as deterioration goes but heck we've heard that before and yet still ended up with major cardiac surgery. This has Michele and I concerned in light of the GI and Hematology concerns I listed above. We were told that echos would have to be done every three months at home and with each set of results Hopkins will evaluate when they want to see Max. Probably not checking them off for 12 months......

The "we don't know" news:

• Pulmonology we haven't had that visit yet so who knows? Stay tuned here.

So there it is Ladies and Gentlemen, Hopkins in a nutshell. Positive thoughts and lots of good echos are what we need at this point. 

On the Road Again

Early tomorrow morning (very, very early, 4AM to be precise) the Marangella's will be taking the show on the road. We're on our way back to Hopkins for one last set of evaluations and tests before the doctors determine if we can be "cut loose" to a once-a-year schedule. It has been so long since we've only had to make the pilgrimage once a year it doesn't seem possible. This possibility seems even more precarious when you consider that the pontifical blessing must come from no less than eight specialists. Fingers crossed that Max can impress all of them. Prayers please!


Stay tuned for updates in our quest for normalcy and a reprieve from our only "vacation" spot!