was Heart update...changing needs

[Guest guest]

She's missed 3 weeks of school since shortly before Thanksgiving, and the impact of her illness on everybody's life is becoming painfully obvious.

You must be reading my mind! has only been to school a few days since late October...and when we sent him back for three hours (two weeks ago) he slept for two days...Dr K feels like it just might be too much for him. I told the teacher I would decide after the break if I truly wanted to give up trying for school and put him on home-bound...it is a hard decision for me to make. He doesn't really want to get out that much...he doens't really say why, but I am sur eit is b/c it just makes him too tired. We went out to eat last night and were gone about 30-45 minutes and he had a meltdown and went to bed 45 minutes early (they already go to bed at 7p). He doesn't want to go to church anymore, so this morning my husband and my three year old are gone and me and the baby will go on Wednesday night. Its just really obvious that he is more tired and we are called to make more and more changes in our life...some of which, have been very hard on me, but I guess its nothing compared to what they are going through.

In our case...andrew just 'seems' so much worse even though to the unknowlegable eye they wouldn't see that much...of course, I am blaming it all on the cardiomyopathy at this point...thinking that would explain his tiredness, but who knows?

so I can relate...we are heading up your way sometime near the end of January...would love to meet you Maggie...

deb