Doing well but never completely free of fear

Jerry is doing well for the most part. He had some really great days of eating about a week ago... a few days were really normal toddler eating!! Nothing eases my mind like that. Then he suddenly began to eat and drink less, sleep poorly (waking at 4 or 5am to STAY awake and having trouble going down at night), and a few other funny things. Mostly he is happy and very energetic but sometimes it does seem like he tires easily or breathes a little funny. The last few days he seemed to crawl a bit or scoot on his butt instead of walking. He even seemed to have trouble pulling to stand (he is really completely competent in going to stand w/o pulling) a few times that I noticed. But a little while later he is running around and climbing the stairs a quicker than I can catch him. I just feel like until his echo I never REALLY know how he is doing. After the next appointment we will not be taking him off any more meds so I think I will feel more confident about his condition being stable.

I weighed him on our scale and thought he had not gained any weight but then he was almost 19 according to the doctor's office scale today (from 18 a little over a month ago). So I thought for sure Isaac must have been leaning on the scale (our home scale usually matches) but when I weighed him at home today I did get almost 19. That is a big relief. He can turn his car seat around in one pound! He had his synergis shots today (RSV protection...every month) so I hope he will not decline as he usually does from that. He ate pretty well (maybe half of normal?) today but only drank 15 oz.

We love the Morton Arboretum! It is a little sad because it reminds us of our free Metroparks at home (Cleveland)! We loved watching Jerry and Isaac play in the leaves and climb trees. Everything is a little more exciting since Jerry has come through his ALCAPA.