Toby saw 2 therapists this week. One is helping us figure out his reluctance to eat. She was quite encouraging since he now takes a bottle and shows other positive signs. He also saw a physical therapist about his large motor skills. We are returning next week for more specifics about how we can help him. It sounds like we'll get him crawling or he may go straight to walking. Either way, we'll get this kid moving- and probably regret it!

Today Toby has not been his usual happy self. I'm not sure what's going on other than that he obviously does not feel well and spiked a fever at one point. Hopefully, it will be short lived and gone when the new week rolls around.

Toby did make it out this past week to services on both Good Friday and Easter morning. (NOT sunrise!) He found the people a bit overwhelming on Friday but by Sunday was adjusting somewhat to the new interactions. The rest of the week has been spent at home. Toby is fighting a slight cold, again. But he is also enjoying spring and seems to be growing stronger. He is still not moving around, but I think the thought is at least starting to cross his mind. He will sit and play for long periods now, but is never more delighted than when he can get others to join him. His feedings continue at about the same level: a bit by mouth and most down the tube. I did stop his last remaining reflux medication and he has not had any problem getting along without it. Hooray! His schedule is a lot simpler now, just morning and evening meds plus breathing treatments 4 times a day. And, of course, he has the 6 feedings. It is so much more manageable than his past regimens and it is exciting to see the progress towards the need for fewer and fewer medical interventions.

Paroled

Toby visited the pediatrician today and was told it's time he got out and about.

I think I need to let that one sink in. 13 months later, we get to try to rejoin the world. It may be slow going for a while as his schedule is still restrictive, but here we come!

Toby weighed in today at an amazing 17 lbs 8 oz. Yes, that places him on the growth chart at last, at least for his adjusted age. He's still a little short at 26 inches. But what he lacks in height, he is attempting to make up in girth.

And his elbows have dimples.

He continues to show improvement also in his willingness to eat. When he's awake, he usually accepts the bottle and drinks at least part of it. We continue to tube feed the remainder. On the 21st, he will revisit the occupational therapist who worked with him previously on his feeding skills. He is also scheduled to meet with a physical therapist to address the large motor skills and get this kid moving.

I guess I better clean and baby-proof this house.

Toby made the switch at the beginning of the week to a more normal feeding schedule: 6 feedings, 1 every 4 hours. He no longer has long hours of continuous feeds on the pump at night. We do still use the pump, however, for whatever he does not take by mouth. This means that during the day, he gets a chance at the bottle first and then we tube feed whatever he doesn't take. He still gets to sleep through his night feedings. The main difficulty has been working towards the proper volume for the calories he needs since his stomach size is small. He does have problems if we fill him up too full. The good news- Toby is doing great with this schedule. He's having a lot fewer problems than with the continuous feeds. It has also helped restore a more normal appetite. He accepts the bottle now (!!!) and has actually drained it a few times. Hooray! It is a wonderful feeling to hold him in my arms while he drinks a bottle like a "normal" baby.
Praise God from whom all mercies come.