The baby is gone; the little boy is here.

Toby continues to grow and change. Sometimes the changes are slow and imperceptible. Sometimes they seem to come at top speed. But all of them have definitely added up to a little boy in whom it is difficult to see the baby we prayed over.

The latest good changes include:

More mobility- He has been perfecting his scooch across the floor. We need a video to do it justice but it involves a combination of up and down and side to side motions which propel him forward in the sitting position. At top speed across a hardwood floor, he looks a bit like a belly dancer. He has also learned to use the walker to 'walk" wherever he wants to go. Put him in his crib and he is likely to bounce energetically or try to pull himself to a standing position. Aaaaalmost there, but he still needs a little help.

He is not yet back to physical therapy, but is obviously stronger in so many ways. His energy level also seems to be up. I suspect it is a combination of breathing easier and not being weighed down so much by constant feedings.

The nutritionist did make some changes to allow hunger to kick in and motivate some eating. He has three tube feedings: morning, evening, and midnight snack. That seemed to help for about a week, but he is eating and drinking less again. His weight this week was down from a previous high of 20# 15 to 20# 7. But the decision was made to allow him a couple more weeks during which he needs to gain or we will have to increase the tube feedings again. He HAS tried a few more and new foods but nibbles them in such small quantities. Plus he continues to have issues with gagging and retching. So the feeding issues remain as one of the biggest concerns.

The news at the eye doctor this week was all good. The patching of his right eye for the past couple months has helped a lot. His left eye was tracking fine and she told us to stop patching for the next couple months to see if his brain has made the needed adjustment. Toby will not miss the patch! A half hour to an hour a day seemed way too long to him, even though it came with one on one attention and books and toys.

The pulmonologist gave us good news as well. Tobias was monitored on room air for more than half an hour and did fine. His oxygen saturation level remained up and his heart rate remained down. She thinks it is time to move towards weaning him off the oxygen. Cordless may not be far away! First, Toby needs to finish coming off the diuretics he has been taking all this time to keep his lungs "dry". That should take place during the next two weeks if all goes well. Then should come periods off the oxygen during the day with the night time supplements the last to go.

Dr. T did caution that fall and winter are coming with the inevitable viruses. The journey may involve some "detours, but we will stay on track."

That good news is huge news. News for which we have been waiting nearly a year and a half. It is indescribably amazing and joyous to watch Toby breathing on his own without, well, just without. I remember the transition from ventilator to no ventilator. That was a top speed change and this is one of the slower speed ones but an equally big step. Gratitude to God overflows. He gives each breath to each of us but now we have lived with this reminder of what a mercy and gift that is.

"Let everything that has breath praise the Lord."

Toby also continues to communicate more and more. Mostly with signs, but he does try to talk a little bit. He also loves books, both reading and being read to. His sisters and brothers and his dad are his favorite toys. He is always excited to see them, especially if they are wearing hats. And yes, he will wear his own hat now.

17 months and counting . . .

Two more weeks have flown by.

Toby has finally begun to get around a little bit on his own. He's not crawling or walking; when he's sitting on the floor, he wiggles and twists and bounces a bit and manages to move from one spot to another. He is VERY happy not to be stuck in one spot any more.

He was scheduled for physical therapy this week but because of insurance issues was not able to go. He did see the occupational therapist who has been working with him on eating. She was thrilled with the progress he has made towards drinking more and eating a few more foods. He is also on a more normal schedule with three meals and a midnight snack which should help him develop a normal hunger cycle. His therapist continues to feel that the biggest obstacle to getting him to eat more is simply a lack of hunger. His tube feedings are enough that he just doesn't feel the need for more even though we are careful to offer him the real stuff before hooking him up each time. I have contacted his nutritionist to see if she can come up with a plan that will satisfy both the doctors- who want him eating and growing- and the therapist- who wants him hungry and doing more orally.

Last week, Toby received the all clear from the pediatrician for his staph infection and was able to stop the antibiotics. There are a couple spots of hard tissue remaining which we are to watch, along with any other spots, for possible recurrence. They should clear up in a few weeks. However, this week his sister, Caeli, developed two sores on her arm and cultured positive for the same infection. So the household is definitely not in the clear yet and continued vigilance is needed.

He's talking! Toby has added a spoken word to his growing sign language vocabulary. "Hat." He signs it and says it and wants to talk about hats all the time. His dad wears one and his brother and so, we have learned, do a lot of other people we see when we are out and about. Toby himself is NOT wearing his yet, although he has a new bucket hat he likes a bit. Otherwise, hats are for taking off as quickly as possible and for putting on other people's heads.

Two weeks and nothing but good news and normal baby development! How good God continues to be and how thankful we are!