Friday, May 29, 2009

Monday, May 18, 2009

Bee Mine!

The fun first-
Thanks to the Hubbsies for the new swing.
It is being enjoyed by all, though Toby is the only one who gets to fly.



Toby saw the eye doctor last week. He has glasses on order (!!!) and will soon be sporting a new look. He is farsighted (how can they tell?) plus has been crossing his eyes. It is hoped that the glasses will solve both problems.

Friday, he met the occupational therapist again about his feeding skills. She continues to be encouraging even though he is at present less than enthused about most foods. He has had a few days where he tasted a little bit. And I think he's learning to rely on Lydia for the "good" stuff as she likes to share. He has also done better the past few days with the bottle; instead of drinking an ounce or two and calling it quits, he has been drinking most of the allotted 5 ounces.

He had his third session of physical therapy with the third therapist to tackle the job. This one says she'll stick around a while. The plan is to go every couple weeks this summer. She is helping with exercises to get him moving.

He also had a weight check and has gained half a pound in two weeks, topping out at 18 lbs 11 oz. This should please both his pulmonologist and nutritionist and should allow us to continue with the latest protocol they set up for him.


We have much to be thankful for as summer arrives and are anticipating a lot of sunny, fun-filled days- flying with the bees.

Saturday, May 9, 2009




We finally have some new photos for you after resolving the latest technical problems. We were trying to get him to show off his new teeth. Our success- or lack of it- is self-evident. They came in with an interesting pattern: the two middle on the bottom and then two more on the top but on either side of where the two front ones belong. The "fangs" have been an interesting look which is soon to pass as the front teeth are now coming in.

The scheduled visit to the therapist was cancelled this week. Toby has kept us busy with the usual. It has been a nice, uneventful week.

Friday, May 1, 2009

The apple blossoms are blooming,

the new bees are in their hives, and spring is definitely here. Toby loves to be outside and manages to communicate this without words. It's amazing how effective body language can be and how quickly babies learn to use it to full advantage.

As hoped, his fever was gone with the weekend and he is doing pretty well. Today has been a day to sleep a lot and recover from his trip to Ann Arbor yesterday. It was a long day and wore him out.

He has been doing so well with his oxygen level that I fully expected the weaning process to start. But yesterday his numbers were not quite as good. His pulmonary team decided he is not ready for that and also to try a few medication adjustments. Maybe at his next visit, in 6 - 8 weeks, it will turn out differently. But for now, he remains on his tether.

The physical therapist he saw last week left unexpectedly for a new job. Another therapist and the student he saw last week stepped into the gap temporarily. They were able to get us started with some exercises and goals we can work on at home that are very helpful. Already today he has made progress with rolling from his stomach to back. Another thing we are working on is his pelvic muscles. He lets his legs flop out and needs to learn to bring them in and tuck them up where he can use them. It is great to have a better understanding of how we can help him.

We also spent some time with the nutritionist discussing feeding plans and goals. His weight is now 18 lbs 3 ounces which makes a nice upward curve on the growth chart. DID I FORGET TO MENTION? We increased the volume of his other feedings and cut out the 3 am feeding about a week ago. He's adjusted well, as have I. The thump, thump, thump you hear is my dance of joy about the extra sleep!

Toby is also doing a little better about tasting some different foods. We just have to come at it sideways. He did not see the occupational therapist (whose job it is to help with the feeding issues) this week but is scheduled for another visit with her next week. He still gets most of his nutrition through his g-tube. He drinks an ounce or two from the bottle quite enthusiastically, but then seems to think he's full.

All in all, progress is slow but steady. And we like where this path seems to be heading. God is faithful and good.