Yesterday, Toby saw the pulmonologist for a checkup. A lot of good news came out of that visit. They downloaded the data from his O2 monitor plus gave him a trial on room air. Both showed that he is doing significantly better. We are going to try him on a reduced flow with the stated goal (Yes! The doctor said it out loud!) of officially beginning the weaning process at his next visit. He is outgrowing his dosages of diuretics and as long as he continues to do well, they are going to let that process continue until he can come off them completely. Additionally, one of his breathing treatments is being reduced from 3X daily to an "as needed" basis.
Toby officially reached the 20 pound mark, weighing in at 20 lbs 1 ounce. His nutritionist was also quite pleased with his progress. He is going to transition now from fortified breast milk to pediasure and continue to work with the therapist on his oral feedings. This will make life a whole lot easier.
But
These changes are on hold for a few days. Toby showed up for his appointment with a fever and was breathing pretty fast again. A chest x-ray showed "something going on". He started an antibiotic today which hopefully will zap it out.
This minor setback does not diminish the thrill of all the good news. We are happy, happy, happy- and thanking the good Lord for the continued healing he has given Toby.
Friday, June 26, 2009
Sunday, June 21, 2009
Saturday, June 20, 2009
Sometimes . . .
I left you wondering, with us, if Toby would keep his glasses on. Most of the time, he will. But at least once a day, he decides it would really be fun to pull them off 5 or 10 times in a row. This usually happens when the rest of us are busy with other things so is doubtless just a call for attention. All in all, Toby seems pretty satisfied with his new, improved sight.
This weekend is another milestone. Tobias was "due" June 21st of last year so his adjusted age is now 1 year. He saw the pediatrician last week for his 15 month checkup. He is 27 inches tall and 19 pounds 12 ounces. He's done pretty well with the catch up growth. This puts him at about the 10th percentile for weight (adjusted age) although he is still below the expected range for height. We've known since he was in the NICU that the steroids could cause him to be shorter but also that with the family gene pool he's been swimming in, we'll never really know the cause of any "shortfalls".
His general health is good. Problem spots are the same: lungs, feeding issues, motor skills, and eyes.
Toby will see the pulmonologist next week and the possibility that he will begin to wean off the oxygen continues to dangle there. Any improvement in the past month or so has been slight, but may be just enough to let him take that step. We shall see. Meanwhile, he continues with meds and breathing treatments.
Feeding will be an issue for a long time to come. He continues to have some signs of his reflux. (The surgery helps manage it not cures it). But he is off all his reflux medicines. He has also worked up to larger meals which let us cut back to 4 feedings a day. This, in turn, lets the feedings be spaced out enough to stimulate a more normal hunger cycle. Hunger, not surprisingly, increases his interest in eating. Toby now drinks about 20% of his milk each day and the rest we pump through his g-tube. Transitioning to solids continues to be troublesome. Baby foods produce gagging and retching. He does better with carefully selected table foods shared with him in a non-threatening manner. Translation: Toby won't eat for me but he likes to share with his siblings (especially Lydia). A high point this week was when he ate (bit, chewed, swallowed) several cheese puffs with minimal gagging. So progress is slow but enough to keep us hopeful.
Toby's physical therapist has given him a variety of exercises to help strengthen neck, arm, trunk, and hip muscles. He's improved some but is still basically immobile. We are thankful he enjoys sitting and playing so much. Toby also likes it when his siblings help him stand and is starting to figure out how to take a few assisted steps.
What he likes most of all is to be outside and he puts a lot of time and energy into persuading someone to take him there. Once out, the goal is the swing.
He doesn't talk much, but Toby does know several signs. He can sign "milk", "more", and "up" plus he's working on "swing", "outside", and a few others.
Unbelievably blessed. That's how we feel every time Toby progresses a bit or flashes his funny little grin or even just whines. (He's a whiner, not a crier.) Fifteen and a half months make an extra-long year but every minute has been a gift from a God who is both sovereign and good- and we thank Him for them.
This weekend is another milestone. Tobias was "due" June 21st of last year so his adjusted age is now 1 year. He saw the pediatrician last week for his 15 month checkup. He is 27 inches tall and 19 pounds 12 ounces. He's done pretty well with the catch up growth. This puts him at about the 10th percentile for weight (adjusted age) although he is still below the expected range for height. We've known since he was in the NICU that the steroids could cause him to be shorter but also that with the family gene pool he's been swimming in, we'll never really know the cause of any "shortfalls".
His general health is good. Problem spots are the same: lungs, feeding issues, motor skills, and eyes.
Toby will see the pulmonologist next week and the possibility that he will begin to wean off the oxygen continues to dangle there. Any improvement in the past month or so has been slight, but may be just enough to let him take that step. We shall see. Meanwhile, he continues with meds and breathing treatments.
Feeding will be an issue for a long time to come. He continues to have some signs of his reflux. (The surgery helps manage it not cures it). But he is off all his reflux medicines. He has also worked up to larger meals which let us cut back to 4 feedings a day. This, in turn, lets the feedings be spaced out enough to stimulate a more normal hunger cycle. Hunger, not surprisingly, increases his interest in eating. Toby now drinks about 20% of his milk each day and the rest we pump through his g-tube. Transitioning to solids continues to be troublesome. Baby foods produce gagging and retching. He does better with carefully selected table foods shared with him in a non-threatening manner. Translation: Toby won't eat for me but he likes to share with his siblings (especially Lydia). A high point this week was when he ate (bit, chewed, swallowed) several cheese puffs with minimal gagging. So progress is slow but enough to keep us hopeful.
Toby's physical therapist has given him a variety of exercises to help strengthen neck, arm, trunk, and hip muscles. He's improved some but is still basically immobile. We are thankful he enjoys sitting and playing so much. Toby also likes it when his siblings help him stand and is starting to figure out how to take a few assisted steps.
What he likes most of all is to be outside and he puts a lot of time and energy into persuading someone to take him there. Once out, the goal is the swing.
He doesn't talk much, but Toby does know several signs. He can sign "milk", "more", and "up" plus he's working on "swing", "outside", and a few others.
Unbelievably blessed. That's how we feel every time Toby progresses a bit or flashes his funny little grin or even just whines. (He's a whiner, not a crier.) Fifteen and a half months make an extra-long year but every minute has been a gift from a God who is both sovereign and good- and we thank Him for them.
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.
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.
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.
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