Saturday, March 26, 2016
Monday, July 15, 2013
Saturday, May 5, 2012
Marching into May
Not only are those new glasses cute, but they have made everyday life a lot easier. The previous pair were trouble from week one and despite trying various remedies, Toby had one of those true love-hate relationships with them. He loves to be able to see, but he sure hated wearing those glasses. He had taken to wearing his old "baby" glasses which, despite their small size and improper fit, were a whole lot more comfortable. These new glasses are an answer to prayer. In conjunction with a custom strap from Framehuggers, Toby has been happily wearing these for the past three weeks. He removed the strap once the first day he had it, but since then has been a happy camper. File this under: Things that seem like no big deal but are actually huge when you have to live with them hour after hour, day after day.
His eyes continue to do well. We are still waiting to see what the doctor decides about future surgery, but meanwhile enjoy a break from patching.
Last week included a visit to his pulmonologist and nutritionist. His lungs are doing well and we have been able to reduce the breathing treatments from twice a day to only once. The nutritionist was less pleased. His weight is down since the last time they saw him, which roughly corresponds with the period of time we have not been tubing him. Their plan is to have him weighed in a month and restart the tube feedings if he has not gained enough weight, about half a pound. My plan is to do my best to avoid this up to and including kicking and screaming. It is frustrating to think about going back. He has come so far but can't quite seem to get to the top of the mountain. It is not helping that, if anything, he seems to be eating less the past few weeks. It seems like we have already tried everything to get the good, high-calorie stuff into him. But we are hunting around for another new trick or two to try, even while knowing that success will probably only come after plodding along a while longer with more of these small steps.
Developmentally, Toby is progressing well. He loves to be read to and is engaging in more imaginative play. It is fun to read to him and later hear Billy Goats Gruff Trip Trapping over bridges, But still, diggers are his favorite. Despite the parade of tractors through town here, he has plans to some day be a farmer who drives not a tractor but a digger.
Hooray for sunshine, dirt, and little boys. And bedtime.
Tuesday, March 6, 2012
Happy Birthday, Toby
Let's start with the cute photos: (or rather, the photos of the cutie)
The birthday dinner included some of his favorite foods, spaghetti with shake cheese and orange jello. . .
and finished up with the Pooh cake he requested. (He wanted it for cutting, not eating.)
It is difficult to believe he is 4 years old already and difficult to remember the reality of those first days. The memories are still there and vivid, but buried under an increasing pile of ordinary, happy days. And always when I look at him, I feel a strong undercurrent of gratitude. So I have been thinking lately about the gift Toby is to us and ways he has lit up my life in the past 4 years- 1,461 days of Grace.
God has protected and sustained Toby many times, beginning with his birth and survival and continuing through his ongoing medical journey. I have literally been thankful every day. Yet, I have other children. They are also created by God, “fearfully and wonderfully made”, and because of his mercy and sovereign grace, protected and sustained every day. How is it, then, that I see God's power more clearly when looking at Toby? God protected the others from problems Toby had to face. Should he not be praised for this? Instead, I find in myself a hardness of heart and ingratitude which overlooks the graces God sends each of us every day. This is a blindness of not seeing. God has used Toby's weakness to show me these graces and his glory as he told us he would in 2 Cor 12:9: My power is made perfect in weakness.” Toby speaks God into my life each day as I see God's strength in Toby's weakness and I am then able to see his other gifts more clearly.
Toby has also been a good reminder to me of how needy I really am. We have tried to get him the right doctors, treatments, medicines, therapies, etc. But all the time, I know that I am not in control and my understanding is limited. Even the professionals can only do their best guess. God told the church at Laodecia in Rev 3:17: For you say, I am rich, I have prospered, and I need nothing, not realizing that you are wretched, pitiable, poor, blind, and naked. This is a blindness of seeing good where there is none, seeing a sufficiency in myself which is not really there. Toby has been a vivid illustration of my own impotence and mortality, leading me to depend more on God.
There is another blindness I sometimes have when I don't see the good that is there in the negative circumstances. God promised to work all things together for our good and yet I fail to believe. I see danger, stress, and problems. In chapter 13 of The Last Battle, entitled “The Dwarfs are Not Taken In”, C. S. Lewis describes this dangerous blindness. Thrown with others into a damp, dark stable, the dwarfs see only what they expected to see. The others saw the reality- a new, big, beautiful land. Aslan observed,“They [the dwarfs] have chosen cunning instead of belief. Their prison is only in their own minds, yet they are in that prison; and so afraid of being taken in that they can not be taken out.” As I have seen God keep his promises and bring good out of Toby's difficulties, I can see more clearly the reality of God's goodness.
It is difficult to believe he is 4 years old already and difficult to remember the reality of those first days. The memories are still there and vivid, but buried under an increasing pile of ordinary, happy days. And always when I look at him, I feel a strong undercurrent of gratitude. So I have been thinking lately about the gift Toby is to us and ways he has lit up my life in the past 4 years- 1,461 days of Grace.
Toby's life has shown me three ways I have been blind.
So thank you, Lord, again, for the gift that is Toby. May his life continue to bear witness to the Light.
(Happy Birthday, Zeke)
Thursday, January 12, 2012
Time for another update already . ..?
Our last update was 7 1/2 months ago- and I've been thinking the whole time that I would update when something exciting happened. Isn't it great that nothing exciting has happened?
When we left you last, Toby was working with a therapist to become more comfortable with different textures. This was very helpful. As she explained, if he won't touch it, he definitely won't put it in his mouth and eat it. We did a lot of fun things generally known as "messy play": driving cars in pudding mud, shaving cream, finger paint, foam soap car washes, and a face plate to decorate with food faces. Lydia, Naomi, and Joella went with Toby sometimes and learned the techniques for playing and introducing new foods. They have been a big part of the progress he has made. And he has made progress. It has been slow; Toby is the tortoise not the hare. But he is winning the race!
A year ago, we had our first visit with the feeding clinic in Grand Rapids. At that point, his oral diet mainly consisted of small amounts of crackers and chips- only things that fit into the dry, snack food category. They recommended him as a candidate for their intensive feeding program and put him on their 18 month waiting list. At our return visit this month, I took the following list of foods he is now eating:
Pause now for happy dance.
Toby has now been discharged from the feeding program. He has been receiving 355 of his recommended 1200 calories by tube feedings. (This is 1 box of formula per day compared to the 3 he was receiving a year ago.) They think we can half that amount and work to get him to take it all orally. So it is possible that we are only a few months away from being able to remove his extra belly button. And we are praising God that we no longer have to worry about the difficult logisitics of the 8 week intensive program.
There are still issues, of course. It will take more time and effort to continue to increase the variety of foods he eats and to normalize his appetite and response to hunger. But we are so close to the land of happy eating that we can already feel the sand between our toes. Praise to the God who heals.
When we left you last, Toby was working with a therapist to become more comfortable with different textures. This was very helpful. As she explained, if he won't touch it, he definitely won't put it in his mouth and eat it. We did a lot of fun things generally known as "messy play": driving cars in pudding mud, shaving cream, finger paint, foam soap car washes, and a face plate to decorate with food faces. Lydia, Naomi, and Joella went with Toby sometimes and learned the techniques for playing and introducing new foods. They have been a big part of the progress he has made. And he has made progress. It has been slow; Toby is the tortoise not the hare. But he is winning the race!
A year ago, we had our first visit with the feeding clinic in Grand Rapids. At that point, his oral diet mainly consisted of small amounts of crackers and chips- only things that fit into the dry, snack food category. They recommended him as a candidate for their intensive feeding program and put him on their 18 month waiting list. At our return visit this month, I took the following list of foods he is now eating:
Breads
toast (plain)
bread sticks
french fries
noodles (plain)
with oil or butter
with parmesan cheese
boxed mac and cheese
crackers
muffins- some/sometimes
dry cereal
soft pretzels
Fruits
fruit leather
frozen fruit smoothies
raisins
dried cherries
choc covered raisins
Veggies
none
Meats
chicken nuggets
fish sticks
bacon
dried meat sticks
meat on pizza
cheese shreds
nuts
“normal” food
pizza
Junk Food
candy- most
cookies- some
ice cream with hard shell coating
jello
chips/popcorn
Beverages
milk
juice
milkshakes/smoothies
Boost- sometimes
drinkable yogurt
prefers water
Things he won't eat
veggies
fresh or canned fruit
eggs
unprocessed meat
lunch meat
toppings on bread, etc.
dips/sauces
“normal” quantities
Pause now for happy dance.
Toby has now been discharged from the feeding program. He has been receiving 355 of his recommended 1200 calories by tube feedings. (This is 1 box of formula per day compared to the 3 he was receiving a year ago.) They think we can half that amount and work to get him to take it all orally. So it is possible that we are only a few months away from being able to remove his extra belly button. And we are praising God that we no longer have to worry about the difficult logisitics of the 8 week intensive program.
There are still issues, of course. It will take more time and effort to continue to increase the variety of foods he eats and to normalize his appetite and response to hunger. But we are so close to the land of happy eating that we can already feel the sand between our toes. Praise to the God who heals.
Tuesday, May 24, 2011
Toby is back in good health and enjoying the additional opportunities spring brings for playing outside. Additionally, he is starting a series of visits with a therapist in Ann Arbor upon the recommendation of the feeding clinic in Grand Rapids. After the initial evaluation, the therapist feels that his oral muscles have developed well enough (and will continue to improve with use) that Toby does not need to work on strengthening exercises. So the focus will be getting him to accept new textures and oral sensations with the ultimate goal of broadening his food selections to include meats, fruits, and vegetables.
We are excited to see what progress the next few months bring.
We are excited to see what progress the next few months bring.
Saturday, April 30, 2011
pneumonia
It started as a cold last weekend and by Tuesday had progressed to "time to see a doctor". He is responding well to the antibiotic. A couple days were pretty much spent sleeping but he is now clearly on the mend. We are thankful that Toby was able to avoid this complication the past couple winters and that his lungs are bigger and healthier now and more able to handle this stress. At a follow up visit on Thursday, the doctor said his lungs are doing well. We continue to pray that it clears out completely.
This has disrupted the progress in the feeding department. He has just not been interested in eating, though his appetite is beginning to come back. I have temporarily increased his nightly tube feedings, but even so he has lost at least 3/4 of a pound this week.
This has disrupted the progress in the feeding department. He has just not been interested in eating, though his appetite is beginning to come back. I have temporarily increased his nightly tube feedings, but even so he has lost at least 3/4 of a pound this week.
Saturday, April 23, 2011
p.s. nutritional update
We left the feeding clinic in January with some changes to try in Toby's feeding plan. We returned yesterday for a consultation with a nurse practitioner who works with children on the waiting list for the intensive feeding therapy program. Toby has made significant progress in the last three months.
Under the supervision of his UM nutritionist, we have reduced his tube feedings several times so that he is now receiving only half as much formula that way as he was previously. We do all of his tube feeding in the evening and night so that during the day, he is totally dependent upon his oral intake. Together, these changes have greatly improved his appetite and willingness to interact with new foods. (Interact does not necessarily mean eat at this point; but even touching and handling new foods is progress.)
He has progressed from eating dry, uncooked pasta to eating cooked noodles.
He has progressed from eating thin, crip potato sticks to eating fresh, hot french fries. (Just this week! Hurray!)
He has progressed from eating the crispy edge of the pizza crust to eating most of a piece after removing the topping.
He has accepted small amounts of frozen yogurt.
He enjoyed trying to eat a smoked meat stick, although the texture turned out to be too chewy for him.
As before, his progress continues to be measured in small increments. And there are a lot of things he still needs to learn to eat- like fruits, vegetables, and meats! But his trajectory is definitely in the right direction and we are encouraged and deeply grateful.
Toby has lost weight in the last month or so. But his nutritionist feels that the gains in other areas justify continuing with the reduced tube feedings. This is great news. To have to increase them again would feel a bit like running part of a race and being told to go back to the starting line and keep running.
The nurse we met with yesterday feels that Toby is on the "cusp" of learning to eat well. They are going to continue to try to get outpatient therapy scheduled. Our hope continues to be that he progresses in the next year to the point that the inpatient intensive feeding therapy will be unnecessary.
Under the supervision of his UM nutritionist, we have reduced his tube feedings several times so that he is now receiving only half as much formula that way as he was previously. We do all of his tube feeding in the evening and night so that during the day, he is totally dependent upon his oral intake. Together, these changes have greatly improved his appetite and willingness to interact with new foods. (Interact does not necessarily mean eat at this point; but even touching and handling new foods is progress.)
He has progressed from eating dry, uncooked pasta to eating cooked noodles.
He has progressed from eating thin, crip potato sticks to eating fresh, hot french fries. (Just this week! Hurray!)
He has progressed from eating the crispy edge of the pizza crust to eating most of a piece after removing the topping.
He has accepted small amounts of frozen yogurt.
He enjoyed trying to eat a smoked meat stick, although the texture turned out to be too chewy for him.
As before, his progress continues to be measured in small increments. And there are a lot of things he still needs to learn to eat- like fruits, vegetables, and meats! But his trajectory is definitely in the right direction and we are encouraged and deeply grateful.
Toby has lost weight in the last month or so. But his nutritionist feels that the gains in other areas justify continuing with the reduced tube feedings. This is great news. To have to increase them again would feel a bit like running part of a race and being told to go back to the starting line and keep running.
The nurse we met with yesterday feels that Toby is on the "cusp" of learning to eat well. They are going to continue to try to get outpatient therapy scheduled. Our hope continues to be that he progresses in the next year to the point that the inpatient intensive feeding therapy will be unnecessary.
Thursday, April 21, 2011
Another month
Toby had several more appointments in the past few weeks.
The physical therapist said that what I thought was a lingering limp from an injury is just some poor or uneven muscle development in his legs. So nothing to worry about there. Chalk this one up to a mother's overactive imagination.
The allergist did a bit of testing:
Each spot marked received a prick. All the results are negative. However, this is the expected result until he is a bit older and has gone through more "seasons". Meanwhile, his symptoms continue to be treated. Toby now receives a steroid by nasal spray. He is still somewhat congested but finally able to breathe some through his nose.
(The allergist had formerly considered a career in the NICU and was quite familiar with the problems preemies face. He kept asking me about different complications Toby could have experienced and was quite impressed with how well Toby has done since his humble beginnings. Every thing he named reminded me of how gracious God has been and how much He deserves praise for how well Toby is doing.)
Last week, he had a pulmonary function test to generate some data for the doctors to work with. It was not done when he was younger because of some potential complications and this was the last chance to do it for a few more years. Toby was almost too big for the apparatus plus old enough that the specific anesthesia they use is sometimes ineffective. He can have the test again when he is old enough to cooperate, probably in about three years.
It was an interesting test and they were able to get some good data.
Toby was put to sleep and a mask was sealed onto his face. He received oxygen through this for the duration of the test.
The vest around his middle was sometimes used to force all the air out of his lungs.
And sometimes the box he was in was even closed up to measure displacement.
Overall, the results are good. His lung capacity is now normal. He has a few other problems not unexpected with his lung problems but nothing which requires a change in treatment.
Tomorrow, it is back to the feeding clinic doctor in Grand Rapids. I will save the nutritional update until after that.
Yesterday, he got his new glasses. The style selection was somewhat limited by other considerations; but it turns out, you just can't stop cute.
The physical therapist said that what I thought was a lingering limp from an injury is just some poor or uneven muscle development in his legs. So nothing to worry about there. Chalk this one up to a mother's overactive imagination.
The allergist did a bit of testing:
Each spot marked received a prick. All the results are negative. However, this is the expected result until he is a bit older and has gone through more "seasons". Meanwhile, his symptoms continue to be treated. Toby now receives a steroid by nasal spray. He is still somewhat congested but finally able to breathe some through his nose.
(The allergist had formerly considered a career in the NICU and was quite familiar with the problems preemies face. He kept asking me about different complications Toby could have experienced and was quite impressed with how well Toby has done since his humble beginnings. Every thing he named reminded me of how gracious God has been and how much He deserves praise for how well Toby is doing.)
Last week, he had a pulmonary function test to generate some data for the doctors to work with. It was not done when he was younger because of some potential complications and this was the last chance to do it for a few more years. Toby was almost too big for the apparatus plus old enough that the specific anesthesia they use is sometimes ineffective. He can have the test again when he is old enough to cooperate, probably in about three years.
It was an interesting test and they were able to get some good data.
And sometimes the box he was in was even closed up to measure displacement.
Overall, the results are good. His lung capacity is now normal. He has a few other problems not unexpected with his lung problems but nothing which requires a change in treatment.
Tomorrow, it is back to the feeding clinic doctor in Grand Rapids. I will save the nutritional update until after that.
Thursday, March 24, 2011
Testing, testing, . . .
It feels like a spring rush: 3 days, 6 medical visits, and still more on the calendar. But in brief-
Toby overcame his initial fears and tears after arriving in radiology for his swallow study and cooperated beautifully. It started with a couple normal x-rays. They were followed by a video study. Toby had to lie on a table, turning this way and that while drinking chalky, white liquid through a straw. I should think this would be a challenge even if you understood what they were doing, but Toby did a great job and they were able to get what they wanted. Afterwards, he saw the ear, nose, and throat doctors who said that the results looked good from their perspective. (The pulmonologists will also be looking at it.) They also decided that his swollen tonsils are not causing problems which would warrant a tonsillectomy. (Yay! No surgery.) Additionally, they stuck a camera up his nose to evaluate the structure, looking for any problems which might be causing his continued mouth breathing. All they found was congestion for which he has been given a referral to an allergist.
Toby's favorite visit of the day was with the physical therapist whose job it was to teach me "percussion and postural drainage" techniques. The pulmonologist wants us to know how to loosen the secretions in his lungs when he has respiratory illnesses to minimize the risk of complications such as pneumonia. I get to be the drummer and Toby gets to be the drum. Toby seemed to find it to be a really enjoyable massage.
And here is Toby with some of his friends at the U of M.
Next week, we are seeing a therapist who will evaluate the limp he has had for several months now. And we will be returning to Ann Arbor for the visit with the allergist.
Toby overcame his initial fears and tears after arriving in radiology for his swallow study and cooperated beautifully. It started with a couple normal x-rays. They were followed by a video study. Toby had to lie on a table, turning this way and that while drinking chalky, white liquid through a straw. I should think this would be a challenge even if you understood what they were doing, but Toby did a great job and they were able to get what they wanted. Afterwards, he saw the ear, nose, and throat doctors who said that the results looked good from their perspective. (The pulmonologists will also be looking at it.) They also decided that his swollen tonsils are not causing problems which would warrant a tonsillectomy. (Yay! No surgery.) Additionally, they stuck a camera up his nose to evaluate the structure, looking for any problems which might be causing his continued mouth breathing. All they found was congestion for which he has been given a referral to an allergist.
Toby's favorite visit of the day was with the physical therapist whose job it was to teach me "percussion and postural drainage" techniques. The pulmonologist wants us to know how to loosen the secretions in his lungs when he has respiratory illnesses to minimize the risk of complications such as pneumonia. I get to be the drummer and Toby gets to be the drum. Toby seemed to find it to be a really enjoyable massage.
And here is Toby with some of his friends at the U of M.
Next week, we are seeing a therapist who will evaluate the limp he has had for several months now. And we will be returning to Ann Arbor for the visit with the allergist.
Sunday, March 20, 2011
Toby had a check up with the opthalmologist and passed his vision test with flying colors. At a previous visit, he was given homework- pictures to learn to identify. This visit, he was tested, wearing his glasses and each eye separately, and correctly identified them all at decreasing sizes. Evidence that patching has been effective at strengthening the weaker eye- and that the corrective lenses are enabling him to see clearly! The staff could not have been more pleased.
He also made a somewhat unexpected visit to the U of M to meet his new pulmonologist. Several things have come from that visit.
Toby is having a swallow study done this week. This will screen both for any problems that may have contributed to his feeding difficulties and for any contributing factors to his respiratory status. (He still has a fast respiratory rate.)
He is also meeting with an Ear, Nose, and Throat doctor about his continually enlarged tonsils.
Next month, a pulmonary function test is scheduled and will hopefully provide some hard data about the status of his lungs and inform future treatment options.
Toby has switched from using a nebulizer for his twice daily breathing treatments (10 - 15 minutes of needing to sit still and keep a mask in place) to an inhaler with a spacer and mask (2 - 3 minutes total time and only about a minute with the mask). This has made every day this week much easier. Toby loves it- and so do we!
His nutritionist was very pleased with his growth since his last visit. We had decreased his tube feedings a couple weeks previous and rescheduled them to maximize daytime hunger. Toby has responded well to this and been motivated to eat more and to continue to try new tastes and textures. He has done so well that we were able to decrease his formula volume even further. He is now only receiving half of what he was three months ago! This is thrilling and a huge step down the road toward oral feedings. Even more thrilling is that he is becoming more and more open to trying new foods. Last night, he ate cooked pasta for the first time. He has enjoyed uncooked noodles for some time but had no interest in them once they ceased to be dry and crunchy. Hunger is truly a great motivator.
In addition to the UM visit this week, Toby will be seeing his pediatrician for his three year check up. So we are looking forward to a busy week and hopefully more good news to follow.
He also made a somewhat unexpected visit to the U of M to meet his new pulmonologist. Several things have come from that visit.
Toby is having a swallow study done this week. This will screen both for any problems that may have contributed to his feeding difficulties and for any contributing factors to his respiratory status. (He still has a fast respiratory rate.)
He is also meeting with an Ear, Nose, and Throat doctor about his continually enlarged tonsils.
Next month, a pulmonary function test is scheduled and will hopefully provide some hard data about the status of his lungs and inform future treatment options.
Toby has switched from using a nebulizer for his twice daily breathing treatments (10 - 15 minutes of needing to sit still and keep a mask in place) to an inhaler with a spacer and mask (2 - 3 minutes total time and only about a minute with the mask). This has made every day this week much easier. Toby loves it- and so do we!
His nutritionist was very pleased with his growth since his last visit. We had decreased his tube feedings a couple weeks previous and rescheduled them to maximize daytime hunger. Toby has responded well to this and been motivated to eat more and to continue to try new tastes and textures. He has done so well that we were able to decrease his formula volume even further. He is now only receiving half of what he was three months ago! This is thrilling and a huge step down the road toward oral feedings. Even more thrilling is that he is becoming more and more open to trying new foods. Last night, he ate cooked pasta for the first time. He has enjoyed uncooked noodles for some time but had no interest in them once they ceased to be dry and crunchy. Hunger is truly a great motivator.
In addition to the UM visit this week, Toby will be seeing his pediatrician for his three year check up. So we are looking forward to a busy week and hopefully more good news to follow.
Friday, March 11, 2011
Three!
A Day in the Life
or
What I Did on my Third Birthday
Heading for church:
Playing with the boys:
Snacktime (oreos come apart and go back together . . . but are not yet for eating.)
Cake number one- for Zeke:
Cake number two- for Toby:
Cutting the cake:
Serving the cake: (No, Toby did not eat any. But he did really enjoy the cake.)
Presents!
A quiet moment:
Relaxing backrub:
Tubing
and
Good Night!
or
What I Did on my Third Birthday
Heading for church:
Playing with the boys:
Snacktime (oreos come apart and go back together . . . but are not yet for eating.)
Cake number one- for Zeke:
Cake number two- for Toby:
Cutting the cake:
Serving the cake: (No, Toby did not eat any. But he did really enjoy the cake.)
Presents!
A quiet moment:
Relaxing backrub:
Tubing
and
Good Night!
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