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.

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.

Toby's life has shown me three ways I have been blind.

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.

So thank you, Lord, again, for the gift that is Toby. May his life continue to bear witness to the Light.

(Happy Birthday, Zeke)

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:

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.