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.

 

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.

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. 

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.

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.

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.