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.

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.

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!

Feeding Clinic

In January, Toby made his first visit to the feeding clinic in Grand Rapids.  He had an initial evaluation by the team including an occupational therapist, a neurodevelopmental pediatrician and the pediatric psychologist who started and heads the program there.  Their recommendations include::

-twice weekly outpatient feeding therapy to strengthen oral musculature and acceptance of broader range of food.  This has not begun yet.

- an evaluation by an ear, nose, and throat doctor to make sure the enlarged tonsils they noted (which have also been mentioned by pulmonary) are not interfering with his ability to eat.  We are currently waiting for a referral from Toby's pediatrician which will not happen until after his annual check up.  So nothing until next month at least.

-placement on the waiting list for outpatient therapy at the clinic there.  This is an intensive 8 week program.  It requires participation all day for 5 days a week so is a major commitment.  The current waiting list is 15 - 18 months.

- parent directed therapeutic feeding sessions at home 3 times a day with both preferred and non-preferred foods.

- return visits to the feeding clinic's pediatrician every 3 months.

The latest greatest news is that our current insurance is now accepted at the U of M so we should be able to return to receiving most of his care under one umbrella.  We are rejoicing both because of the convenience and because of the superior care Toby has received there.  The saddest news is that his pulmonary doctor has left (for the green grass of Toledo) and his care will be shifting to another team member at the U of M.  We are not sure who yet, but have met most of them during Toby's hospitalizations.  And it looks like he gets to keep his current pulmonary nurse who is a literal treasure and a key part of his medical team. So, hurray and thank you, God.

We are also excited because Toby has made what we consider to be significant progress in the last month or so with trying new foods and textures.  He is now eating soft cookies.  He bit a piece of bread once.  He is eating crunchy  pizza crust.  He now will eat "potato sticks" (in this case, oven baked thin french fries) with gusto and in quantity.  He ate part of a Rice Krispy treat at Grandma's.  These are all foods which are a step away from the exclusively dry and crunchy foods he limited himself to previously and involve new textures and new tastes.   Additionally, he sometimes eats dried fruit.  (He prefers his raisins covered in chocolate, but then again, who doesn't?)  And several times now, he has enjoyed - yes, ENJOYED, simple frozen fruit smoothies through a straw.  Some of these things qualify as real food and could conceivably be part of a healthy, oral diet.   All of them are steps in the right direction.

In the past week, we have reduced the volume of his tube feedings and moved them all to the evening and night hours.  The doctors in Grand Rapids felt that he weighs more than enough for his height and this gives us leeway to be a bit bolder about enlisting hunger to work with us.  We have a new schedule for meals and snacks incorporating suggestions from the feeding clinic as well as from additional research.    Toby's 2 year old nephew has also joined the household and is providing peer influence.  As I mentioned, we are excited about the progress he is making.  We know now not to expect any instant turn arounds but also not to underestimate the power of baby steps.