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.