overdue update

It's been a week already since Toby's second and latest visit to the developmental clinic.

Recommendations from the visit are:
continue with physical therapy (We were hoping to give this up now that he walks and crawls.)
speech therapy (We are still working through the insurance process to get this set up.)
occupational therapy for oral motor development since he also has low muscle tone in this area.

Additionally, the doctor was concerned about his weight. Toby had gained in the previous 2 weeks on the recently increased tube feedings and weighed in about 20 lbs 11 ounces. But since his height has increased quite a bit in the past months and his weight hasn't, they now describe him as "wasting". The nutritionist was called in again. There were also some closed door consultations down the hall with the pulmonologists, including his own. They have decided on a regimen of increased volume and also higher calorie formula.

We are working now on a new schedule at home to try to get it all in him comfortably and still allow him to experience enough hunger during the day to encourage "normal" eating. He has been much more open to trying new foods but still within limits.

We will return next month for a visit with the pulmonologist and meanwhile will be working on our current assignments.

Sign Language Vocabulary- A List

In no particular order-

help
ball
milk
water
cracker
cookie
drink
thirsty
chocolate
candy
apple
baby
cat
dog
horse
more
please
no
up
down
hat
book
music
zumgali (a favorite song)
car
bye-bye
swing
hug
shoes
socks
glasses
bear
all done
draw
cheese
flower
eat
light
yes
thank you
cold
dance
bath
fish
monkey

Summary

Toby is taking a breather this week after appointments 4 of 5 days last week. This is a good chance to celebrate where we are and recap.

Monday last he got his new button back in place. This took only a few pain-free minutes compared to the 7 hours of what doubtless seemed to him like "torture" he had endured at the ER on Saturday. I should perhaps explain that the difficulty had been caused not by him pulling the button out (he does that occasionally and I pop it back in) but by him doing it secretly in the night. The hole in his stomach quickly began to heal. (Isn't the human body amazing!) So when I went to give him his morning meds Saturday, I had one of those horrible moments every mother dreads: "Oh, no. There isn't a hole in my son's belly." The ER staff were also not able to replace the button. It ended up involving a surgeon, iv sedation, and progressive dilation with metal probes. They settled for a smaller temporary tube, waited a couple days for the swelling to go down, and voila- made it look so easy on Monday.

Tuesday, Toby had a Bayley Developmental Assessment. He did very well. They looked again at gross motor, fine motor, receptive language, expressive language, and problem solving. Using his adjusted age of 18 months, he actually scored in the normal range for all of these. His strength continues to be fine motor skills in which he placed above the norm for his NON- adjusted age of 22 months.
Here is the comparison of the results for the test in November and for the current one:
gross motor: 10 months previous, now 12 months
fine motor: 17 months and 23 months
receptive language: 11 months and 19 months
expressive language: 14 months and 16 months (This is based only on vocalizations and does not consider his sign language skills.)
problem solving: 13 months and 16 months

A couple doctors have now described him with the word "persistent".

So it was all good news and a happy day. We also spent some time with his nutritionist discussing his lack of weight gain as he has remained the same weight (just over 21 pounds) for several months. She recommended that we increase his tube feedings but was also pleased with his general appearance and health.

Wednesday he showed his physical therapist his new crawling skills. Toby started out crawling for applause but is getting better at it and now sometimes prefers it to scooting. He also continues to practice walking and is noticeably steadier.

Thursday was a speech assessment by the specialist at UM. She does recommend therapy and we are still working on the paperwork to get that done here in Hillsdale. She was very helpful with suggestions for ways we can encourage his language development.

So the new year has begun with many affirmations of Toby's progress and much evidence of God's mercy and goodness.