Toby made a return visit to pulmonary at the UM last week.  They are pleased with his growth and progress.  It is possible the new year will include some new test to more accurately measure lung function, but for now we are just enjoying the month of December and all the fun that brings.

Toby will be trekking to Grand Rapids on January 20th for an evaluation at the feeding clinic there.  It is the only clinic of its kind in the state and one of the few in the country.  We are excited about the possibility of more progress toward all oral feeding and no g-tube.  The clinic will offer their recommendations that day which could include either an intensive program or less frequent therapies.  We are looking to God for the outcome and for wisdom since Grand Rapids is quite a commute.

 Merry Christmas!

Fall Fun

Outside, leaves are falling and cold winds blowing.  Inside, we are enjoying days of continued growth and the warmth of little boy laughter.

Toby had a return visit to the U of M which included both pulmonary and nutrition.  His growth was good enough to earn him a slight reduction in the daily tube feedings.  He has also made progress with the variety of foods he will eat.  He now eats a selection of crackers, cereal, and chips, peanuts, cashews,  freeze-dried yogurt, and candy: chocolate chips, m & m's, Hershey bars, candy corn, fruit snacks, Kit Kats,  Pez, candy canes, etc.  (He has not eaten any more cookies.)    If you're thinking this doesn't sound like a healthy diet, you agree with his nutritionist.  We are awaiting a referral to a feeding program in Grand Rapids.  But we are encouraged by the developing openness he has to trying new tastes and textures (albeit within limits).  He is also interacting more with other foods and learning to touch and handle them, a necessary step before he will put them in his mouth. 

Toby has grown in so many ways besides the physical.  He speaks in sentences now and has effectively put to rest any continued concerns about delayed language development.  He fills his days with books, toys (trucks!), and inserting himself into whatever any one else is trying to do.  And he is a force not easily ignored.

I have wanted to share more recent photos with you, but getting them has been a challenge.  When I try to take his picture, he puts his little hands up and clicks an imaginary camera back at me.  Like so:

And thus:

As is often the case, though, his sisters have had success where I did not.  Here he is helping clean up the leaves in the yard

and visiting the playground.

Yes, he graduated this week to the "big boy swing".
And we are enjoying him as much as it looks like he is enjoying that swing.
Wheeee!

Speech Assessment Results

Toby's language skills were assessed in a series of visits during July to Western Michigan's clinic in Kalamazoo.  His score for expressive language was 1 year 11 months- or just slightly below his adjusted age at that point of 2 years.  They felt this was appropriate considering his medical history.  His receptive, or comprehension, was higher at 2 years, 3 months and he was not tested to his "ceiling" on this portion.  So the overall good news is that his language skills ARE developing appropriately.  It was suggested that he might benefit from therapy or that we could just allow him to keep chugging down this track since he is moving so well in the proper direction. 

We chose the latter option.  And in the past couple months, Toby has continued the forward progress in his expressive language.  That's a fancy way of saying he talks more and more.  He is not shy about telling us what he wants.  He also has been using complete sentences and referring to himself in the third person.  Some of his favorite things to say?  "Toby did  it", and also, unfortunately, "Toby broke it."

There continues to be evidence of low muscle tone in his face.  That's a fancy way of saying he drools quite a bit for a gentleman of his age.   But it is a definite plus in the praise column that it is not a major concern at this point. Yay!

!!!!!!!!!!

Toby ate half a peanut butter & honey cookie.

Toby has had visits with the pulmonologist and nutritionist at UM and with the speech therapist in Kalamazoo.

Pulmonology:
He continues to do well and the decision was made to try again to wean him off the diuretics.  We are using a step down process for the two meds so that he will soon be on half doses of each.  So far, so good- but I remember that last time the problems did not show up until after a number of weeks, so I know we must reserve judgement.

Nutritionist:
Toby's weight gain is average for his age.  She was very pleased with his three day diary and the number of calories he took in orally.  (Hooray for high-calorie chocolate!)  However, she is still pursuing the ever elusive catch-up growth.  Some of us think that based on his siblings' history, this is as good as it gets.  Regardless, we are trying a higher-calorie formula mix and also playing with the tube feeding schedule to encourage more oral intake during the day.  ("Return of the Late Night Feedings"- hope this show doesn't have a long run!)

Speech:
The assessment continues with one more weekly visit scheduled.  They have been working through a "listening" test which consists of interactions with pictures and performing tasks in response to oral directions.  (Unofficially, I have been told that he just passed a segment for 3 - 3 1/2 year olds and they are not very worried about him.  Thank you, Lord!)  They are also recording and analyzing his speech production.  This is the area from which I have been more interested in getting the results.  Toby is more and more verbal at home and all seems well in the language acquisition department.  The question is whether or not the low muscle tone in his mouth is interfering significantly with his ability to make basic sounds and - if it is- if he would benefit from extra support in this area.


MOSTLY, though, what we are spending our days dealing with is this:  a two year old (in every sense of the phrase) with lots of energy and a very short attention span- which adds up to a little boy who seems to be everywhere and into everything.  "No touch", he says as he does just the opposite.  Our house often looks like a little tornado just went through and you can definitely see where it touched down!

Toby . . .

Toby with all his siblings and nephew, Sam . . .

"Tick Tock Tick Tock

Ears. Our ears.  They hear a clock." *
And yet somehow they failed to hear the passing of so many days.  We may need a calendar to write this post since this update has been so long in coming.  But we will have a go.

One thing we have been doing is reading lots of books.  Toby loves them and if you are sitting down you are a target likely to attract a little boy with book in hand.  His favorites change from time to time.  This week it is all things Pooh though we have also enjoyed a wide range of the best literary authors such as Boynton and The Doctor.  Seuss, that is. 

To recap medically, though-

Around the end of May, Toby saw his eye doctor.  She thought he was doing well and reduced his patching regimen to every other day.


He also had his first visit with the new team in Kalamazoo.  At the Cleft Palette Clinic.  This caused some confusion for some of the staff there.  Let me just say that they do things very differently over there.  Evidently we were assigned to that clinic because it is the only one which had all the specialists he needed to meet.  And meet them he did though it involved some strange system of lurking in hallways watching for open doors and solitary doctors. It also turns out that the building is on Western's campus and is shared by both Michigan State and Western.  The clinic is officially in State territory with some Western staff invited down for the day.  Check your colors at the door.

Audiology (WMU)  verified that he does not have an ongoing problem with fluid in his ears (which was a question at his last hearing test) and suggest a hearing test in a few months.

Speech (WMU)  invited him back for an assessment last week.  Today they called and invited him for several weekly assessments later in July.  So far, they have had a good demonstration of his ability to hold his tongue with an encore of whispering.  The goal is still an accurate picture of where he is and whether or not he would benefit from intervention at this point.  (The home team thinks that his language development is progressing well but is not sure if his sound production is where it should be.)

The developmental doctor (MSU) and therapist (MSU) and dietician (MSU) were also seen.  About a month after the visit, we did receive a written report which said he may be cognitively delayed (???- referenced his lack of talking during the exam)  and an invitation to return in November. 

So there you have it.  And perhaps an understanding of why this update has been so long in coming.  There's been a whole lot of nothing going on.

In a couple weeks, it is back to the "mazin' blue for pulmonary.  Meanwhile, we will pray for hearts of wisdom as we retrieve the child from off the table (He can climb now!) and number the days with thanks to God for each of them.

Tick tock.  Tick tock.



*from The Ear Book by Al Perkins

Blue Water

With the coming of summer, Toby has been exposed to the joys of the community pool. There was some debate over whether a boy who screamed every time he was forced to take a bath would react well to an even larger body of water.

He loves it.

He can't get enough of the "blue water" and watches the girls leave the house suspiciously, suspecting that they are leaving him behind.

Toby splashes in the water and shrieks with joy at each new wave and spattering. Bounce him up and down and he demands more. There is no fear or trepidation, only delight. It's summer love.

Pulmonary

Yesterday was the trek to the pediatric pulmonary clinic at the U of M.  Yes, it's a familiar path and yet this time it was lined with freshly sprouted gratitude as we celebrated being able to continue with our favorite docs there. 

This was Toby's first return visit since coming off the oxygen in February.  His nutritionist also stopped by for a visit.  Overall, everyone there seemed satisfied both with his growth and with his pulmonary status.  He continues to have slight symptoms of some sort of allergy or asthma despite being on meds so they are switching one of his prescriptions to see if that can be better controlled.  Otherwise, things are looking good and we will continue the status quo for his other meds and breathing treatments.

We did stop by radiology for some x-rays.  He was strapped in a little seat this time instead of having to straddle a saddle (hooray for being bigger!) before his arms were strapped up and the chin strap applied.  I am officially granting him a bravery award for this one.  He was so good and cooperative with just one little face pucker and three tears when swiveled sideways for the second shot.  What a little man he's become.

red trucks and other joys

I start to say "the past few weeks" and realize it is almost two months now.  Our medical insurance changed on March 1st and we have been working off and on to figure out what that means for Toby.  Initially, we were told that he would have to transfer all of his care from the medical team at the U of M in Ann Arbor to Bronson in Kalamazoo  (Yes, it's MSU.)    (He is still able to keep the same pediatrician and eye doctor in Hillsdale, for which we are thankful.)  His pulmonologist did not think it was a good idea to change horses midstream so after we thought all appeals were null, some better heads got together at the U of M.  And now we have approval from the new insurance company, at least temporarily, to continue with pulmonology at the U of M.  So it looks like we will have a foot in each camp for a while.  We will just have to remember to wear the correct color shirts on the correct days.  Yesterday, we met the new surgeon in Kalamazoo who is now in charge of the hole in his belly.  Next month, he is scheduled to visit the new developmental clinic.  The end of the story hasn't been written yet.  There are still some paperwork headaches.  But we are praising God for intervening and allowing Toby to continue with the doctor and nurses who have brought him so far and know him so well.

And today brought more smiles.  Dad had a local delivery and Toby got to meet the big red truck.  A thrill for any boy and Toby has not stopped talking about it yet. 

Buzzed

Easter Eggs

Toby enjoyed dyeing Easter eggs with his sisters today. Originally we had thought he would just enjoy watching, but he soon joined in the fun and figured out a few simple steps with excellent results.

First, egg wrestling. It's important to balance the egg correctly on the dipper.

Second, you leave the egg in the dye for at least three seconds.

Ta-da! It's a beautiful egg! What a surprise.

Repeat above steps as often as desired, or until there are no more eggs.

Don't worry too much about your egg while it is submerged.

It'll come out all right in the end.

The Button Story

The small boy stood in the middle of the living room floor, the toes on his one bare foot curling and uncurling against the wood. He signed, "Help."

No one had any idea what he wanted help doing. So they asked, "Show us what you want help with."

Toby lifted his shirt and revealed a rounded belly that shockingly lacked the button for his g-tube. He then pointed at the floor a couple of feet away where lay the missing button.

Naturally, a few minutes of excitement ensued until the button was safely back where it belonged.

There's nothing like a happy ending.

Birthday photos- March 6, 2010

Zeke's 25th . . .




and Toby's 2nd . . .



Who do you think got the better toys?

By the numbers:

Yesterday was Toby's official 2 year checkup. He weighed in at 23 pounds, which got me thinking about numbers.

birth weight- 1 lb 13 oz
length- 12 1/4 inches

1 year- 16 lbs 2 oz (8 X birth weight)
height- 25 inches

2 year- 23 lbs (12 X birth weight)
height- 32 inches

First year- 3 surgeries
Second year- 1 minor surgical procedure

First year- 6 hospital stays for a total of 123 days
Second year- 1 overnight hospital stay


First year- 61 days on the ventilator
304 days on oxygen

Second year- 349 days on oxygen
16 days on room air



I like the direction these numbers are going . . .


.

Happy Birthday! 2 years of answered prayers-

"Happy Birthday to you. Happy Birthday to you. . ."

10 voices are raised in song as the cake is carried in with 2 candles blazing brightly. Toby smiles and blows repeatedly. The flames flicker and flare back up. A puff from across the table helps him out and Toby joins the clapping and cheering. Grasping the knife firmly, he pokes the smiling monkey face repeatedly but refuses a taste. Soon he is down and walking confidently off in search of more adventures.

It's impossible not to let my mind wander back over the past two years.

Just a few weeks ago, Toby signed "all done" to the newly quieted oxygen concentrator and began roaming the house tether free.

Only three months ago, we were still wondering when he would finally get walking figured out.

A year ago, we were finishing a looong winter punctuated by frequent hospital stays.

And two years ago?

Two years ago, we heard Toby's first cry followed by two months of silence as he was quickly intubated and put on the ventilator.

Two years ago, we visited the NICU for the first of hundreds of visits, gazing in awe and grief at tiny perfection.

Two years ago, we began the journey of hope down the unimaginable path that brought us to this celebration today.

In the NICU, we were told that most preemies "catch up" by the time they're two years old. Today, I find that I don't even wonder any more if that's true or when it will be true for Toby. He has overcome a lot of challenges. And he still has more challenges ahead- challenges he would never have faced if he were not a preemie. He has scars which are everyday reminders. He has medication schedules, therapies, and cute little glasses- not to mention a hole in his belly. But that's ok. He's just Toby, following the path that God had planned for him before the foundations of the world.

And good things are ahead.

"I know that you can do all things:
no plan of yours can be thwarted."
Job 42:2

Graduation Day

Before:


After:



Yes, that cute little face is now cannula free!
Toby saw his pulmonologist today. He slept the last two nights in "room air" while on the monitor and did a great job of maintaining his blood oxygen level. (96!) He was checked over today and pronounced ready to come off the oxygen.

No more oxygen. No more cannulas. No more sticky dots on his face. No more tubing. No more tethers. No more concentrator humming. No more tanks to haul around. No more monitor.

Toby is already enjoying his new freedom.

And we are giving thanks to Him in whose "hand is the life of every living thing
and the breath of all mankind." (Job 12:10)

Happy Valentine's Day

weight gain

Toby's new weight is 21 lbs. and 2 ounces. This is a half a pound increase in the past three weeks. This is far more than he had gained in the previous three months, so it is safe to say that the new formula regime is working.

He visited the occupational therapist today and completely refused to do anything she asked him to do. He would not like to drink out of the water cup; he would much rather dump the water onto the table and splash it around a little bit. Just about the only trick he showed her was how he could drag his oxygen tank around behind him whenever he wanted to go somewhere.

That's all of the appointments for this week. Next week: more occupational therapy plus the pulmonary doctor.

Photos

sleeping . . .



playing . . .



laughing . . .

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.