"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.