Last day of school
Yesterday was Eddie's last day at his current daycare. He'd been going there since just after his first birthday, and it was bittersweet to leave. On one hand, the very small, church-run school was very friendly and loving. Everyone in that building - from the teachers and staff to the kids in all of the classroom - knew Eddie by name. There was no doubt that they loved him.
On the other hand, I've had concerns about how slow they've been to promote him to the next room since the very beginning. I had to push to have him moved up to the next classroom, even when he was months behind when his peers were being moved. For example, the classroom he left is for kids up to 26 months, and he's almost 32 months. They were always hesitant to move him because of his size and some of his delays, but the fact of the matter is that he's never going to be the size as other kids his age, and what is most going to encourage him to catch up in motor and emotional skills is being among his same-age peers. Also, within the past six months or so, it's become clear that he's intellectuality ready to move on, and so I just couldn't continue to keep him in a place that wouldn't push him without me pushing them.
I've been researching and touring several schools over the past year or so, looking for a good fit. The most important thing was for me to find a school that would allow him to advance (dare I say?) "educationally" despite some of his other delays. I visited one school last winter that was supposed to be all about inclusion but told me that it'd probably be best that the other parents didn't know about Eddie's differences. I began thinking that a Montessori program, with its' multiple-age classes, would be a good option, but I didn't find one I liked.
In desperation, I went back to a school that I had fallen in love with when Eddie was 6 weeks old and I was first looking for a daycare. At that time, I loved everything about the place, but couldn't afford (or justify) the cost. Clearly, a lot has changed since Eddie was a newborn. I had no idea if this place would meet our current needs.
Once we got there, it was clear that it does. This is a school that has experience with different levels of special needs, and works with those needs. (These were, of course, never things I even thought to ask about back in the day.) The teachers were really, really sweet, and the kids seemed really, really happy. Eddie loved the playground and the birds and the fish. The lesson plans are directed by what the kids are interested in, and there is a combination of planned and self-directed learning. They leave detailed notes at the end of each day about what your kid did, in addition to notes about what the entire class did. They keep binders for each kid to track their progress.
We talked about placement, and he would be placed in the 2-year-old room. However, they said that based on his language and behavior during the tour, they would likely promote him to the preschool room (3-year-olds) in November. I said that even January would be fine, if that ends up being best, but that I didn't want him to be held back for months after other kids his age. The thing is, they'll promote him when he's intellectually ready to be in that room, not when he's able to jump or weighs 30 pounds or even is potty trained.
The potty training issue has been a big one. I toured schools who were absolutely shocked that Eddie wasn't potty trained by 2 and a half. At every school I spoke with, it was a requirement for kids to be potty trained in order to enter the 3-year-old room. I understand having these rules, but I really appreciated what the new school had to say on that: Some kids will never be able to be potty trained, but they're not going to keep them in the 2-year-old room forever. Eddie's colon issues keep putting a stop to us trying to train. Even just trying to "pee-train" him seems silly if he's going to spend a week in the hospital within the next month or two. So we wait, and hopefully will be able to show some progress on that front by the time he's 3. But with the constipation, I think it's a pipe dream to think that potty training will be anywhere close to complete by then.
And if we had to wait until he weighed 30 pounds, it'd be another two or more years at the rate he's going.
Anyway, that's where we are with the school situation. Fingers crossed that it's as good of a fit as I think it is.
And the picture? That's Eddie with his "Thomas card" that his classroom made him. He's also wearing his new "boots," but I 'll have to share that story in another post as this one has gotten way, way longer than I expected.
Jumping and catching and stuff
This afternoon, Eddie was re-evaluated by his physical therapist. Some 10 months ago, she told us to come back in if he wasn't jumping by spring. Now that we're ending summer and he's still not jumping, I figured it was time.
No real surprises in the results of the evaluation. His gross motor skills are more delayed for his age than they were 10 months ago. There are three areas of gross motor that he's scored on (I, of course, don't remember what they are), and of those, he scored at an age of 18 months on one and 21 months on the other two. His major deficits were in jumping (he doesn't), catching (also no), and throwing (he only throws underhand). Most of his delays are due more to spacial planning than low tone, which is a change.
So, we're going to start with bi-weekly PT, which will fill the gap created by decreasing OT to every other week. On a vaguely related note, I've decided to pull him out of private feeding therapy all together, so he'll just continue to have speech & feeding once a week at school.
Now, a funny story:
We were at my dad's warehouse after the PT appointment so that I could work while Nonna watched Eddie. Towards the end of the evening, he came in to Nonna and said, "I don't want to go to peace time." Nonna, of course, told him he wasn't going to peace time because he hadn't done anything wrong. I knew better.
Me: Eddie, did you do something naughty?
Eddie: Zes.
Me: What did you do?
Eddie: I painted it.
Me: What did you paint?
Eddie: I painted the chair.
Me: Show me.
Eddie lead me to the chair, where he had rubbed an eraser on the leather.
I had him "clean up" and apologize to Grandpa. Maybe he will have learned not to fess up so easily.
Here we go again
Two weeks ago, I was mighty happy about where Eddie was on the health front. He was doing "exceptionally well" according to the developmental pediatrician. We were starting to scale back on therapies. He's talking in 49 word sentences*.
Then we went to the regular 3 month check with the pediatric gastroenterologist. (Usually we call him the "GI doc," or "Dr. Patel," but gastroenterologist is such a cool word.)
The first thing he said when he walked into the room? "What happened to his weight?!?" Eddie is back off the charts at 24 pounds, 6 ounces.
Then we got into the whole pooing issue. I haven't written about it much here, figuring that no one wants to hear about poo. But now that it's become an issue, I guess I'll talk. The long and short of it is that for the last 2+ years, the kid has been constipated an average of 5 days a week. After having a very, very upsetting (screaming, crying, etc.) poo or two, we go to the total opposite of constipation for a few days before starting the cycle again. We are the type of people who keep a stock of pediatric enemas because you never know when you'll need to break one out.
I guess that's not normal.
He has been on Miralax since the summer of '08, and on Milk of Magnesia since the summer of '09. He takes both daily. The dosages have been increased a few times, and he does better for a little while before just going back to the constipation.
So, now he's gotten old enough and it's gotten persistent enough to look a little more closely at what's going on. First, the GI doc sent him in for a barium enema to see if his colon looked to be misshapen in any way. That was done last Monday, and actually wasn't as difficult as I had feared. Pop came with me and Eddie, and the whole test only lasted 30 minutes or so. The best part was that instead of using barium, they used something else that basically cleaned him out instead of plugging him up like barium would have done.
That test came back normal, which is good news in that his colon is normally shaped (yay?), but bad news in that it doesn't give us a direction to go in for treatment.
The next thing we have lined up is a colon biopsy on September 8. Eddie will go in to day surgery at Children's Healthcare of Atlanta (it's sad when you can tell the nurse you don't need directions, that you've been many times before) for a very quick suction sample of his colon. No anesthesia will be involved, and he won't feel pain, but there will be bleeding so we'll be there a good part of the day just to be sure that there are no complications.
With the biopsy, what GI doc is looking for is proof of Hirschsprung's Disease (HD), which he seems to think is the most likely cause of Eddie's problems. Hirschsprung's is when the a portion of the colon is lacking nerve cells that tell the baby to poo. Generally in HD, the barium enema would have shown some abnormality, which we didn't see, but the biopsy is the only way to confirm or rule out the HD diagnosis.
If the GI doc's prediction of HD is right, the only cure is surgery. And, sadly, this wouldn't be a day surgery. We'd be looking at "3 to 7 days or more" in the hospital, all depending on how the surgery and recovery goes. This is a very scary thought, but if that would mean that this problem is gone, it'd be a bit of a relief as well.
Now all we can do is wait for the biopsy results, which should be in a few days after the test. If the biopsy comes back normal, the GI doc was very clear that even if the barium enema and biopsy come back normal, we will still need to figure out a new treatment to more aggressively deal with the constipation. I'm still not clear on what this could be, but I guess we may find out.
* Probably an exaggeration.
Grateful
Welcome to the new blog! I've been wanting to move things over here for some time now, and am just now getting around to doing it. Please note the new URL (www.grateful-grateful.com). A few administrative things may change on old posts, but for the most part, the transition over here was pretty seamless!
The inspiration for the name of this blog came from the book Grateful: A Song of Giving Thanks, which uses the words from John Bucchino's song and illustrations by Anna-liisa Hakkarainen. I bought this book for Eddie before he was born and discovered it on the bookshelf sometime last year. Since then, we've read it a few times a week, to the point where Eddie has the chorus memorized. This book has given me great comfort, especially last year when a lot of less-than-stellar things happened. It really expresses a lot of what I feel about our lives.
So before I move forward with this new space, I'd like to christen this blog with the song lyrics. If you'd like to buy this book for yourself or as a gift, the link will always be over there in the right column.
Grateful
John Bucchino
I've got a roof over my head
I've got a warm place to sleep
Some nights I lie awake counting gifts
Instead of counting sheep
I've got a heart that can hold love
I've got a mind that can think
There may be times when I lose the light
And let my spirits sink
But I can't stay depressed
When I remember how I'm blessed
Grateful, grateful
Truly grateful I am
Grateful, grateful
Truly blessed
And duly grateful
In a city of strangers
I got a family of friends
No matter what rocks and brambles fill the way
I know that they will stay until the end
I feel a hand holding my hand
It's not a hand you can see
But on the road to the promised land
This hand will shepherd me
Through delight and despair
Holding tight and always there
Grateful, grateful
Truly grateful I am
Grateful, grateful
Truly blessed
And duly grateful
It's not that I don't want a lot
Or hope for more, or dream of more
But giving thanks for what I've got
Makes me happier than keeping score
In a world that can bring pain
I will still take each chance
For I believe that whatever the terrain
Our feet can learn to dance
Whatever stone life may sling
We can moan or we can sing
Grateful, grateful
Truly grateful I am
Grateful, grateful
Truly blessed
And duly grateful
Truly blessed
And duly grateful.
