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    Grateful Grateful Truly blessed and duly grateful

    3Sep/103

    Another way in which I’ve failed my child

    I'll post a summary of our short beach vacation with pictures soon, but in the meantime I wanted to share an email conversation I had with Eddie's Babies Can't Wait case worker.

    On Wednesday, I got the following email:

    Eddie's transition meeting with the [Retracted] County preschool program is: Thursday, September 9, 2010 @ 11:30 Location: [Retracted]

    (Eddie’s does not have to be at this meeting). You should be receiving a packet of information and directions from the Babies Can’t Wait office.

    My first reaction: Finally! An appointment to discuss the next steps in seeing if Eddie will quality for services through the school system once he turns three. I can't wait to go to this meeting.

    My second reaction: [Exploitative deleted]! I can't make that appointment. I will be missing work the morning of September 7 to transition to the new school and the afternoon of September 8 to take him in for a colon biopsy. I will be moderating usability test sessions all day on both the 9th and the 10th. I will have to reschedule this school meeting.

    So, I sent the following email:

    I am not able to make that meeting. I can't get away from the office on the 9th or 10th.

    Can it be rescheduled? Note that I will be out of town on business Sept 12-16.

    The email was a little short, but I was writing from my phone while on vacation. I (silly me) thought it wouldn't be a huge deal to reschedule.

    This is the response I got:

    The meeting are  prescheduled by the school system so I cannot rescheulde. The next meeting will be in October. Can your husband attend? The meeting is really important to ensure Eddie will start the preschool program after he turns 3 if he is eligible.

    My reaction to this one: Sobbing. The Babies Can't Wait lady just told me that I'm a horrible mother because I work and can't miss a chunk of time in the middle of a Thursday with one week's notice. Perhaps I overreacted, but did she really think that I didn't realize that this was "really important"? Shouldn't she have some idea how much working parents of kids with any kind of special needs have to balance their time between work and the countless doctor, therapy, and other appointments that their kid requires? That maybe showing up to work is important, too, so that I can keep the job that provides the insurance that (kind of) pays for all of those doctors appointments and therapies? UGH.

    Eddie's response when he saw me crying: "Mommy is crying. It's okay, Mommy." (pat, pat, pat) "It's okay, Mommy." (pat, pat, pat) "It's okay, Mommy." (pat pat pat) (repeat)

    I wrote back with the following (again, from my phone):

    I understand that this meeting is important, but it's also important I keep my job. I'm irritated by the assumption that we can be free in the middle of a work day with one week's notice - this may be fine for stay at home parents, but for anyone with a job, it's impossible. My job is usually pretty flexible, but a few times a month I moderate research sessions that would cost my company hundreds of dollars to reschedule.

    That said, I guess we'll have to go in October. Is there any way to know in advance when the appointment will be so I can be sure to be available?

    Still no response. Fingers crossed that we hear something in enough time that I can be sure to actually be available, because otherwise they may as well call child protective services on me for endangering my kid's future by having a job.

    27Aug/107

    Last day of school

    Eddie showing off his card from his friends at school

    Eddie showing off his card from his friends at 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.

    24Aug/101

    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.

    22Aug/104

    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.

    16Aug/104

    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.

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