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Wednesday, April 20, 2011

What this post isn't about

I'm reeeeeally trying to focus on the positive here, so let me begin by telling you what this post WON'T be about:

I won't be talking about how I've had to stop the (now dubbed) "drug from hell" because of a horrific rash that has sprouted up over most of my body.

And I won't tell you that even though I stopped the drug three days ago, the rash remains and the itching is driving me insane.

And you won't hear me bitch about how there isn't anything I can do to combat the itching because the only thing I can take (benedryl) could dry up what's left of my milk.

You certainly won't hear about how I even agreed to getting a cortisone shot in my ass to try to get some relief.

And I won't share how it didn't even help and all I was left with was a pain in my ass.

And I'll try to keep quiet about the appointment we had with a speech therapist for Mattias yesterday. And how quick she was to dx him with Sensory Integration Disorder based on some very preliminary testing. Or how my Mommy Radar is screaming, "bullshit" so loud and so clear about this stupid dx that I want to drive back to the hospital and slap this stupid therapist for adding one more log to the pile o' crap that has because my life lately.

That last one deserves a post of it's own.

I'm not going to tell you that as we were driving home from the appointment yesterday, some bad weather was approaching, and all I wanted was to get the kids inside before the hail hit. Of course, about 30 seconds before we get home, hail the size of quarters starts pelting our car.

And I'll shut up about how, when we got home, I needed to nurse Mattias because he was starving. And wouldn't you know it, the bloody tornado sirens started going off.

Instead I'll tell you that we met with Elise's pre-school teacher yesterday for a progress report and as well as saying Elise was "a little ray of sunshine", the teacher raved about how well Elise is doing. Even though she's in with older kids, she is holding her own and even excelling. I loved hearing that her sweet, helpful personality continues when I'm not watching, and that she has made many friends at her school.

I, too, am blown away by how she has blossomed.

And as an added bonus, I'll throw in this pretty picture of the dexcom from a few nights ago... 12 hours off flat-lined bliss.




***It was brought to my attention that sometimes I sound like I'm going off the deep end when I write these rant-like posts. And though I may be touched in the head, I mostly write these posts to get it off my chest, as well as make you laugh about the craziness that is my life. I try to write these with a sense of humour and hope it comes across that way.

Until the next crisis, my friends!

20 comments:

  1. You do NOT sound as though you're going off the deep end! Anybody going through this stuff would be going bonkers! You sound normal to me!!!! You sound like an awesome mother to me!!!! I totally get your humor, and as your friend, I like reading your posts and knowing what's going on with you and your sweet kids.

    Be proud of Elise! She's a special girl! I suspect the future holds many more glowing reports like that! :)

    That IS a pretty CGM picture indeed!

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  2. Then I will not comment abuot any of the not-so-fabulous happenings! Except to say your perserverance with breastfeeding is admirable to the Nth degree. And, I won't comment about Dr. Quack-a-Knack. Except to say he sounds like a brazil nut ;)

    Here's the rub . . if you were NOT coming here to write about your frustrations we would all KNOW you had gone off teh deep end and needed rescue.

    As far as the humour (see, I can spell Canadian, too) it could use some impovement. Like including fairies and monsters and flying cows. But that's just my humble opinion ;)

    Ah, heck. You know I love how you write, my friend! Keep it coming!!! We can handle it!!! Really!!!!! (need less coffee)

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  3. No, your posts are usually informnative and humorous. After a SOLID MONTH from hell, you are certainly entitled to vent. Hope spring comes soon, literally and figuratively. Glad to hear things are going so well with Elise in school and on the D front. That's at least a ray of sunshine for you right there. Hope you are feeling better soon and catching up on your sleep whenever possible.

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  4. How many of us write our blogs when we're feeling like we're going off the deep-end? Seriously, that's what blogs are for, isn't it? So we can write it all down and bring ourselves back to the shallow end where we can cope with everything for a little bit longer? Personally, I think you sound a whole lot more sane than I do. The DOC can handle anything you want to bring!

    Elise sounds fantastic! Sure you don't want to consider moving back towards Canada a little bit? You could come be our neighbor!

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  5. First of all, I need to give a shout out to Amy's post above me and her abilities to "spell Canadian"...LOLOL!! LOVE IT! Secondly, I agree...I am glad you are able to post on here to get those things off your chest. I was actually thinking about ya the other day and starting to become a little worried because I hadn't seen a new post from you in a while. So, please continue to vent!! :o) Lastly, that is AWESOME about Elise at school! What a fabulous girl you have there!!

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  6. If YOUR going off the deep end... I am sure to be there jumping with you. I think your funny!! Does that count?

    I didn't know a speech therapist could dx a sensory disorder(??)... I would personally leave that up to a neurologist to decide. But I am a little bitchy like that :)

    If you slap her... get it on tape- okay? I wanna see!!
    OR you could make a video of you slapping her... thats almost like the real thing.

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  7. Yeah, I'm with Lora. Sensory integration should not be dx by a speech therapist. Occupational therapist, yes. They typically specialize in that.

    Try not to worry about her saying that. I worked in Early Intervention (birth-3) for years and that term gets thrown around kind of loosely. It can just mean that they have some sensory issues. The thing is that when you look online they typically describe the most severe textbook cases and not many children fall into that category.

    Everybody has some kind of sensory preferences or likes/dislikes...not liking lotion on skin or tags in shirts or mushy textures. SI is just an amplification of those things. Even if he were to really have a serious case of it, an occupational therapist can help you work through those things and come up with coping plans for them.

    You have had some seriously crappy goings on. I am so sorry! I hope that things mellow out for you and soon.

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  8. I don't think there's any room left in the deep end, so you can't possible fall off into it!! ;)
    I am totally impressed that the speech therapist isn't in a room in said hospital. You would have totally been able to pull an insanity plea with all the shit that's been hitting your fan lately!!
    I sincerely hope your ass, um rash, is better soon.
    Totally rejoicing with you about Elise's good report. It's always wonderful to hear that our kids are doing not just well but fantastically!
    Hugs!!!

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  9. @ Amanda - Thanks for your comment. If you wouldn't mind, I have a few questions for you. Could you email me using the contact link through my blog?

    Thanks!

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  10. sensory integration disorder?????? uh, really? not sure about that.
    I'm so glad you got a great report about Elise but I'm not surprised. She is a treasure and you are too.
    I hate that you got caught in the hail and your meds caused an awful rash! uhhhhhhhhghhh! Jo.....! Calgon take you away!
    I'm glad you have this place to vent...and all of us who love your thoughts are here!

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  11. No need to explain the "rants". I get it. I get you.

    Love you and hang tough...and I get the not wanting any other bull crap added to your pile of bull crap. That piece of crap needs to be piled on somebody else's pile of bull shit. IMHO.

    Love you.

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  12. ugh about sensory integration disorder - we all have it! Really, as a "retired" elementary teacher I couldn't have come up with a more silly diagnosis for children that are suppose to be bubbly, unique, fun, active, learning and social...double ugh to that dx, and if I were in TX I'd drive you there myself to deliver your special response!
    As for the reglan, sorry it's been such hell for you - I had to take it when pregnant with Ethan because I couldn't eat more than a bite of food every day and it was suppose to help with appetite. After two weeks of feeling internally tortured both physically and mentally I stopped it and never ever listened when it was suggested.
    I have bags of frozen milk in my freezer, no joke, if we were closer they'd be yours in a minute - that is if you're not disgusted by the idea of swapping human milk, which I don't know why people are since they drink cows milk!
    But...on to the tornado warning - hope all is okay and your car didn't get too dinged by the hail. What a hail I mean hell of a day.
    Hope today is better :)

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  13. I think we are all going off the deep end to some degree...at least I know I am (or feel like I am) on any given day :)

    Rant away my dear, you do it with such grace and humor :)

    I'm so glad to hear that Elise is doing so well!

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  14. Your posts sound more like a mother of two very young children ( even normal for one just dealing with typical sleep deprivation and baby brain drain, much less dealing with the monster D). I would be on your side regarding the diagnoses of Matthias. I fought the advice of my own mother to have my oldest son tested for ADHD at three and now he is a fine, young, man who reads Plato, listens to Bach and animates amazing work for hours on end.....no ADHD for sure.
    Hang in there....it will get better, I promise. It might just be a little slower than you might like, but it does get better.

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  15. Oh Jo, you dot sound crazy, you sound like a stressed mommy of two, so welcome to the ole club! Sending love from PA and as a teacher of the Deaf and multiply involved and challenged children, there isn't a SLP who should be diagnosing SI disorders. That's done by an OT as Amanda stated. And we all have some SI sensitivities to some extent, it's when they interfere with living a life that it becomes a problem. Get thee to another OT for a consult, many OTs who are worth their weight in gold can help. Sending hugs.

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  16. There is a school of thought that links sensory issues to feeding issues. And I know that there are some speechies who work on this in older children here in Brisbane. Not sure about diagnosis or if/how it affects infants.

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  17. Let it out sister, let it out.

    For me venting is a release that allows me to let some things go.

    When it rains, it pours...and hails!

    But what a great report about Elise and an awesome Dexcom graph. Hooray!

    (You are featured again today in my post from the archives.)

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  18. Hey Joanne,
    My computer is having some issues and I can't email you through your blog, but my email is avolcansek@yahoo.com.
    Thanks!

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  19. I think you are most awesome, jo, and I get it. So much on the plate sometimes. I don't know about you, but I'm ready for a diet or an overflowing plate-full of chocolate cake! You're hanging in there great! Love ya!

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  20. First of all...

    SO PROUD OF YOUR SWEET ELISE! (and her awesome Mommy, btw)

    Now...

    I love this post, but have to admit that I'm SO SORRY it's hailing on your sunshine right now :(

    Keep us updated...going to check out THE APPOINTMENT in a few minutes!

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