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Saturday, September 14, 2013

GI issues and Autism....updates on the littlest Brady's


Warning!:  very long post with lots of pics!



Waiting, forever, to see the GI doctor.
Just getting into as much as he can until I fuss at him.  

It's MONSTERS!!!  on Friday the 13th!!!!........and his newest obsession....wait for it........pulling off his pants and diapers.  Nice.  Good thing he's cute.

Well, this week has involved a few appointments and alot of paperwork.  Connor has worsening reflux which I guess can be normal.  He's not spitting up alot but more burping...that nasty stuff that you get as an adult I imagine, because his eyes sort of tear up and his breath reeks.  Poor baby.  This has possibly messed with his appetite just a bit.  So far, it's not a problem because really, Connor loves to eat.  The concern is more that if the acid reflux isn't controlled, his esophagus may begin showing signs of the awful reflux and then he just plain old won't want to eat.  ......not there yet, so not worried to that extent.  He did have to go back on his azithromyacin.  .....what can you do??
As for Sawyer, we've been talking to doctors and sort of ignoring doctors since he turned 2.  Why?  Because I've believed boys can simply be slower at learning things. Also, Sawyer can act perfectly normal one day and the next day...well there are alot of next days...he can be odd.  Odd as in screaming at seemingly nothing,  odd in screaming if you dare to stop an activity, odd as in not just a little ole temper tantrum...we're talking anywhere from 20 minutes to an hour plus.  Also, Sawyer is perfectly fine with a few friends we have but does better if kids are around.  He also seems to do better if we're right there or atleast, Connor is there.  He gets scared of our aloe plant.  He counts constantly.  He sings monkeys jumping on the bed easily 20 times a day.  He does that lining up of his cars thing...but oddly, I've not seen him really line anything else up.  He carries a blanket around like ....well like he's going to freakin' lose it if you take his blanket!!!!  I'm learning he likes muffins and peanut butter crackers or sandwiches....anything beyond that, not so much.  He walks in circles....not twirling...just around a room, pool, porch.....if you have something like a kiddie cart, mower or anything he can push...even better.
..........ANYWHO, let me share.
Notice the many areas I just didn't answer and left blank.  Also, on the quest to not label my son but find a little help....I can't just circle a number...I have to add in some quick notes...maybe they could dock some points from that particular number.

Just as in any facebook post......I read directions after dong this paperwork that said do not add points and score........what parent isn't going to do this.......really?!  Notice he has a 0 in one area showing completely normal!!!!  And then we go all Autism happy with a few other numbers.  BUT, let's not forget that maybe some numbers could be reduced.......then again I didn't answer several things because I either thought it was a ridiculous question for his age or there may have been a bit of that fear thinking something is up.

Another Test.........he scored moderate on this one.  Notice I scribbled here and there.....I left a few blank.  

SERIOUSLY....some of these tests were just a bit much.  I got an entire packet on Tuesday to fill out with directions to call then put these in the mail.  .......I haven't called and they're not in the mail.  Monday....I'll put it on the Monday to-do list.  WHY do I hesitate????....well seriously, could he just be going through something?!  I think so  but then again his speech at 2 (32 months if you swing that way) is waaaaaaay lacking.  Speech therapy was here to assess Connor this Thursday.  While Connor was right where he needs to be, discussions about Sawyer walking around and talking gibberish became a topic of we'll see you in 2 weeks for his assessment.  ENOUGH SAID for now.  ............clearly, when he sees the folks associated with this paperwork, we'll get an Autism diagnosis on Sawyer.  His doctor made notes at his 2 year well baby appointment.  I just thought he'd grow out of a few things.  The biggest concern has been his speech...or lack there of.  Really, Connor with all our fears and predictions, is speaking just as well and even clearer.  .......the crazy thing, Sawyer understands everything.  He laughs at the right spots in books.  He knows what we're saying and meaning.  He just also laughs at inappropriate times.  Or screams/yells inappropriately.  He can say alot of words if you're one on one and pointing out specific words.  But have him try to converse with you, and you may be lucky to pick out a word or two.  He has just recently started putting words together and sometimes you get it, sometimes not so much.   ........................sooooooooo....we'll find out things as we go.  I'll share.  Hopefully, if you're interested, you can zoom on these sheets.  I should have added the asperger's questionnaire sheets but really......the questions on that were beyond inappropriate for his age.  I've yet to meet a 2 or 3 year old that isn't selfish, most are not potty trained, groups of friends aren't really established yet, I'm thinking most toddlers don't get sarcasm, etc.  I figure I'll just tell them on the phone that it was ridiculous to send me a questionnaire that clearly was asking questions for someone much older.

OH WELL....cat out of the bag.  I don't by any means want to offend anyone who has a child with Autism.  Right now, for our family, we don't truly understand the many aspects of Autism.  I think Rainman honestly.  And Sawyer isn't Rainman.....I'd obviously be in Vegas if he were.  .....but, I do know a family (vaguely through another friend) that has a little guy with Autism.  He can seem perfectly normal but I also know that these little ones can do well.....some better than others.......some higher or lower on the spectrum.........and some do amazing because of the work that they're doing at home and with care workers.  For us, we've had one daughter pass away from a congenital defect, one perfectly fine teen (though reading some of these sheets had me wondering.....and really, I'm just kidding but there were points that you'd see in any child), one baby with Pierre Robin and various GI difficulties and then we're now finding out Sawyer may have Autism.  It's a bit of a butt hurt thinking your genes are responsible for all of this.  And really, I heard the neighbor's girlfriend (insert scratchy, deep smoker voice) talking about us one day wondering why we'd have kids knowing they would have problems.......now this was shortly after Connor was born and we went nowhere without his apnea monitor and a book bag full of his feeding equipment and his NG tube (the obvious one in their noses).  Of course, I spoke loudly that some people have no freaking clue (insert really bad word here) but even today, I want to punch her because that crap hurt.  And she was probably just talking out of her bum that day and not meaning anything but at the same time she doesn't know that we had genetics counseling and were told our little gene mix was wonderful.  Gene mixes don't predict developmental conditions like Pierre Robin and about a gazillion other things.  Science is obviously amazing....but as Ireland proved, it's got a long way to go too.  Gene mixes don't predict Autism.   ...............and for me, sometimes I think there are alot of kids functioning in a way that will have them needing care forever....they're autistic and they're parents probably get sick of commercials showing how to "cure" autism.....they probably get sick of the little kid smiling and reading and seeming perfectly normal.  I know this feeling because I've got a little of that with the CDH kids that live on.  It doesn't mean that I'm not happy for them, it just means I'm human and occasionally get really upset that my little one didn't get the same outcome.  Imagine the autistic kid that is grown and still fighting and fidgeting and maybe not speaking at all or needing help constantly........there are major differences in the word Autism.  It should be acknowledged that not all of these kids become the commercialized gluten cured.       ...........anywho, that was my tangent.  I have issues with labels.  It may be why I don't subscribe to being an advocate of my kiddos issues.  I respect those that do.  Goodness knows, I keep them as my friends because they're some knowledgeable peeps and they're there to help in a second if you need to know anything...........and really, I do like to share my story.....thus blogging......and I offer any help at anytime.  But, I don't want labels defining me or my kids.    ...............that is it.  I DON'T WANT LABELS DEFINING ANY OF US.

       
He's not all about a good picture......good luck with that.....sorry Grandma, there were things to do.

He is not one to stay with the group......he's wanting to explore it all and he'll keep you running and slightly worried if you're closer to traffic.

He can be a bit of a 'zoner' out of nowhere.......but be careful near a road because if you startle him, he may just run.  He's not really aware that this is dangerous as all get out.

He is definitely not the clingy type unless he's ill.  He was a cuddly baby but somewhere along the line he decided that wasn't for him.........so don't get your feelings hurt if he doesn't want to kiss or hug.  It's rare for him though he can be extremely sweet when he's in the mood.  

I can just imagine him thinking.......really, this is a train Pappy and Nana!  I can't stop for pictures!!!  If you try to get him to stay still, he'll just start kicking and screaming.  We thought he was just spoiled for awhile there....but really, this is different.  We've tried everything and those that have been around him in these instances (and know us)......well, they just try to offer sweet advice.  So far, we haven't figured out the solution and trust me....we've tried everything from spanking a butt to useless time outs.

Seriously......he's adorable and can be the sweetest kid around.  He is fun and alive and I wish I had his energy.

If you need a hug...just grab this one.  He'll be happy to manipulate you all day.  ........know that I say this smiling and with complete love.....though this is quite honest.

SMILE!!!

He loooooooved being with family out east this summer.  He did have outbursts going from one new place to another....but he had good times too.  He loved the attention, the food, the laughing and fun..........we all had fun.

Sweet, sweet babies.

He is not a social butterfly like that little guy in the background.  He doesn't just jump in to anything.  He is very cautious and a bit suspicious of everyone.  He may walk the perimeter for some time and it may take alot of prompting to get him to do something new.  It's OK though because eventually, we get him in there and then.....HE DOESN'T WANT TO LEAVE!!!!!

see..........good times!

As much as he loves splashing, he stays on the steps of a pool the entire time........one party, he simply ran around the pool the entire time.  Oh well, we'll get him in there eventually.  He still had a good time.

He zones out with a good movie.  

He's not real great on listening and luckily, the family room is the place to jump around on couches.  He does, for the most part, know to not jump on the furniture downstairs and he does pretty good most of the time with that.  He tends to be wild if he's been cooped up inside for too long......like most little ones, I think.

I've probably posted this picture a gazillion times.  It was a good time.  He walked around that pool probably 20 times, if not more.  He refused to leave that step once we did get him in the pool and the one time we tried to take him away from the step...it was a disaster.  BUT...we had a good time.  He had a good time.  And really, I just love this picture.  He's still my baby and he's got these little hands and big eyes that trust I'll do the right thing for him as his mama.  I'm always trying bud.  I'm not quite sure about the label you'll get but I will see if we can't find a better way to calm you down, ease your fears, and as for any of my babies, make your way towards adulthood as easy and as smooth as possible (with lots of fun, laughing, traditions, family, friends, etc) so you can live your best life knowing that we loved you so much and always did our best for you and with you.

Well............that's all folks.  Connor is good.  Sawyer is good.  Tristan loves his job and most of his senior classes, that is good.  ........let me know if all of these pics are too much or if it slows down uploads for any of you.  

2 comments:

  1. never too many pics...and if it makes you feel any better....when i was in 9th grade they thought i was too shy and quiet and i wouldnt go to college unless Mom let me take my army blanket...and before that i wouldnt go outside in 6th grade without my hat that had ear lugs and was wooly looking..until mom or someone threw it away cause i was still wearing it in july...smiles

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  2. Thanks for sharing. I do feel better knowing this but....since I know you personally....who's watching for signs with you now? ♡

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