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Friday, August 10, 2012

Frustration

I tossed and turned all night.  ...yesterday's appointment with the craniofacial orthodontist went really well.  The minute we walked in the doctor had a shocked look on his face and said he expected a much skinnier baby after having read through Connor's notes.  ...10 points for this doctor because 1st, he read through Connor's history and 2nd, yeah...Connor is cute and chunky like that.  I'm betting his weight is past the 13lb mark easily. ....we've increased his feeds by 4 ounces a day in the past 3 weeks and he's also moved to a bolus feed of 100 ml in an hour, every 3 hours.  He's stretching that belly. (it was a slow process, but he handled it well)   ............This doctor asked if we had any questions before we started and of course, I asked my standard g tube question and he replied that he believed it was the way to go after having read Connor's notes.  ...after that, really there wasn't too much to ask until after he accessed Connor.   ....he had me hold him to where he was facing forward and his head was on my shoulder.  The doctor was very sweet in saying that Connor would probably get upset but really, Connor just sits there staring at him the whole time.  Dr. Yashimiro (lets give him the credit he deserves) looked at him for about a minute and decided he would definitely make him a prosthesis and that he believed he had an obvious case of tongue tie and that a fendulotamy (hope I'm getting that right) would also help Connor.  The tongue tie in the simplest terms means Connor can't lift the tip of his tongue, the bottom thing you feel when you lift your tongue is further up in Connor's mouth.  A fendulotomy would simply cut this area.  ....right then and there, Dr. Yashimiro sent an email out to speech therapy, the pediatrician, the ENT and to Dr. Siddiqi.  ...amazingly prompt and efficient.  ....also, he once again said that Connor may get upset but he'd go ahead and make a mold for Connor's prosthesis.  And once again Connor just put his head back and let the awesome doctor jam stuff in his mouth.  (adorable baby I've got!)  ....Dr. Yashimiro said that we'd have to come pretty often until his palate surgery since Connor is in a rapid growth time.  Luckily this orthodontist stuff is considered medical so is covered under our Blue Cross (though we had a mystery $50 fee yesterday).  .......anyway, great and informative appointment.  This man did not flip flop in diagnosis and handled the business at hand.  I would love to send a memo to all doctors to do this.  I love the personable docs but in that, I love them taking care of business even more...especially since that business means making Connor better, faster.    .........now, what kept me up last night was this tongue business.  I don't know if I've mentioned it in prior posts or not but we have addressed Connor's tongue at several appointments.  It seems to me it's a pretty simplistic diagnosis that is affecting Connor in a big way and I'm just a little pissed that no one has mentioned this before.  ....I will say that I got a small sticky note before he left the NICU that stated Pierre Robin, Cleft Palate and Short Tongue...these were the things I was to note on my call to the craniofacial clinic the first time I called and saw someone.  Obviously, I did just that.  Even more, as the weeks passed by, especially after that first jaw distraction surgery and initial assessments of feeding problems, we noticed his tongue didn't act as it should.  For crying out loud, he sees a speech therapist and I've blogged about pushing the tongue down to coax it to move correctly.  Countless doctors are jamming their fingers in his mouth.  ..........I made a facebook post and two friends from my upbringing posted about it.  One has a baby that had the surgery at a few weeks old to fix this issue so she could drink.  Another friend had it herself along with two of her children and they happen to live with it, no problem.  ...of course, I google it because in my friends' cases, those are two very different situations.  After further googling it seems pretty apparent that tongue tie affects people differently and on a scale of nothing to total big deal.  ...I'd say it's a pretty damn big deal with Connor.   ....Part of me knows this is not a quick fix to all of his problems but then again, if it had been dealt with much earlier, maybe he'd be drinking from a bottle instead of preparing for another major surgery.  ...I don't know but it sure seems to me someone should have mentioned this before.  I love my son's doctors.  I feel they take personal interest in Connor and do their jobs to the best of their ability.  I just wonder if looking at all of his complexities, did they forget to look at the simple, common stuff too?    .........I'm just sort of venting here.  Connor has an appointment with speech therapy today and you can bet your sweet buttocks that we'll be discussing this.  ...I really like Connor's speech therapist.  She is a younger woman that is very sweet and just a bit "boppy".  She drives Mikey absolutely nuts.  ...anyway, she is a total chatter box.  And well, I can be like that too.  ....today, I want less chattiness and some freaking answers.  I've read just enough to feel Connor could benefit from having his tongue clipped underneath.  I also realize that my hour of research is nothing on her training or the combined years of each of the doctor's training so I'll do my best to keep my mind open.  ....Next week, I'll see the pediatrician and also the ENT.  I expect some assessment and if he needs this, they better get it done.  ....Dr. Yashimiro said they normally do this when they fix the palate.  ummmm....no.  I have been binky dipping and watching him suffer through bottles.  If he needs this, they better get it done now.  I'm pretty sweet to each of them and they all compliment me as if I'm a saint and an incredibly great nurse.  Very nice.  Thank you.  ....BUT, they will meet the total mama bear/bitch that I can be if they don't get their sweet asses moving on this.   Apologies to the easily offended but seriously.....this is my baby and he's been on a hell of a course these past few months....not to mention our entire family has been on this ride right along with him.
Little cutie....they better recognize!!! 

yeah....sick of this crap....he wants a bottle already!!!

Sawyer's sick of it too!!!

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