Thursday, October 18, 2012

Redefining The Brady's :D

Wow...been much longer than I thought.  ..........anyway, I was getting in a bitter place.  I can be a terribly emotional person and allow that to guide me.  Point blank, I had to stop it.  .....I am freaking 39 years old and could be stopped by someone who's practically a stranger on facebook and my mind would validate them as someone who's opinion mattered.   ..........and then, I could look a trained, medically skilled doctor in the face and say "no, that's not what my child needs".  ......Now can you see how crazy I can be?!  ...I needed a somewhat digital cleansing.  I had to stop looking at facebook accounts and groups I belong to.  I needed to stop commenting on the medical sites and such I get on.   
Anywho, something has happened in the past few weeks and I can't really put my finger on it but it's all good around here.  I haven't completely broke up with our speech therapist (Connor's feeding therapist) but her and I knew he was getting so well and I've ignored most of her suggestions and done what I thought was best (with pediatrician's blessing).  ..........since my last post, middle of September, Connor has gained to the point of now being 16 pounds and 7 ounces!!!!  He's in the twenty something percentile and amazing all of his doctors.  I was initially told because of his last swallow study that showed aspiration to give him 5 minutes of nectar thick formula, then 10 minutes of honey thick formula, and then give the rest through his g tube.  Nay-nay, I say.  Because he had a cold, he had a tough first week of me just giving him honey thick formula.  He's supposed to have about 30 ounces a day and whatever isn't had during the day, goes through his tube at night.  Well, he doesn't always reach the 30 ounces but he's been on a 29 calorie an ounce formula so if he had at least 26, we didn't do the g tube.  And ya know what, he's thriving.  I wake up sometimes twice a night to give him a bottle but sometimes, he sleeps all night.  Sometimes, if he's got a really stuffy nose he may drink just an ounce or two, wear out for a nap and then I give him the rest of a six ounce bottle when he wakes up.   ........bottom line, I decided screw the tube (except for giving his thin meds) and we'll do what we have to do to keep him wanting a bottle.  There are days where I feel like he's attached to a nipple.......but lately, he's getting in a routine.  .........I have to suction Connor about three times a day if his nose is horribly runny but when he swallows, some of the formula goes into his nose (we were informed this is another type of reflux, a nasal reflux on top of his gestational reflux).   Anyway, despite my belief that a thick formula exasperates this nasal problem, I believe the bottle is still better.  We monitor his lungs and so far, he's sounding good.  ........His ENT says for us to simply expect Connor to have a sort of cold all winter.  He's currently on antibiotics because he got the dreaded green buggies versus just clear or formula colored.   .............BUT, moral here....mama knows best (sometimes)...(most of the time?)   He's also started eating rice cereal.  I'm pretty certain he sort of pushes it up on his prosthesis and then does some sort of swallow.  He's also starting to have foods mixed with the cereal    He looooooves to eat!!!  We actually lowered his calorie count to his formula because he eats 3 meals with us now.  The pediatrician is happy and says for us to just keep up we're doing because he looks great.  We had our visit with the Gestational doctor this week and he also says we're doing what he needs.  We're actually taking away his Zantac medication.  He was doing this 3 times a day (zantac is the fast acting 'bullet' med for reflux) with Prilosec twice a day ( a slower, stay in your system reflux med) and then Erythromyacin 3 times a day for motility (getting yummies going everywhere they need to go).  He hasn't needed his lactulose (poop med) for well over a month now.    Soooooo, he's doing awesome!   .........we've been concerned about speech and hearing (sedated ABR was cancelled yesterday and rescheduled for next month at the bigger Primary Children's hospital in case of an emergency...guess the test has them under for quite some time and Connor has had problems before with being down).  .......and let me rephrase....we were concerned with speech and hearing.  Don't get me wrong, we want everything to be perfect but we truly am just dealing with one thing at a time as it presents itself.  We still need to make a decision on ASL (american sign language) versus additional speech with some baby signing but seriously, he's 6 months old.  This decision can wait another month until he's had his hearing test.  .........Next month, we also will have his eyes checked to rule out a condition known as Stickler's that presents itself in Pierre Robin kiddos.  .....once again, we'll cross that bridge when we get there.    ..........our big news is just that Connor is finally gaining weight.  He has absolutely no oral aversion though he may gross out others because when he eats, he can occasionally sneeze and it's pretty gross.....sometimes, there is no sneeze, just grossness from his nose and mouth.  But, we're used to it now.  And friends who've eaten over at the house, sort of get used to it after the first shocker for them.  .....Connor is also rolling over now.  His granulation tissue (sort of raised, angry tissue around the g tube site) is practically gone and I've found that as long as there is a tight fit of drain sponges underneath the base of the tube, he does well.  Sitting up is not really happening but he is showing increased strength, so that's good.  I am so happy for my guy.  He really is doing amazing.  The gestational doctor did say despite his doing well, the g tube will stay for atleast a year because Connor still has quite a few surgeries coming up and when surgeries happen in the mouth, oral aversion can present itself, even if temporary. other news, Sawyer had a check up to get his 18 month shots and physical.  He's healthy and tall at nearly 36 inches already!!!!  The pediatrician was a bit concerned that he's not talking and suggested speech evaluation but really, we have enough on our plates.  He occasionally says a mama, daddy, juice.........he understands us and gets his points across.  If at 2, he's still not doing too much in speech then we'll go there but really, some kids just take longer and I hear that means their freaking geniuses!!!  .......ok, some kids talk at 6 months and are geniuses.  my genius theory. personal news, I'm finally taking care of me.  I'm embarrassed to say, I have not been to a dentist since before I got pregnant, I had to have a spot on my tummy burned because I'd neglected it for several years, my weight has gone crazy and really, I was just plain old taking care of everyone else.  And aside from a short stint with therapy after having lost Ireland, I sort of figured I was fine since crying had finally stopped being a daily occurrence.    ..........Well, happy to report, I'll be seeing the dentist next Friday...and yes, I'm scared.  I've joined a gym and seriously this sort of takes care of mental and physical things for me.  ......I actually love working out once I'm in the groove.  And for me, I like waking up and having somewhere to go.  .....the act of walking out of the house by myself and leaving to do my own thing is powerful right now.  Of course, I'm a mama that loves her kids so am ready to come home.......but I'm a woman that has really missed being comfortable in her own skin.  I miss a reflection I was always comfortable with.  I miss eating without counting a calorie or feeling guilty or like I'm doing something I shouldn't.  I miss not wearing whatever I want.  .....for me, I need to lose weight so I can be fully me again.  Since Mikey and I married, fertility became a priority and depression became my friend when each month I wasn't getting pregnant.  Happiness came with Ireland and then, of course, the lowest I could ever feel happened and it paid a toll.  I, finally had Sawyer and my God, I didn't even know how much I could love again.  And let's face it, with Connor, it's been depressing.  This has been a journey that we didn't expect and it hasn't been easy.  There are times, it's still not easy but I've learned to process my feelings, my thoughts fully...and move on.    ..........I'm finally ready for me and it feels so good.     .......and it's sort of like my marriage.  I can't define why the feeling is real and the actions are there to make it all work but it's there.  I'm not sure if it's a decision to say it's time to be fully me or if it's something God instilled in me....I just know this time is different.  This time, even when it hurts and the burn is making me physically want to stop...I don't want to.  I think, next summer I'm making myself some cute skirts.  I'm going to a pool and having an awesome bathing suit and my boys and I will have a blast.  I won't shy away from the camera. 
...........anywho, that's it.  We're all doing really well.  Tristan is becoming a pretty cool teen (the horror years seem mostly over), Sawyer is a wild child but so dang cute and loving (total kissy kid) that we can carry on past his tantrums and Connor is a dream....he's been through hell, still has horrible things going on where it's hard for him to simply eat and drink, he can get upset but he takes a minute, sort of looks scared, you smile, and then he smiles...I love my babies.  I love that my husband believes in me and gives me the opportunity to raise these lovelies at home and that he's working for me to be able to leave each morning and take time for me.  That's pretty cool.
Looooooves oatmeal....with brown sugar, butter and blue berries!!!

lay him back before meds.

some play time (cool snoopy shirt from Aunt Donna!!! <3)

a good day for eating....sometimes, this is an experience of throwing everything...but Soybean loves butterbeans!

some light reading

I LOVE this man...he'll be irritated with the pic but seriously, he's feeding our baby....i love this.

I got a cool bike....i need a basket for it...


he has a tooth now!!!!...chomping it through was apparently needed for the thing to come out

Angry Birds!!!

Crazy climber!!!!

Mr. Sandwich Artist himself.

Sooooo happy to serve you.

Loving this....getting soooo chunky!

practicing the tripod sit.

umm....Sawyer's asleep so the truck can have some Connor time

Thanks Patty!!!  One of our fav shirts!

Thos lips!!!!  He's a smoocher.

He's also a grouch lately....teeth are not easy on him.

yeah...a long way to go but yesterday this said 190.2.

My exercise of choice...the elliptical trainer.  I'm using the different cross training programs that go up and down and you go forwards and backwards.  Right now, I do 30 minutes and a cool down.  Next week, I'll step it up by 5 minutes. 

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