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Wednesday, August 13, 2014

Summer...it's been awesome....and benefit info.

First and foremost, if you're visiting the blog simply for benefit information, it'll be towards the end of this post and if I think of more to add, I'll do that in the coming days.

***LONG POST WITH A TON OF PICS.....SCROLL DOWN IF SIMPLY WANT BENEFIT INFORMATION***
Wow......I had no idea that I completely whizzed through the end of spring and most of the summer with nothing on here!!  We've stayed busy but such a good busy.  Our biggest thing by far, was our visit to the Oregon coast and to visit family in Seattle.  .....and oddly, I didn't say it was the biggest, but my boys are doing awesome.  Connor has a compulsion with trying to poke at his former g tube site/stoma and through vacation we sort of had the discovery that through all of the drama for the past two years, we truly had spoiled our boys.  It came to light in a restaurant, where we had to have our meal packed up so we could leave.  Thank God, no one was there but us and the corny-as-all-get-out waiter.  Seriously, weirdest guy ever.  Very into his role as Italian bistro waiter.  ......anywho, Connor had a screaming fit and Sawyer decided to sort of join in the fun festivities of just being a bit crazy.  In their defense, they were tired, it was after 1 so they were probably hungry, and we still had to get to the car that was a trolley ride away....meaning 20 minutes of walking to get to the trolley and at least try to head toward the car for the nearest stop.  So with that little bit of info, the summer has involved some new rules and strict as all get out bedtime routine.  They've always had a strict bedtime routine but I've learned that my boys are total routine junkies.  Not ridiculous here but they know tv time, meal times, reading times, etc.  When that gets thrown off, you can count a rough night.

As for health, Connor is amazing.  He had his annual "team" visit where he sees about 6 of his doctors and various experts like feeding and cognitive specialists.  Everyone agreed he was awesome and unless there's an issue we notice, he'll simply do any routine follow up visits and we'll meet the team again next summer.  He's cognitively online with all other two year olds and he rarely has an issue with food.  We do have to watch him for overly stuffing his mouth with food but beyond that, he's eating and swallowing as he should.  So far, his jaw has been developing in a natural way despite his surgeries.  The jaw destraction he had at 6 weeks old is normally performed about 3 times in a PRS child's growing up years but so far, his breathing is great and his jaw has grown in proportion with his anatomy.  His palate dang near looks natural.  The doctor even laughed that his little hangy thing in the back of the throat looks like it's been there forever.  And thus far in his speech development, he sounds like a normal 2 year old learning language.  Connor's only concern right now is he has a constant little scab or open area (that doesn't leak) on his stoma due to him poking at it.  Obviously, we do what we can here and cover it if we notice he's getting ridiculous but often he forgets about it and then we do too........and next thing you know, he's got a little open area again.  We'll mention this at his next pediatrician's visit but are not too concerned.  The other thing he's messing with is a small sort of skin tag on one of his chin scars.  Same thing, occasionally he messes with that and we see a small amount of blood.  It doesn't look concerning, more like it's just something for him to pick at.
As for Sawyer, we're convinced he doesn't have Autism due to him being so social.  He definitely has some unique qualities that we're working on but he's fun and really in the past month or so has been becoming helpful and so good at listening.  This is huge.  He can have some epic fits but those are becoming rare.  We incorporated the time out and he now simply goes to the chair.  Even if he has a fit, he stays in the chair until the microwave timer beeps for him to get up (in which time, he's usually calmed down).  He's become so good at picking up after himself and doing what we ask.  He's also finally started going to the bathroom.  He's far from potty trained but he's not screaming like the toilet will swallow him.  I'm thinking once he starts his preschool program, that he'll get the potty training thing done with.  ......as for being social, he loves people.  He's still got a long way to go with speech but he's better than he was.  I know he comprehends us because he does what he's asked most of the time now.  He's simply not understood when he talks.  The gibberish is there but with it, there are also some words that you can catch if you pay attention.  I notice he's worst when he's excited and talking fast.  When he slows down, you can understand some of what he is trying to convey. ......the only thing really troublesome is with Sawyer being so tall, he often is at the park and older kids believe he's their age.  They try to strike up a conversation and Sawyer inevitably talks about trains in his gibberish way and the other kid will look at him like he's crazy.  I tell them he's just tall and 3.  I'm hoping his communication improves so much more in the coming months when he starts working with professionals again.  We read constantly and he's great with words but just doesn't get those words put together in sentences.  .......Connor is picking up some of the gibberish habits but we notice he's also making small sentences and so in this moment, we're not too concerned with Connor's speech.

Anywho, pics........and a note about my benefit for Ireland.

random mom and Sawyer 'selfie'

Sawyer being sweet.

Chicken love

Some 2 year old pure joy from Connor.

A visit to the Big Boy train.  Sawyer is still going on about the 'big black train'.

Super Connor.

help in the bathroom as always....thank you Connor!  

initial gardening

watching their favorite girls try out for Hockey...love to the Hicks girls.

Connor at the zoo.

Sawyer displaying some water gun love.

Sort of funny...don't-take-my-corn picture of Connor.

peek a boo

Tristan graduated!!

Can't believe he's old enough for this......or that I'm old enough for this.

Layton Park

Garden attention from Connor.

Ireland's tree needing some water.

Random play with the never dying globe willow in the back....charred stump that is now full of growth again...ugh.  Just look at adorable toddler play.

Sawyer has had a total of 3 staph infection and 3 near misses from mosquito bites.  We very much dislike mosquitoes around here!

Tristan is now 19!!!

Multnomah Falls, OR

Cannon Beach, OR

Visit to the Goonies' house.

Connor on Astoria, OR trolley.

Random stop at a lighthouse in OR.

Seaside, OR

After one entire week at the beach, Sawyer finally ran in the water.........and loved it.

Seaside Carousel........I have never ever seen a little one as adorable and loving this as much as Connor.  It was a look of total and complete joy.  I could have done this all day with him.

This was at their cousin, Miles' house.  

Miles and my Uncle Bubba........this little guy loooooves his grandpa.

Sawyer and some puppy love.

Connor and Miles. 

My Aunt Gloria and Connor........he warmed up right as we were leaving.

My friend Bobbi's kiddos with my little guys at the Seattle Zoo.

Sawyer at a park in the Seattle zoo.

Hotel fun.

Mikey with the boys.

random fun at pier in Seattle

on the Seattle Ferris wheel

also on the Seattle Ferris wheel

the boys.

cool shot of the Seattle Ferris wheel

My cousin, Sara with her son, Miles.

a picnic at Causey Reservoir, UT

donut love from Sawyer


Friday night cards with the Hicks family

say cheese!

Tristan moved out.........ugh......he's growing up....or rather, he's grown up.

silliness

random play

yes, I put that little island together and it hasn't fallen apart in the past day.

***Be the Match benefit in honor of Ireland Rose Brady***

There isn't too much to add about the benefit outside of what's on the Be the Match site.  More than anything, I don't want people to simply think this is sweet.  There is a very real possibility that a life could be saved because someone decided to simply swab their cheeks to see if a simple procedure could save someone else.  For any questions to the specifics of any of this process please visit the Be the Match site.  Also, donations are requested due to the cost of testing possible matches and covering those matches in the even they can save someone.  All donations are tax deductible so simply email me at mikeandchanda@gmail.com with your name and address if a tax slip is needed.
   This is sooooooo very important to my family.  Losing Ireland was the single worst thing that has happened to our immediate family.  We lost the dream of all the joys of raising a daughter.  She is seen in my boys and in the faces of my friends' girls.  I love her so and wish she were here.  If we can spare a family that sort of loss, that would be so amazing.  To donate, please visit  http://www.bethematchfoundation.org/goto/brady.  Also at the top of that page are various tabs to learn more about what Be the Match is all about.  If you do not live near our chosen benefit site of Alpine Church or can not attend the benefit, please get the information to have a kit sent for free to your home.  It's a simple course of swabbing your cheeks.  From there, your information will be on file until you are 60.  In that time, it is very possible you'll spare another family from losing someone they love.