UPDATES *Noah*

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 Noah hasn't had a lot of things going on recently.  He's had a few follow up's with specialists...  and various other things.  If you don't read my other blog, Noah had a shooting at his school recently and it has really made us re-evaluate public school vs. homeschooling.  On one hand - I like the break him going to school gives me .... however, he's at a 1st to 2nd grade level overall.  He has dyslexia and who knows what other learning disabilities.  He'll be going into 5th grade this fall and even though I have asked the schools to hold him back - because he has expressed he doesn't like being pulled out of class - and especially when he's sitting in class and doesn't understand what is going on - now, he has a folder of worksheets he can do when he feels like this.... and he pulls it out on his own to work when he feels like that ... which is great - but he has told me this all makes him feel stupid.  Noah isn't stupid.  It makes me sad.   So the schools unwillingness to hold him back and pushing him through with his peers is - in my opinion - not doing him any good.

He is Mr. Popular... all the kids love him.   He says all the time he has no friends.  But I've seen him in action.  He doesn't care about it all - and maybe that's why everyone likes him - because he just doesn't care.  But everyone flocks to him.   He will strike up a conversation with anyone around - no matter the age... he just loves to talk and tell you all about the stuff he thinks is super cool. 

So I'm torn....  I love that he gets all the social stuff at school but is it worth it in the long run?  Social is easy though - there are homeschool groups and other stuff....

But first we are doing a trial this summer to see how things go - if Noah listens to me (he didn't last time we homeschooled) ....  then we'll continue.  Otherwise - back in school he'll go.

So - Noah has also been complaining a lot about stomach aches.  Some mornings I think it might just be an excuse, others I believe him ....  so it's hard.  Took him in - can't find any big reason for them.  ::Shrugs ::

He lost his ear piece for his hearing aid.  Silly boy .... after a few days I called his Audiologist - told her - and scheduled to go in ....  so we had to go to Seattle to get a new cast of his ear so they could make a new mold to make a new ear piece ...

Here she was putting in the sponge in his canal so the goop wouldn't go down too far ... 

 He picked out RED ... DARK BLUE ... and CLEAR with LIGHT BLUE GLITTER this time

 Putting the goop in his ear ....

 putting some on his hand so he knows when he hardens

 playing with the goop

 Goop in the ear

 Is it hard yet?

 the look of boredom ... ha ha ha

 Taking the mold out

 Touching it....

So it takes a couple weeks for the new mold to come in ....  and so we picked it up yesterday (April 18) ...

 Colors up close....

 Pretty cool huh!?!

We think so!!

In other news - he got another hearing test ..... and his hearing is stable....  there aren't really any changes, and she did a test with his hearing aid in too... His right ear is still normal and his left he has significant hearing loss in both the ear and the bone... 

 His numbers ... even with his hearing aid in he doesn't hear perfect, but it's better...

 So his hearing is completely stable - which is a good thing :)

He also had an appointment with his kidney doctor....   there is still blood in his urine (of course) and a trace of protein.  He says everything looks good for now, but if he should ever have more than a trace of protein in his urine he's going to want to do a biopsy ... so ...  for now, it's wait a year and see how he's doing then, unless he gets sick.

And that's pretty much all there is for Noah right now :)   Oh ....  right....

Noah is 56 lbs and 14oz ... and 4 ft 3 inches... he's at the 4th percentile for height and the 6th for weight...

Oh and Noah's recent dentist appointment - NO CAVITIES!!!  He's got some major shark teeth going on - his baby teeth just aren't falling out and the adult teeth are coming in....   

UPDATES *Calahan*

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I haven't updated in awhile, we've had a lot going on with my husband losing the ability to walk (unassisted short distances, not at all long distances)  ...  so I thought I better start updating :)   We'll start with  the oldest first :)

Calahan has been going through a lot this year.  He has been in and out of urgent care, physical therapy and what not because of muscle/joint issues and pain.  As if the kid doesn't have enough to worry about with teenage angst ...

Anyway ....

We thought it was his joints - growing pains and all - and his muscles.....  and he does get growing pains!  Anyway - then we thought it was arthritis due to his broken shoulder (from birth) ... maybe effects of his scoliosis ....   in other words ... we just don't know.


These pictures were taken one night in January in Urgent Care ....

texting his girlfriend.....

 Ooooooooooooh the pain!!!

 Ugh it hurts here too......

 Back to texting the girlfriend...

In February it got so bad that he couldn't move his head - period -exclamation mark - at all.  Over the last couple months it's gotten better ...  he's gotten some physical therapy and been doing some exercises.  The PT thinks his muscles are too tight in his back, especially the ones that runs along his spine, and he's got to get them stretched out.  Doesn't help he sits hunched over and all that....  so now it's constant "Calahan, sit up straight!" on my end.  No fun at all...

He's not doing so well in school - and Doc thinks it might be because his ADHD meds aren't 100% right.  He's on a high dose right now and he is still struggling pretty bad.  So she wanted him to go see some behavior health people.  This happened the other day.  Cal was super nervous no matter how much we tried to put him at ease.   Went through an intake and they determined that Cal has some major anxiety, and a little depression ...so they want him to go to a different place that has a lot more services.  We'll have to go through intake with them again - and do all that all over ...  but at least we're on a path ....

Dentist:  2 cavities and a root canal :/  poor kid - he refuses ...  and he's bigger than me...

Back in Fall 2010 - he went through some testing in school - learning disabilities ..... it was determined he has DYSGRAPHIA ...  it's a disability where he can't get the words from his head out through his hand.  He has to - usually - verbalize it ...   the school is dropping the ball here.  

That's pretty much it with Calahan :)

Bit through his lip.......

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 Noah has taught the younger two all those lovely boy things ....  every little boy learns somewhere.   Those things every mother wants to prolong as long as possible......

............ using the finger guns ...... or any other straight object that can be imagined into one...

..................... mimicing the moves of all those stupid shows on TV that teach little kids it's cool to go up to someone and kick them, punch them.... and put them into a choke hold .......

Teaching an Autistic child the "choke hold" thing ...... it's not cool....  they tend to think it's funny to choke anyone ... including the cat and dog .......

Oye ....

Anyway ....... Gremlin Kaedyn and Gremlin Nathan were horsing around in the bedroom.  Kaedyn was on the phone with Nana at the time, and my mom said that Kaedyn had some maniacal laughter...... and then........ Nathan starts screaming.....  Kaedyn told Nana something about Nathan trying to tickle him........

Regardless..... Nathan came out to me ..... with his poor little face all bloody.  At first I thought he might have bit his lip or something....... but I didn't know....

HE BIT THROUGH HIS LIP .....

 So I took him to the ER right away ... just incase it needed stitched or they could glue it...

 (below) Pushing his tongue against it...

 (above) Watching Toy Story and having to have the speaker right by him....  (below) ... being wrapped up like a taco so they could clean it out and glue it ...

 Cleaning it out .......

 Gluing it.......

 All fixed ...  bandaid on his face.... heehee...

 They gave him some antibiotics and he's doing well now.   This happened yesterday (the 18th of December) and here he is today .... (the 19th)

Nathan's I.E.P....

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 Nathan's I.E.P. meeting went well.  He has made some progress ...  his vocab has improved a little but his speech therapist.  They said that he's interacting with the other kids a little bit ... however, he still prefers to play alone or with Kaedyn.  However, there is some interest there.  They said he loves to sit in the reading corner and just read.   They have noticed his sensory issues coming into play but not as often as they were at the beginning of the school year.  Over all - he's doing very well.   He has his issues, but he's an amazing kid - and they ALWAYS miss him when he isn't there.

I was super excited when they handed me his communication book!!  We're not having an easy time using it...  it's HUGE and it's a little hard to follow :(   But I'm excited...

I have to say that his most ABSOLUTE FAVORITE thing to do is to sit in the swing....

 He and Kaedyn play very well together :)

And here he is in his favorite reading spot :)

iPad and Autism

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So I'm working on a presentation for my Multimedia class.   It's entitled: "A Day in the Life of a Technology Savvy Autistic Child."  It's basically just some pictures of Nathan watching TV, playing on the computer, playing on my cell phone.... watching the sewing machine... etc.  At the end, I added this video.

It's from 60 Minutes - about less then two weeks ago...


It's one of the things we're fundraising for.  The communication device, that makes sentences, would be AMAZING.  The sooner he gets it - the better.  We're also raising funds to get the conference this coming summer in Illinois.  Families affected by Russell Silver Syndrome and the leading experts are all going to be there, not to mention getting an appointment with THE leading expert on RSS to get medical advice on how to help him.

There is also an article here: How iPods & iPads Help Autistic Students

This is the App we want to get him.....  ProLoQuo2Go

Preemie Remembrance....

November 17 - Prematurity Awareness Day ....

As many of you know, who read my blog regularly, I have had two premature babies.

Noah Alexander - born weighting 1lb 12.2 oz ...... 13 3/4 inches long.......... born at 33 weeks, the size of a 24 weeker ...

 Noah was on a vent for the first 40 hours of his life, then proving all the doctors who said he wouldn't live wrong...... he was off of it!! 

 With Beanie Baby HOPE ... Noah at his lowest weight - 1lb 11oz at 3 days old... 

 His itty bitty foot in my hand ....  

Nathan Patrick - born weighting 3lbs 4oz .... 15 3/4 inches long ........ born at 36 weeks, the size of a 31 weeker ... 

 Nathan was constantly under the bili lights ....... I called him my sunbather ...  and he was tube fed because he couldn't get nippling a bottle  ... thanks to his sub-mucus cleft palate ... 

 The picture below is of Calahan and Noah looking in on Nathan through his bed...  the NICU actually loved this picture - stole it from me (ha ha ha) and asked if they could use it in future publications to talk about how siblings are integrated in the NICU ... of course I said yes!!

I am the Mommy to TWO Preemies!  Two babies with medical issues.  Two babies who game too early and too small.  I've been in the NICU twice, and I've brought home two babies who were under five pounds. 

Before having a preemie - you are so naive ...  you know there is a world out there of babies who are too small, you know some of them don't make it ... you know it exists but it's the whole IT WON'T HAPPEN TO ME mentality....

It does happen ...

Then you become way to familiar with all the things that can go wrong ...  brain bleeds, feeding issues, A's & B's...  temperature holding issues, sensory issues, tube feeding, PIC lines, leads and daily weigh ins... not to mention the world of breathing tubes, oxygen... and RSV ...

It's not an easy world to enter into once.... let alone twice. 

Educate yourself....  you never know if it could happen to you, or someone you love.......

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