N&N's Story (2013)

So if you haven't read the other three parts of the boys stories, WHY NOT???   But I'll make it easy for you, here are the links!

PART 1:  Noah's Story
PART 2:  Nathan's Story (Noah's continued)
PART 3:  Noah & Nathan's Stories Continue

Now we can continue!
2013

One February 1st 2013 Noah turned the big ONE-ONE!   He likes to just stay home on his birthday and play games, eat cake, have whatever he wants for a meal and just have it like any other day with a few bonuses ... lol.... so he hung out in his PJ's all day!  Yep, he sure did!

Nathan got PINK EYE ... again, not the first, not the last time... but this was really gross and bad :(  Poor kid! ...

In March we went out and played with Sidewalk Chalk....   we also had check-ups for the boys and here was their weight & height charts....

April is OF COURSE - Autism Awareness Month, and so we did our Light It Up Blue on April 2nd.

I also posted:  LIGHT IT UP BLUE, TODAY IS ABOUT AUTISM ....  where I talked a little bit about Nathan's Autism and how he changed around 18 months.  I also posted LIGHT IT UP BLUE FOR AUTISM AWARENESS where I talked some about Nathan's Autism and how it effects him today.

We had some appointments so this was the update I wrote in April about all the kids..   UPDATE APRIL 2013.....

And of course, this time of year brings so many mixed emotions for me.   It's the face that Noah almost died when Nathan was born, and it's hard because every time I think of Nathan's birth, I also remember how I had to leave my very sick child in his hospital room, get in the elevator, and go down one floor in the same hospital to have another child whom we knew would be in the NICU with medical issues too.  I reminisce about how SIX YEARS AGO I ALMOST LOST MY SON.

But Nathan turned SIX!!!

May is always a big month for us!  First we had a good MAY 2014 UPDATE ....  which really covered stuff going on in April ...  (but these pictures of them at the DR are from May!)

For Noah it was about his hearing, mostly.  And his muscle/leg issues.

 Nathan LOVES these hand dryers .... he would put his hands in them all day long every day if he could... lol...

Nathan's self portrait  ....

For Nathan it was a lot of updates, planning surgery for both his 3rd Hypospadious repair and his tubes/tonsils.  Neurology update, meeting his new Autism Doc... Craniofacial Update, Dentist ...  Cardio ...  Getting fitted for his Sure Step Braces (feet) and his hearing....

But our HIGHLIGHT of EVER May is COREY'S DAY ON THE FARM!!!  This was our THIRD year going and - like always - it's amazing.

If you want to see and read more about the day ...  check out COREY'S DAY ON THE FARM 2013.

June and July were pretty awesome....   Nathan GRADUATED Kindergarten ...

There were a lot of doctors appointments ....   Here is the UPDATE from MAY, JUNE, & JULY Appointments....   I got the shock of my life when I found out that Noah was a lot further along into puberty than I thought :/   And my fumble of the year with how I handled the shock.  Also covers some dentistry stuff, and how he had 17 teeth pulled ...

He is 11 and still had 17 baby teeth.  The three teeth he actually managed to lose (you have 20 baby teeth) were really hard for him to lose.  So because his baby teeth were NOT falling out and he has shark teeth with his adult teeth coming in places they do NOT belong...  it was decided to just pull the rest of his baby teeth.  It left him with a total of 12 teeth in his mouth :(

With Nathan we talked about his surgeries again ... and time to get them scheduled ...   Nathan actually got a hairline fracture on his nose.  Oye...  these boys and their broken bones.   But here are a couple of photos from the kids appointments discussed in the above update....

Nathan got his Sure Steps....

Nathan also go his new ear pieces for his hearing aids :)   That's in the above update too!!  Also talks of the other two boys too!

In other news.....

Nathan got in a fight with a cat or kitten ....  Feline - 1 vs. Nathan - 0

We had decided to let our dog have at least one litter of puppies before we got her fixed, and found a lady with a dog to breed her with .... and she has horses.  She let Nathan take a little ride on De ... and lead him, and OMG - the cute in this photo is through the roof...

August started a bit of a rough go for us....

We met his NEW inclusion teacher at the park one day ....  and then....

It was time to PACK UP FOR SURGERY .... and have surgery...

This was his 3rd Surgery on his Hypospadious ..... what is a Hypospadious?   Well - it's where the urinary tract hole doesn't go to the tip of the penis like it should, it usually comes out on the under side of the penis.

SURGERY

POST-SURGERY

Nathan did pretty well ....  he had to have a catheter again for about a week - to insure healing and hope for no fissures (holes) later down the road.

In the middle of this collage - he's signing "I Love You" and he gives the thumbs up or down when I ask him if he is okay.

We do this every time we go to the hospital.  We take some of his lovies, and if he gets any while in the hospital... they all become his FAN CLUB encouraging him to eat and drink and do what he needs to - to get out of the hospital.

So he's double diapered.  The blue catheter is coming out of his penis, and is there for support and stability while things heal over the next week.  There is a clear cath next to it, and that is going from his bladder, out of his belly, and that's the one the urine is coming out of.  Everything is black and blue and swollen three times it's size under the diaper :(

He doesn't want to move ....... at all but.... gives the Thumbs Up ....

HOME AGAIN HOME AGAIN JIGGITY JIG ....

Nathan came home of day 3 in the hospital (his usual) ...  and he came home on ALL THESE MEDS (in addition to his normal ones) ...   He had his catheter coming out of his belly this time.

He got the two different catheters out on different days ....they ended up pulling out the stability tube  and leaving the urine output one until they were sure he could pee okay.  He wasn't happy about that (I wasn't either) but I want to make sure this was the LAST surgery on his poor little boy bits!

We also decided to start selling Nathan's ART on EBAY to help fund-raise for their medical fund :)   This is Nathan painting away ....

Now, I got a bright idea one day.  I wanted to take a picture really showing the kids size difference.  Nathan and Kaedyn are 16 months apart.  Nathan has his growth disorder and Kaedyn and him were the same size for a LONG LONG time.  Nathan was 0-3 to 3-6 month size when Kaedyn was born.  He quickly caught up to Nathan and I would constantly get asked "Are they TWINS?" of course I would say no...  except one time when I was asked - literally - a hundred times one day, and I didn't want to stop and explain things - like I always feel the need to, so I just said "yes, yes they are."   Well - they kinda are.  They might have two different birthdays but these boys couldn't be closer.  They developed their own twin type language (we called it Nathanese and that's why Kaedyn has had speech issues, but they are bi-lingual.) ... and they act like twins.  They hit milestones together... and I swear they have the same type of bond that twins do.

Well there came the time when Kaedyn started to tower over Nathan in both height and weight ....   and this is (August 2013) the difference.

September is supposed to be all about school and new friends, and fun .. and upcoming fall... nope, not for us.  It's surgery #2 time.  It's only been about a month since his last surgery ... but ... we didn't want it to happen during school.  As it was, his 1st day of 1st Grade WAS supposed to be while he was in the hospital, so he missed that :/

HI-HO-HI-HO HOSPITAL WE GO ....  this was the ENT surgery.  Plan was to put in new ear tubes (left one feel out almost as soon as it was put in) and this time they were going to put cartilage around the tubes to help hold them in place.  Most definitely the left one, the right one was still in place however, figured might as well replace it.  The plan was to also get his tonsils out and maybe his adenoids.   However, the plan changed to just the tonsils.

This is how it went ... "he said everything went brilliantly.  They replaced the right eartube (which had still been in, but they took out the old one placed almost a year and a half ago and placed a new one) ... the left eartube went as they planned.  They put cartilage around it to help keep it in place so it wouldn't fall out again right away.

Then he goes on to say that he was surprised by his tonsils.  He said when he looked at them in clinic, it didn't look that bad, but once he got in there, the tonsils were very swollen.  He said that the tonsils increased the size of his throat by 20% - which is a lot.   He also said he looked at the adenoids, and there wasn't much adenoid tissue at all, so he didn't mess with them. "

When Nathan got out of surgery - he was NOT a happy guy :(

September Surgery - Tonsillectomy & Ear Tubes (again) ... Day 2

We knew that this surgery was really going to be a tough one because our BIGGEST issue is getting him to eat after surgery.   To our surprise, he did really well.   But he was good, than bad, than good, than bad ... (sigh) ... and this is what his poor ear looked like...   um, OUCH!

Since getting a taste of the wheelchair after his last surgery ... he was all about the wheelchair... ha ha ..

HOME AGAIN HOME AGAIN JIGGITY JIG....

But Nathan did make it to First Grade .... this was his first day that he went :)

And even though Noah is supposed to be in 5th Grade, he is on 2nd grade curriculum....

NATHAN'S MONTH OF SEPTEMBER ... pictures from school, from joining CubScouts ... from his boat race ....  it was an exciting month after all the medical stuff was done!

October however........ Nathan's last hypospadious surgery .......  yeah... well....  I caught him peeing out of three holes, in this pic you can see 2 out of the 3 streams .....  this .. is ... not... good.  :(   Called the Urologist and told him...... then we WENT TO SEE HIM ...

At school ... with the noise canceling ear phones on - he likes these....

Nathan FINALLY got his Alternative Communications Device - you don't understand how excited we are!!!  It took a year and a half to FINALLY get it in our hands!  And now....  they will have to come and physically pry it from my cold dead hands if insurance doesn't FINALLY come through and pay for it.

NATHAN GOT HIS A.C. DEVICE!!
NOVA CHAT 7 GOES TO SCHOOL

I have to add this picture because........ I love it.  Nathan just before Halloween ... we made part of his costume and ... this was trying it out.  It looks like he's taking off!

November was the big start to the rotten sickness of always being sick.  You can read about some of it HERE .... ugh ....  and the struggle with nightly meds.

We noticed that Nathan's eating habits have gone from barely eating to ALWAYS eating.  He's constantly eating.... constantly.  WE LOVE IT!  He's trying new foods - not accepting a lot of them, but at least he'll try them (and then spit them out!) ...

November 17th was WORLD PREMATURITY DAY ....   I shared both NOAH'S PREEMIE STORY and NATHAN'S PREEMIE STORY .... 

December was a busy month.  Not only did we have a new family member...  Cookie, our Elf on the Shelf...  we had kittens, and a puppy (you saw up above with Nathan doing his nebby) ....  it was a busy month but not one full of appointments.  The only thing we really had to do was the dentist!  Nathan and Kaedyn were both members of the NO CAVITY CLUE - woot woot!  And Noah had one cavity ... and he was not happy.  :(

Remember when I use to do the MANY FACES OF NATHAN?  LOL.... well here are some current ones!

We decided to consult another Ortho that our dentist had suggested.  Here is Noah's panoramic x-ray from 2011 to the current one just done.

The bottom one look "cleaner" because he had those 17 teeth pulled earlier in the summer.  But you can still see the teeth NOT coming down right and at least they are not completely sideways anymore....

So we discussed our options....  and Noah was ACTUALLY excited about getting braces!   They did an amazing job of completely lying to him about how WONDERFUL braces are... lol... and go him wanting them and excited to get them.  I had braces.  I wasn't lying to him but I wasn't being completely forthcoming either.  Poor kid ....