Spring Updates

Noah turned FOURTEEN years old on February 1st (2016).  It's crazy.  Sometimes when I sit there and think about it - this is the same baby that I was told wouldn't live - period.  Not only was I told that, had that fear they were right - but also - he started life at the weight of only 1lb 12oz!   It's CRAZY.  Here he is - 14!! 

As of today (March 29th) ...  Noah has some stuff going on.  He is 2 years into having those braces!  He has another year with them (at least).  But his teeth are looking AMAZING!  And that tooth that was growing horizontally, is finally starting to come down where they can pull it down with the orthodontics into place! (WHEW!)

Also, we are a little more worried about his kidneys right now.  When he saw the nephrologist in September (about 6 months ago) … they ran some labs on him.  He had a really low level of Vitamin D.  So they wanted him on a strict Vitamin D schedule – from what I was told (over the phone) from the clinic was that he needed 500-600 iu’s a day and 2500 iu’s once a week.  Now, I found out recently that wasn’t the case at all.  He is supposed to be on 2000 iu’s a day, and was supposed to do 10,000 iu’s once a week.  (Slaps forehead.)  So we are getting new labs drawn this week and we’re going to change things based on those results.  Also at his appointment, he had a high level of blood in his urine and was a +1 on the protein.  Which isn’t good.  So I did a dip on him the other morning, and he was maxed out on the blood scale and then at a +1 again (instead of a trace) … anything over a trace isn’t good.  (A trace isn't even good.)  ::: deep sigh :::  So this week they are going to do a urinalysis on him too.  I’m supposed to do a dip on him (at home) every day though – if it is consistently up there – he’ll have to go in sooner than later.  I’m a worried Momma.  I am, can’t deny it. 

Okay – after a recent haircut and when he came out of the shower, his brother noticed he had stretch marks on his back.  Normally this wouldn’t really be a big deal.  But for this little kid who has had trouble growing, period… once he hit puberty hard – he has been growing A LOT.  He has a lot of stretch marks.  He has them around his upper arms, arm pit, shoulder/chest area.  He has them on his hips, his butt, his legs a bit.   These we have known about.  They aren’t tiny stretch marks either… they are some serious stretch marks.   So his brother noticed that Noah now has three pretty deep stretch marks horizontally on his back.  (He got a haircut and showered after to get the hair off him, otherwise he usually does it when I’m in bed for the night.) Not up and down, but horizontally across his back.  This struck me as odd.  Never seen stretch marks like that.  (thinking, how many times can I say stretch marks in one paragraph?)  Then there is also the issue of the fact that he has some gynecomastia.  If you don’t know what that is, it’s where boys breast tissue develops more like a girl’s would during puberty.  Which I noticed and wondered about before, but it’s gotten worse.  And Noah isn’t overweight. 

So we took him in, figuring he needs to get in to see the endocrinologist (who he has seen before but she felt she didn’t need to see him anymore – so we’d need a new referral.)  So we took him in and the doc looked at him, checked out our concerns, and told us he was going to make the referral.  Great.  But he said something that shocked and upset me a bit.  He said “Noah’s not going to get much bigger.”  He was 108lbs and 5 foot even.   I gave him an odd look.   He said “Noah is in the end stages of puberty already.”  Noah started getting little arm pit hairs when he was about 7 years old.  I would bring this up to doctors (back in WI) and usually just got shrugged off.  Noah he’s 14 and almost done growing?  He hasn’t grown in height much in the last year I think.  On Nov. 18, 2015 he was 107lbs and 15 and a half of an inch (probably had shoes on – or was at a different clinic)... but I have that in my book that I use for important info.   So in four months he hasn’t really gained height or weight.  So yeah.  I’m a little irritated that my worries about his early puberty weren’t really heard.  It kinda makes me sad.  I’m 5’3, and he’s shorter than I am, it just makes me sad.  Nathan is going to be around that too – probably shorter.  Boo.  Just….  BOO!

Meanwhile – with Nathan – who is going to be 9 next month – CRAZY!  This VPI surgery is still on the table.  Since the doc wanted to wait a year to give him a chance to grow and gain weight (because he was worried with Nathan’s tiny airway, he wouldn’t survive the VPI surgery.  He literally had said “if we do the surgery, I’m afraid it’ll kill him.”  So last time we saw the DR – there was talk again about this surgery – because he needs it.  It’s the only chance he has to be able to talk.  He works so hard at talking and trying to communicate with us, but with the VPI – it won’t get better unless he has the surgery.  Now, if he has the surgery, it is not a guarantee that it’ll fix his speech. But he has a better chance.  So the next step we needed to take was Nathan having a sleep study and he did.  On January 2^nd, and we got the results in early February. 

The results of Nathan's sleep study. To put it in perspective, Nathan is a very active sleeper. He spins around in his bed, his head could be at the normal spot, next thing you know he's done a one eighty and his head is where his feet were, he's constantly twisting and turning and all that all night long. During the sleep study, he did not move like normal. It took him a long time to fall asleep and he couldn't get comfortable because he was very aware of the wires and cords and everything - he was afraid to move and he falls asleep on his side, and didn't want to move on his side because of the wires and cords - so his movements were a lot less during the sleep study than "normal" .... So the results they got that night were as follows.

They want Apneas to be less than 1. Nathan's were around 8 to 9 per/hour. (which is funny, because that's what his Dad’s are at too)...

Nathan doesn't really STOP breathing, but his breathing gets very shallow. It's called Hypopnea. (Nathan’s Dad stops breathing)

His Apnea is classified as mild to moderate.

He also has Disruptive Sleep. She said he didn't wake up much - he slept 92% of the time after he fell asleep initially. He did have a lot of leg movement. She said they like it to be less than 5, and Nathan's isolated movements were around 10 and his repetitive movements (like a kick, kick, kick type thing) was at a 5.5.

So he definitely needs a CPAP machine. I know this isn't a big deal in the long run of issues, but it still sucks a lot for him. Compared to him almost dying last May, this is just a blip on the radar. 

We got his CPAP machine about a week ago.  They didn’t have a mask that fit him though.  He has a full face mask but it’s a little too big for him.  

  (Dad is super jealous of his machine too – Nathan has one that warms up the water and has a bunch of fun stuff.)

Just saying – things just don’t stop being added to Nathan’s pile of stuff to deal with. 

We’ve been making adjustments to the head gear for it to fit a little better.  For example, I put snaps in places – like – where it velcros to tighten on his head, because it can’t velcro properly where it’s supposed to because it’s longer then were it would normally be placed.  Also where it attaches to the mask, that is velcroed too and he would pull that apart in his sleep – so I added snaps to make it more secure.  Then today, I added something more to his gear, because he would slip the upper strap on his head and pull it down to pop his mask off, so I added material (with snaps) from the top strap that sits on the top of his head, to the one that sits at the bottom of his head.  Oye!  But we’re trying really hard to make it work.

So over the next few months we are going to be seeing all the specialists again.  So updates will come with all those fun appointments!  Joy to the World.... 

** UPDATE ** May, June & July

.
Here is the long awaited update on the boys ..........

Calahan got his eyes checked out in May.  He needs reading glasses, but he has for years now.  He could go without them, it's a mild prescription.  Much like mine.

Calahan had his first date with his girlfriend :)   Even though they have been dating for about 2 1/2 years.

They went to see Fast 6 at the theater and then we went over to my mom's for a BBQ ...

He's growing up so fast, it's hard to believe in 6 months he'll be 18.   We'll be taking his Senior pictures soon!!

He's such a handsome guy :)

Nathan and Noah at the Ped's office - Noah is NOT happy ...  

Noah  is never happy going to the DR ...  but this day, he was exceptionally grouchy...  LOL.   Noah has a habit of not telling the whole *truth* when he's at the DR.   About what hurts or what's going on.  He'll say he's fine.  He hates the DRs and it causes him a ton of anxiety.

Noah at the doctors 

I had the shock of my life the day of their Ped Well Child....  Noah had gained weight, and height - which is a great thing!  Trust me I'm not complaining about that.   I have also, over the past few months, noticed stretch marks, and he's gotten a little mustache, and a tiny amount of under arm hair....   but when the DR pulled his pants down to check his boy parts, I was NOT expecting what I saw.  I was one of those cartoons with the mouth hanging open.  The other child (who won't be named, but he's older) ... itched and itched and itched, so we knew he was changing, but Noah's never complained.  It was bizarre.  I knew he had started puberty, thought it was too early but according to the experts blah blah blah .. its normal.   What the F*** do they know?  

Now normally I wouldn't talk about that stuff, but ...... I have one of those Mommy moments you want to rewind and take back.   Still reeling from shock, when we got home...  I marched Noah into the kitchen were Dennis was and proceeded to try to pull down Noah's pants to show Dennis do something really embarrassing, and Noah squealed with embarrassment and I snapped out of my shock.  It was a - WHAT THE HELL WERE YOU THINKING - moment.   I wasn't thinking, I was in shock.  My 1lb 12oz preemie has HAIR down THERE.  Rewind.  Walk in the door.  "Hey Honey, we're home ....... GUESS WHAT!!!   It's confirmed, Noah's started puberty."  Walks into bedroom.  Yep, that's how it should have went.  

Dumb Mom.......

So ... let's see, what was next.....

Beginning of June we went to Seattle for Noah's Nephrology appointment. If you don't know what Nephrology is... it's the kidney Dr.   So we had a check up with him and Noah's still pretty stable.  They did some blood work but it seems it turned out all good since I haven't heard anything otherwise.  We all went that day ......

After that appointment we went to what we thought was going to be an Orthodontist appointment, but all it was - was another pediatric dentist.  We already have one of those.  She told us the only way to get orthodontics covered by insurance was through Cranial Facial   ...  Now, Noah use to see Cranial Facial   in WI and I dropped the ball on that specialty when we moved here.  So we got a referral to the one that is at Seattle Children's (that Nathan sees) ...  so I'm hoping maybe there is a chance, but I doubt it.  I'm not holding out any hope on that so we're trying to raise money for it.

So ...  Noah's oral surgery was scheduled for the end of June and the dentist we saw above made me feel as if the only way to get Noah Orthodontics was if we went through them and saw the surgeon that she wanted to do the oral surgery, because she was the one who did the orthodontics through Cranial Facial  ... but our local Pediatric Dentist, whom we know and love - had already scheduled the surgery ...  so we decided to go ahead and do the surgery.  So in late June we went in... it was Nathan's last day of school.  I got Nate in the van and Dennis called my cell and asked if I left yet, cuz they called to see if we could come in early.  So Noah came out, we dropped Nathan off, and then I took Noah to the dentist.  She did the surgery right at her office.  So she came out and told me they pulled 17 baby teeth out of his mouth.  You have 20 baby teeth that you lose between (normally) 6 and 12.  He had lost only 3, and those were always a pain to get out, they were loose forever - not for lack of trying, they just didn't want to fall out.  Much like the rest of his baby teeth.  But all his adult teeth were coming in around or behind the baby teeth ...  Noah had three rows of teeth ...his baby teeth in front, the front two adult teeth behind those, and then the two teeth that are suppose to be beside the front to teeth behind the adult front teeth ... on both his upper and lower jaws.  He has an incredibly small jaw. She also fixed a couple cavities he had - no more No Cavities Club for him.

So yeah....   he came home with 17 teeth in a bag, and 12 teeth in his mouth ...

He is still struggling with eating stuff.  Most of his adult teeth are coming up all at once now that the baby teeth are out of the way.  

Also Noah saw Orthopedics about his legs.  Now, Orthopedics says it's not an Ortho issue, and sent us to a Rheumatoid Arthritis doctor.... we just saw him, and he says - that he doesn't *think* he has it.  Even if it makes sense with his symptoms he doesn't have the wear and tear that would come with having it all his life untreated.  He's not saying he absolutely doesn't - but he says because he came in symptom free, and from what he saw, he doesn't think he has JRA...   so we still don't know why Noah's legs are in pain all the time.

Nathan has officially graduated Kindergarten!

 He was so proud :)

So in May, Nathan had another appointment with Dr. G in Urology, Dr. B's colleague whom trained under him, and hes going to be the one handling Nathan's hypospadious/undecended testicle surgery.  We liked him enough, still like Dr. B better but he's not doing surgeries at the hospital anymore and since Nathan will be staying in the hospital, it has to be done at the hospital.  Dr. B promised we were in good hands though.  Dr. B did his last surgery (2nd one) and the first one was done in Wisconsin.  This will be his 3rd surgery, and even this may not be the last.   They are going to be taking some skin from inside his cheek to put around his urethra to try to bring it to the tip of his penis since it's still on the underside.

Nathan absolutely LOVES the dyson hand dryers..... he will keep using them over and over and over and over...  LOL....  and he laughs when he's doing it...  

Nathan's self portrait drawn on one of the dry erase boards at the DR.  He's a happy mutant cyclopes... but at least he's smiling! 

Then we saw Dr. P (ENT) and we talked about his surgery ... and he wanted to look at Nathan's ears.  He said ... his left ear is con-caved in right now with the tube out.  He talked about taking his tonsils and adenoids out...  and they were going to try to schedule both surgeries together.  But he forgot about the talking about taking the tonsils and adenoids out.  So we had to go back to see him to talk about that again.  @@  LOL...   it is what it is, right?   So got that all squared away, and he decided to NOT take out his adenoids.  So hes going to get tubes and then his tonsils and because of his fragility - he'll be staying over night for that too.  :/

Because, after waiting a month and a half, FINALLY got a call with a date and found out they couldn't schedule them together.  I know that Dr. P wanted it done ASAP because of the way its affecting him.   So I just had them schedule them separately....  his Urology one will be August 2nd (next week, er, a week from tomorrow) and the ENT one will be September 3rd.  

So in other news, one hot afternoon when moods were boiling, Nathan pissed off Kaedyn somehow (really, its not that hard) and Kaedyn picked up a full 2 liter bottle of soda (Mt. Dew to be specific) ... and THREW IT AT NATHAN hitting him in the head.  He came crying and screaming and blood GUSHING out of his nose ..  (I have pictures of the massacre but I won't share, cuz it looks like someone was murdered.)  Anyway - I knew he probably broke his nose, but it wasn't obvious like Noah's had been when he broke his in Aug. 2011.  So we took him to see the same DR.  Noah had seen when he broke his.  Anyway, it was a process.  We didn't take him in the night it happened because we took Noah to the ER with an OBVIOUS break, and they hemmed and hawed over if it was broken or not, they TOLD Dennis it wasn't but then send them home with paperwork that said it was!  Regardless, Noah saw the local ENT the following day and he said it was absolutely broken.  So - we felt it was pointless if they couldn't tell that Noah's broken nose was broken, Nathan's wasn't obvious - so they'd say it wasn't.  So the day after it happened, he woke up with brusing in the corner of his eyes by his nose, and across the bridge of his nose.   We took him into the Ped to get the referral to the ENT, and had to stop for x-rays in between.

The verdict.  Hair-line Fracture.  It would heal in 6 to 8 weeks.

Nathan has also been having a lot of asthmatic coughing spells so we've increased his nebby treatments.  He is really good now for them though, sits there like a champ!

This is Nate and Kaedyn playing one hot day under the A/C in the master bedroom ...  it's a one room A/C.  They kept themselves occupied with their Leap pads.  

Eating a snack after therapy one day.  Nathan still had therapy so ... Nathan was HAWNGRY so we got a snack.  Got Noah some too for after his therapy.

This was BRIBERY ..  I found this at Goodwill and it was only a couple dollars, Nathan LOVES Angry Birds.  So this was bribery to put on short sleeves because he just won't.   So - it obviously worked!  Once he's in them and he's not throwing a fit, he's okay.  It's putting it on and fit ensues....  

This is another day at Seattle Children's with the Dyson Hand Dryers ....  LOL

 They make him so happy!

Nathan got his Sure Steps that he was fitted for w/ the last update.  He actually enjoys wearing them.  They said socks on the inside, and always have shoes on, well, that's easy for them to say.  Nathan is mostly inside and he doesn't wear shoes inside, he barely wears socks....  so we put socks on the inside after Mommy got to see them on his (bare) feet and put slippers on, that works.... right?   We also figured we could just put socks on the outside too if he wanted that ...  that way, not so slippery ...   hospital socks!  Or socks with treads on the bottom....   note to self, steal many hospital socks while in the hospital ....  and get socks with threads....

 He did have some redness after wearing them for awhile....

Nothing makes me happier then those moments where Nathan is giving me those true smiles.  Like this.  Not the smiles to appease me ... the ones where I have to say "Look at Mom" a hundred times and "Smile" fifty.   No - this is a spontaneous smile...   this is the best smile EVER ...

He got to go bare back riding at our friend Lisa's one day recently ...   he didn't like bare back riding much...

But he had a BLAST leading De around.  And just look at that picture.  He is a 6 year old little boy who is the size of a two year old, leading a horse around.   WOW right?

We got Nathan's new ear pieces for his hearing aids today.  This is what he picked up....

Kaedyn got signed up for his THIRD year of Pre-school.   This bummed me out soooooo much.  Kaedyn is totally 100% ready for Kindergarten - first kid who is very clearly ready.  But he missed the cut off by EIGHT DAYS!!!!   Ugh....  the cut off is Sept. 1 and his b-day is Sept. 9.   Yep, 8 days....

Kaedyn went back to the eye doctor and got a new pair of glasses, a little weaker prescription ... he went with Daddy and picked out his own glasses and was much more open and not as shy during the whole process so it worked much better...  Here is my handsome guy with his new glasses.

At the end of school they sent home a whole bunch of artwork......

And here he is with this end of the year diploma

He also drew his first self portrait for me .......

I always knew he was a box head.  Wait........ since he's a mini-me, does that mean I'm a square head?

For a little treat, here is Nathan, Kaedyn and Mickey Mouse at Seattle Childrens ...

And one last thing, we have some new furries in our family right now.  Our Cat, Autumn, had kittens.  She had five - one had severe Spina Bifida ... she lasted over 24 hours, and then Cupid, was a white kitten with only an orange tail and an orange heart on the back of his head ...  he died of Kitten Vanishing Syndrome which is pretty much Failure to Thrive.  We tried to save him ...  it was really sad.

Marnie is our kitten herder ...  she literally runs around them keeping them on the bed... it's funny.   The kitten names,  Rex is the Orange one climbing on Marnie.  Abby is the one that she's "hugging" and Boo is the black and white Persian ...  we lubs them.   Originally we weren't going to keep any but we had to put our cat Mia to sleep.  So ...  yeah.  There went that theory.

And I think that's it for this update!!  Next will be some entries from the hospital for the first surgery, I'm sure....