Saturday, October 15, 2016

Or...... nooot too soon....

We're in the process of moving and I just haven't been able to update - but I will! I will I will I will.  There have been some good things :)

Saturday, August 13, 2016

There will be an Update Soon....

I have a lot to update on.  I just haven't been able to do so.  But I will soon.

Tuesday, April 12, 2016

Birth PTSD ....

A friend of mine posted an article on her facebook ...  I thought it should be shared.

Birth Grief And Trauma Are Not Selfish

This is me, I have PTSD stemming from Noah's birth....

I have PTSD from Noah's birth. I always feel crazy saying it - but it's true. Especially being told over and over that Noah had no chance for life. I ended up in the hospital thanks to Pre-Eclampsia and Noah having heart decelerations. I made it clear that if I got nothing else, I at least wanted to be given the chance to hold Noah while he was alive. I realize that may have caused a delay in "saving" him. He was born at 33 weeks, he was the size of a 24 week baby - only 1lb 12.2 oz. 13 3/4 inches long. However, there was a doctor overseeing and telling all the medical staff he worked with that the baby had no chance. Regardless, there are certain basic things you expect at the birth of your child. I didn't expect to have to be rushed in for an emergency c-section, though I wasn't surprised. I didn't expect for the room to be so very silent other than the doctor's orders as she cut me open. I certainly didn't expect to learn of my child being taken from my womb by the time being called out by the anesthesiologist who was sitting by my head. By the time I asked what "Three forty-five" was, and he told me "it's the time your baby was born" ... Noah had already been taken from my womb and rushed to a side room behind a closed door - where I couldn't see or hear or anything... there was no announcement of "It's a Boy!" not even a "Your baby is out and he's being taken by the NICU staff to check his vitals." I had no idea, there was no intention to tell me anything. He was born at 3:45 pm and I didn't see him until after 9pm. They weren't going to let me see him until my legs weren't numb anymore, and I could get up and into a wheelchair.

With Nathan - who was born via planned c-section, at the same hospital, to go into the same NICU (and funny enough he was put in the same spot in the NICU Noah had been) ... I made DB swear he wouldn't leave Nathan's side, that no matter what was going on with me, he would at least be there with Nathan because he shouldn't be alone and scared. And so he did. And when Nathan cried at his birth - I started crying. His birth wasn't what I wanted, but I had very little choice as to having a c-section thanks to the way that I was cut with Noah. There was no option of a VBAC or anything I had wanted for a birth. I didn't have to wait with Nathan until my legs weren't numb anymore, they took me back in the bed, wheeled me right into the NICU. (And he wasn't in an easy spot to take a bed) .. it was a much better birth, still scary... I knew I had another sick baby - but he was crying and he wasn't on a vent ... but Noah was sick (almost died that same week Nathan was born) and having to leave Noah in his hospital room while I went to have a baby certainly didn't aid to my calmness, infact I was a wreck ... but that's another story. 

Kaedyn's birth - however, was amazingly what I wanted for a c-section ... and the only one done by my OB that I trusted and loved, and the only one done in my home town.  We were laughing and joking while he was doing the c-section, Kaedyn cried and screamed - LOL - and peed everywhere ... we got to take pictures and everything... I was left alone with him for about a half hour or so, in the recovery room ... just him and me.  I undressed him and I counted all his fingers and toes...  I remember when they put him in my arms, he stopped crying.... and he looked at me.  He was amazing.  It was the perfect ending to my having kids.  

Aspergers & Noah


It's Autism Awareness Month - and let me tell you a little something about our lives on the Spectrum. We don't have just one kids on the Spectrum, we have two.
Noah was diagnosed with Aspergers just recently. He's always had it, I started questioning it when he was about three. There would be days where I just *knew* he had some form of Autism. Knew it - deep in my bones. Then the next day, I'd question that feeling. I ended up being on the fence about it for years. Then when I did all the paperwork for Nathan, it was pretty clean Noah was on the spectrum too. So I brought it up - to the Neurologist that sees both the boys, and he had me do some paperwork for him - and it was clear he was also on the Spectrum, more on the Aspergers side. Plus pretty severe anxiety, and ADD.
Noah has times when he's so badly got sensory overload, and it comes on quickly, and sometimes with very little stimuli ... He kinda sits and just covers his ears ... he gets super angry, argumentative, and sometimes it's hard to get him to move to a quieter place where he can calm down. Sometimes it's hard for him to pick up on things, sometimes things have to be explained to him over and over - sometimes in different ways - before it clicks. He also needs a ton of reassurance about some things.
But that's just Noah, it's how his mind works.  We LOVE him just the way he is.  

Autism and Nathan

It's Autism Awareness Month - and let me tell you a little something about our lives with Autism. Nathan is an amazing kid, we wouldn't trade him for the world, because even with the medical issues, and the Autism, and everything else he has going on - he is perfect to us, just the way he is. If we could make life a little easier for Nathan, we probably would, but not in a "I need to cure" him type of way. However, if cures could be found for some of his worrisome medical stuff, that would be AMAZING, but Autism isn't one of those things. We aren't out trying every single thing out there to try and "unlocking" Nathan or Noah (who has Aspergers.) But there are things that we miss. Like Nathan was a typical child (on the Autism front) up until 18 months, and then there was like a switch that got flipped, and I knew he was autistic. I just knew, I had been on the fence for years with Noah, but I just knew it about Nathan. So those moments when we get real eye contact, true smiles, and deep gut laughs, him being super excited about something are moments that we truly TRULY treasure.
At the zoo last Sunday, our last stop was play area. There are these little cup type things, that spin around and around, and Nathan automatically veered to that... and what happened just made my heart sour with happiness, just watching him. These are true smiles on his face, in the pictures. You know, because you can see his dimple!

Nathan came in my room and DB and I were watching TV, so I paused it and Nathan was hiding at the foot of our bed, and he'd jump up and "roar!" us (this is the first time he's done this in a long time) ... and I'd jump and scream like he scared us, and he'd laugh and laugh - and OMG that *real* laughter is the best sound in the world!! It's so rare that we hear it. So he kept doing it and (I nudged Daddy to get in on it) we'd keep jumping and pretending to be scared just to hear that sound.... it was AWESOME... truly ..

Tuesday, March 29, 2016

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 2nd, 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.... 

Thursday, August 13, 2015

Allergies, Allergies, Oh My ....


Here is Kaedyn doing his Asthma blowing test.  

Facebook Status: At Kaedyn's allergy appt....Kaedyn is allergic to every nut there is almost....Walnut 2, Cashew 3, Pistachio 3, Peanut 3, Hazelnut 3, Pecan 2, no reaction to Macadamia Nut, Brazil Nut, & Almond... The numbers go from 0 to 6 .. 6 being most severe... That's the blood test results.... He is still getting spot testing...

So they decided to test him for half strength Almond and Brazil Nut...   along with some food panels ...  (they were ONLY going to the two half strength nuts today - I guess they don't carry a oil for Macadamia Nuts.)  But I talked her into doing other stuff.  I didn't feel it was right to keep him off all his allergy meds for two tests.   Plus, it's not just this past week, it's all of the next week too cuz he has more tests on Tuesday.
Getting the tests done..... 
This was at 5 minutes and 10 minutes .... 

By the time they did the measuring - the Almond spot actually decreased.  They have it as a +1 but it was more like a +3.  

These results, also - are from negative to 4 being most severe.  

So far, this is everything that he's allergic to.  

Now - can someone explain to me how my child can be super allergic to Peanut Butter - like AS allergic to Peanut Butter as he is to Cashews and - he - doesn't - react ... not to peanut butter.  

Allergic Reactions

A person with nut or peanut allergies could have a mild reaction — or it could be more severe. An allergic reaction usually happens right away, but some people can have another reaction a few hours after they eat a nut or peanut.
Here are some of the problems an allergic reaction can cause:
  • Skin: Skin reactions are the most common type of food allergy reactions. They can take the form of itchy, red, bumpy rashes (hives); eczema; or redness and swelling around the mouth or face. A rash can happen when a nut or peanut comes in contact with the skin, even without eating it.
  • Gastrointestinal system: Symptoms can take the form of belly cramps, nausea, vomiting, or diarrhea.
  • Respiratory system: Symptoms can range from a runny or stuffy nose, itchy, watery eyes, and sneezing to the triggering of asthma with coughing and wheezing.
  • Cardiovascular system: A person may feel lightheaded or even faint.
In the most serious cases, a nut or peanut allergy can cause anaphylaxis (say: an-uh-fuh-LAK-sis). Anaphylaxis is a sudden, life-threatening allergic reaction. A person's blood pressure can drop, breathing tubes can narrow, and the tongue can swell.
People at risk for this kind of a reaction have to be very careful and need a plan for handling emergencies, when they might need to use special medicine to stop these symptoms from getting worse.
So I guess that Tree Nuts (Cashews) and Peanuts are very much separate allergies.  Kaedyn has anaphylaxis towards cashews.  Doesn't mean he will towards Peanuts - because he doesn't.  

But he does have a lot of the other reactions.  He gets itchy, he gets hives, he has eczema, stuffy nose, etc - but with all his allergies - it's going to be hard to pin point.  HOWEVER ....  I guess we know and we'll just have to keep an eye on him.  Without him reacting - with life threatening ways - we really don't need to become a peanut free home.  

Tuesday, July 28, 2015

Don't Scare Me Like That

So prior to the actual day starting, Nathan did a fasting blood sugar of 151.  I called the DR to let them know what the fasting was.  Then I called Endocrinology just to let them know what was going on and to see if they had run an A1C during his last routine blood tests.  And they hadn't.....   now I'll start sharing FB Statuses from the day too....

FACEBOOK UPDATE: Now Nathan might have diabetes...Okay so his boy bits have been swollen again...Did a pee dip on him yesterday morning....Ketones were abnormal...So I did a non-fasting blood sugar on him....It was 252 yesterday...This morning's fasting bs was 151...Called his DR who he saw yesterday, he said just keep an eye on him, I called his endocrinologist to let them know what is going on...Endocrine called back, told them the story, they said they would call back, the doc called back (not the nurse) and she wants me to feed him something high in carbs and sugars and do his bs 1 hour after..If it's over 200 he might be admitted for a few days...Or we may just do a diabetes thing in the clinic on Thursday

FACEBOOK UPDATE: How much more can this kid take? I am really angry at the world right now, I may put a smile on my face and try to pretend I am calm but I am fuming inside. We are on our way to the ER in Tacoma right now (that is where his endocrinologist is) ... Nathan had some ketones yesterday that prompted my doing his blood sugar which was 252, his fasting was 151 this morning. Doc wanted us to give him a high carb, high sugar meal to see what his body did. His BS was 105 prior to the meal. Thought maybe it was a fluke. He ate 1/4 a sandwich with meat and cheese, had a few sips of Dr Pepper, and some apple. His blood sugar was 453. Yep. Hello admittance anyone? To top it all off, we have NO money until Friday. No way to eat. Oh well.

We did another pee strip on him before leaving, and it was pretty much normal.  Maybe some white blood cells spilling.  His Ketones might be a tiny amount elevated, it's not really the neg color and it's not really the +small color.
The Mountain was out today....  huge and glorious.

FACEBOOK UPDATE: We are at the ER now, been here about hour and a half or so ... Talked to the Nurse, talked to the DR, repeated the story 10 times or so for various people.... Nathan doesn't feel sick, so the thought of an IV sent him over the edge, and he had a major kicking and screaming melt down. He was yelling for DB to "put me down" and it killed me, broke my heart, I almost started crying. I am praying that our tests were all wrong and this isn't true, that this isn't a reality ... I want this NOT TO BE TRUE so bad.... so we finally got him to do his breathing for the IV, she got it placed, but it was a hard placement and she managed to get blood out of it before it blew up like a tiny little balloon. Right now he's escaping into the land of youtube on my phone. It's about all I can do for him right now to help him. DB and I are so very much on edge right now. We just want them to come in and say the jokes on us and we can go home.

We were put in this room, with the Octopus on the door.  He had an Octopus on his shirt too! LOL

FACEBOOK UPDATE: We are at the ER now, been here about hour and a half or so ... Talked to the Nurse, talked to the DR, repeated the story 10 times or so for various people.... Nathan doesn't feel sick, so the thought of an IV sent him over the edge, and he had a major kicking and screaming melt down. He was yelling for DB to "put me down" and it killed me, broke my heart, I almost started crying. I am praying that our tests were all wrong and this isn't true, that this isn't a reality ... I want this NOT TO BE TRUE so bad.... so we finally got him to do his breathing for the IV, she got it placed, but it was a hard placement and she managed to get blood out of it before it blew up like a tiny little balloon. Right now he's escaping into the land of youtube on my phone. It's about all I can do for him right now to help him. DB and I are so very much on edge right now. We just want them to come in and say the jokes on us and we can go home.

Child Life brought in an iPad for him to watch while they were trying to place the IV ...  then they let him watch it for a little bit....  and they took it away.  LOL.  So he ended up watching Youtube on my phone.

FACEBOOK UPDATE: Thank the STARS we're going home! Tests showed absolutely no signs of diabetes!!! Whew. This is definitely one thing we didn't want him to have. She said "maybe the meter was off?" Maybe - but Dennis took his blood sugar right after Nathan's and it was fine. But WHEW... WHEW... WHEW!

He was totally mesmerized by this bubble wall.  This is in the waiting room of the ER in Tacoma.  Could have watched that all night probably!  I did a video of it too.  That'll be up on our Youtube Channel soon.

Finally headed home.  Goodbye Tacoma...  hello Peninsula!

Got home, we had lasagna, and we all went to bed.  Oye.    Exhausted.

Saturday, July 25, 2015

Emotional Vomit of a Worried Mom

So since Noah and Nathan's appointment with the Genetics Doc (team) ...  my mind has been reeling a bit.  I got the letters in the mail today - from the appointment.  Ya know, the visit summery, the doctor's notes that he dictated.  So I am just reading through them....

Basically - the diagnosis we've been living under for the past 5 years is being taken away from Nathan.   That of Russell Silver Syndrome.

The biggest reason is - as Nathan is getting older, he is seeing less and less of the RSS features, and the brain malformations, the cleft palate - and maybe some other things, point in a different direction.
But he doesn't know what.

He mentions his "cerebellar vermis hypoplasia" which we know as Dandy Walker Malformation

the "bilateral frontal polymicrogyria" knew about that too

and "2 subcortical cysts" ....  knew about that....

Doc G. points out that he has a "marked 3 year delay" in growth.  He has proportionate small stature, thin musculature, and distinctive external features.  He has very mild clinodactyly, distinctive foot with presence of short second toe (shorter than both the big and middle toes) ...  he has distinctive craniofacies - which has a triangular aspect to it.  He has hypoplastic columella, cleft palate, cleft chin with prominence.

Not sure what  overhang columella is - looked it up and couldn't find any information about it really - just links to disorders ...  so I found out "columella" refers to the area between the nostrils ... and over hanging just means what it sounds like.

The picture below is NOT Nathan, it's an example of what is being talked about.....  

Then I saw stuff like....

"hypoplastic nares"
  1. Hypoplasia is a congenital condition, while hyperplasia generally refers to excessive cell growth later in life. (Atrophy, the wasting away of already existing cells, is technically the direct opposite of both hyperplasia and hypertrophy.) Hypoplasia can be present in any tissue or organ.
  2. The anterior nares are the external (or "proper") portion of the nostrils (nose). The anterior nares opens into the nasal cavity and allow the inhalation and exhalation of air.
 and "apparent telecanthus" ...

Telecanthus (from the Greek word "tele" (τῆλε) meaning far, and the Latin word canthus, meaning either corner of the eye, where the eyelids meet) refers to increased distance between the medial canthi of the eyes, while the inter-pupillary distance is normal. This is in contrast to hypertelorism, where the inter-pupillary distance is increased.
The distance between the inner corner of the left eye and the inner corner of the right eye, is called intercanthal distance. In most people, the intercanthal distance is equal to the distance between the inner corner and the outer corner of each eye, that is, the width of the eye. The average interpupillary distance is 60–62 millimeters (mm), which corresponds to an intercanthal distance of approximately 30–31 mm.[1] The situation, where intercanthal distance is intensely bigger than the width of the eye, is called telecanthus (tele= Greek τηλε = far, and Greek ακανθα = thorn). This can be an ethnic index or an indication for hypertelorism or hypotelorism, if it is combined with abnormal relation to the interpupillary distance (A D STEAS).
Traumatic Telecanthus refers to telcanthus resulting from traumatic injury to the nasal-orbital-ethmoid (NOE) complex. The diagnosis of traumatic telecanthus requires a measurement in excess of those normative values. The pathology can be either unilateral or bilateral, with the former more difficult to measure
AND ....  "narrow palpable fissures in the horizontal plane"  I know fissures means cracks....

I'm not sure if that's in reference to his nose or what.....    I'm just.....  ::: sigh :::

And now, instead of RSS, it's "Undiagnosed genetic bio-medical diagnosis to account for Nathan's congenital anomalies and developmental delay." 

And then on the page below, the thing that jumped out at me was "for exclusion of a congenital disorder of glycosylation of both N and O subtypes"

And there was talk of UPD which is Uniparental Disomy - which means that instead of getting DNA info from both parents - for an arm or what not of a chromosome, or some part of the DNA, the information for both sides came from ONE parent.  So instead of getting info from Dad and Mom, it is Mom and Mom or Dad and Dad.

There is a whole list of UPD's  ...  one of which IS Russell Silver Syndrome.

Noah's appointment didn't go the same way.  At least his diagnosis is solid.

There were a couple of things though ....  

Noticed "Pectus Excavatum" and thought - well - what the heck is that?  Makes sense once I found out what it was... it means the chest is con-caved in a bit

This is how they fix it.....

Another thing I didn't know what it meant was the "pes planus" which just means flatfoot(ed) which that I knew.

And the "acanthosis nigricans" which we talked about at the appointment, it's the darkening of the skin around - like the neck area - and is often a sign of pre-diabetes.  I have tried to scrub this off his neck but it doesn't go away.  :/  Scary.

"At this time I think it is reasonable to continue to attribute most of the symptoms and signs to Noah's Mosaic Trisomy 16" ... including his muscle issues.  He has strength - but his muscles wear out and weaken up very easy.  We've been trying to figure out what all could cause these muscle issues - can't figure it out - and Dr. G said ... basically, when Noah was conceived, of course his cells didn't reproduce correctly, and that includes his brain.  So his brain is wired differently and he thinks Noah's brain and muscles can't communicate well - so it's a neurological thing.

He also basically said that Noah wouldn't ever be able to live by himself.  I'm not 100% sure I agree with that, but I do know it's a huge possibility and we (DB and I) have already talked to the older boys about needing to be there and take care of their brothers.  Kaedyn is a little young to have that conversation with.  But still - to actually hear it - out loud - it's like BAM.... punch to the gut.

It doesn't MATTER that I have this knowledge already in my brain, that I have said it myself - and discussed it as a family.  It's like the Autism diagnosis.  I had speculation that Noah was on the spectrum all his life but was so on the fence - I'd be sure one day, and sure he didn't the next - that I didn't pursue it until recently.  Nathan I always knew was on the spectrum from the time he was 18 months old.  But when you actually HEAR - "your child has autism" it's like a punch to the gut, and a kick to the head.   Because - weirdly enough - when it finally comes down to hearing - yes - yes it's true - you start to think how everything is different now.  When - really - nothing is different.  They are still my kids.  I still love every ounce of them and wouldn't change them for the world.  But I have to carry the knowledge that ...  Noah and Nathan may never find love, or have kids, be parents, they might never be able to live by themselves....  and that's NOT just because of the autism but their separate medical issues, together, as a whole.  You see people with autism lead very good successful lives.  I'm not blaming that on the autism.  But it does weigh in.  KWIM?

My kids are druggies .....  this is their basket of what they hit on an almost daily basis.
 The first pic is of the boys nightly meds.  Nathan's is in the pink one, Kaedyn is in the green one.  Nathan has more pills than Kaedyn.... I think ... let me think a second.  Okay - so he has 5 pills and 2 half pills, so that's 6 right?   Tech.  Kaedyn takes six.  Nathan's is still MORE .. bigger pills.  And I have to grind it all up .....   and you like my notes in the med basket, one is when his G-Tube was changed, one is the last time I opened a new extension ... and one is what liquid meds he gets.

Liquid meds and crushed pills - ready to go in the G-Tube.....

I wasn't going to ask but I would be awful grateful for any prayers, positive thoughts, whatever you believe in sent Nathan's way. He hasn't been feeling well all week... he's been in a lot of pain (teething, migraine, ear pain) .... he's been vomiting off and on for the past 48 hours. Tonight we noticed that his right scrotum/testicle is very red and swollen again. His actual testicle is very large which is not normal - it's never been swollen to the size it is right now This is what landed him in the hospital in May (however we believe the sepsis was actually caused by an antibiotic he was on - but that is just an educated guess at this point.) .... He is NOT running a fever right now - which is going to be the tipping point. We know that if we take him in, we'll be sent to Seattle for them to evaluate him, and last time the only thing that held them off from hospitalizing him last time was the fact he didn't have a fever. So we know that THAT is the tipping point. He says it's sore, and it hurts, and we're keeping a close eye on it and taking progression pictures that will only be shown to the doctors. I ask that this is just a set back, something he fights off himself. This is the same testicle that was caught up by his hip until about a year ago and we were told could become cancerous. Suddenly he has all these problems with it. Just hope this is becoming a new "normal" for him and nothing else. It's scary though.

His Epididymitis is back.  I can't show pictures ...  but he's really swollen.  REALLY swollen tonight.   
This is basically what is going on .... 

This is starting to become a chronic thing :(