December 2017 Update...

I know the blog is LONG overdue for a decent update.

This update will not be the full update that is needed though.  I haven't written up a GOOD update in almost two years now I think.

It's been a rough year.  Well, year and a half.   About 18 months ago we learned that our landlord at the house would not be renewing our lease.  She claimed that she needed the house to live in, but she rented it out again.  It was what it was though.

We couldn't find a place to take all 9 of us (at the time.)  We looked at several places we could have made work for all of us, but as soon as anyone found out how many of us there was, it was no...   We have been on a VA Housing list for awhile.  So we ended up moving from the house to camping out at  my Mom's.  Wasn't the best, but we made it work.

We came up on the housing list and managed to get a place, moved in on September 8th, the day before Bubba turned the big 9.  (He turned 9 on 9-9) ... LOL ...

I love this place.  LOVE IT.  It would be better if it had a bigger dining room and kitchen.  But I absolutely love it.  We all love it.  It's perfect for the six of us.

Cal is talking about moving out and moving in with his fiancee ...   she's back and forth here, which we don't mind.  Love seeing our granddaughters.  And our daughter in law.

Anyway .....

Mini Updates.. 

We'll start with Noah.

Noah is almost 16 years old.  I'm not sure what all I have mentioned lately.  He was diagnosed with Glaucoma now, and Aspergers, ADD & severe Anxiety ...  his kidneys are also getting worse.  I think they are relatively stable, but he's starting to spill more and more protein in his urine. He still spills a lot of blood when he is sick, too.  We keep a pretty good eye on it.

Also, he has pretty much stopped growing.  He's 5 foot even, and I'm happy he even hit that.   For a kid who wasn't supposed to live at ALL...

Big changes this year, he's been homeschooling for awhile ... like, since 4th grade, and he decided this year that he wanted to go the highschool and see what they had to offer.  So we did the next school day ...He's been attending since the day before Halloween and loving it. He's mostly in the Life Skills room when he is learning skills to be independent....

He went from being so tiny and not supposed to live to almost 16 years old!

Now a smallish update on Nathan. 

He is such a silly guy and soooooooooooo smart.  He might be non-verbal (or non-understandable 90% of the time) but he tries REALLY hard.  

He doesn't have any big new diagnoses but his hearing has gotten worse, he still refuses the hearing aids because they are "too loud" ...  he also went through the VPI clinic and his VPI isn't as bad as was thought, but it's definitely there.   He has to get another sleep study done and then we'll revisit if he should do surgery.  He also needs to get into a speech therapy consistently (He gets ST at school but the ST he was in outside of school was 6 weeks of therapy and then it was someone else's turn and you got put on the bottom of the waiting list again....)

Of course both he and Noah have significant muscle issues.  Neither of them can walk very long without getting really tired.  Noah will push through it, but Nathan gets so tired out so quickly it's hard.  And he still isn't really gaining weight... 

I am worried about him getting put on continuous feeds.  But if that's what's needed, that's what we'll do.  He is still just getting feeds in his g-tube at night.  

He also gets sick and loses weight quickly. He got taken off his HGH because they removed the diagnosis of Russell Silver Syndrome, they don't think he has that anymore.  They are absolutely certain that he has some sort of genetic issue, but they just haven't found it yet.  

He's doing really good in school .. this year is remarkably different and I think it's because his best friend Rylee is in his class helping him out again.  He adores her.  He's also on anxiety meds and he's not freaking out in the morning anymore, which is AMAZING. 

The most important thing is that he has been hospital stay free for TWO AND A HALF YEARS!!!  That's unheard of with him!  It's AMAZING!!!!!!! 

From 3lbs 4oz at birth to 10 and a half years old! 

That's about it for now until I can really sit down and write up the notes from their doctor appointments... 

The Monkey in the Asylum Day 1 & 2

First, I have some catching up on this blog.

Second, I don't know what to entitle this blog....

Mystery Diagnosis Duex ?

I don't know.   I guess I'll go with what I figure out in a few.

Regardless, I feel like I have gone through this story a hundred times already if not five hundred.

Yesterday, Nathan was complaining about his back hurting, a lot.  I haven't actually ever heard him say "a lot" before.  But he did.  He said his sides were hurting too, mostly complaining about his right side.  So .... he asked me for some medication - also something he doesn't normally do ...  and he said "Hurry" which is another thing that made me go hummmmm.....  never done that before either.

So ....  fast forward a little bit.  I gave him a suppository thinking he might be constipated.  He pooped a little, pooped a little more... said he felt better.

But he spent time on my bed in clear pain.

It was later that night - when we were getting him ready for bed... that I noticed that his right scrotum was very red, very swollen and painful to the touch.  Yeah.  That can't be good.  Got him settled for bed.

I called the next morning (Thursday morning) and got him an appointment to see one of the doctors at the clinic late in the evening.

Nathan was complaining he was in pain again.  Back and sides again.   He wanted to lay down and use my phone to play on and I told him it was almost dead....

He wasn't amused ....

At this point he was kinda wallowing in pain.  It was almost time to go to the Doctors ....

Got dressed and got silly!

He gave Mommy a tiny flower she put in her hair.  But look at the smiles!

And then he melted down on the grass and was in pain :(

Nathan was not HAPPY at all about having to put on hospital bracelets ...

  We got there,  He was looked over ... she wanted us to go to the ER to make sure that his testicle wasn't twisted.   So we did, and he got an ultrasound done.  Everything looked good.

Testicles were not twisted and so we were given the OK to go home, was just waiting for his first dose of antibiotics ....

Once we got the meds, and the discharge papers ...  we hit the road Jack.   There was a very beautiful sunset going on ....  so I had to take a few pictures

He was diagnosed with a UTI and Epididymitis (which is an infection in your scrotum around your testicle.

Kaedyn at home reading over Nathan's potential Zombie Virus

Me - well I was getting ready for bedtime meds - can't you tell from the tube extension around my neck?

Sadly after meds, Nathan got sick around 10:45 PM and kept getting sick until about 3 AM.  He kept throwing up his meds.  I even gave him some anti-nausea meds and he still threw up for an couple hours after.

Ugh.... Poor Baby ......   We considered taking him back in but thought it was probably the meds, so we figured we'd just call in the AM to see if they wanted to switch it.

Continue to:  The Monkey In The Asylum * Day 3 * The ER 

First Half of April's Feed Bag Art.

So April so far has been a slow feed month.  Nathan has been sick and was throwing up several nights.  We ended up stopping his feed for about a week.  We ended up getting it going again around Easter, but I started doing smaller feeds.  Instead of 3 boxes, I went back to doing two boxes.

So let me ask, does anyone else have issues with their kids getting nauseated EVERY SINGLE night, and/or vomiting from the feed?

So this is April 1 to April 15

End of March Feed Bag Art

Beginning of March Feed Bag Art