Love this kid!

.I love this kid so much :)   Just had to share this picture of Noah and not-so-grumpy-cat ...

Momma has been CREATIVE ...

This covers that last couple of weeks.

 So I got some of his formula and some bags, and an extension, his IV pole and the pump... some gauze... and some tape ...  at the clinic.   This formula is the 1.0 and Nathan is supposed to have the 1.5.... they are sending that with the rest of his supplies.

We stopped at a few garage sales and i got a hole brown paper sack (lunch sack) full of some "scraps" of fabric that I figured I could make some pads and other stuff out of for Nathan.   The last picture, the dinosaur one I picked up at the fabric store - he really wanted a dino pad.

Nate came in to check out to see what I was doing when I started sewing a cover for his pump to dim the light of it though the night (he sleeps in our room right now)

When it was all done....   I think I did a pretty good job!!  All hand sewn ...

These two .... I mean seriously ....   <3 ....  

 Nathan got a new pad ;)

We got supplies this week too ...  bags....

 Other supplies....  his extensions, his extra g-tube tray, gauze, syringes ... formula (the correct formula) ...

We got a drawer system to store all the supplies ....  this is the one with the bags and some formula...

 Gauze ... Extensions.... Syringes  ...

This is the drawer I end up popping out every night ... has his pads in it, all the stuff we use nightly and daily...

 The pad drying line....

When I go to flush his extension - this is what comes out - it's gross :(   So I've been on and off the phone with various people trying to figure out what to do about it ...  and on the message boards...  

So I decided to make a thing to hold some ice packs around the bag of formula...  again, all hand sewn ... 

 Nathan got a Mario Pad ..... his favorite now - HANDS DOWN!

That first bag didn't work so Nana got some new fabric.  She got him this Toy Story material and mom made him a no-sew blanket.  LOL...  

I found an insulated bag we had, cut it to size.  The velcro part was the top of the bag, but I flipped it so it would be on the bottom.  So I'd load up from the bottom.  I left a slit up on the top for the top of the bag, and I sewed handles ...  I then made a bag to go around the insulated one with the handles on top, and full support on the bottom so that the velcro would be supported and not pop open with the weight of the ice pack and the bag of formula.

So then I started to make some more pads....

To my surprise .... instead of the dinosaur one ... he wanted to wear the Blues Clues one....he love Blue too .. a lot ....

Surgery might KILL him........ & G-Tube Stuff ...

.
Today we had to head over to Seattle to have a few appointments.  First one was to do the post-op for his G-Tube and do some training.  Clear him to start his feeds.  Then we were doing the VPI Clinic which several tests to figure out if 1: Nathan's palate is moving, 2: if Nathan's palate is long enough, 3: If he needs surgery to lengthen it or anything else.  And then try to meet up with with the supplies Nurse/Nutritionist and get all his supplies to start feeds tonight.  

All the stuff that goes with this one kid for one not fun day to Seattle (for dr appts) left the house at 6 am and won't be home until dinner (or later)

Tacoma Narrows foggy ... I thought it was petty....  

This is the request we kept getting all the way to Seattle .... seriously????  Someone had Skylanders on the brain....

This is how he feels about G-tube training ...

The start of VPI Clinic ...

Nathan and Poindexter....his wolf.  Nana got suckered..

Done with appointments. Got supplies. Headed home

So ... We had his g-tube this morning, was a lot easier than I was anticipating. We got all his equipment before we left the hospital today - Daddy is getting a crash course tonight. He's doing his first feed tonight.

The other appointments were ... odd. Bad news on bad news I guess.

So ... they did a scoping where you can clearly see that Nathan's palate does not completely close. (causes speech issues, on top of other speech issues he has, with liquid and food - spaghetti noodles baby! - sometimes coming out of his nose)

Oh and remember when Kaedyn threw that 2 lt bottle of soda at Nathan and hit him in the face - yeah well his nose did get broken - his septum is all the way to the right side, so they couldn't put the scope up the right side of his nose.  Why is it that none of my kids had major issues (other than Noah's medical stuff and Cal's Leukemia scare) ... until Kaedyn comes along?  Then all of a sudden I have to call Poison Control twice (both times on Kaedyn), Cal gets a broken arm, Noah gets a broken nose (falling down stairs), Nathan gets a broken nose (courtesy of Kaedyn) ... ::sigh::

Anyway .... so it's clear that he has issues still with his palate.  It is moving minimally, however it does NOT close all the way (which means it's not long enough) and he DOES NEED SURGERY to correct this.  However, Dr. P does not want to do surgery at this point in time, even though he needs it. He wants to revisit it in a year. Why? Because he's scared it will kill him - not kidding, those are the words that came out of his mouth.

He says Nathan's airway is so small he's concerned it'll cause more damage. He's also concerned that the HGH will make his lingual tonsils larger and decreasing his airway more. He is hoping that the G-tube feedings and the HGH will help his growth and he'll be able to have the surgery in a year, so he wants to re visit the thought of surgery in a year (next April so a little less than a year) ... otherwise we may have to discuss options for his airway.  What the heck does that mean?  And I didn't ask....

Also his left tube is still blocked but we're not going to worry about it right now unless it gets infected and smelly again .... so yeah. Scary biznitz ...

We went ahead and started his feeds tonight.  I managed to get his pole set up by where he had his bed set up (not an easy thing) ...  started him out on one box of feed (geez, is he a chicken?) and at only 20ml per hour.

His ..... thought process ..... on this....   "I'm not hungry" ....

But he did good :)  

I'm getting crafty! And some updates!

.
A couple days ago, Nathan was NOT feeling well.....  

We piled blankets and comforters and sleeping bags and everything we could find on the side of the bed and then put his little couch thing that turns into a bed on top of that (because that's what he always sleeps on) ...  and this way we can keep an eye on him.  He still has pain and obviously he still isn't feeling well off and on ...  

And seriously .... these two kill me.  They are SO CLOSE......  It kills me how cute they are and how they might not have been born together, but they are my twins...

 Today Nathan got fitted for his new Sure Steps!   Noah got his brace (AFO) adjusted to his new shoes too!

No more pink!  His favorite color went from pink, to blue, and now it's red....  and of course DINOSAURS is the only way to go...  

Then we had to head to Tacoma to Mary Bridge for our follow ups with Neurology and Endocrinology ...

His Neuro appointment went well.  Everything is going well with managing his migraines right now and he hasn't had any new seizure activity (and since he's been in our room the past bit this is good so we can keep an eye on that too) ...     Nathan was having fun making the wheel spin with his feet.

Dear Mary Bridge, When your book shelf is empty .... my child thinks he needs to be a book.....   plus, it's sad.  It's very sad.   Please fill it with some books.   Thank you.

His Endo appt went okay too.   Hasn't been on HGH for MONTHS now because of insurance switch and then pharmacy switch and then insurance not covering the meds he was on switch ...... any other kind of switch we'd like to put out there?   So we think it is all figured out and should FINALLY start up again ... soon....

 So I ordered pads, and they aren't going to get here for awhile.  BOO........  A friend of the family made some flannel pads...... They turned out AWESOME ........

But they don't absorb well.   :(   BOO!    So I had some old cloth diapers I used as burp rags with the kids.   So I cut some circles out of that.

First pad I made.  I hand sew - I don't have a sewing machine ... so ...   This was done quickly, not perfectly ....  I just wanted to see how one would do, absorb and all that....  

And I made a little "clothes line" for drying after I hand wash them!  Ha ...