June 2022 Update ....

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Well HELLOOOOOO there ...

It has been a LOOOOOOOOONG time .... 

days .... months .... years .....   [gasp]

It's been awhile ...  I mean, yeah.   There hasn't been a whole lot "medically" going on.  Both Noah and Nathan are relatively stable in most to all areas of their care and we're doing well for the most part.  Which I am beyond THANKFUL for.  Because there were times ... 

And COVID happened.   We literally just holed ourselves into the apartment and bunkered down.  Might have invested in learning smoke signals and carrier pigeons too, but ... luckily, it didn't come to that. We survived the 2020 Toilet Paper shortage.  

We did, as a whole family, caught COVID in January (of 2022).  We escaped it for a long time.

Noah is 20 now ....  oh holy crap.  He's out of his teens, full on adult mode .... only nothing has changed.  LOL ....  

Noah's big news is he has a girlfriend!  She seems to have developmental delays too and that causes some confusion between them sometimes.  But she brings out some great things in Noah.  And they are both learning a lot - not only about each other, but also together.  He name is Melanie.  They have been together for 18 months now.  

We're still treating his juvenile glaucoma and his muscle pain/issues still heavily exist.  Of course his physical stuff doesn't go away and his Mosaic Trisomy 16 will never go away.  But Noah is doing really well and I'm so at ease with it.  I don't have to really worry about him.  The doctor actually told me that ....  I don't need to live by the whole ....  "anything could happy any day and we could lose him" motto....  doctor said, "I think it would have happened by now" ... and the only thing that I really worry about is his glaucoma and his kidney(s) .... 

His pain is just something he's used to and we deal with.  

So I want to mention that he's about 100 lbs now and his max height is 5 foot even...  he's not growing anymore.  He hasn't for a couple years. 

Also, Noah has no desire to drive.  Just the thought of it makes him anxious.   Maybe one day he'll push through that and realize the independence is amazing, but for now, we take things at his pace. 

Nathan is 15 now.  WOW ...  this kid amazes me too.  I can't believe he is 15.

We just had an appointment with his doctor and he weighs a whopping 65 lbs.  He is 4 foot 8 1/2 inches.  The parameters for "Primordial Dwarfism" is 4 foot 10 inches or less and I really don't think that he's going to get to be 5 foot 11 inches so .....  [sigh] ...  

The scariest bit is that he has 3 upcoming surgeries.  One is this Tuesday (the 21st) and I am terrified.  Don't tell Nathan that though.  This surgery is for his VPI and so they are going to go in and try to correct some of the structure that didn't develop properly in his throat and mouth.  The hope is that when it heals he'll be able to communicate better/speech won't be so hard for him.  There is no guarantee at all and because of that - this surgery was left totally 100% up to the boy who'd have to go through it.  And he wants it done.  In fact about 6 months ago, he asked me about it.  So yeah ....  he wants to do it and he wants it to work and I want nothing more then for it to work.  

However, as his Momma, I am terrified.  Last time we talked about this surgery - the doctor made a comment that if we did the surgery, he would die because his airway was too small.... 

.... of course this was years ago, and he's bigger and his airway isn't as small ... and it's the same doctor so I think if he felt there was going to be the same risk, he wouldn't do it ... 

BUT STILL .... dammit ... . it's still there in my brain.  

AND THEN add the fact that last time he was in the hospital he almost died and I just can't ... 

..... AND I am doing this as a single parent now because my "husband" left 3 years ago ...  oh yeah....  

Hi. My name is Annissa and I'm getting a divorce.  

Is there a prize for that? 

The prize is not being in a relationship that apparently one person thought sucked so much that they had to run away screaming ....  ha ha ha .... he didn't.  He just loved me so much he decided he needed to ...  whatever.  You know my sarcasm is one of the reasons he left....  

ENNNNNeeeyyyyway

I am used to being part of a team when Nathan has surgery - and having someone who helps to keep me solid and not let the anxiety take hold.  I won't have that. Not to mention his dad would always carry him into the O.R. and it's just going to be weird ....  

........  weird.   

And last time he was in the hospital was May 2015 when he almost died.  It's not okay. I don't need to think of that either.   

Let's all promise to keep me in check and not allow me to burst into tears.  MmmmmK? So yeah.  I'm trying to be okay but I'm not okay.  

So I will be updating.  

I spent some of today trying to figure out all the stuffz I gotta pack and take.   Wish me luck. 

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

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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 :)  

First Week Home........

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FB (June 28):  Nate hanging out this morning. .... He still won't walk so we are going to work on that later a little bit. Right now he is watching Minecraft videos on YouTube and eating strawberries, watermelon, and cheese. ...

The other kids got to go to a birthday party for Calahan's Fiancee's brother (and his Fiancee and her sister, I thought it was just for her brother or I would have sent her gifts with him.)  Nate got to stay at home.

Not that he minded!  

We got cleaned up and changed.....  

 The boy and his Pup ....   they love each other :)   See them holding "hands" ...

 So the boys fundraiser is just not going very well.   :(  

 I used to make these all the time in highschool...  and I thought the kids would get a kick out of them.  They are Yo-Yo balloons.  

FB (June 30):  Nathan actually ate apple sauce today!! HUGE -he tried it and liked it and ate some. However, he has refused anything of real substance today. He had watermelon, he's had applesauce, popsicle, ice cream, and chocolate milk... I've offered toast, sandwiches, eggs (which he refused, a good thing, cuz I found out we have none) ... I wonder if his tummy is upset 

On June 29th .... I did an order for the STARTER KIT through Patchwork Peddler....  We ordered some samples ...  and were happy with them (that's what Nate has been using).   But we only have three samples.  So we're trying to use them and doing gauze inbetween....   I am washing them by hand also - which took some getting use to - since they were air drying (we don't have a washer and dryer) ...  they were hard and crusty - so we used fabric softner only to be told NOT to because it will start to repel instead of absorb.  So I did a lot of research and FINALLY figured out a way to wash them and have them still be soft w/o using fabric softner.

Anyway - we ordered the patterns above.  The Mickey pattern is for the bag (pic below, the Noah's Ark one) .... and the rest of them are the patterns we ordered for the pads.

July 1st:  It was a warm day ... so the kids got to have some water fun!   Water Balloons & Water Cannon!

Noticed that Nathan's button is getting red and irritated :(   I taped the gauze on there over night, when I put just the tape on the gauze to keep it closed, it falls off :/

Called the DR the next day to see both Nathan and Kaedyn....  

He told me for Nathan - to start putting some barrier ointment on there (he gave me a sample) and to just keep an eye on it.   Kaedyn ... well.. he has strep throat!   Oye!

FB (July 2): Nathan is getting all irritated under his G-tube. .... took him in to get it checked out and doc wants us to change his pad more (going to have to use gauze and tape until we get more pads).... like 2 or 3 times during the day. ... And put ointment on it. ...

Someone came up with the bright idea of SUMMER SLEDDING!   The kids have a great hill right outside our apartment and a neighbor gave them some cardboard.....  hence SUMMER SLEDDING IS BORN!

FB (July 3):  My bubble Dino lover is in great mourning. He ask that all flowers and cards be sent to his home address and donations can be made to his GO FUND ME fundraiser or PayPal. ... And all media requests can go through his media consultant. ....

FB (July 3): Nathan got a new G-Tube Pad from his Grandma today!! Thanks GrandmaPhyllis!! He wanted to wear it right away tonight when we changed it :)

After SUMMER SLEDDING ...... this is how gross his pad was, and is that blood?  Oye....  oye oye oye...

Have a Happy 4th of July tomorrow!!!

Day 1 Home.....

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FB: Morning 1 at Home: Nathan is still crazy sore. He does NOT want to walk. Luckily his pain is at a 2 on the face pain scale (yay! - but I think he's talking about his general pain - and not when he tries to walk.) ... Last night he wanted to sleep in our room which was fine with us. He slept well. He woke up this morning and started to poke me (not moving of course - just poking my legs) ... and so I got up and asked him what he needed. He wanted to be moved out into the living room so he can play X-Box. So boy got what he wanted  Oh and Chocolate Milk is his magical elixir right now, it's keeping him drinking! So that's what he's been drinking. Kaedyn is really happy to have him home

Got the kids these crazy Popsicle for a treat.  The peel is fondant ...  they were weird.   But the kids liked them still....

Got all Nathan's cards on display!

FB:  We did his G-tube cleaning this morning (not his favorite thing for sure) and put a pad on for the first time (which he did not want any part of but convinced him to try it out just to see how it felt) and he likes it. ..

Thank You Everyone!!

. Thank you to EVERYONE who sent gifts and cards for Nathan!!!   Every single one is appreciated!!!

 All his cards up at home....  

His Cub Scout Pack made this card while we were at the hospital and missing an event....  they even got Chuck E Cheese to sign it!!

Picture of Chuck E Cheese signing Nathan's giant card!