So if you haven't read the other four parts of the boys stories, WHY NOT??? But I'll make it easy for you, here are the links!
PART 1: Noah's Story
PART 3: Noah & Nathan's Stories Continue
PART 4: N&N 2013
2014
It was a long and busy year and a lot happened. So sit back and enjoy our walk through 2014 highlights for Noah and Nathan!
Noah is never a happy camper at the doctors, on top of that.... I make sure I take as many pictures of him in the hospital gowns as I can.. because...he...hates...it.... muahahhahahahahhaa ... do you see that death glare!?!? Here he was seeing the Rheumatoid Arthritis doctors, they don't believe he has it. I think they are on crack - it fits in my head. But I didn't go to medical school....
Noah got his cavity fixed so he could get his braces.
My two special guys at the Fire House (for a Go See for Scouts) .... don't look at Nathan's feet, it might be disturbing... to explain why it looks weird, he's standing on the side of his feet.
In the end of January ... Noah FINALLY got the braces he needs. We came up with a payment plan and we still need help with fundraising for paying for it. But ... most importantly - Noah did AMAZING .. he was scared, but he did amazing. They did a 3-D computer generated model of his teeth!
NOAH GETS B-R-A-C-E-S!
Noah got his cavity fixed so he could get his braces.
My two special guys at the Fire House (for a Go See for Scouts) .... don't look at Nathan's feet, it might be disturbing... to explain why it looks weird, he's standing on the side of his feet.
In the end of January ... Noah FINALLY got the braces he needs. We came up with a payment plan and we still need help with fundraising for paying for it. But ... most importantly - Noah did AMAZING .. he was scared, but he did amazing. They did a 3-D computer generated model of his teeth!
NOAH GETS B-R-A-C-E-S!
In February on the 1st Noah turned TWELVE!
After his birthday - he got his EXPANDER for his braces... it's a bar that goes across his mouth to make his mouth bigger.....
Nathan had appointments with his Endocrinologist to talk about his growth, and then again with the Urologist to talk about surgery. The doc was HOPING that his other holes would heal up, but they didn't - he was still peeing out of three holes :/ So we had to discuss surgery. On top of that, we got him into see ENT super quick because he had a lot of discharge and it smelled super bad coming out of his right ear :( So he had an ear infection and on top of that.... we later found out he had an infection in BOTH ears and we weren't told about it -so I should have been treating both ears, but was only told to treat one.. later one (in April) ... he went in for his Audiology appointment and low and behold, his left tube is completely blocked :( UGH! Seriously!!
GROWTH AND SURGERY there are a lot of cute pictures on this blog :) A lot of Nathan really showing his personality ....
My handsome guy with his braces :)
Speaking of Nathan's personality .... Nathan got some chocolate milk. Now, normally I don't allow him to blow bubbles in his drinks ....
........ he does it a lot, and I am always "Nathan stop doing that" ... I just ask him NOT to do it and usually he will listen.
.......... This particular morning (Feb 20), though, I just grabbed my camera and was amused by the whole thing. You can see how happy this made him this morning.
This is love ...... all around :)
One of Nathan's THINGS is that he likes to Kangaroo ... Kangarooing started when he was a baby - of course, he was premature and low birth weight ... and we would do skin to skin... and this has continued with his sensory issues. He likes to be TIGHT up against me ... with something wrapped tightly around the two of us. I have a long black sweater and when I have it on he likes to get squeezed in it :) We call it Kangarooing .... when I don't have it on, and he wants to do it, we usually wrap up tight in a blanket...
One of his other things to do is ... hide in his big blue bin. It's something I got when Noah was little to store his stuffed animals in. Nathan throws all the stuffies (or lovies) out of it and hides with is blanket over top and something to watch videos on ...
So ....... Surgery was scheduled for March 12th ... it was pretty quick he wanted to get him in there... about a week prior ... Nathan started coughing a lot - asthmatic type cough but the nebbies weren't fixing it. Ended up in the ER one day because he was coughing until he threw up (it was a weekend, Urgent Care was closed) just to make sure it was nothing worse (bronchitis/pneumonia) which it wasn't... thank goodness.
Noah got fitted for his brace for his right foot - which I guess is worse than the left. He has night braces, which he was given the same day. He is getting a hinged brace. He's getting a DAFO 2.
Time came for surgery #4 on Nathan's poor little boy bits....
Everything went well. They didn't know what they would be doing until after they got in there, and luckily it was just stitching up the holes and calling it good.... no catheter at all - (serious sigh of relief) ...
True to Nathan though, he did AMAZING ... he was an eating champ after surgery - we were so excited and thinking we might only have one night in the hospital, and then....... he got sick. He pushed himself a bit much and .... he didn't actually GET sick but he FELT sick :( And then Day 2 and Day 3 were trying to get him to just pee and poop. He had a bad tummy ache night 2 and he stopped peeing - and didn't pee all night .... so day 3 we thought for sure we'd end up there another night/day ... but after some bribing, and trying everything we could - including suppositories - he finally pooped and peed and we practically RAN out of the hospital....
April is Autism Awareness Month :) In honor of that, and Nathan... my husband got a new tattoo. A turtle for our little water baby, with puzzle pieces to represent Autism.
I made ribbons for the whole family ...
April 2nd - LIGHT IT UP BLUE!
Had to go see Audiology :) Both my little men fell asleep in the car. It was a scary day - very stormy - hard to see the roads.
Nathan (on the left) and Noah (on the right) getting their hearing tests done.
Both of them got gooped up for new ear pieces :)
Mr. Nathan turned SEVEN on April 19th!
In other news we've made some progress in POTTY TRAINING!!!
Some.... not a lot .... just a tiny step forward...
Nathan got his new ear molds!
Our little Cubscout got FIRST PLACE during the Pinewood Derby for his Den and second place over all for the whole Pack!!! He got invited to the District Races. We are super excited!!!
We took the boys to CAMP PARSONS for Scouts too ... there were different stations set up and the kids went through them. It was a long day but they had fun. And so did I, with my camera!
They were also a part of the Armed Forces Parade!!
and MORE PICTURES of the boys in their uniforms
Every year, in May - there is one thing that we are looking soooooooo forward to, and that's Corey's Day on the Farm. There are horses, and petting zoo, and hot dogs, snow cones, popcorn, hay rides, roping, and a TON of fun. Noah was sick this year, so he didn't get to go :( But Nathan and Kaedyn went. And Kaedyn even rode a HORSE this year!!!
Nathan had an appointment with his G-Tube surgeon on May 16th. It went well, I suppose. He really REALLY wanted him on an NG Tube first, but I knew that would be so traumatizing for Nathan (and us) and we've been through that already. The tube can only be in the nose for a couple of days, and has to be changed.... which means pulling it out, and putting it back in, making sure it's in the stomach. Not to mention that IT HURTS or at the very least is extremely uncomfortable. But I told him we weren't willing to do it because we want the feeding tube to be a POSITIVE experience.
APPT W/ G-Tube Surgeon and in order to go forward with the surgery he needed an UPPER GI done to make sure everything - structurally inside - was good. They found out that he has Reflux though. It doesn't bother him for the most part.
Noah and Nathan had their "Graduation" ceremony for Scouts. Well, technically Noah didn't join until this point. So he's starting out at WOLVES with Nathan (who graduated from Tiger to Wolf!) because of his learning disabilities.
CROSSING OVER CEREMONY & BOWLING
So ...... Nathan is smaller than his younger brother Kaedyn. For a long long time they were the same size, and I often got asked if they were twins. It's been a long time now since I was asked if they were twins. Here is the weight comparison - though - from June 2014. Nathan is on top, Kaedyn on the bottom.
Tubie Friends is an amazing organization which will send your child a stuffed animal with a G-tube (or JG-Tube, and other medical procedures) ... to make things a little easier. We got Nathan one prior to his surgery. You don't get to pick out the animal, it's a bit of a luck of the draw. This is Nathan's though, he named it ARMY.
Bathtime......... you know you are autistic and love dinos when........
On June 24, 2014 Nathan underwent surgery to place a G-Tube - Mic-Key Button - to help with his weight and growth. It was a really hard decision for us, but definitely feel like it's the right one.
June 24:
Quick Update & Day One in the hospital
Day 2 at the hospital
Day 3 and Going Home ...
Thank You Everyone
Day 1 at home
First Week Home
So other than a few samples of the Mic-Key Button Pads we didn't have any - and our order hadn't shown up. So I thought I'd try my hand at making a few.
I'm getting CRAFTY and some Updates ...
Nathan had an appointment to pick up all of his supplies and for me to do training for his G-Tube feeds, his post Op and then an appointment with the VPI Clinic. The VPI clinic was NOT good news. It's pretty scary when the DR says "We need to do the surgery at some point, but not right now because I'm afraid it's going to kill him." ......... yes KILL HIM ....... (crying)
Surgery might KILL him and G-Tube Stuff
Let me tell you though, that learning to live the life of Tubie Mom gets some getting used to. I don't know how many times I have bathed myself in his meds because I forgot to close a port, or how many times I have had to get up for mysterious beeping of his pump.... or because he kinked the line rolling around in his sleep ....
But it sure has brought out my sewing side!!
Momma has been CREATIVE ...
But he's worth it!!
Life of a Tubie Mom .....
And Noah has gotten into LEGOs a lot. He loves to build the Tardis and Doctor Who with his legos. We're thinking maybe will get some real Doctor Who Legos for Christmas - might have to whisper that in Santa's ear! (BTW - that's the Face of Bo in the glass dome)
But Nathan got sick...... The Story of Staph. And we thought he got a Staph Infection .... but there was more to the story ....
Meanwhile, Noah was doing great with his braces!!!
Nathan on meds and yogurt for the - what we thought was - staph infection.
But then this happened :( :( :( And this was some seriously scary biznitz .....
The second I saw that temp go up to 106 at home I panicked. As soon as DB got home we were out the door to the ER with him. They honestly didn't believe me on his temp - not - at - all. They were like ho-hum..... oh you mean 100.6 .... I said "No, I mean 106.2" and they just didn't believe me. They got him back in triage and did his temp ...... 106 ......... HOLY SHIT - boy people started moving. Take off his clothes, take off his blanket - let me get a wash cloth and some ice. His poor little heart rate was so high and he'd cool down and jump right back up to 106.
I always new when his temp was going back up because his heart rate would also. So we'd have to uncover him and ice him up again .... He had a wash clothe on his head, and an ice pack on each side. Even his blue dragon got an ice pack for his wing.
Just when they were going to release him, thinking he was done spiking, it would happen all over again. And they were debating over sending us home or sending us to Seattle - and the last straw was when he spiked again and started to throw up. Then they were like, Bye... have fun in the ambulance.
So we were taken to Children's Seattle .... Mystery Diagnosis Day 1
We got there early the next morning, after spending most the day in ER .... we ended up in the ER at Settle Children's and then after a few hours were moved to a room - where we were put in isolation.
Yep. This made things a little harder for me cuz - I couldn't use the Family Lounge - so I couldn't bring food in and store it, and I couldn't go in there to get my own ice, so I constantly had to ask the nurses to get me ice (which seemed completely ridiculous cuz I'm an Ice FANATIC)... so I just felt like a pain in the butt.
However, they just couldn't figure out what was wrong with my little man. They run a MILLION tests it seemed... ultrasound, x-ray, blood work.... stool samples.... urine tests .... tons of stuff. And everytime they would come in - he would look at me and burst into tears. It was HARD. All I wanted to do was make it better.
MYSTERY DIAGNOSIS DAY 2
MYSTERY DIAGNOSIS DAY 3
MYSTERY DIAGNOSIS DAY 4
Day 4 is the day that I realized that his whole body had a reddish tint to it. Mostly his upper body. They kept commenting on his strawberry tongue. The mentioned Scarlet Fever, but his strep test (oral swab) came back negative. So then they were talking about Kawasaki disease, and that's what they were leaning towards. There is no test for it, it is rather one of those - eliminate everything else - type of disease.
MYSTERY DIAGNOSIS DAY 5
MYSTERY DIAGNOSIS DAY 6
On Day 6 he ACTUALLY started to feel better! You could see him start acting more himself and perking up. The fever finally stopped spiking and he was a lot more comfortable (and DEMANDING) .... he was eating just a little bit still - but anything was an improvement .... and he wanted to get out of bed!
His favorite thing to do was to ride his IV Pole. Ha ha.... only, we were still in quarantine and could only dance around his room....
MYSTERY DIAGNOSIS DAY 7 (and Day 8 at home)
Daddy and Kaedyn came to pick us up, we couldn't get out of there fast enough!! I can never get over the fact that Kaedyn is soooo much bigger than Nathan ... On Monday, we had a follow up with his pediatrician .... and finally got some answers as to what was wrong!!
ANSWERS & Allergies
He ended up being allergic to the med that the hospital sent him home on - OYE ....
Things just kept continuing with the whole - Nathan is always sick thing. A...l....w...a...y...s.... But Nathan's tummy was so tender and they were thinking he was having some reaction with his liver because it was enlarged (higher numbers) in the hospital. So they wanted to keep an eye on it.
Raingutter Ragatta for the scouts!! The boys didn't place (boo!)
Went in for a check up and - WOWZAH - he's gaining weight!! We put his official pre-surgery weight at 29 to 30 lbs, so we just figure from 30 .... so 6 lbs so far!!
Can I just say that I looooooooooooove it when he lets me play with him. LOLOLOL ...
Noah, in true Noah style .... of not complaining unless he's in - going to cry it's so bad - pain.... went in for an Orthodontist appointment and the discovered that one of his springs had slipped and GROWN INTO HIS CHEEK ... see the L shape or < shape in his cheek there? They took everything off his brackets for a couple of weeks so he could heal. Oye!!
Because of a few things going on with Noah, we wanted him to get in and see the Neurologist. Due to his mental age being a lot less than his actual age. So both Noah and Nathan went in to see Dr. P ... he adjusted Nathan's migraine meds a bit and listened to me about Noah and asked him some questions. He said it was pretty clear to him that Noah has ADD and Aspergers. I was a bit taken aback...
NOT because I didn't expect it. More like....... I was mad at myself for not pursuing it better. I have always been on the fence of my thinking he was somewhere on the Autism Spectrum because of his behaviors. I knew - with in a few years - that Nathan had Autism. Infact - just before he started walking at 2 I knew he had it. It was the constant spinning and flipping. It wasn't just because of him seeing sensory either. But Noah I would think "oh he absolutely has it" to "nah, he doesn't."
He got blood work done too and he was NOT happy about that ....
So I went through and I did all the tests the DR wanted me to do for him.... he was a level 2 "Very Likely" on the spectrum. Depending on how they scored the other one, it was if it was over half - and either way it was... .and of course the other one, he was positive for ADD and Anxiety ....
Minion ....... my mini Minion ......
Since the surgery and being in school - it doesn't seem as if he can catch a break!!
But he does have a sense of humor!!! He stole all the Orange Soda for himself (only the one he's holding is open) ....
But we really try to make this Tubie thing fun. Sometimes, he just can't resist, he has to shoot me with it..... what a boy.......
And we have a lot of fun doing these!!!
Again he just can't get a break .....
Noah was the Eleventh Doctor for Halloween - I think we did pretty good!
Above his belly just can't seem to clear up. Below .... what we do ...
The boys for Halloween
Pink Eye!
Another Tardis and Doctor by Noah
Seriously - this is why I get up every morning. These kids are my heart.
Yes - he watches over him ...... all the time. That's Gallifrey.
Who needs a DR?
More Faces!!!
Noah has taken a huge interest in drawing :)
Oh yes, and we are drawing on the FEED BAGS to keep things interesting!!! You can check out our 2014 Feed Bag Drawings (we only started in November)
November Feed Bag Art
December Feed Bag Art
Hey Mom, sick for Christmas???
These two are the best of friends. They are definitely "Twin Like" without being twins.
Chocolate Lucky CharmsCrack!!!
At the Tacoma Mall ....
Joys of a Tube Feeding Mom ...... get bathed in meds......
Goodbye 2014!
So ...... Nathan is smaller than his younger brother Kaedyn. For a long long time they were the same size, and I often got asked if they were twins. It's been a long time now since I was asked if they were twins. Here is the weight comparison - though - from June 2014. Nathan is on top, Kaedyn on the bottom.
Tubie Friends is an amazing organization which will send your child a stuffed animal with a G-tube (or JG-Tube, and other medical procedures) ... to make things a little easier. We got Nathan one prior to his surgery. You don't get to pick out the animal, it's a bit of a luck of the draw. This is Nathan's though, he named it ARMY.
Bathtime......... you know you are autistic and love dinos when........
On June 24, 2014 Nathan underwent surgery to place a G-Tube - Mic-Key Button - to help with his weight and growth. It was a really hard decision for us, but definitely feel like it's the right one.
June 24:
Quick Update & Day One in the hospital
Day 2 at the hospital
Day 3 and Going Home ...
Thank You Everyone
Day 1 at home
So other than a few samples of the Mic-Key Button Pads we didn't have any - and our order hadn't shown up. So I thought I'd try my hand at making a few.
I'm getting CRAFTY and some Updates ...
Nathan had an appointment to pick up all of his supplies and for me to do training for his G-Tube feeds, his post Op and then an appointment with the VPI Clinic. The VPI clinic was NOT good news. It's pretty scary when the DR says "We need to do the surgery at some point, but not right now because I'm afraid it's going to kill him." ......... yes KILL HIM ....... (crying)
Surgery might KILL him and G-Tube Stuff
Let me tell you though, that learning to live the life of Tubie Mom gets some getting used to. I don't know how many times I have bathed myself in his meds because I forgot to close a port, or how many times I have had to get up for mysterious beeping of his pump.... or because he kinked the line rolling around in his sleep ....
But it sure has brought out my sewing side!!
Momma has been CREATIVE ...
But he's worth it!!
Life of a Tubie Mom .....
And Noah has gotten into LEGOs a lot. He loves to build the Tardis and Doctor Who with his legos. We're thinking maybe will get some real Doctor Who Legos for Christmas - might have to whisper that in Santa's ear! (BTW - that's the Face of Bo in the glass dome)
But Nathan got sick...... The Story of Staph. And we thought he got a Staph Infection .... but there was more to the story ....
Meanwhile, Noah was doing great with his braces!!!
Nathan on meds and yogurt for the - what we thought was - staph infection.
But then this happened :( :( :( And this was some seriously scary biznitz .....
The second I saw that temp go up to 106 at home I panicked. As soon as DB got home we were out the door to the ER with him. They honestly didn't believe me on his temp - not - at - all. They were like ho-hum..... oh you mean 100.6 .... I said "No, I mean 106.2" and they just didn't believe me. They got him back in triage and did his temp ...... 106 ......... HOLY SHIT - boy people started moving. Take off his clothes, take off his blanket - let me get a wash cloth and some ice. His poor little heart rate was so high and he'd cool down and jump right back up to 106.
I always new when his temp was going back up because his heart rate would also. So we'd have to uncover him and ice him up again .... He had a wash clothe on his head, and an ice pack on each side. Even his blue dragon got an ice pack for his wing.
Just when they were going to release him, thinking he was done spiking, it would happen all over again. And they were debating over sending us home or sending us to Seattle - and the last straw was when he spiked again and started to throw up. Then they were like, Bye... have fun in the ambulance.
So we were taken to Children's Seattle .... Mystery Diagnosis Day 1
We got there early the next morning, after spending most the day in ER .... we ended up in the ER at Settle Children's and then after a few hours were moved to a room - where we were put in isolation.
Yep. This made things a little harder for me cuz - I couldn't use the Family Lounge - so I couldn't bring food in and store it, and I couldn't go in there to get my own ice, so I constantly had to ask the nurses to get me ice (which seemed completely ridiculous cuz I'm an Ice FANATIC)... so I just felt like a pain in the butt.
However, they just couldn't figure out what was wrong with my little man. They run a MILLION tests it seemed... ultrasound, x-ray, blood work.... stool samples.... urine tests .... tons of stuff. And everytime they would come in - he would look at me and burst into tears. It was HARD. All I wanted to do was make it better.
MYSTERY DIAGNOSIS DAY 2
MYSTERY DIAGNOSIS DAY 3
MYSTERY DIAGNOSIS DAY 4
Day 4 is the day that I realized that his whole body had a reddish tint to it. Mostly his upper body. They kept commenting on his strawberry tongue. The mentioned Scarlet Fever, but his strep test (oral swab) came back negative. So then they were talking about Kawasaki disease, and that's what they were leaning towards. There is no test for it, it is rather one of those - eliminate everything else - type of disease.
MYSTERY DIAGNOSIS DAY 5
MYSTERY DIAGNOSIS DAY 6
On Day 6 he ACTUALLY started to feel better! You could see him start acting more himself and perking up. The fever finally stopped spiking and he was a lot more comfortable (and DEMANDING) .... he was eating just a little bit still - but anything was an improvement .... and he wanted to get out of bed!
His favorite thing to do was to ride his IV Pole. Ha ha.... only, we were still in quarantine and could only dance around his room....
MYSTERY DIAGNOSIS DAY 7 (and Day 8 at home)
Daddy and Kaedyn came to pick us up, we couldn't get out of there fast enough!! I can never get over the fact that Kaedyn is soooo much bigger than Nathan ... On Monday, we had a follow up with his pediatrician .... and finally got some answers as to what was wrong!!
ANSWERS & Allergies
He ended up being allergic to the med that the hospital sent him home on - OYE ....
Things just kept continuing with the whole - Nathan is always sick thing. A...l....w...a...y...s.... But Nathan's tummy was so tender and they were thinking he was having some reaction with his liver because it was enlarged (higher numbers) in the hospital. So they wanted to keep an eye on it.
Raingutter Ragatta for the scouts!! The boys didn't place (boo!)
Went in for a check up and - WOWZAH - he's gaining weight!! We put his official pre-surgery weight at 29 to 30 lbs, so we just figure from 30 .... so 6 lbs so far!!
Can I just say that I looooooooooooove it when he lets me play with him. LOLOLOL ...
Noah, in true Noah style .... of not complaining unless he's in - going to cry it's so bad - pain.... went in for an Orthodontist appointment and the discovered that one of his springs had slipped and GROWN INTO HIS CHEEK ... see the L shape or < shape in his cheek there? They took everything off his brackets for a couple of weeks so he could heal. Oye!!
Because of a few things going on with Noah, we wanted him to get in and see the Neurologist. Due to his mental age being a lot less than his actual age. So both Noah and Nathan went in to see Dr. P ... he adjusted Nathan's migraine meds a bit and listened to me about Noah and asked him some questions. He said it was pretty clear to him that Noah has ADD and Aspergers. I was a bit taken aback...
NOT because I didn't expect it. More like....... I was mad at myself for not pursuing it better. I have always been on the fence of my thinking he was somewhere on the Autism Spectrum because of his behaviors. I knew - with in a few years - that Nathan had Autism. Infact - just before he started walking at 2 I knew he had it. It was the constant spinning and flipping. It wasn't just because of him seeing sensory either. But Noah I would think "oh he absolutely has it" to "nah, he doesn't."
He got blood work done too and he was NOT happy about that ....
So I went through and I did all the tests the DR wanted me to do for him.... he was a level 2 "Very Likely" on the spectrum. Depending on how they scored the other one, it was if it was over half - and either way it was... .and of course the other one, he was positive for ADD and Anxiety ....
Minion ....... my mini Minion ......
Since the surgery and being in school - it doesn't seem as if he can catch a break!!
But he does have a sense of humor!!! He stole all the Orange Soda for himself (only the one he's holding is open) ....
But we really try to make this Tubie thing fun. Sometimes, he just can't resist, he has to shoot me with it..... what a boy.......
And we have a lot of fun doing these!!!
Again he just can't get a break .....
Noah was the Eleventh Doctor for Halloween - I think we did pretty good!
Above his belly just can't seem to clear up. Below .... what we do ...
The boys for Halloween
Pink Eye!
Another Tardis and Doctor by Noah
Seriously - this is why I get up every morning. These kids are my heart.
Yes - he watches over him ...... all the time. That's Gallifrey.
Who needs a DR?
More Faces!!!
Noah has taken a huge interest in drawing :)
Oh yes, and we are drawing on the FEED BAGS to keep things interesting!!! You can check out our 2014 Feed Bag Drawings (we only started in November)
November Feed Bag Art
December Feed Bag Art
Hey Mom, sick for Christmas???
These two are the best of friends. They are definitely "Twin Like" without being twins.
Chocolate Lucky Charms
At the Tacoma Mall ....
Joys of a Tube Feeding Mom ...... get bathed in meds......
Goodbye 2014!
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