 |
| Packing in the car like Sardines for THREE DAYS! May 1, 2010 |
Right before we left Wisconsin - Nathan WAS diagnosed with {RUSSELL SILVER SYNDROME}. It's funny because ... you WANT to know what is wrong with your child, you want answers and you want to have a direction to help them..... but on the other hand, you also pray that it's NOT THAT .....
You always hope ..... NOT THAT ........ just because...... but we knew. We knew he had it. They had run genetic tests, which they couldn't find any genetic link, however, he has a clinical diagnosis. So may people who either have RSS themselves or have children with it - see photos of Nathan - and comment how they are SURE he has it.
He does..... so for two years, we've desperately wanted to get to IL for the conference and a meeting with the leading DR of RSS kids, to get a plan ... and we just can't get there. We need to do some fundraising, but with all the other things going on .... I just haven't had the time. So my goal is to get there in 2013!
We did some fun stuff - like we went to a
DEMOLITION DERBY and over to the SEATTLE AQUARIUM (
Part 1) and (
Part 2) and (
Part 3) and (
Part 4) .... we even had an amazing walk on the beach by where we lived ... it was a neat
DISCOVERY WALK while the tide was low.... there was always
KITE FLYING & ICE CREAM IN THE PARK ... we lived right by the park and took advantage of it..... oh and I even got to
TOUCH JACK SPARROW'S WOOD ...
ANYWAY ...... We had a good ol' time trying to get in sync with new specialists and general doctors and ... don't get me started on insurance.
But we DID it .... and we're pretty happy with it.
 |
| August 2010 right before dental surgery |
Also in August 2010 ... Nathan had to have
{dental surgery}. He had caps put on ALL of his teeth. Due to his high calorie diet his teeth suffered badly, and I noticed.... so I got him in and .... well.... I first mentioned it here:
Nathan's going into surgery ...and... Thursday Random Babyness ... I updated with pictures here:
Nathan's Oral Surgery Update .... and showed off his new teeth here:
New Teeth and a Visit to School .....
 |
| That's it - I'm outta here! |
 |
| After surgery :( He got so sick.... |
I swear his new teeth made him look older too...
 |
| Nathan and his new teeth |
September we explained the
TALE OF HUMAN GROWTH HORMONE .... Nathan started therapy .... and I don't mean that of Speech or Occupational ... I mean the kind that involves needles due to
{Growth Hormone Deficiency} .. ...
 |
| HGH Shipment - Sept 2010 |
We went through
HGH TRAINING before starting the shots.... and he ended up doing okay. It's though EVERY SINGLE NIGHT ....... but he needs it.
He also had surgery ... he had the 2nd edition to his
{hypospadious surgery} ..... this time it was more intense. He still has the updecended testicle ... but they were more concerned with getting his urinary tract opening to the end of his penis....
 |
| Before Surgery September 2010 |
Here is the
Pre & Post Surgery Blog and an
UPDATE .... And also another
UPDATE after the surgery w/ a HGH Shot demo .. ha ha ...
2011
2011 was a busy year for us. It started out with Nathan being diagnosed with
{Autism}.
This wasn't a SHOCK to use - but .... it's never easy to hear your child has something - it doesn't matter if you suspect it ... know it ... or not. When you actually get the diagnoses... it's literally like a punch to the gut. Nathan was categorized as PDD-NOS ....
Then not long after ... Noah was ambulanced to Seattle Children's after spending a couple days in and out of the ER. His kidney's were getting pretty sick again .....he was throwing up and high fever ... just sick sick sick.... he was in the ER one night for many hours, and then in the ER the following day for 9 hours before they decided to ambulance him to Seattle Childrens. He was running a fever of 103-104+ ... he was spilling out a lot of blood in his urine, throwing up ... etc .... on our ambulance ride over they called - his test for
{Influenza A} came back positive. They admitted him overnight for observation, and then released him the following day... (
Read this Blog for MORE)
 |
| Day 2 in the ER - absolutely miserable |
 |
| In the Ambulance ... reminded me of the OTHER ambulance ride I had ... while I was pregnant with him, going to the hospital with the better NICU to deliver him... |
 |
| Mr. Influenza A .... in the ER at Seattle Childrens |
Right after the whole thing with Noah and his Influenza ... We were spending the night with my mom and I was sleeping on the love seat with Nathan and I thought he had a seizure. I brought it up to the Neurologist ... and he wanted EEG's done.....
The Seizure:
Well... he was sleeping, and he let out this whine, and it didn't
stop. Then he would build that whine into a cry and eventually he'd
scream, stiffen up completely - like a complete full body stretch, arms
and legs outstretched and completely stiff. Then the whole process
would start over. Whine, build up to a cry, scream, stiff, whine, build
up to a cry, scream, stiff...... I grabbed him and pulled him over on
me completely unsure of what o do, he wasn't responding to me, he wasn't
answering me or even looking at me like he normally does. So I had him
laying on me, back against my chest and belly and I realized while he
was doing the whine building up to the cry, he was also trembling. This
repetitive process went on for about 3 minutes before it stopped. Then
he turned around, looked up at me like "what am I doing on you mom?"
He pointed at his pillow, I put him over there, tucked him in ... and he
went right back to sleep.
The one hour
{EEG} ..... that was funny - Nathan LAUGHED during the part where they were doing the strobe lights......
You can read more
ABOUT THE SEIZURE AND EEG HERE .... Also around this time (also in this blog) we found out that Nathan doesn't have ONE
{brain malformations} - but TWO...
First in "
PART OF YOUR SON'S BRAIN IS MISSING" I talk about how we find out that it wasn't a cyst in Nathan's brain at all - but rather his "Dandy Walker Variant" was due to him completely missing the vermis in his Cerebellum .... and then later we find out that the front of his brain has more than the typical folds in his brain - his looks more like a bunch of GRAPES.......
 |
| Normal Brain - you have the one major fold in the center of the brain |
 |
| Grape looking brain, many folds (called Polymicrogyria) |
It's not all doom and gloom! We did a lot of fun things .... We went to the Seattle Science Center and saw the
HARRY POTTER EXHIBIT, the
DINOSAUR EXHIBIT, and the
BUTTERFLY HOUSE ......
 |
| Nathan in dino footprint March 2011 |
 |
| Noah in dino footprint March 2011 |
Nathan got to attend a great event called Corey's Day on the Farm and he got to ride horses, pet animals, eat, do hay/tractor rides. He LOVED it - especially the horses!!! I of course got some FANTASTIC photos of him....
 |
| Nathan on a horse at Corey's Day on the Farm 2011 |
 |
| Nathan on a horse at Corey's Day on the Farm 2011 |
 |
| Nathan watching the horses at Corey's Day on the Farm 2011 |
Noah
{broke his nose} in the middle of August of 2011. He had to have surgery Aug. 16, 2011. So, Sunday night (Aug 14th) ... he was going outside to play and instead of walking down the stairs, he thought falling down them would be quicker. By the time he got to the bottom and smashed his face into the cement - he realized it was a bad idea. He came upstairs a little while later, and I immediately could tell it was broken (Course Dennis argued with me on this.) **
To Read More and See More Pictures**
 |
| August 14 - Noah's Gumby Nose... |
How can you not see that's broken!! Dennis took him into the ER and even they "weren't sure" .... so they suggested I get him into the ENT ASAP and so Monday the 15th we went to an ENT and sure nuff, he took one look and said "it's definitely a bad brake, his nasal septum is mangled" and ended up scheduling surgery for the following day. So August 16th he ended up having surgery .... **
Read SURGERY Blog Here** ....
{Surgery} to straighten out his nose went well ...
 |
| August 16 - Going to Surgery |
 |
| August 16 - After Surgery |
And his nose has never been the same...LOL...
Shortly after Noah's surgery - we went to the ZOO, Woodland Park Zoo to be exact - they had a DINOSAUR exhibit there that was a must see for Nathan ..... and had a lot of fun!! Here are the blogs.....
PART ONE ....
PART TWO .......
PART THREE and
PART FOUR ... we actually had to stop our Zoo day because Nathan had had ENOUGH ......
 |
| Taking a Kodak Moment in the Dino Exhibit - Zoo August 2011 |
In September he got fitted for his hearing aid... (
READ HERE)
 |
| He got to pick out THREE colors for his hearing aid, so he picked Dark Blue and Black, and Clear with Blue Glitter |
 |
| Noah's hearing test, his hearing loss is the (blue) left ear |
And then at the end of the month he GOT his hearing aid!! (
READ HERE)
 |
| Noah and his new hearing aid - September 2011 |
Nathan also
GOT PROBED (<~ Blog Link) in September too. They did a 24 hour Video EEG on him.... checking for seizures ... nothing was reported ... but he did have a "possible" seizure that I noticed. It was very ODD AND SCARY ....for me... so far everything is okay though.
September 2011 - 24 Hour Video EEG
In December Nathan had his IEP Review and he got his COMMUNICATION BOOK at that time. Which was AMAZING but it's hard for us (his parents) to use - so we've been fighting to get him an electronic one. It does HELP but when he doesn't know how to get from one word in one category to another in another one .. it's hard... *
READ HERE*
 |
| Nathan's Communication Book |
2012
In March .... we went and saw the Autism Specialist ... and well, Nathan got in his office and started acting like a completely normal kid ...... he saw toys he hadn't played with and started building things and blasting off to Mars with the Mommy and the Daddy and ... well.... yeah, it was fantastic! It was to the point where Dr. H says "I don't think he's going to be on the spectrum much longer" ...... seriously - dude - you don't see him at home, you don't have to sit through his melt downs because he's over or under stimulated ... you don't see him revert into his little bubble and take coxing to come out .... you don't see 98% of what I do.... you see 15 minutes of perfect Nathan cuz you have cool toys!
Yep, that's what I got to say about that......
In April he saw Cranial Facial ... that was a loooooong appointment. After telling the speech lady the previous time we were there that he was losing air when he spoke (per his school speech therapist's urging) ... she was all "no he doesn't" last night and this time..... after some prompting and better cooperation ... she pulls out this stethoscope looking thing with a nasal aspirator on the end and says "so he's losing air when he talks" after telling use ten minutes before that his speech therapist at school was probably just hearing things... (slaps forehead) .. then the one Doc who decided he was going to solve the mystery of Nathan cuz he can't have RSS, agreed, he has RSS. But the biggest thing was that we were told the surgery for his cleft palate was a go. While they were doing that - they were also going to put new tubes in his ears and sew up his uvula so it works right..... he has a bifid uvula (looks like a heart hanging upside down) ....
 |
| Nathan's Bifid Uvula |
He also had a check up with Endocrinology and Urology in April.... at Endocrin I told Dr. M. how he wasn't dealing well with the HGH shots and because of the major anxiety it caused, we stopped for a few months until I could talk to her. Well.... his blood tests showed his current dose of thyroid meds were working (his thyroid levels were normal) but his HGH levels were NOT .... and he was definitely Human Growth Hormone deficient ... so we had to start them back up. It's not been easy - no one wants to hurt their child, cause them more pain and grief when they already have had enough - and on a daily basis at that. But we knew it's important. And at Urology - Dr. B. and I discussed how he's STILL not peeing out of the tip of his penis, it's more the underside right now. Not a major hindrance on potty training (the lack of success has to do with Nathan, not where his pee is coming out of) ... and he still has that undecended testicle ... so he wants to wait another year, and then it'll probably been another surgery for that.
You can read all the previous stuff in more detail and pictures in
THIS BLOG UPDATE
Noah didn't have a lot going on so far this year. He lost his ear piece for his hearing aid, and had to get a replacement. Shortly after that - he lost his ear piece AND hearing aid completely ...... so i finally called to order new ones and as soon as it came, Noah found the other one - so now he's got two - which isn't a bad thing cuz there will probably always be a lost one. He's had check up's with specialists and everything has been rather good so no complaints. You can read about it here in
THIS BLOG UPDATE on Noah.
Noah and Nathan both had dental appointments and both had clean bills of health ... YAY... Noah had NO CAVITIES ... Nathan didn't either but he has caps on his teeth, so he SHOULDN'T have any regardless....
EXCEPT .... Noah's got such a small mouth and his teeth are so big, he's having a major problem with "Shark Teeth" as I call it... his adult teeth are coming in behind or infront of his baby teeth (giving him a second row of teeth) .. So they basically thrust forth a list of orthodontists and said "here" ...
So we made an appointment with one..... and she showed us his Panoramic X-ray...
Noah has teeth growing sideways (both sideways horizontally in the gums - impacted, and vertically to come out of the gums, or the one tooth on the bottom that looks sideways is completely under-developed) ... from what it sounds like, he is going to need a lot of ortho work and it's going to be painful ... (crying) **
READ MORE HERE**
Nathan got to attend Corey's Day on the Farm again this year, and we also made sure to bring along Noah. It's a day for "Special Needs" kids. A chance for them to do stuff like ride horses, pet animals, do hay/tractor rides, etc..... just a fun day designed for them. I went on complete picture overload, but it's such an amazing day. You can start here at the first part of
COREY'S DAY ON THE FARM and all the installments (8 of them) are linked at the bottom of each entry so you can get to any part of the day from any entry.
 |
| Nathan and Noah at Corey's Day on the Farm 2012 |
 |
| Noah riding a horse - Corey's Day on the Farm 2012 |
 |
| Nathan riding a horse - Corey's Day on the Farm 2012 |
We had our LONG AWAITED
Alternative Communication appointment ....Nathan is going to (hopefully by Fall) get the Nova Chat 7 device!! We are soooooo excited because the little bit he used it during the appointment was like a major Hallelujah moment! You can see pictures and videos - just click on the above link.
 |
| Nathan and his Nova Chat 7 |
Nathan had his Cleft Palate/Ear Tube/Uvula surgery on May 25th ... You can read the whole story starting here at
PART ONE: BEFORE SURGERY and then
PART TWO: AFTER SURGERY continue to
DAY ONE AFTER SURGERY,
DAY TWO, and
DAY THREE/GOING HOME .... and there is a blog of the
TREASURES WE FOUND in the hospital....
 |
| Nathan after his cleft palate surgery - May 26, 2012 |
** FALL **
So, after Nathan's surgery Nathan failed his hearing test.
He had another one done recently and he failed that one, also. So he was fitted for hearing aids for both ears ... (sad face)
He'll get the hearing aids on November 15th.
Silly boy got pneumonia :(
November 15th - Nathan got his hearing aids!!! I totally forgot my camera so we had to take pictures with my Mom's cell phone. We also took a video and it's amazing. Put the hearing aid in and Nathan starts to say "WOW!" but by the end of it, he's saying it's too loud. You can read about the whole day and see the video here at:
PINK & PURPLE HEARING AIDS
For Christmas 2012 ... Nathan really wanted to take a trip to the ER. So he walked over to the fire place at his Nana's house and put his hand on the glass to the fire place.... yep. So off to the ER (after cold and a lot of crying) .... we went....
They dressed it and that was about it...
The next day ... definitely looked a little worse...
Below is day 3 ....
Day 4
Day 6 .... OUCH ... I got kinda worried about now because this just doesn't look right. But it was all okay ...
the
CONTINUATION OF N&N's STORIES!
This wasn't a SHOCK to use - but .... it's never easy to hear your child has something - it doesn't matter if you suspect it ... know it ... or not. When you actually get the diagnoses... it's literally like a punch to the gut. Nathan was categorized as PDD-NOS .... 
Noah and Nathan both had dental appointments and both had clean bills of health ... YAY... Noah had NO CAVITIES ... Nathan didn't either but he has caps on his teeth, so he SHOULDN'T have any regardless.... 
He'll get the hearing aids on November 15th. 
They dressed it and that was about it...
The next day ... definitely looked a little worse... 
Below is day 3 ....
Day 4
Day 6 .... OUCH ... I got kinda worried about now because this just doesn't look right. But it was all okay ... 
No comments:
Post a Comment
Comment Love is better than....... Chocolate!