Quick Update

.Nathan's Surgery went well ...

First off ...... we didn't have to be to the hospital until noon .... we got here early ...  but ....  Nathan slept in the car.  Of course we got the "I'm HAWNGRY" ... lol...   It feels terrible telling a kid who has so much trouble gaining weight he can't eat... but he can't eat.... so he slept instead.....

Nathan didn't want his picture taken before surgery so Liam photobombed ....

So the surgeon came and talked to us and said that the surgery went well that the only issue was that his large intestines were swollen (and then he said "gassy") ... and he had to make an extra incision in order to move them so he could see...  but everything went well.  That he didn't want the tube used for 1 to 2 weeks...

They called me back into recovery because they just weren't sure what he was trying to say or if he was in pain or what....  

Anyway - I wanted to update that he's out of surgery and that he's okay.   I will update when I can but it maybe a few days to really get the good blogs up from his hospital stay and all that .... so bare with me.  I'm alone at the hospital with him.

Also, we have a fund raiser going for the boys - PLEASE check it out.  Please share it on ANY social media you have, even that simple act will help spread the word!!    http://www.gofundme.com/4t7h6c   <--- just copy and share that link!

Help and Share :)

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Once upon a time, there were two little Princes who were very special.  They both had special super powers!!  Everyone was a bit jealous of their special super powers, even the King and Queen and the other two Princes. 

Prince Noah had the super power to defy odds.  The Wizards of Health would say one thing, and he would prove them wrong!  The Wizards said he wouldn’t live.  He turned into the Boy who Lived. They said he wouldn’t walk, or talk, but he did both!  Every time they gave him a line in the sand, he jumped it, effortlessly.   It didn’t matter that he was born with extra chromosomes.  It didn’t matter what they said, the King and Queen made sure that he never felt as if he was limited.  So when the Wizards said he’d never touch the sky, he laughed, and climbed on the roof of the castle. He caught a cloud and pulled the sky to him.  

Prince Nathan had the super power of charm.  There was an evil curse put upon him, and he lost his voice and the ability to grow but there was a magical spell cast, too.  All Prince Nathan had to do was look at you with those beautiful blue eyes and you were captivated.  You realized this child was special and you really wanted to know him and be around him.  Amazed by what he could do being so small, he became the talk of the kingdom.  Everyone gathered to cheer and watch what this little Prince could do.  He did it all.  

The King and Queen would not tax the people, so when the Wizards of Health said the Princes needed something that cost bags of gold, they had to turn to the people to help with what they could.  They hated to do so because they knew that the gold the people carried was hard earned, but they had no other choice.  To their surprise, the people of the kingdom gave their hard earned gold.  The Queen cried, and King was amazed by the kindness the people showed.  Every copper counted!!  

So when the King and Queen were given the challenge to raise 600 gold in a week, to be able to use a magical talking device for Prince Nathan,to counter the evil curse that was placed upon him…  in hopes the Wizards of Health would later GIVE it to them, once it was proven the little Prince could navigate it and use it well… they had to turn to the people of the kingdom for their kindness.  

Would the people rise to the occasion with any copper they could spare?  Would they help spread the word if they couldn’t spare any?   They prayed for kindness, and love :)

Please help us raise $600 to be able to trial run the Nova Chat 7 Alternative Communication Device with Nathan in hopes that insurance will finally cover it.  You can donate here at FundRazr or donate directly to Paypal..  The boys have a lot of needs that insurance isn’t covering right now… and every little bit helps!  Even if you can’t help, we’d appreciate it if you spread the word!! 

If you want to read more about the boys, your can read more about Prince Noah and Prince Nathan … and here at My Unique Flowers. 

We are eternally grateful for your kindness and show of support. 

Oh, for those who can help, Prince Nathan has offered to come and personally tend to your horses!! 

iPad and Autism

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So I'm working on a presentation for my Multimedia class.   It's entitled: "A Day in the Life of a Technology Savvy Autistic Child."  It's basically just some pictures of Nathan watching TV, playing on the computer, playing on my cell phone.... watching the sewing machine... etc.  At the end, I added this video.

It's from 60 Minutes - about less then two weeks ago...


It's one of the things we're fundraising for.  The communication device, that makes sentences, would be AMAZING.  The sooner he gets it - the better.  We're also raising funds to get the conference this coming summer in Illinois.  Families affected by Russell Silver Syndrome and the leading experts are all going to be there, not to mention getting an appointment with THE leading expert on RSS to get medical advice on how to help him.

There is also an article here: How iPods & iPads Help Autistic Students

This is the App we want to get him.....  ProLoQuo2Go

Utter Excitement ... and then Defeat ....

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So .... I did hear back from Magic ... and we managed to get some help with the costs of the conference...  I got so excited .... mostly thinking we were going to have a whole bunch of help with the conference fee ... the hotel ... and some of the other "extras" ...  but we only got most of the conference fee covers, and one night of the hotel.  Not what I was expecting, but still helpful! ... And then, I just became completely defeated ....  everyone is struggling, and the help just isn't out there .... which I can completely understand.   And we don't have the money to fundraise like we should in order to raise the money ..... 

I really really wanted to get Nathan there this year, he had (or could have had) a guaranteed appointment with DR. H...  who is the leading expert with Russell Silver Syndrome, based out of New York City (where it would cost more to get THERE, lol)  ... and who can give us a treatment plan that will best help Nathan to grow.  Which is something I want to happen as soon as possible....  and waiting a year seems like FOREVER .... but, it's something we're going to have to do.   We'll have a year to save (if we can) and to raise money for next year. 

This conference is an ongoing yearly thing.  We don't expect to go every year, but we do want to make it there once.  Once so we can learn and get to know families and to get Nathan the help he needs. 

Anyway, so we have a nice little start to our fund-raising endeavors for next July :)  

But, I have been getting some emails from the foundation, and I have read (some of) them and ignored them, which is something I don't normally do.  But I was so excited about going and .... now, I just felt so deflated that I closed them with every intention of responding, but I didn't.  Not something I'm proud of.   But I finally told them last night, we're going to have to pass on the scholarship and appointment this year.  There just isn't a way to get there for us right now.  I mean, if we were in Wisconsin still, no problem...  but we're half way across the country now. 

It will happen.  If I don't get Nathan to Dr. H ... I am doing him a complete injustice. 

Currently.... Nathan is eating Cheetos... thanks to his older brother in his teenage wisdom who offered it to him for breakfast.........

and I do the whole "Pick your battles Mommy" .... cuz if I take them away, he's gonna scream.  

So he's eating his Cheetos and what happens, his hands get dirty - go figure - and then I have to wipe them.... right? to make him better...  and THEN he's screaming at me because his hands are wet....  ha ha ha ... never win...

Cheetos Face himself!

FUNDRAISER Update!!

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Well, we figured out we're going to need about $5000 for the whole family to go, either by barrowing my mom's van or going by train.  Ugh ... that is a lot of money to have to raise.  We tried to get free air travel from a charity that donates airplane travel, but they couldn't help us because it was to long of a trip.  I have also contacted Magic Foundation (three times!) but haven't heard anything back on scholarships for the conference.

We really hope that the whole family can go, it's just as important for my husband to be able to absorb the information as it is for me.  We are both really involved in the kids care.  They have special times too for the kids, not only to meet with other kids like them, but for the other kids to talk to other siblings of the kids with the medical issues. 

I have to be honest, I'm not sure that being able to raise the money this year is going to happen. We may just have to keep raising money through the year and be resigned to not going until next year.  I sure hope not. 

In good news though - we got our FIRST and SECOND donations this week!!  So maybe there is hope!!  Still have a LONG way to go but YAY!!

My "Aunt" of sorts, back in Wisconsin decided to hold an ebay auction for an ADORABLE Pottery-Barn bedding set, a tye-dyed pink butterfly crib set ...  it ended the other day...

 

And we got our first donation through pay-pal!!  Jocelyn, a blog reader, who is currently working on her PhD in a lab that studies intellectual disability and neurodegenerative disorders, donated $10!!  Thank you soooooo much Jocelyn!!  It means a lot!!  I actually did a double take when I saw the email! Ha!

I can't even begin to express how important this is to us! 

If you are visiting for the first time, let me tell you a little something about my boys. 

Nathan - age 4

The results of my 20 week Ultrasound showed he had a "cyst" in his brain.  He also had a 2 vessel cord and severe IUGR....  having already been through the "tiny baby" experience with Noah, I was scared, but I knew some of what might be expected.  No one told us that Nathan wouldn't make it like I was told with Noah.  However, from what I read, I knew it was a possibility ... again.   Through the last 4 years Nathan has progressed.  We found out he has a rare type of primordial dwarfism called Russell Silver Syndrome.  It causes a lot of issues, and we found out that all of his medical issues can be attributed to it.  From his thyroid issues, to his cleft palate ... from his slow weight gain and poor growth... to the way he looks and his Autism.  He has already been through a lot in his short 4 years, including several surgeries and tests that he didn't like one bit.  He just turned 4 years old, and he (to put it in perspective) is 22lbs and 35 inches.  He wears size 24 month clothes, and depending on what it is, he could go smaller.  For example, he could wear size 12 month shorts..... if he WORE shorts.  However I have to fight with him to get any sort of short sleeves or short pants on him.  If he doesn't have long sleeves and pants, he freaks out.   Nathan doesn't talk much, it's very hard for us to understand him.... he has words, but even his clear words we sometimes have to try to figure out.  It's frustrating for both him and us to communicate.  We've tried sign language but it takes him forever to get a sign.  I think, though, now...  he might do a little better.  So we might try again. With his Autism and Sensory Issues, I would love to get him Sensory toys, but some of them are so expensive.  I want to get him into gymnastics because he would do wonderful and is so flexible due to his low muscle tone, but we can't afford it right now.  And now, seeing him on a horse for the first time a few days ago...  I would love to get him therapeutic riding lessons.  But we struggle paying our rent and getting food on the table right now let alone afford any of these, or getting to a conference that offers us a wealth of knowledge and meeting the Doctor who knows most about Russell Silver Syndrome... We have no idea what the future hold for Nathan... and I worry, a lot...  but I love spending time with him, getting his little arms thrown around my neck and his silly kisses or pretending to eat my cheek because he's hungry...  He is an amazing gift ... 

Noah - age 9

Noah is most definitely my Drama King.  He is so sensitive, both emotionally and physically.  When I was pregnant with him, there was definitely something wrong.  After an amnio, we found out that he has a rare genetic disorder called Mosaic Trisomy 16. I was told he would die before birth, or shortly after - and if I brought him home - by whatever miracle - that he would be so mentally and physically delayed that "it wouldn't be worth it" and it was highly suggested that I "interrupt" my pregnancy with him.  In my head, I thought, "but I'm not 24 weeks yet, if you interrupt it now, then .... ooooooooh" and I understood in that moment that he was suggesting that I kill my baby ... and I flat out told him no.  I told him I would take whatever time God wanted me to have with the baby.  9 years later, you wouldn't know anything was wrong at first glance.  He acts like every other normal kid, however he's small for his age.  Always one of the shortest kids in class, and he has a hard time understanding things.  Recently he was diagnosed with Dyslexia, he's in 3rd Grade but at a 1st Grade learning level.  He almost died on us in 2007.  It took me several days before I got a DR to listen to me that something was wrong and it wasn't just a virus.  Sure enough, he had started to go into kidney failure, and even though they have healed themselves now, it is something that we will always have to watch.  He is constantly spilled blood out into his urine from his kidneys.  Noah may not have RSS, but he is small for his age and that is something this conference also covers.

And I realize that it's time for me to update Noah & Nathan's stories above ... 

Thank you both for the donations!!  Again - it means a lot to us!!

Fundraising on Ebay

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Photography for Fundraising

So I posted the offer of a digital copy of this, some original photography by me, on ebay - for fundraising.  So far, EPIC FAIL ...

We're going to do some finger painting also ....... make Nathan into an artist!!

FUNDRAISER!!!

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Some of you may know our family, some of you, maybe not so much. Our family is unique. We are a family blessed with 4 boys, however two of these boys are unique boys. Our 11 year old has an extremely rare genetic disorder called Mosaic Trisomy 16. During the pregnancy I was told he wouldn't survive, he wouldn't live…. But they were wrong. He was 1lb 12oz at birth and now he is 11 years old, still small for his age, ...but the most important thing, he lived! Proved that miracles happen.  He does have ongoing issues with his kidneys as he almost died in 2007.  And he has pretty bad hearing loss in his left ear, along with sensory issues.  

You can read more at  NOAH'S STORY ... and  NATHAN'S STORY STARTS & NOAH'S STORY (Cont)

Then the addition of baby #3 brought on more medical issues. We didn’t hear “he won’t live,” with him – maybe because they knew I didn’t care, because I would not terminate a child that God had blessed me with.

Nathan was 3lbs 4oz at birth, and he was diagnosed with brain issues, a high closed cleft palate, and various other things… then, after a few years we found out he has a rare disorder called Russell Silver Syndrome. It is a type of dwarfism, or growth disorder, and it causes a lot of issues. Nathan does have a lot of issues, he doesn't grow well - because of this he has daily shots of Human Growth Hormone. We have seen it helping. He has terrible night sweats. He has a really hard time communicating. Usually babies have a wonderful vocabulary by the age of 2 and with Nathan, we are both still getting super frustrated sometimes. Nathan also has sensory issues and was diagnosed with Autism. All these things can be linked to his Russell Silver Syndrome. Don’t get me wrong, Nathan is an amazing child, he is very smart and he can light up a room in a few minutes flat.  He also has severe Sensory Integration Disorder ... 

Click Here to read a continuation of
NOAH & NATHAN'S STORY CONTINUES ......

It isn’t easy having two kids with medical issues, or four for that matter, cuz Calahan has medical issues and so does Kaedyn, but not like Noah and Nathan... I know – things could be a lot worse. I could have lost them at birth, but luckily, I was blessed with these amazing kids.

Because we put our kids first, we don’t have any savings, we live day to day, trying to make the best of the money we have to spread over the cost we have. 

Getting to an amazing conference like the one the MAGIC FOUNDATION is putting on for kids with “SGA” (small gestational age) which both boys have, and most specifically Russell Silver Syndrome, which the DRs have finally settled on, we need to count on the generosity of others. With each year that passes and listening to families talk about what a GIFT it is to go because the kids are always amazed that they have found others that are JUST LIKE THEM.  I feel it’s so important to go and to not only have the chance to meet other families, and Nathan meet other kids that are just like him, but to be able to learn and educate ourselves about specific issues that Nathan faces or will face, along with SGA issues for Noah. In addition to all that, we’ll have the opportunity to meet the leading Doctor in Russell Silver Syndrome and maybe getting some line on how to help him better from her expertise. We have been trying to get to this conference since 2011.  We always hope.......... next year.

It is important to try to get to this conference, and if we can’t make it this summer, we will definitely keep the money in the bank to save up to go for sure next year.

Nathan just turned 6, but he is only the size of a 2 year old… 28lbs and 38 inches. He’s tiny for his age, but he has an amazing little man! Even though I am hoping to take both boys to the conference – this is more for Nathan then for Noah. 

In addition to the conference - there are a lot of expenses that insurance won't cover and we have to pay for out of pocket.  Example:  Pediasure, a higher calorie drink that Nate needs to drink 3 of a day.  Diapers, who knows when Nathan will finally be fully potty trained.  Medicine, insurance won't cover some of them, especially those that we can get over the counter, and getting them flavored so he'll actually take it.  Gas too and from the clinics an hour/hour & a half or more away (not to mention needing to eat those days.)  Then there are the sensory tools we have to pay for.  We need to get a Tablet for Nathan.  AND we very well may have to get his Alternative Communication Device paid for ourselves - it's already been denied once.  And there is the dental work that Noah needs - desperately - that insurance won't cover.   Everything adds up, and our money only stretches so far.  

IMMEDIATE NEEDS:

Nathan - Insurance is not going to cover his Alternative Communication Device.  Our trial with it has proven this is the way to go with him.  He caught on super fast and no frustration!!  Sadly, the device is over $5,000 out of pocket!  We REALLY need help!!

Noah - Braces.  Insurance doesn't cover braces.  This isn't a cosmetic need to straighten out his teeth, this is a MEDICAL need to fix his teeth, surgically bring down the teeth that are growing horizontally in his jaw, to fix the over crowding and bring out the teeth that came in behind other teeth.  His mouth is so messed up.  This is also going to be a huge expense.  PLEASE HELP!! 

Every little amount helps!!! 

Any and all donations will be used ON THE KIDS for these items they need.  Anything can help and will be appreciated.  If you would like a thank you note, please send me your name and address to my email.  (click on the email graphic) 

If you would like to do a fundraiser for the boys, yourself, please let me know & if there is anything you need.

Here is our fundraiser at Fundrazr ....  (click on the picture to be taken to the link) 

If you want to make a donation please contact me for the address, or if there is another way (Paypal -the donate button on my blogs - or doing your own type of fundraiser) you want to donate, please let us know!!

The Magic Foundation is also asking for donations - they are raising money to update our RSS Bible!   It is a great comfort and a great resource for parents of SGA and RSS and other Growth Disorders. 

If you want to read more of Noah & Nathan's stories, please click the links at the top of this page.