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.

Prematurity

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As the mother of two premature babies (Noah was 1lb 12oz and Nathan was 3lbs 4oz) ... I had to share this emotional video ...

Light It Up Blue for Austim

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Our Family is all in blue today :D
Incase you were unaware .... 

There was a group gathered outside the White House .... and the Empire States Building is lighting up blue along with 1000 other buildings World WIDE .....

Even Seattle is starting to Light It Up Blue! Starting with the Childrens Museum!  Some area businesses seem to be taking part too!


Change your outdoor lightbulbs to blue, wear blue - whatever.... SUPPORT Autism Awareness Month ... 

If you want to PLEDGE to "Light It Up Blue" I hope you do so...



And a HEART felt message from Nathan (incase you can't tell, he's doing a heart with his hands)  He says I <3 Autism Support!

The Last Month with Noah

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Everything has been going well with Noah, other then the fact that his hearing has been getting worse. It seems like everyday it's a constant chorus of "what?" "huh?" and blank stares as if he's trying to hear you but just can't make anything out of it.  We noticed that he has started to read lips, if you make him look at you, and repeat yourself....  he'll get it.

It's hard to watch him struggle like that.  He is getting his hearing checked again soon, but it doesn't seem like it's soon enough.

He hasn't been so sick, that he has had to be hospitalized, since 2007 when he almost died.  It's silly to go back, because he's fine now, but I will never forget watching him so sick, 103-104 temp, him throwing up, just being so sick he couldn't move much, him complaining about pain in his right side /... knowing something was that wrong and not having the doctors hear me, until I couldn't take it anymore, I was desperate, so when I went in for my DR appt 2 hours away I took him with ... and finally got someone to listen to me.  Thank goodness, or he'd likely to not be here.  They admitted him, ran a gambit of tests, his kidney's were failing and they were throwing a ton of blood out into his urine.  I remember standing at the movie cabinet next to the nurses station, they were passing around his urine sample around, had no idea I was his mom, they were talking about how it looked like apricot preserves.  Yep - it was that color ....

 They saved him.   One of the hardest days of my life was to leave my child in his hospital room, and then go down one floor to give birth to another.  The day Nathan was born, Noah was released from the hospital, looking weak and tired, but better.

That was the last time he was in the hospital.

Until the end of last month.  He was running a 103-104 degree temp.... and he was so sick.  Took him in and his blood tests showed an abnormal white blood cell count, and his urine looked like this .... mind you, there is a blue stick in there that matches the color of the cover.......

A lot of blood ....... A LOT ... not as much as the last time he was in the hospital... but enough to really concern me.

The DR ended up sending us home for the night.  He was concerned about him possibly having appendicitis, or something else going on.  So he wanted him on a liquid diet until the following day.  He wanted him to come back to the ER at 11am so that they could continue assessment of appendicitis.  If his blood work wasn't better, if he wasn't starving, etc, then we would run the CT scan or whatever it was he wanted to do to diagnosis it.

So we went back the next day ....

 He was more miserable on the 26th when we went back in, then he was the night before.  His fever was not registering on their monitors all day.  Kept reading normal or low grade ... and then, I pointed out to one of the nurses that he was burning the hell up, made him TOUCH Noah.. he did it the normal way, and although it said 101 ... I told him I didn't believe it, it was way higher then that.  I said "I hate to suggest it, but will you do it rectal because I know that's the most accurate way to get a temp" so he humored me.  Want to know what his temp was?!?  104.8!  Yeah!   His pulse was racing, his blood pressure was high ... they put leads on him...  to keep better track of his heart rate.... and Noah was so hungry when we go there, that they ordered him a lunch tray and he got this huge cookie on the tray, and he didn't even get to eat half of it before he said "Mom, I think I'm gonna throw up" I frantically looked through the cupboards and such for something for him to throw up in and all I could find was a bedpan type thing, so I gave him that and........ he lost it. Not to mention, they had to stick him 5 times to get blood from him the first time, three times for the IV, another time for blood draw, and then they realized they hadn't gotten ENOUGH blood so they had to come back and poke him again.  TEN TIMES he got poked that night... and a lot of those were digging pokes trying to find a vein.  He did okay for the first couple, then he'd get really anxious between but whenever they were doing the actual poking or what not, he was brave and not crying.  He was BRAVE .. and he was AMAZING.........  (pick below, trying to show the leads on his chest, and you can sorta see the IV in his left arm on the right side of the pic ...

Good news was - his blood tests were better and his urine looked clearer.  YAY ... but something was going on.  His kidneys were still spilling out a "large" amount of blood and his Kidney Docs wanted him to spend the night in the hospital for observation.  So after 9 hours in the ER we got transferred by ambulance to Seattle Childrens.  (Noah in the ambulance)

These were taken on the ride over.  Noah - who is always trying to smile for pictures, even when he's really sick.... 

 Here he is asleep with Max ... and his blanket....

 On the way over on the ambulance ...  they got the news that he had tested positive for Influenza A (which they took the tests literally right before he was put on the ambulance bed and we were put in the ambulance)  So from then on, it was mask time.....

 He was taken up to his room at 2am and he didn't fall asleep until 4am, I didn't fall asleep until 5 ... and we were up around 8...  he had been throwing up everytime they tried to get him something to eat....but by Sunday morning, he seemed to be holding stuff down. 

So we ended up going home on Sunday.  His kidneys had cleared up and it seemed that the flu was attacking his kidneys.  I think it's going to be something we deal with everytime he gets really sick.  He ended up being out of school the whole week due to his fever coming and going all week, and then ...  we all got a stomach bug!  Seriously!?!?  At first we thought it was us getting the flu, until Noah got it too.. then we knew it was something totally different.  And after a long week of hit, misses, and a car accident, he was out that whole week too.

Now he's doing good.  Even his hearing has improved again right now.    Because we moved (while he was sick) ... he had to start at a new school and he is doing fantastic there I think.

 His new Mascot is the Killer Whale... 

He had a follow up with endo and everything is looking good, and he saw Genetics ... so that he can be followed by them. 

When ever I sit and think about everything he's been through, I am always amazed and always go back to the fact that I was told before he was even born that he wouldn't live.  Yeah he has some ups and downs.... but he is doing amazingly well for the hand he was dealt.

The Last Month with Nathan

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So a lot of stuff has been going on with the boy.  So I'm going to update.

So - we were living in a bad situation with some "friends" ... our whole family was stressed out, we were basically only sleeping there until we found a place, and we were looking.  Then one night, things escalated and we didn't go back.  We ended up staying at my Mom & Step-Dad's...  and it was amazing to see the kids moods just lift :)

But sickness then ensued.  Nathan ended up acting like he wasn't feeling well.  (here he is sleeping and cuddling his Mickey)

I noticed that his eyes were really goopy ....  so ended up waiting until the clinic opened on Monday, and low and behold, the Monday we went to go in, was a holiday ... so it wasn't open.  So we ended up going into the ER...

 Having a blast playing on the iPad ...

 See how icky his poor little eyes were....

He also had an appointment with Neurology to discuss his migraines which he had been having again, it seemed.  (Hiding from the dark a lot, needing to cuddle/kangaroo, a lot of sleeping....) ...  and when we were explaining things to him, the DR said that with Nathan's medical history he was worried about seizures ... so he wanted Nathan's eyes checked, and an EEG done.  I had never seen him have a seizure, but I also knew that you can not know someone is having seizures.

Two nights before the scheduled EEG I was sleeping with Nathan on my Mom's love seat.  Something weird happened and I actually think he had a seizure that night, I really do think it was.  I was about to record it, when it stopped.  It is the one and only time that I know of, that it's happened, but he wakes up in the middle of the night all the time - upset - and we don't know why.  So who knows.  

What happened?

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.

So I called the Neuro the following day, and told the EEG people when he had it done. 

 Nathan is the "Frog" and the EEG lab is in the frog clinic ...

 Nathan playing games on the waiting room computer ....

 Getting the electrodes connected

 Wrapping up his head......

All connected ...

When it came time for the strobe lights, Nathan just laughed!  He thought it was the coolest thing.  He just laughed! Couldn't get him to fall asleep because he falls asleep with his hands behind his head, and he couldn't do that.  So he'd just get pissed off. 

The hour long EEG revealed nothing, so they want to do a 24 hour one, which is May 2nd.   I am hoping that if he is having seizures, that they pick up on it then. 

He had a check up with Endocrine to check to see how the HGH is doing and she was REALLY HAPPY with his growth.  So that's good news.  We see him going in spurts right now where he is really hungry and eats really well, and then when he's not so hungry and just doesn't want to eat.  Lately though, he has been eating like a champ and it's been so nice to see!!

His Autism (PDD) is doing okay.  He's still got major sensory stuff going on but he is doing so well in school.  He absolutely LOVES it...  it's a complete 180 from the school he was in before.  The preschool he was in before was very dull, not colorful at all, and just... he didn't enjoy it.  I donno what was going on there, but he didn't like it, and neither Dennis nor I did either.  Everytime he would go he'd cry.  We recently found out that the teacher is no longer working there either, not sure why, but she's not. This new preschool is amazing, so colorful.  Very welcoming, which is huge.  And his teacher is great.  Everytime we tell him it's a school day, he starts jumping up and down for joy.  We tell him he gets to ride the bus and he's excited.  HE LOVES SCHOOL.  Loves it!!

Then he had an appointment with Genetics too.  He saw DR. Glass.  So we would finally have answers on if his brain issues... and if it was Dandy Walker or Jouberts Syndrome, or something completely different.  We were going to finally find out what was going on with his last MRI.  He definitely doesn't have Jouberts Syndrome, I guess.  And Dandy Walker is questionable, his words were .... "It can be called at Dandy Walker Variant however it is all caused by the Russell Silver Syndrome I believe..." and then said he's rather call it some long doctor word.  So he doesn't really have Dandy Walker either, he has an under-developed vermis (in his cerebellum) or missing vermis ... and we also found out he has something called (we think this is what he said) ... Polymicrogyria ...  he said that, in a normal brain (which we all know) there is one fold, separating the left and right sides of the brain.  In the case of Nathan, along with the missing vermis, he also has a bunch of folds on the front of his brain.  Dr. Glass compared it to looking like a "bunch of grapes" ...

This is a Normal Brain

This is a Brain with Polymicrogyria

The last thing I wanted to talk about is that Dr. Glass said he conferred with Dr. M in WI (Nathan's Genetics Doc there) and completely agrees with her assessment of Russell Silver Syndrome.  Everything going on with Nathan, he said, can be linked back to the RSS. 

We are connected with a great group called the Magic Foundation, and they are having a conference this summer (which they do every summer) and we'd love to go.   But we just can't afford it.  I am debating tying to do some fundraising so that four of us could go, but I don't know if I can do it.  I really want to but...  I donno.......  UGH...

And to end with.... a few photos of Nathan "folding over" on St. Patricks Day...

Kaedyn's Surgery ...

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Kaedyn had his first visit with the dentist last week.... and it went just as we thought it would.   Sadly, Nathan had to have oral surgery.  His bottom 4 teeth had such bad decay that his awesome dentist had to pull them, and then he had the rest of his baby teeth capped...  this happened because of Nathan's high calorie diet.

When you have two babies, it's not easy to give them two diets.  So for the most part, they eat the same things.  We try to sneak things to Nathan, so he gets a little more, but it even depends on if he eats it.  They eat a lot of fruits, and love veggies.  They both eat that over meat. 

Kaedyn will ditch his cup if Nathan has something better, like Chocolate Milk, and drink Nathan's cup...  Kaedyn also acts like a vacuum and eats whatever Nathan has left over.  He is a scavenger ...  if Nathan puts something down, and Kaedyn sees it....  then ... it's his! 

We try to get Kaedyn to do better, but it just doesn't work.  And every time I brush his teeth, the gags ... so it's a negative response to a good thing - which to him - makes it a bad thing ...  which means that even though Nathan lets me brush his teeth, Kaedyn fights me tooth and nail ...  and I'm not kidding when I say it takes 3 people to hold the child down to get him to do something he doesn't want to do. 

So I try .. but obviously I am not doing a good job...

.... insert major Mommy Guilt..... 

So... over the past few weeks I have noticed that his front upper teeth were in bad shape, so I got him in.  And.......

Yesterday he had surgery ....  his top 4 teeth were pulled, the rest were fixed and capped.  Poor baby was miserable after, and he's still not eating much.  He is at least trying now, but .... he still isn't eating much ... and that is soooooooooooooo not like him.... 

He spent most of yesterday ....  sleeping, and then glaring at me....  then going back to sleep... then glaring at me....  then sleeping...