My Unique Flowers

Bit through his lip.......

2011-12-19T19:49:00.000-06:00

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Noah has taught the younger two all those lovely boy things .... every little boy learns somewhere. Those things every mother wants to prolong as long as possible......

............ using the finger guns ...... or any other straight object that can be imagined into one...

..................... mimicing the moves of all those stupid shows on TV that teach little kids it's cool to go up to someone and kick them, punch them.... and put them into a choke hold .......

Teaching an Autistic child the "choke hold" thing ...... it's not cool.... they tend to think it's funny to choke anyone ... including the cat and dog .......

Oye ....

Anyway ....... Gremlin Kaedyn and Gremlin Nathan were horsing around in the bedroom. Kaedyn was on the phone with Nana at the time, and my mom said that Kaedyn had some maniacal laughter...... and then........ Nathan starts screaming..... Kaedyn told Nana something about Nathan trying to tickle him........

Regardless..... Nathan came out to me ..... with his poor little face all bloody. At first I thought he might have bit his lip or something....... but I didn't know....

HE BIT THROUGH HIS LIP .....

So I took him to the ER right away ... just incase it needed stitched or they could glue it...

(below) Pushing his tongue against it...

(above) Watching Toy Story and having to have the speaker right by him.... (below) ... being wrapped up like a taco so they could clean it out and glue it ...

Cleaning it out .......

Gluing it.......

All fixed ... bandaid on his face.... heehee...

They gave him some antibiotics and he's doing well now. This happened yesterday (the 18th of December) and here he is today .... (the 19th)

Nathan's I.E.P....

2011-12-18T21:42:00.000-06:00

Nathan's I.E.P. meeting went well. He has made some progress ... his vocab has improved a little but his speech therapist. They said that he's interacting with the other kids a little bit ... however, he still prefers to play alone or with Kaedyn. However, there is some interest there. They said he loves to sit in the reading corner and just read. They have noticed his sensory issues coming into play but not as often as they were at the beginning of the school year. Over all - he's doing very well. He has his issues, but he's an amazing kid - and they ALWAYS miss him when he isn't there.

I was super excited when they handed me his communication book!! We're not having an easy time using it... it's HUGE and it's a little hard to follow :( But I'm excited...

I have to say that his most ABSOLUTE FAVORITE thing to do is to sit in the swing....

He and Kaedyn play very well together :)

And here he is in his favorite reading spot :)

iPad and Autism

2011-11-17T10:53:00.014-06:00

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

Preemie Remembrance....

2011-11-17T09:54:00.001-06:00

November 17 - Prematurity Awareness Day ....

As many of you know, who read my blog regularly, I have had two premature babies.

Noah Alexander - born weighting 1lb 12.2 oz ...... 13 3/4 inches long.......... born at 33 weeks, the size of a 24 weeker ...

Noah was on a vent for the first 40 hours of his life, then proving all the doctors who said he wouldn't live wrong...... he was off of it!!

With Beanie Baby HOPE ... Noah at his lowest weight - 1lb 11oz at 3 days old...

His itty bitty foot in my hand ....

Nathan Patrick - born weighting 3lbs 4oz .... 15 3/4 inches long ........ born at 36 weeks, the size of a 31 weeker ...

Nathan was constantly under the bili lights ....... I called him my sunbather ... and he was tube fed because he couldn't get nippling a bottle ... thanks to his sub-mucus cleft palate ...

The picture below is of Calahan and Noah looking in on Nathan through his bed... the NICU actually loved this picture - stole it from me (ha ha ha) and asked if they could use it in future publications to talk about how siblings are integrated in the NICU ... of course I said yes!!

I am the Mommy to TWO Preemies! Two babies with medical issues. Two babies who game too early and too small. I've been in the NICU twice, and I've brought home two babies who were under five pounds.

Before having a preemie - you are so naive ... you know there is a world out there of babies who are too small, you know some of them don't make it ... you know it exists but it's the whole IT WON'T HAPPEN TO ME mentality....

It does happen ...

Then you become way to familiar with all the things that can go wrong ... brain bleeds, feeding issues, A's & B's... temperature holding issues, sensory issues, tube feeding, PIC lines, leads and daily weigh ins... not to mention the world of breathing tubes, oxygen... and RSV ...

It's not an easy world to enter into once.... let alone twice.

Educate yourself.... you never know if it could happen to you, or someone you love.......

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HIVES!!

2011-10-11T12:40:00.001-05:00

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Kaedyn is my mini-me........ I mean, let's face it, the kid looks just like me. ::: Looks around cautiously ::: He acts just like me too .... shhhhhhhhhhhh ..... but one thing I really HOPED he wouldn't be like me with was allergies. I'm allergic to EVERYTHING ....... and I'm not even kidding when I say that. Molds ... yep! Pollen, you betcha! Animals, of course! Soaps & stuff... of course!! Medicines ... sure, there are a few. Foods ... name a fruit, I'm probably allergic to it. I thought it was fruits AND veggies, but it's mostly just fruits. What aren't I allergic to?

Well, Kaedyn has been having small hives here and there through the summer, benedryl has become a nightly staple between his itching (oddly it seems to help when he's really itchy with his eczema) ... and his hives. I thought the hives were just an environmental thing... but last night, he was COVERED in LARGE hives and small ones. They were all over his back, his butt, his legs, his arms... I don't know when he got them but boy did he get them!!

Here are some pictures I took before Dennis took him into urgent care to document the case so we can get him some allergy testing. There are 4 pictures, the lighter ones are the normal ones, and then the identical ones below them are with contrast to make the hives pop out a little better........

This scares me. I have sooooooo many allergies, it's hard to know what he's allergic to. Especially since he didn't eat anything out of the ordinary yesterday that I know of - other then candy corn, but he had some of that last year. Dennis has anaphylaxis when it comes to lobster and other shell fish, to the point where he needs an epi pen.

Then I gave him the prednisone and benadryl this morning, and gave him a bowl of cereal ... next thing I know, he's throwing up. Then he didn't eat anymore. So I really think maybe his throat was affected too.

I called to try to talk to the Doc this morning. Sadly she didn't have anything available today, so I am talking to the DR tomorrow morning, first thing, and I'm going to get him in for allergy testing ASAP ...

Noah Gets His Hearing Aid

2011-10-01T20:54:00.003-05:00

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We went to Seattle because it was time to get Noah's hearing aid... Here he is getting his hearing aid programed ...

One of the things he got, Audo the Otter has two hearing aids...

Noah getting his hearing aid programed ...

Audo's foot, his box he carries around for his hearing aid and a book he got...

Bag of goodies...

Noah and his hearing aid

"Hearing Aid Care Kit - Ages 5 to 10"

Little better picture of his hearing aid on ...

Holding Max ...

He did really well that day. He was so excited to get it. I thought transitioning to it would be a breeze! We went through the training on how to take care of it, how to clean it, how to change the battery and how to turn it on and off, how to adjust the volume and how to put it in. We got out to the van, thought he'd just take in all the new sounds - hearing in stereo ... but he took it off with in 5 minutes. It was to much for his audio sensory issues...

Over the next few days, he was only able to wear it for short periods of time... but by the end of the week he wore it all day - YAY!

Kaedyn's 2nd Oral Surgery

2011-09-23T23:15:00.027-05:00

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Took younger boys in for their dental check up, and much to our dismay, Kaedyn's 2 year molars that had broke through after his first oral surgery were needing repair and caps.

When we got to the hospital we took a minute to watch the fountain ...

My handsome guy ....

He was NOT happy about getting undressed and the hospital clothes on...

He was kicking and screaming and fighting me, taking OFF the gown as soon as I put it on and I could NOT get the pants on him AT ALL ...... It was a rough day...

And me threatening him and telling him I was going to take pictures and put them on Facebook/my blog... didn't phase him...

But I did manage to get him to relax, only to have him flip out anytime anyone walked into the room ...

But we cuddled ...

THEN they gave him the good drugs ......

Why is it my kids get these drugs and they think playing with their tongue is the funniest thing in the world?

Then they got him ready to go off ... he insisted on taking his baby

I didn't get any pictures after, my arms were to full of baby and I was by myself. Kaedyn does not wake up well from anesthesia, he's very combative ... and then when we got to the point to go home, he started throwing up. So yeah, I was pretty busy ... but surgery went well, they got his teeth fixed and the caps on, replaced another cap and they didn't have to do a baby root canal on the tooth that was the worst, so YAY...

But he wasn't feeling well for about 24 hours or so .... :( He crawled into bed with us overnight and slept late

That's right, he was PROBED!!

2011-09-14T10:19:00.061-05:00

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For his 24 Hour Video EEG, Nathan was that is. We showed up with all our stuff and we were escorted to a room. The Children's Hospital part of Mary Bridge is lock tight, let me tell you. No one gets in or out without the nurses knowing.

At first he was okay with being there....

Kaedyn was great as long as he knew it wasn't for him!

However, when it came time to get the probes on .. or BUTTONS as we called them .... he tried to take a run for it.

The lady drew these smiley faces on his hands to help ease the process a little ...

Eventually he just sorta relaxed and went with the process ....

Kaedyn had fun occupying himself ....

tried to get Nathan distracted by reading a dinosaur book but he just wanted to hold it instead...

She let him hold the oxygen tube which they were using to "dry" the glue to hold the probes ...

Kaedyn was balancing the ball on the edge of the bed.

Covering his eyes for the ones close to his face

The relief he has in his eyes when everyone says ALL DONE!

Then she connected all the wires ...

He got this amazing mesh hat, it's going to be the next big thing in fashion, let me tell you!

He was sporting a wire & mesh ponytail!

Here he is eating dinner ........ gotta love kids who love their veggies!! Mine do!

Sleeping like the sweet angel he is....

Video of him sleeping & snoring .. lol...

The following day ... he slept just fine that night. I didn't, but he did. He chowed down on his breakfast .. .

When it came to leave (around noon) we stopped to look at the fun stuff in the room outside the elevators. There was an animated dinosaur ... and we all know how much Nathan LOVES dinosaurs! Here Nathan and Noah are checking it out ...

The huge aquarium ...

Nathan watching the dino ...

His hair was all kinds of greasy and gunky after they got the probes out ... it had to do with the stuff they used to get them off... took me a few days to get it all out of his hair...

Still don't know the results, won't until we see the Neurologist in November...

Say What? (Audiology Appointments)

2011-09-02T12:26:00.000-05:00

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So yesterday (Sept. 1) we were in Seattle most the day, again ... We left here super early because the last few times we went through Seattle the traffic was terrible. When my Mom takes us ... she drives more cautious ... Dennis grew up in a big city and can wiggle in and out of traffic a little more easily ... so I forget, it takes him less time. We left the house at 10:00... got to our Children's Hospital exit at 11:30 .... so we just kinda kept driving for a little while. Ended up at some Fred Myer to use the bathrooms, let the boys each pick out a book before they knocked each other's heads off...

So we leave there and get back to Children's a few minutes before 1, when Noah's first appointment was. He had to see an ENT quick to make sure his ears looked clear and un-infected, etc ... so that they knew they could do the hearing test and get accurate results. That took all of a few minutes ...

Then off to Audiology Room we go ...

So .... this is the audiology computers and the window on the other side looks into the sound proof room where they put the kids for the tests.

Noah's testing came first, and she hooks him up to the Tampanagram machine, and when I called it by name and knew that if he had a flat result we had issues in his ear with fluid and when he got a normal result I was happy! She was all impressed .. LOL.. with my knowledge of what would happen and explaining it to him and what not. I kept telling her, we'd already been through this all a lot, and she was still impressed with how informed I am...

So after all was said and done, this is what Noah's hearing results looked like...

The red marks/lines with the circles is the results of his right ear which is completely normal. (You want the results to fall between 0-20 at the top of the chart. His were all between 15-20.)   The blue marks/lines with the X's ... are his normal hearing test results with his left ear. The first two are normal but the rest are all ranging from mild to moderately severe hearing loss.... the half square looking marks (backwards boxed C's) are the nerve/bone results where they place a device on the bone behind the ear and it tests the nerves and ear bones to see if the problem is with in the ear or in the nerves and bones .. or both ... and as you can see, Noah's hearing loss isn't just in his ear but also the nerves and such... so she gave us the news, he qualifies for a hearing aid for his left ear.

Oh my ....

I kept being told the appointment was for hearing aid fitting ... and I kept thinking .... yeah right ....   yeah right on me I guess.

Noah was scared at first, but the lady told him he'd have a little computer for his ear, he kinda liked that idea. First, she asked him which model of hearing aid he liked better, and he picked the smaller one of the two - not because it was smaller ... but because it was blue...

For the actual ear piece .... (the example she let Noah see)

she gave us the examples of all the colors it comes in and told us that he could pick out up to 3 colors to swirl together....

So he picked out the blue (closest to the booth B tag) ... black, and clear w/ dark blue glitter...

here is a little bit closer up of the clear with dark blue glitter

Here is the ear piece next to the hearing aid....

And then she started to get set up to do a mold of Noah's ear so they could do his ear piece ... here is her tub of goodies ... where she got the molding goo from

that pink and clear little device, it looks more sinister then what it is, it's just to apply the goo to his ear...

Here she had put a little piece of foam in his ear (pretty deep) and this string she wrapped around the top of his ear to pull it out - in his case, it came out with the goo ...

Here he is with the goo on/in his ear...

He was really worried the stuff wouldn't come off (or out) of his ear ...

And here is Nathan's results, again - normal range is 0-20 ... his normal hearing test is the S marks with lines, and the little - marks above are the nerve/bone results. His hearing loss isn't in his nerve/bones like Noah's is those were with in normal range.

Nathan's Speech Video

2011-09-02T10:33:00.000-05:00

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Example of Nathan's speech - much of what the speech lady at Children's heard.

August Update ....

2011-08-30T22:17:00.003-05:00

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I haven't updated in a long time...... I took a blogging break over the summer, for the most part. After realizing there was NO WAY we were going to get to the conference, I honestly had a moment of ... grief, I suppose that's a good word. I really wanted to get us there. But the conference has come and gone, tons of families in our network went and I saw all sorts of blog posts & pictures .... it was all bittersweet ... seeing them with one another and then thinking, Nathan should be in that picture.

:: sigh ::

Kaedyn has been running a 103 to 105 temp fever ... it has been driving me INSANE ... from Thursday night to yesterday (Monday) ... I have been sleeping with a burning up baby in my bed and we don't have a big bed. Barely have room for Dennis and I ... add in a big baby and ... well... I don't sleep much. He has been MISERABLE ... you can see more from my other blog with .... 104...IS NOT A GOOD NUMBER and 104 ... IS NOT A NICE NUMBER x2 ... Thank freaking GOODNESS that he's FINALLY feeling better. Hubby took him to the DR yesterday while I was on my way to Seattle with Nathan .... the DR confirmed she thought the same as the Urgent Care Doc on Saturday, that it's just some virus that ~~is kicking his ass and not leaving names~~ he can't seem to break threw... but GOOD NEWS is .... he has finally broken the fever and is starting to feel better.

ALSO ...... Noah broke his nose this summer!!! CRAZY!!! You can read about that one my other blog right now .... ANOTHER BROKEN BONE and NOAH'S SURGERY ...

I guess at the DR .... the nurse took Kaedyn back, and mind you - he suffers from clingontomommy syndrome ... and he had just watched me walk out the door without him, just before leaving with Daddy... so he was still in that gonna break down and cry at any moment cuz I want my mommy area... and the nurse said to him "Boy, o' boy, I know who your mommy is just by looking at you" HA HA HA HA HA .... and my poor little boy just burst into a bubble of tears with the pathetic "MOMMA" whines in there. Yep... ha... oh and apparently the DR thought my note was funny cuz I put as a "symptom" ... super crabby & and really clingy ... ha ha ....

Anyway .... off to Seattle I went with Nathan yesterday... for once I took no pictures...   We were going to the Cleft Palate Clinic to find out what our options are. Nathan's school speech therapist told me towards the end of last year that he had air escaping when he was talking and she figured this was due to his cleft palate ... at the time we had the appointment made for June, but I had a brain fart and thought it was a couple days into the week, and it was on the Monday - oops. So we had to reschedule it.   So we did .... it's been long awaited because after Nathan was born (they discovered the HIGH SOFT CLOSED CLEFT PALATE we were told then or the SUBMUCOUS CLEFT PALATE.... we're told now. One of the Doctors turned around and looked at me and said "He definitely has a submucous cleft palate" and I'm thinking ... why else would we be here.

Oh and let me back up a bit...... what is it with every Doctor wanting to solve the mystery of Nathan!?!?!? One of the Docs took one look at him yesterday and asked me "who diagnosed him with Russell Silver Syndrome?" I told him, the Genetic Doc in WI and Dr. G confirmed it here ... "Genetically?" he asked. I said ... "No, clinical diagnosis" and he's all "Well he doesn't fit the classic RSS guide line" and I'm thinking - is this guy serious??? Then he's like "If I come up with any bright ideas, I'll let so-and-so geneticist know..." and didn't even say HIS geneticist .... and then "We'll figure it out" .... like he's going to be the genius to suddenly figures it all out ... the mystery of Nathan ...

SERIOUSLY!?!?!   UGH .......... yet another Doc not wanting to believe his RSS diagnosis ......

Anyway - Nathan first had an ultrasound of his kidneys and bladder done (all was great) ... and then he had appointment with Craniofacial Doc #1 ... DR. C ... Dr. C was the one who is going to figure out the mystery of Nathan. He is the division Chief ...   He came in, took a look at Nathan's cleft and humm'd and hawwww'd ... and then he said that Nathan would have to have surgery for his cleft. I asked "He'll definitely need surgery?" He said "yes" ... then I asked how invasive it was and he says "Not invasive at all, we do it all the time, he'll just need a night or two in the hospital at the most...." ... yeah that's not invasive at all ... it's a walk in the park.... he (or his med student) asked me about "have you thought about doing the tube feedings" and I was like... "It's been brought up but I don't see how it would help given the history of the other RSS kids.." ... he's all "how so?" ... "Well, lets see.... all the kids his age if they have g-tubes or not, everyone is still the same weight ... I don't see how it's beneficial ..." Yep, that's right. Not gonna subject my kid to that when I don't see how it helps any of the kids ...I have fought to hard to work with him to eat normally to throw it all away. Now if he was losing weight and there were other issues, I might consider it, but I don't see any benefit to crossing that bridge... oh and he was talking to his intern and said "You know how palates are straight? His is crocked, and then there is a bump, and then there's like jagged areas and ..." Guess his palate isn't very pretty ...   but his dangling heart is one of the prettiest ones around!!

Speech comes in ... Mrs. L ... she sits an arm and half length away ...Nathan is GROWLING words at first, and then I get him to say a lot of things by reading The Very Hungry Caterpillar ... she eventually says that since he can say "Bubble" and "Purple" and "Go" and "Daddy" that his speech issue is NOT due to his Cleft Palate ... ooooooh-kay? ... that's what we've believed all this time. Since it hasn't really get better other then his favorite words. I should have explained to her that those are the words we work hard on because it's some of his favorite things.... She umhummed and ah-huh'ed everything ... and then asked a few times when he started speech therapy .... A FEW TIMES ... so was she not paying attention? And then she says "I don't hear any evidence of him losing air when he talks" and I'm thinking ... you never got close to him and he wasn't exactly cooperating! She says "I think he has a disorder called Dyspraxia" .... where the muscles aren't connecting correctly with the brain and he can't seem to form the words properly. It does take him a long time to master a word, and it takes a long time for him to master one sign (ASL) ...

So I don't know what to think....

So when Doc #2: Dr. P (the Clinic Chief .... so which is a higher position, the Division Chief or the Clinic Chief?) peeks in, she starts blubbering off things like .. "I am pretty sure he has SEVERE VERBAL DYSPRAXIA" and I'm thinking ... why didn't she tell me she thinks it's severe? I can't help wonder if this is due to his brain malformations? So when she leaves, he takes a look ... listens... shows his intern Nate's beautiful bifid uvula (upside down heart shaped uvula) ... So this Doc says that surgery is iffy .... then says, because Nathan had tubes put in his ears, and one has fallen out - the other is still in place ... (he had tubes put in NOT for ear infections but because he has thick fluid build up in his ears and can't hear) ... he says if he doesn't pass in the ear he has the tube out of, then surgery is going to be necessary and if he does pass, then it probably won't be.

The other thing that was brought up was an Augmentative/Alternative Communication Screening to see if an alternate form of communication could be beneficial to him ...

Um........ DUH!

So .... some of the options are of course American Sign Language

but he doesn't have full motion in his hands so signing is hard for him AND he doesn't pick up on signs very well ... He does do the following: More, Go, All Done, Thank You, Eat, Please, Play, and we've worked on Bath but he doesn't have that down ...

Another option are Communication Boards

I have seen this implemented in the school system - they are these cards that the kids can point to what they want - or closest to ... and you can better understand what they are trying to say. I actually talked to the Special Education person at the school district building today and told her what they said yesterday (about the possible speech diagnosis) and she said she'd talk to the speech therapist at his school and since we already put that (the communication boards) in his IEP, they'd try to start doing that and get us some for home too. YAY! Who knows when the evaluation will take place and so ... I want start using this stuff asap because he is getting increasingly frustrated when he can't get across what he's trying to say.

And in doing research I saw this little device, which looks really interesting ... instead of having a book of cards, this little device holds them... it's called a MINImo device...

At the end of yesterday, Nathan had to get his blood drawn ... I almost forgot about it....which I'm sure Nathan would have LOVED ... but right before getting in the elevator to leave, I remembered ... ha ha ... Poor Nate... Anyway, we check in and wait and wait and the guy calls us back with a little boy who's gotta be just over a year old... not much smaller then Nathan (sad) ... and he takes us back ... tells them to go in one room and us to go into the room directly across the hall. That little boy was just screaming which was making Nathan extremely anxious, and making him cry. Once the guy was poking that poor little boy (could tell by the change in screaming he was doing) Nathan was signing every thing he could to let me know HE DID NOT WANT TO BE THERE ANYMORE AND WE COULD GO NOW!! He was signing GO and ALL DONE and he was doing this ... it's a new one, from watching America's Got Talent to much - it means STOP ... LOL...

Top one is with his socks on .. he's doing an X ... bottom one I manged to talk the socks off of him for a moment, had to put them right back on after...

He is so funny. The guy came in and Nathan was just freaking out at that point... and the guy FLICKED it into his vein... I'm serious, he just flicked it with his finger!! Although he didn't really say a word to Nathan, he didn't try to comfort him in any way - infact, when Nathan was screaming from fear and anxiety, they get was laughing.... kinda pissed me off... but I got so distracted with the flicking of the needle....I didn't know if I should be appalled or impressed....

In other news, today - Noah's kidney Docs wanted to check out Nathan's kidneys just to be on the safe side... the ultrasound and blood test were for that... and I got the call today that everything is A-Ok and they don't foresee needing to see him anytime in the future. YAY!

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

2011-06-07T11:35:00.000-05:00

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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!!

2011-05-12T12:18:00.000-05:00

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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

2011-04-23T19:27:00.000-05:00

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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!!!

2011-04-20T20:41:00.001-05:00

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 9 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 9 years old, still small for his age, ...but the most important thing, he lived! Proved that miracles happen.

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, 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.

It isn’t easy having two kids with medical issues, but 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. We debated going this year, but I feel it’s 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 about specific issues that Nathan faces or will face. 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.

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 4, but he is only the size of a 2 year old… 22lbs and 35 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.
Thanks for reading this.

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

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

Prematurity

2011-04-13T19:19:00.000-05:00

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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

2011-04-02T20:38:00.000-05:00

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

2011-03-30T16:06:00.001-05:00

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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

2011-03-21T16:18:00.000-05:00

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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 ...

2011-02-05T00:36:00.000-06:00

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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...

Nathan getting on his Bus Video

2011-02-05T00:10:00.000-06:00

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Here is how excited he gets when the bus comes. He can't get there fast enough....

Baby Kaleb - Shaken Baby Syndrome Survivor...

2011-01-24T22:21:00.000-06:00

In May 2007 .... one of the worst nightmares a parent could have happened to one couple.... Their beloved son, Kaleb, who was their pride and joy, was hurt by the person they trusted to take care of him.

If you aren't familiar with the story... here is the story ... (this is copied from a website)

As told to me by Kristy. Forgive me if any details are incorrect.

Like any responsible parents, Kristy and Josh Schwade wanted what was best for their only child, Kaleb. They did a background check on their day care worker, and even interviewed her in her home for two hours. Kristy was even willing to drive 20 miles out of her way to provide, what they thought to have been, "optimum" care in a good neighborhood.

On May 9th, 2007 their worst nighmare was brought to fruition. After being in the care of this home day care worker only five times, Kaleb was picked up by his Grandmother and Aunt. They noticed that he was lethargic and experiencing obvious breathing abnormalities. The caregiver told them he was ill, but Kaleb had just visited the doctors the day before and was given a "clean bill of health". When Kristy arrived at her mother's home to pick Kaleb up, she described him as "having no life in his body". She tried repeatedly to wake him, but with no avail. She and her father got in the car and rushed to the hospital. While in the vehicle, Kristy lifted Kaleb's little eyelids. She noticed that his pupils were different sizes. Being the wife of an EMT, she knew immediately that this was the sign of a head injury- Kaleb needed IMMEDIATE care. They stopped at the nearest firestation. The ambulance took him to the nearest hospital, and he was classified as a "trauma alert". He was then life-flighted to Tampa General Hospital, and was admitted to the Pediatric Intensive Care Unit (PICU). He was diagnosed as having Shaken Baby Syndrome. They also discovered that he had been SMOTHERED!

Kristy is not currently working, and she and Josh spend every possible moment by their young son's side. Medical bills, cost of gas, lawyer fees (I assume they will begin building), and general living expenses are mounting.

When something happens to your child, your world STOPS. Suddenly it doesn't matter that your "roots" are growing out and you are getting split ends. It doesn't matter that your neighbor is parking his dumpy car in your parking spot. You no longer care that someone cut you off on the highway, or that someone jumps infront of you in line at the grocery store. Nothing else matters but your child.

Kaleb is their world. The doctors. The PICU. It's all that matters now.

This family is not asking for anything other than your prayers.

This situation has become widespread because a friend of Kristy's decided to forward her bulletin asking people to pray for the family. PLEASE support them by spreading the word about this page. The more people who are aware, the more people who have the opportunity to bless this family.

Thank you for viewing this page, and for supporting Kaleb and his family.

Oh, and many of you have been concerned whether or not the sitter has been charged. YES charges have been pressed, but she is currently out of jail on a $5,000 bond.

Below is Kristy's original bulletin posted shortly after the incident.

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Hello everyone...

I write you this message in grief in faith.

My son Kaleb was rushed by ambulance to the emergency room on Wed. after we picked him up from the babysitters house. At UCH they determined that Kaleb had a SubDural Hematoma (His brain is bleeding). He then was Bayflighted (helicopter) to Tampa General Hospitals Pediatric Intensive Care Unit on a Trauma Alert.

Doctors determined that Kaleb was shaken while at the homecare he goes to. He is suffering from Shaking Baby Syndrome.

When we first arrived at the hospital they put a pressure gage into his head to moniter the Intercranial Pressure (The pressure that the brain is under due to swelling and Bleeding). He wasn't doing too well all day yesterday, his pressure in his head was ranging between 29-40 and the normal pressure is between 5-20. So doctors decided that the best thing to do was to put a tube into his brain to drain spinal fluid from his ventricle. This procedure was a sucess and brought the pressure down.

Today however, they did a Cat Scan and saw that Kaleb is now suffering from a stroke and has formed a new bleed in the brain.

I believe in Miralcles! I believe that prayer works. I am asking you, all of my friends, whether you know me well or not to PLEASE pray for my little boy Kaleb. He needs a miracle and we need your help!

I know some of you may not believe in God... But he exists! And he's already performed one miracle. Please I ask you, I beg you, to Pray for my little boy and my family. He is my everything

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I followed the story closely, writing Kristy several times.... My heart broke for them, I had just had Nathan right before this happened... and I prayed a lot for that little boy. I was excited on the good days, and worried and sad on the bad days, praying all the while.

The babysitter finally ADMITTED to what she did to Kaleb, and it was finally all over in June 2010.   Ex-Day Care Worker Pleads Guilty In Shaken-Baby Case ....

Tonight - however .... just a few hours ago......... Kaleb became an Angel.

Kaleb's story touched so many people, touched so many lives.... grabbed so many hearts... on Myspace and Cafemom.... and anyone who heard the story....

Kaleb feels no more pain, but his poor parents are missing him greatly.    Kristy posted this on her Myspace:

Kaleb's last update. Jan 24, 2011

Hi Everyone.

First off I would like to say thank you for all of your prayers throughout the years.

Kaleb went to heaven today at 5:08pm. He is now an angel and has been given the strength to walk and run and play with the other children angels. His death was very quick and he seemed very comfortable. I cannot express the gratitude for all of you and your support throughout the years. We find peace knowing that Kaleb is in heaven with Jesus and feels no pain.

Thank You

Here is a WONDERFUL interview done with Kristy August 2010 (the above picture was shared there) ....

The first picture I shared, was taken from Kristy's Myspace - from one of their fundraising events....... I thought, it was fitting.

Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night.
Do not stand at my grave and cry,
I am not there; I did not die.

Kaleb - I hope that you are running and laughing and talking up a storm! Enjoy Heaven baby boy!! You touched so many lives!!

Article: Surviving Special Needs ... by ME!

2011-01-24T00:26:00.000-06:00

Surviving Special Needs

It’s funny, some days, how people perceive you. Some days, people look at you like you gave birth to a monster, and others, people feel the need to tell you how strong you are. What they don’t understand is being a parent of a child with special needs has nothing to do with strength.

I personally dislike the phrase “special needs.” Every person has a few special needs, a certain type of bottled water they prefer, the need to feel superior, or just those who enjoy not being noticed. They are all special needs an individual has to cope with feeling comfortable. My children, they are unique!

My middle two boys are my medical miracles. I have one child born with a rare disorder called Mosaic Trisomy 16, and was only one pound twelve ounces when he was born. The Doctors, I was told later, pretty much had no hope of him having any quality of life. However, he is 9 years old now and proved them all wrong. Does he have hurdles, of course he does, but nothing like they tried to make me believe he would. Then my 3 year old came along and he has what seems like a never ending list of medical stuff going on, from Autism, to missing part of his brain, to having a type of dwarfism, and more. The thing I hear the most:

YOU ARE SO STRONG!

Yeah, not so much! It has nothing to do with my strength. It has more to do with supporting my

children and being there for them. Doing everything that needs to be done to make sure they have a good life. Having a wonderful support system, and finding outlets for myself and my family to create a type of normality. Most of all, it comes right down to love. LOVE is the key to it all, you’ll do anything for love.

Most parents of kids with unique issues would give anything to trade places with them, to protect them from the pain, and let them live in the innocence that most children get to experience in whole. Most of us don’t break down until we’re behind closed doors, because we don’t want our children to see how much it affects us, because it’s not about us. All parents just want to protect their children. Unfortunately, those of us who have unique kids, we have to sit back and watch them go through things no child should have to. We have to be their biggest cheerleader, their support, their parent, their friend, and sometimes their nurse.

So what about us parents? How can we survive all this and not just fall apart. It’s all about a few key things.

· Trusted Doctors

· Wide Support System of Family & Friends

· Taking some ME Time.

And when one of those things isn’t in place, everything just feels off balance, so it is important to find that balance.

If you don’t like your doctor, keep looking! We have gone through a few that we didn’t like, but for the most part, we have found a lot of wonderful people in the medical field. Having that support system is very important. Family, Friends, Church, even strangers will come up and offer help, there is nothing wrong with taking it! It is sometimes hard to do, but you will need to take it. Practice saying YES, instead of NO … followed with “we are doing okay.” It’s okay, to not be okay! Finally, finding some time for yourself is usually the hardest. I know I’ve gone days where I don’t eat and it suddenly dawns on me when I’m not feeling well at the end of the day. It’s hard to take time for us when our children needs us so much. Read a book, take a bath, play on Facebook, find something that is selfish and just for you, for at least twenty minutes every day. Even if it’s after your kids go to bed, and making yourself take the time before you go to bed.

The last thing I suggest is starting a blog. It may not be for everyone, but I suggest it mostly so you can get out some of those pent up feelings that you don’t want to let out, because it’s not good to hold that stuff in. It can be a private blog, for just your eyes, or a very public one where you share it with family and friends to keep them updated. If writing is not your thing, that’s fine. Just do it for yourself, most of you will find it therapeutic. Who cares if no one but you reads it, you aren’t doing it for readers, you are doing it for yourself. If you go public with it, it’s also a great way to get awareness out about your child’s medical issue. Even if you go public, you don’t have to use names, or locations. Give your family a cute nickname, call each of your kids something else. Information you share is up to you. And there are places of support for bloggers for Unique Families. It’s always nice to be able to talk to other families who understand a little, or a lot, on what you and your family might be going through.

Most of all, take time to capture memories with your children. Photos, mementos, maybe even start a scrapbook. It’s amazing how fast they grow up, how much they change, and it’s wonderful to sit back some nights and just take a walk down memory lane.

Our children are everything to us. It’s amazing how, once they are born, it’s not about us anymore, it’s all about them.

Nathan got a Package!!

2011-01-18T23:55:00.000-06:00

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Nathan got his box today from Auntie Jenna!! He opened it up....

Video of him opening his package....

His lap pad ...

Playing with what Auntie Jenna calls "Fuggly the Dino" lolol...

We were saying the letters on his Lap Pad

Having some Play Time...

He just LOVES the stuff!! And he's VERY picky about what he sleeps with, what is around him or on him at night, especially on him.... if I cover him up with another blanket other then his beloved Banks... then he will 75% of the time, wake up with in 5 minutes and scream or throw it off.... tonight, I put the "snake" by his head, and he had the dino, and I put the lap pad on top of him over his blanket.... didn't... hear...a ... peep... from him!!

3 hours later, he was still laying there............

First Bus Ride... NO TEARS!!!

2011-01-18T23:14:00.000-06:00

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Nathan started school - for the second time - last week. Incase you didn't read about it - his first preschool was very dull and not very inviting. He went through some testing for his speech, etc, and he got put in a great classroom with a great teacher, the room is really inviting and welcoming. It's a small classroom, so he has more one on one attention right now. Well, even though we aren't in that school district, because he's on an IEP he can get bused there because that's where the school district placed him. So....today was the first day that the BIG BUS picked him up.

All morning I was fretting about how he was going to take it. I was expecting tears, clinging and especially him shaking his head and telling me or yelling NO .... I never expected what happened!

To begin with, I talked with Nathan... told him he'd be meeting a new friend, and how he'd be riding on the bus, and trying to prepare him for it.

So when the bus came, and I opened the door.... HE RAN before I could even get my shoes on....

By the time I lifted my camera.........

He was all the way down the sidewalk.... threw open the gate and everything.... he didn't bother waiting to get his jacket on or get his backpack, he was just gone!! Then he stood right outside the door of the bus and waited....

And when he opened up the door, Daddy was just catching up to him with his jacket and backpack...

Daddy came and grabbed the camera and took pictures of him from the other side of the bus, where his seat was. He said he was waving "Bye" in this picture...

Little Man....on a BIG BUS...

The last picture I took ....

Kaedyn and I cried........... seriously, we cried.....

And then when he got home.... Little Man getting off the bus....

Going down the bus steps all by himself.....

He got off the bus and turned around and looked at it like "Can I get back on now?" and then when I directed him to the gate, he paused ... like.... "this isn't what I had in mind" ...

Master Noah had pop'd out of the house and asking "Nathan did you have a good day?" ...

And then the sweetest moment...........

Seriously though, he seemed to have an AWESOME day at school. It THRILLS me to the core that he's doing this but it scares me to death too! Which is so silly but he's getting big but he's still so little. He's almost 4 and still just the size of a 1 year old to 18 month old.... But he is doing AWESOME and what parent wouldn't be PROUD!!!

A Major FIRST!

2011-01-17T00:21:00.000-06:00

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Thursday (1-13-11) on his 3rd day at his new Preschool .... Nathan almost made me cry! They trace their names every morning in school.......

This is something we've always worked with Nathan one... we usually use the magnetic doodle strips, or just crayons and paper.... whatever.... but we're always doing this with Nathan.... saying each letter as we write it....

So this isn't something foreign to Nathan...

So the first day, I helped him write his name.... his hand inside mine.... me working the letters...

Day two....... Daddy said that he helped him (like I had the day before) but that Nathan had done the last N all by himself.......

So ...... Day Three....... I didn't touch the marker at all!! He was so excited to be at school, you have NO IDEA how much this just thrills my core. It's amazing to see him enjoy school, because he didn't at the other school. And so I let him take the lead........ he picked up the marker, and I helped him with the cap... and he wrote (traced) his name..... all.......... by.......... himself!

He doesn't exactly finish his A's but... hey.... for a first time all by himself, I say ...... it's PERFECT!

Sensory Spot ....... er..... SOCK!?!?!

2011-01-17T00:10:00.000-06:00

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So I hate folding socks...... hate it ....... H.A.T.E. I.T.

So I have socks in a big ol' mesh basket thing with all our un-matched socks in it. Most days I can be found digging for socks for everyone who doesn't have any in the morning......

Well the other morning Nathan (who was not wanting to get dressed) decided to make his own sensory play .... and I couldn't help but let him, and laugh ...

Weight Sensory Items

2011-01-17T00:00:00.000-06:00

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So ..... Nathan has been diagnosed with Autism now, officially - even though.... we've suspected it for a long time, it's still....... hard.

One of the things I've noticed, is my wrist pad for my computer, I don't have a gel one, I have one with beads in it. So he constantly is swiping it from my desk and wearing it around his neck, kinda like a scarf....

So I already get that the weight thing is a soother for him......

So ...... after the "official" diagnosis ... I was doing research and came across the Weight Blanket .. and I thought, that makes sense!!

So one of my best friends .... my sister from another mister ... muahahhahahaa..... she just started to sew and she LOVES it.... she even started a blog to chronicle her new adventures! Adventures of a Sewing Noob

so I asked her if maybe she wanted to try her hand at making some weight items for Nathan, who is her Godson. (Well, Nathan has 4 Godparents, and so does Kaedyn.)

So ...... she was all over the idea and started to look up items also ...

So she made Nathan a few things. One she filled and we have to finish (I think?) and the others we have to fill and close up :) This is what she did...

Here is the snake she made...

Here is the dinosaur she says she mangled... LOL.. but she knows how much he loves dinosaurs and she did a quick cut of one...

Here is the lap blanket that she made for him, which I have to say....... I absolutely LOVE!!!! It made me cry, I was so touched that she personalized it.

The stitching around his name...

So Mom and I went out looking for some beads and such to fill stuff with. She started looking at patterns too and we picked up a couple ... The first one is for a sling so I don't have to cocoon him in my blanket all the time, and I can have something to take with. The second one is the fun blankets we're going to do, Nathan wants the dino (of course) and Kaedyn is going to get the turtle eventually.... and then the bottom one is some animals we are going to do like the snake. It's going to be important to have different ones depending on his mood, and also have a couple in different places.

So we picked up material for Nate's blanket, and this is what he picked out....

So, the dino material he LOVES ... he's been using it around Nana's house. Nana is thinking about just making him a blanket out of it... instead of the dino one.. and then the red and purple were ... he tried to talk us into pink, because he seems to like pink a lot... but I talked him into purple which is the color he seems to love....

So I can't wait to share the finished products :)

"Part of your son's brain is missing...."

2011-01-13T01:08:00.001-06:00

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Imagine my shock........ when the DR said that today at his appointment. "According to the MRI... he is missing (some) of his Vermis" ...

Vermis, btw ...... is Latin for "Worm"

Part of my son's WORM is missing ......

::: deep sigh :::

We have known there were issues with Nathan's Cerebellum since before he was born. His 20 week ultrasound showed a cyst in the brain that they quickly labeled as Dandy Walker ... It was confirmed after birth, and everything else, and he's had a few scans over the years...

He just had an MRI done with in the last two weeks.

We haven't gotten the results yet. We thought we had a Neurology appt but it turned out it was a Neurodevelopmental ... and we had the Autism Clinic set up for today, which was further in the process then the other one would have been ... however, I really liked the DR.

So ....... issues with the cerebellum.... that part of the brain has a hand in the following things.... motor control, balance, cognitive functions - such as attention and language, emotional functions such as regulating fear and pleasure, coordination, and the sensory systems.... The Cerebellum is the pink thing under the brain on the picture below...

So ... today, the DR says to us "He's go the Dandy Walker, right?" and I said yes.... he asks a few more questions... and then says something about "cleft palate" and we're like, he has that. He's like... "hummmm" ... ya know how DRs do that .... and then he says that it's possible that Nathan may have something called Jouberts Syndrome rather then the Dandy Walker. Apparently Dandy Walker is sometimes mistaken for what turns out to be Jouberts Syndrome .... ('it's French - Joe-Bears) ...

We don't really know what this means for him...... but he's going to start seeing a DR who specializes in disorders of the cerebellum....

Then he tells me that (I'm not sure if he said part of, but I think he did) .... part of his Vermis is missing...

Now, I don't know if they didn't see the missing piece until this scan because he was previously to small... or if they didn't mention it... or what.... but no matter ... I didn't automatically go to part of my son's brain is missing cuz he has a fluid filled cyst in his head..... years ago.......... so this - indeed - came as a HUGE shock to me today. HUGE.

I could cry ........... huge!

What does this mean for him? I don't know. It's OBVIOUS his autistic symptoms stem from his medical issues, but in order to get some services he needs, he really does need the diagnosis. Regardless of the reason why, he has autism.... and I have a broken heart....

A-U-T-I-S-M .... how it changes everything...

2011-01-13T00:38:00.001-06:00

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Today ............. I officially became..........

Isn't it amazing how one word can change your whole world. Don't get me wrong.... I mean, we've been expecting this for the last 6 months, questioning it for about half of Nathan's life. About 18 months ago, we suddenly realized that the the funny spinning he does, the hiding in whatever small space he can find... wasn't just him being cute.... that.... his lack of eye contact at times wasn't just him being shy.... that his needing a routine was more then comfort, and that his melt downs were more then just temper tantrums ...

It was obvious to me, even if he didn't have "classic autism" he was somewhere on the spectrum.

It was OBVIOUS .......

And we've spent time just hoping we were wrong........... but knowing, deep deep down .... that it was right.... it fit....

A couple days ago, we were at the DR and he laid down on his back and just started to spin around in circles .....

He melts down, he needs to be wrapped up in his blanket or my blanket and held real tight and he'll calm down, he folds over when he's uncomfortable....... like this ...

Which is what he was doing today, along with being held in his blanket....

Today ... it became official... he is on the low end of the spectrum but he does have PDD .... Nathan has officially been diagnosed with Autism and ......... even though it was expected, it crushed my heart....

Nathan's First Day of Preschool.... again....

2011-01-13T00:36:00.000-06:00

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So yesterday (1-10) was Nathan's FIRST day in his new preschool......... he goes in the afternoon!

Of course, being in the afternoon........ during his possible crash time............ we run into this problem... he... fell........ asleep....

I woke him up and said "Nathan, want to go play... .want to go to school? It's time to go to school" and he said "NO" and started to cry. Luckily we had a few moments to hang out before going into his classroom, so there was a lot of cuddling and a lot of reassuring and a lot of coaxing... but he did NOT want his picture taken......

And there was a lot of him cuddling into my neck...

Lookie his little backpack.......

Sitting on the curb pouting ....

But we got inside and he just cried and cried and cried.... I showed him his picture and name on his hook... and he kinda liked that but wasn't really impressed..

Nathan's stuff on his hook.....

He didn't want to write his name, so I helped him trace his name... and then it was time to color, and he didn't want to do that.... so I colored the apple, and I tried to get him to help me color the fire truck, but he didn't want to do that, and his teacher colored his cherries... and ... he wasn't interested at all .... but when his teacher said "okay, it's time for playdoh" his FACE LIT UP ........ he loooooooooooooooooves Playdoh!

That was the turning point for him. He started to have a little fun. Then it was Circle-time... and music ... and his hands were clasped over his ears most of the time. I got such a kick out of the days of the week song .... it was in the tune of the Addams Family ...

If you haven't heard it ......... here it is......

I ended up staying for the first hour (it's 2 1/2 hour class) ... and then I managed to sneak out ... and he apparently had a wonderful time for the rest of the day.

Nathan was worn out when he got home. He fell asleep with his cuppie of root beer (a treat) ... he slept ALL night too - we woke him up to change him (PJs and diaper) and to give him his pokey - but he went right back to sleep.

Today was his second day of school and Dennis took him. He said that he got really excited when he saw the little trailer that is the temporary housing for his preschool room. He went into class... he wrote his name and even did the last N on his own and did it like a champ! His Daddy was super excited and impressed with that. (We write his name a lot with him) ... and just over all he had a great day it seemed. AND when he went to pick him up, he creeped in and saw him excitedly PARTICIPATING in this song.......

Which is one of my FAVORITE of all time songs from when I was little and in school! I am so excited that he didn't cry today (like he did everyday at the other school) ... and that he is participating in the songs...... it's amazing to me and excites me so much!! I love that he is enjoying school this time around, that we found what I hope proves to be a WONDERFUL fit for him! So far it seems that it is!!

Nathan's New Preschool

2011-01-13T00:33:00.000-06:00

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So ....... we had visiting Nathan's new preschool and filled out some paperwork. We visited twice ... he and Kaedyn would have a blast playing in the room. The room was BRIGHT and COLORFUL and WELCOMING .......

Nathan had started preschool earlier in the school year, just after his surgery.... at another center, and it was alright, but the school room was not very colorful and it didn't seem all that inviting... He did NOT want to go to school, every day he would cry and cry and cry when we'd leave .... and it was hard..... to leave him.

To be fair, he started school shortly after surgery and that probably messed pretty well with his immune system. But he went a couple days, got sick for several days, went a day or two, got sick, went a couple days and was sick for 3 weeks....... so I took him out. It was just to much being sick.

His new classroom, his teacher says she's really "anal" and the kids even get their own playdoh to play with.. and the class is SMALL. So hopefully .... hopefully ....

But we can only HOPE that this time... it'll be different and he'll ENJOY his school this time around.

Kaedyn with the Ice Cream Numbers

Kaedyn is really excited about about the calender....

Nathan playing with the ice cream numbers, he even licked it... LOL...

their Rainbow!! Pretty awesome!!

Kangaroo Time!

2011-01-04T10:59:00.000-06:00

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I haven't updated in awhile. NOT because the boys haven't had medical stuff going on, but because we have been struggling in WA a lot! The transition just hasn't been easy, from WI to here. We love the hospitals here, the treatment that Nathan has been getting, and the other kids... but the cost of living is killing us.

Regardless, I'm trying to be a lot better at updating. I know there are friends and family out there who are wondering how the kids are doing medical wise, so I promise I will do better this year at updating!

I had to laugh this morning, I had 25 unpublished comments this blog! SERIOUSLY!?!?! I rarely look at my Dashboard so I just didn't see them.... and they were ranging from recently to ALL THE WAY BACK TO JUNE! HA! Oops.... (Cartoon me has a bunch of hearts floating above my head from all the love I feel though!) ..... teehee...

So...... Noah has an appointment in Seattle tomorrow, and I have to call to reschedule some appointments for Nathan, and find out what exactly is the hold up for his Autism Clinic because it was suppose to happen in December. Most likely - it is because I never turned in any school questionnaire ... which was never done, because HE REALLY DIDN'T GO!! He went for a few days, then got sick for 3 weeks. This was after he didn't start on time because of his surgery!

Oye-vey......

So .... Nathan has times where he just cries and cries and cries... the only way to calm him down really is to do the kangaroo ..... I really regret getting rid of my sling....

I end up sitting on the corner of a blanket, and then tucking two corners behind my back to make it tight, then he usually wiggles around and flips about inside the blanket. Sometimes he'll go in the blanket and completely stay covered up, head and everything ... and sometimes he just likes to be all tight in there with his head out. And it has to be my purple blanket... well... usually. His favorite color is purple. Usually he'll either cheer right up, or with in a half hour he'll be better and smiling.

We are constantly finding him in places he shouldn't be... he managed to figure out how to open our dryer one day, and heard him yelling - found him in there with the door shut. The hard thing is, he opens doors! We put baby locks on a lot of doors but he still manages to somehow get the things off and then opens the doors. He's a smart little stinker that makes our lives difficult sometimes. He runs out in the streets and he has left our house without us knowing he left. Now, mind you - we realize this in a few moments that he's not where he's suppose to be, and then of course, instant panic! It's hard. I don't know what to do, right now I just try to make sure I know where he is ALL THE TIME. Right now, he's on his couch watching cartoons and Kaedyn is laying beside me and Daddy playing with my cell phone (he's singing the alphabet) ...

Anyway - the other day while at my mom's she brought down an empty container to put away my Mom's Christmas Village she puts out on the mantel of her fireplace. We both had gone in the laundry room for a second, and this is what we came out to.

Any small confined place he can find, he's in........

There are just things that strike me hard and I keep saying, as much as I want to be wrong, he HAS to be on the spectrum somewhere... this isn't just a stage thing for him. ::sigh::

He had an MRI done this past week too, he has been getting his migraines more again and it's been awhile since he Dandy Walker Cyst was checked.... We don't know the results yet, but any prayers that they are good would be welcome :)

Update on Nathan....

2010-10-19T12:09:00.000-05:00

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We ended up getting Nathan home and things were hard for about 2 weeks. Every diaper change, every time he even THOUGHT we were going to change his diaper, he would start to get anxious and cry. The diaper changes were painful for him. We managed through them though, and by the end of the time he had the tube in we'd start getting the 2nd diaper on him and we'd go "all done" and he'd instantly stop crying and go "all done" himself. Very cute, but always heartbreaking.

He immediately started to potty train after the tube was taken out and he is a Potty Training CHAMP!!! He is peeing in the potty very well, he's wearing underwear all day when he's home and he rarely has an accident. The only thing we can't seem to get him to pick up on, doing stinky in the potty. Once we get him to understand he has to do that in there, he will be potty trained completely. But right now he's got his potty jar (treats when he goes) and a pile of underwear he loves to wear, and he's happy.

Both Nathan and Noah had appointments with orthopedics ... we were told by the kids Ped that Nathan's records say that his Ortho in WI said he had Scoliosis... and then the radiologist based on the x-ray said he did not. So I was all confused. Good news is, third opinion .... he has a nice, straight back... no scoliosis. 2 against 1.... I'm removing it from his diagnosis list. However, Cal does have it.... phhhh ... Noah's tone issues are still really bad. She said she doesn't see any point in casting this feet because she was sure it really wouldn't solve the problem. This goes beyond tone issues in his feet and ankles, and lower legs. He has pretty bad tone issues from his hips down. She also noticed that he had the shorter leg without even measuring him. So she wants him to see the skeletal dysplasia team. They also want Nathan seeing them for his tone issues, where Noah is extremely stiff, Nathan is super flexible. They also want Nathan to see the Neurodevelopment team because of his speech issues.

As for Nathan's HGH shots, he's doing really good. He knows he has to have that before bed, so he asks for it some nights. This one night, he shocked me! He saw that I had the easypod out warming up, and he comes up to me, he crawls up on my lap, reaches over, next thing I know he has the paper backing off the needle container and is handing it to me. LOL... apparently he was ready for it. So I ask him, and then he gets up on his Dad's chair and leans over the back of it.....assuming the position!! So I asked Calahan to come take pictures because I know some friends and family have asked. Now, we have to give it to him in his bottom because that's the only place that he's got enough fat build up so .. I blocked out some of it ... but here he is that night...

Here he is assuming the position ... he actually started to take off his clothes when I wasn't moving fast enough

we drop one side of the diaper and no one ever sees the needle, you push a button on the top and that electronically puts the needle down...

This is while the shot was going on...

Afterwards .... he gets to put the needle (in it's container) in the sharpie box...

And then we have to put the whole thing back in the fridge ...

(I apologize for my husband's messy desk! LOL...)

4:30 AM Update on Nathan....& 8 AM Added

2010-09-21T06:50:00.002-05:00

After dinner last night, he kinda took a turn. The IV had been unhooked (not taken out of his hand, just unhooked so that he was not connected to tubes on that hand) ... and he was doing so well after eating. Then he was starting to hurt, and you could tell. He started to complain about the Pulse/Ox on his left hand and the IV in his right hand and the lead wires connected to his chest, he couldn't get comfortable and he couldn't move around because of all the wires and tubes.... there was no calming him down. They brought in pain meds for him, some liquid Oxycodone and liquid tylonel. He took both like a champ, but the last little bit of tylonel made him gag. I ran off to find something in the linen closet outside his room that they give access to the patients & families (xtra pillow case I think) and I came back in, he was throwing up. It was all over again, so we cleaned him up, changed his gown, his pillow... luckily it didn't get on anything else. But he had just thrown up ALL his pain meds. So the IV got hooked back up, and the anti-nausea meds were given again, and then after a little bit we gave him his pain meds again, and on top of that.... right after he took his pain meds, he feel asleep ... thank goodness cuz now he's just MISERABLE!! .... and then about 5 minutes after he falls asleep the nurse comes in and says his HGH shot just came. Oye vey ... seriously? We figured he'd just be skipping it since we forgot the easypod at home. Nope... So she ended up coming in about an hour after he fell asleep and did the injection in his leg. He did good. Went right back to sleep after.

At 4:30 am ...they just came in to do his vitals and such, he is in so much pain he just doesn't want to move. In a way that's a good thing, but it's also a bad thing. So what's going on right now is that he's got a tube from his bladder to the diaper, a type of catheter... minus the bag. We're double diapering him. The inside diaper, holds the dressing right now for his penis, cuz it's still bleeding ... they are suppose to be cutting a slit in the diaper so that if he poops, it doesn't get on his penis, but they aren't. I'm going to ask them to start doing this in the morning because I would hate to have to clean that right now. And that way, it will also be support and not so much pressure on him. Then the outside diaper is used to catch the urine from the tube. He's going to have the tube in for 10 days to 2 weeks, then we gotta come back and get the stitch (or stitches) out. He has a lot of stitches from the base of his penis to the tip, but they managed to get the urinary tract to the tip (yay!) ... I don't know what we are going to do about school right now. His first day is suppose to be Wednesday but I don't know that there is any way he's going to be able to go at any point this week. The only thing I can think of is taking him for an hour or two and staying with him the whole time cuz I mean you guys just have no idea. I just feel so bad for him. On one hand I'm regretting getting it done, but it had to. His urinary tract was coming out where the penis meets the body, so it had to be done :( Anyway ... he's awake, and shaking cuz of the pain and he just wants his blanket on him (nothing else) ... He's still mad about the Pulse Ox being on him and the IV ... he's got something on each hand, and he doesn't like that at all.... anyway ... going off to play of Facebook or something. I have considered crawling in bed with him but he doesn't like any sort of tension on any of the cords (who can blame him) and so I just don't want to mess with him. So I'm just sitting right next to his bed, if he wants his head or back rubbed or anything. I'm not convinced they are going to let him go home today. :(

8:00 AM

Well, the Docs came in this morning, did their rounds and said he's going home. The nurses are going to come take out his IV soon (I hope) and they have to call the pharmacy and get a roll on his meds ... as soon as the meds come up then we can go home, but they expect that to take a few hours. We're completely out of money now though, and this hospital doesn't help AT ALL with food for low income families... so, we might have enough to get something small this morning, hopefully we can be home by lunch time. But basically we went through every penny we had paying for hospital food. If we get home around noon though, hoping anyway, that way Nathan can get comfortable at home before the older kids come home, and hopefully Bubby will NOT jump on him... and hoping Nathan will be less anxious ... every time anyone walks in the room right now he totally directs them OUT THE DOOR... LOL.... like "Leave THANK YOU" ... there was someone who came in to switch out the crib of our expected neighbor last night (who never came in, :x) with a bed, and Nathan got really pissed after I told him she couldn't take out his IV because he kept asking for her to take it out. (this is all gesturing for him that we can read, cuz he doesn't talk remember) ... So yeah... here is hoping we'll be on our way home soon. Bleeding has finally started to slow down, he hasn't thrown up since the med fiasco last night when he was in pain and upset ...and he's tolerating the oral meds just fine. Hopefully he eats great for breakfast! Anyway ... that's the update!

Nathan's Surgery ...at the hospital too...

2010-09-20T19:47:00.000-05:00

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Daddy, Nathan and I are all hunkered down in the hospital room right now, watching Blues Clues and being AMAZED that he's actually eating (though it's only chips and carrots right now, he drank some WATER ... and now is cuddling his drink bottle with his milk in it) ...

He is doing a lot better, right now, then he was a half hour ago. YAY!!!

We left the house this morning, took the typical riding in the car picture and got ...

PLEASE... No Mammarazzi today ....

It was a nice drive, but the traffic was unbelievable...

Here are a few pictures of Seattle ...

But we got to the Clinic/Hospital with a few minutes to spare.

We stopped and admired the garden for a minute before coming in...

We got our badges, and checked in and then went to the surgery desk.

Got a beeper for the day, and eventually got taken back.

He of course melted down when we got him in his gown .... so he got to play with the lights and it eventually calmed him down....

He tried to watch out the window for awhile...

Then decided to cuddle with Daddy again...

We got taken back about 9:30am and he wasn't taken back to surgery until about 11:15-ish. We were told it would take about 90 minutes, and about 2 hours after they walked away with him, we got the news that they were done around 1:20... Dr. Burns came out and told us that everything went well, that he ended up with a LOT of stitches, and he couldn't do the tube (open catheter) like he wanted, but it was basically the same thing that he ended up doing, just a different tube. The tube will end up being in for about 10 days to 2 weeks, and we'll have to come back for his post op appointment of course. It wasn't until after 2 that we got beeped again so that we knew what room he was in. Once we got that info, we were given directions on how to get there, and then we walked to his room, and just as we were coming down the hall he was getting wheeled in his room.

He was just basically this little zombie who wasn't moving or making a peep other then to whine at me before he threw up. He ended up throwing up twice, before they got the anti-nausea meds in him. He just layed around for longer, watching cartoons .... Nana and Papa sent him a Purple Dinosaur that you can warm up in the microwave, and he smells like lavender. AND a big ol' Froggy balloon which he's insisting stays in his bed with him.

Daddy went and got snack (chips) for him and I and Nathan looked interested, so Daddy offered him one...

Next thing we know he's shoving them in his mouth....

Then his dinner tray came and boy oh boy ..... he proved to be one HUNGRY HUNGRY boy!! I think he ate the best he has EVER eaten!

He ended up eating ALL those carrots, and about half the pasta, and several chips!! And he was sooooooooo happy to get chocolate milk in his drink bottle! Now he's sipping on his chocolate milk and watching Blues Clues..... he has left his IV alone (YAY) unlike last time when he had it pulled out practically soon after I got back there with him... and he's even leaving his leads on and his pulse/ox monitor. He's being a really good boy and we're really proud of him, and SO HAPPY he has come out of the zombie like state he was in!!

Anyway, I'm going to close this blog for now and share it so family and friends can catch up and be updated.

Thank you everyone for your thoughts and prayers!!!

HGH Training....

2010-09-19T16:56:00.000-05:00

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Yesterday (9-16-10) we traveled to Tacoma to Mary Bridge for ... our training with the HGH device. It marked the start of his daily shots, and even though I've been emotional and nervous we were anxious to get it over with AND get it started to help him grow. Everyday counts....

We packed up the easypod and the training medicine cartridges, a few other things and hit the road.

We got there with plenty of time ... our appointment with the trainer was at 1:30 and we got there about 1:15... so we walked through the garage and into the clinic...

We went in the clinic and into the elevator...

Nathan often has to squat on the floor in order to ride in an elevator. Also you can see the ridge in his skull because of his recent hair cut, those cranial imperfections are more noticeable....

So we rode the elevator up to the 3rd floor, only Endocrinology is on the 2nd floor.. oops ... so after Nathan made friends ....

We hopped in the other elevator, which was really cool..... it had a glass back and a changing mural on the back wall, so as you moved, the picture changed...

Then Nathan walked down to the raccoon department (Endocrinology) .....

The cool thing about Mary Bridge is it has these neat mosaic sun catcher circles in the windows...

And they have a bead and tile mosaic wall that I like a lot...

Hanging out in the waiting room because we were early, but our trainer was running late because the family before us took 2 1/2 hours for training. So we just kinda hung out in the waiting room ....

There was a Russian family who spoke very little English and they were playing on both computers. The little girl was coloring a puppy and Nathan crawled up barking, it was funny, so the Dad invited him to sit next to the little girl ... he said "come sit" to Nathan, and he did, I was impressed.

After they got called back, Dennis and I took turns playing with Nathan on the computer until we got called back. (Course, Dennis didn't take any pictures of me playing with him, lol)

So I was planning on taking pictures during the training, but we were both involved in the training so I didn't get a chance to. But we were done in about 45 minutes, and even though the first shot was shocking to him, he did really well with it. He ended up scoring an Elmo Car Wash toy that he got home and just loved! Then scored a $45 Buzz Lightyear from Nana ... He got extra cuddles from Mom... and he actually LOOKED at the camera and SMILED!!!

Night 2 of the shot: We took him in our room away from everyone in the living room .... as soon as I put the easypod on his little rump he clenched up, started the injection and he cussed me out in gibberish until it was over. But he didn't cry... not even a little.

Night 3 of the shot: We ended up doing it in the living room this time, and it left us questioning if we did something wrong. When I put the easypod on his behind, this time, he was fine, but when the injection started he clenched up MAJORLY and started to cry :( Broke our hearts. It totally left us questioning if I had it positioned wrong, if maybe we hit a nerve.

Tonight is Night 4... we can only hope that this gets easier for all of us. In addition, we are leaving early in the morning for Seattle Children's because Nathan is (crossing fingers) having surgery (2nd stage of his hypospadious) tomorrow. There is some question if maybe he won't because he's had his ongoing cold for several weeks. But we're going to pack up and be ready and hope that it happens so we can get it over with. I will try to update as soon as I can on it. I may end up doing short updates from my blog application on my phone.

Lost Words....

2010-09-15T23:54:00.005-05:00

What can you possibly POSSIBLY say to express how you feel when you find out that while you were stuck in your own little world, involved in a move, in everything going on in your family, that a fellow blogger family, one you've been reading about, following, inspired by .... has lost his battle and gained complete freedom from everything that weighted him down ... and when you find out it happened months ago, it's crushing. Usually I'm keeping semi up to date... especially with the kids who are pure inspirations... but not the last few months.

PLEASE read Benjamin's story, go along on his journey, laugh with him, and smile with with ... celebrate the awesomeness that he is. Because he always will be!

He was born just a couple months after my Noah.

I Did Not Die
Mary E Faye

Do not stand at my grave and forever weep.
I am not there; I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn’s rain.
When you awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and forever cry.
I am not there. I did not die.

Please visit Benjamin's Blog: Read his inspiring life. I admit that I completely swiped this entire blog post because I found it very inspiring. It is located here: Parents

"Parents who have surrendered the sweetest and smallest flowers from the family's garden need to remember our Heavenly Father. He has promised a special reward to those who now suffer in silence, who spend long days and longer nights through their trying times of bereavement. Our Creator has promised glory. He said, "For after much tribulation come the blessings. Wherefore the day cometh that ye shall be crowned with much glory; the hour is not yet, but nigh at hand." (D&C 58:4) That promised glory includes the blessing of reunion with each child who has left the family circle to help surviving members of the family to draw nearer to God. Those children still live and are an heritage to the Lord." Russell M. Nelson

The Tale of Human Growth Hormone ...

2010-09-15T22:43:00.000-05:00

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Recently, we had an appointment with Nathan's new Endocrinologist doc ... and based on his growth (or lack there of, I should say) the HGH bridge finally had to be crossed.

This is his growth chart from a few months ago....

Here is a better idea of what the lines are ... The red line is the BOTTOM of the growth chart, the 3% line, the yellow line is the average RSS child's growth, and the blue line (going with the RSS line, usually just below it) is Nathan's growth - the arrow is pointing to it on the picture below.

So you can see how far below bottom of the growth chart he is. He's not even ON the growth chart, not even close. I know how hard it is to get how tiny he is from photos... but he's as tall as an 18 month old, and he's almost 41 months. (3 yr 5 mo) ... he is in a size 4 diaper (his 24 month old brother is in a size 6 and growing out of it!) ... and he's in an 18 month pants for length and waist, and that's if we are lucky it doesn't fall OFF his waist, and a 24 month shirt cuz he has a long torso... (his baby brother is in a size 3T) ... They are both about the same height (Kaedyn is a little on the shorter side for his age, but completely normal) ... Nathan is 33 inches, and Kaedyn is 34 ... but they differ by about 10 lbs in weight. Kaedyn is definitely about 10 times stronger then Nathan.

And with Nathan starting 3 yr old preschool next week, I am worried a little...... okay ... a lot.

His backpack is almost as big as HE is.....

But I have more important things to worry about right now. What possible? I know Preschool is HUGE for a little boy who is actually excited to "go to school" ... now, staying at school without Mommy will be a completely different challenge, but the idea of putting on his backpack and going THRILLS him.

So what could be more worrisome?

How about starting injections?

Yep, that's right. We've finally crossed the SHOULD WE or SHOULDN'T WE bridge and decided that we're going to start because I've heard wonderful things from RSS parents on HGH and how it's helped their child not only grow better but also have more of an appetite.

AN APPETITE?!?!!?

We thought it was a urban legend with RSS kids! Surely that can't be true!! I mean, we've seen tiny little glimpses of a "good appetite" with Nathan where we watch him take more then 4 bites in disbelief, where we look at an empty plate or bowl.... but those days are so few and far between, it's hard to believe that maybe, just MAYBE ... those will be more often sightings!!

We got our shipment in the mail... on 9/7/10 ... and now we are going for our training (on 9/16/10)... he's going to get his first injection in the clinic during our training and he's then it's up to us to give it to him every night from then on, before bed...

Skery stuff....

I'm not looking forward to it, it's made me into an emotional wreck for several days. Crying at the drop of a hat thinking about it, talking about it...... It's gotten a little easier, but man, seeing the shipment packed a PUNCH to my gut :(

This is what we got...

The Easypod Starter Kit.... above that, in a bag is three boxes with the the medicine vials, beside that are alcohol pads, and then there is the blue fridge to go cooler (because the HGH has to be kept cool once it's mixed) and then the red sharpie container.

You open the box and this is what you see, the easypod box, the needle box, there is a squishy square to "practice" on and a foam blue packing thing, and the blue long box along side the easypod box is one that contains a couple of magnets, the screwdriver, and DVD to watch .... which I have to say, the kid in the video was just a little to happy and eager to show off how the thing worked, my money is on the fact that he is a PAID actor and there was no needles in the room!

That is the easypod device in the container that it's stored in.

The needles packaged up for the device

The HGH is on one end in powder form, then there is the appropriate liquid mixture in the other end, you push it down and let the liquid go into the powder, swish it around a little (not shaking it) and then let it go the other way back into the cartridge that the water was in, then you take this little device apart until you just get the cartridge, and that is what goes into the easypod.

Now it's time for training ..... for all this to start. I am not looking forward to it, tears will be shed and not just by Nathan.... but it is what is best for him.

We can only hope that it helps ... it's our ultimate wish.

Update! Moved... and Say What?!

2010-08-21T16:34:00.000-05:00

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It's been 5 months since I last updated in here. Normally I'm pretty good about keeping up on my blogging/updating ... but since March we made a major move from Wisconsin to Washington state and another move into our own place... trying to get settled (still trying to get settled) and trying to get established here with Doctors and Specialists... trying to determine what is "more important" to do first...

At the end of April, before we left Wisconsin, Nathan was diagnosed with Russell Silver Syndrome... my reaction... "FINALLY" .... and "Oh, no" ....... it's hard to know that your child has something, deep down, and still not want it to be true. We are thankful, don't get me wrong, to finally have that diagnosis and be able to get him the help that he needs and deserves. But it's never what you want for your child, it's never what you want to hear. We had stopped the autism testing, knowing we'd probably have to start all over again once we got here, and sure enough, that's the case. The paperwork is all turned in for that to start up, but it's going to be 3 or 4 months ... I don't mind that. I still kinda go back and forth on the whole thing but over all, I am almost positive he's going to end up being on the spectrum somewhere. Not typical autism, but somewhere on the more social end. He also had to have oral surgery since we got here. I went through all that in my other blog instead of here, which I normally don't do. It's why I have this blog, to talk about all the medical stuff here, however I barely have time to write in one blog let alone two.... or five.... muahahhaa... so

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 ..... We went to endocrinology this past week to discuss Nathan's thyroid issues and his RSS. Took Noah along for the ride, and found out that he's growing well - YAY - but he may have hypothyroid issues like Nathan, only with Noah, he actually is gaining a little weight. It took forever for him to hit 30lbs, and 35lbs... and NOW he's about 45lbs! HGH was discussed for both of them, and just like several years ago with Noah, when it was discussed, and put off to be addressed again down the road. They are happy with Noah's growth right now. He's ACTUALLY ON THE CHART! Yay!! Nathan on the other hand is no where NEAR being on the chart .... so he will be starting HGH here soon :( We have to go through training and wait for insurance stuff to make decisions, but we'll be starting soon. I'm both happy about this, and nervous. I'm happy because it will hopefully work for Nathan. I have talked to some other RSS families, and it seems to work well. As long as it's all monitored, there are very little side effects. One child is now 13, has been on HGH for 7 years and is the same size as his peers. That's all I can hope for Nathan. Noah, I'm happy to announce, has gotten to a point where he doesn't have major anxiety about needles. As long as it's not a shot, and it's a blood draw, he can do well. This last time, I explained to him that it was a blood draw and that's it... and he didn't cry at all! Not one single freak out, not a single tear.

In other news... I had talked before about Nathan having some mild Scoliosis and apparently Calahan does too, he had to have an x-ray done and sure enough... he also has mild Scoliosis....

AND..... we are not homeschooling this year, we've decided to (as a family) try the schools out here. We've heard that they are really good and don't allow bullying period (as in they actually follow through with the "No Tolerance" rule, not just say it like WI did) ...

We went to both the leading children's clinics in this area.... Seattle Children's we went to for Urology ... Here are some of the photos we took there...

Seattle

Nathan (infront) and Kaedyn... in the Cadillac of strollers :)

Piggy Bench....

(looking from above) ... a little Whimsical Garden....

I'm taking the picture from the 6th level, the guy in blue with the little girl are walking on the 5th level and the check in desk in the near the whales mouth is on the 4th floor (and happened to be where we were going)

Whales from the 4th floor check in desk

The elevators were set up like submarines complete with animals peeking in...

This is walking into the cafe, and knowing how much my oldest loves Orcas .. I had to take a picture...

And we went to Mary Bridge in Tacoma for Endocrinology, Nathan's Autism clinic is going to be there too once they get around to getting to him. LOL.... I really liked his Endocrinologist.

Nathan was automatically drawn to the fountain.

We thought that the animal shaped hedges were awful cute...

There were flowers all over ....

We got up to the front of the clinic and noticed the front of a boat sticking out of the window... how funny...

Noah liked the round cushion chairs.........

Both places were VERY kid friendly .... I didn't get pictures of either waiting rooms but both were set up very kid friendly with lots of activities, I think Seattle Children's more so then Mary Bridge, but both were great. We only saw small areas of each place.

I guess that's it for now. Hopefully I can get back into the habit of updating!

Germs BE GONE!

2010-03-28T13:45:00.002-05:00

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I haven't updated, AGAIN .. in awhile... because between everyday updates & everyday life... and all the dang germs and sickies that have visited the whole house over the past month, well it's STUNK... let me just say that. Lysol has become my best friend and everyday it's even remotely warm enough to have the windows open, they have been!

Things are going along okay there, there isn't a ton to report. Okay ... maybe there is.

Calahan is doing well. He's had a major growth spurt and we had to go shopping for a whole new wardrobe for him, pretty much.

Noah is also doing well. He's been sick several times in the past month. All is well right now though. Can't seem to get rid of the sick looking eyes. When he's got the dark patches around his eyes I always feel like he's about to be sick. We recently had to go get a new cage for his guinea pigs because one of them HAD BABIES!! Yep... but Noah never passes up a trip to the pet store. He was named 100% correct. He would bring them all home if he could.

Noah still complains about his legs and his heel cords a lot. We have an appt with Dr. J soon and he'll let me know if he's going to have to be casted, and again, I'm sure it'll have to wait until after we move. So we'll have to find an Orthopedic Doc ASAP out there....

Nathan, oh my my Nathan. He had his follow-up for his hypospadious surgery several months ago. (Really sucks that the DR doesn't come close and we have to travel to tim-buck-too just to see him.) ... Everything looks great, he said. Nothing like traveling 2 hour one way for a FIVE MINUTE APPOINTMENT... grrrrrr. Anyway... upon finding out we're moving, he said "find someone out there to finish it" ... great. Because he doesn't want to do the surgery and see him before we leave, then hand off care to another DR .. we have to go through the whole process again, meanwhile, his urinary tract is at the top and underneath of his boy parts (not the bottom at the tip). While we were there, genetics wanted to draw another lab (well I did too) for another genetic link to R.S.S. ... so literally, it was about 15 minutes in the clinic for 4 hours travel. The blood test we just added to the day since we were there. Lovely. Anyway ... we got the results back. Everything was normal there. It frustrates me, I don't WANT him to have it, but I KNOW he has it. And only about 10% of the kids with R.S.S. have the genetic link to back up the diagnosis but I just wish that were the case for us. He fits R.S.S. so well, practically text book, but we can't treat him as if he has it yet, because he hasn't been formally diagnosed. I want to make it to the conference in IL this summer but I don't think we will make it this year because there will be the leading expert on R.S.S. there, and she will see and diagnosis patients, and we won't have the money to get down there. I could do some fund-raising, but... I don't know...

Before I forget, We realized about a month or so ago, that Nathan broke a tooth :(

And onto some happier news...

In other news, I think we're not going to take him in for the follow up Autism testing, and just wait to continue until he gets older. He's still showing, what I feel, are strong signs ... but I'm thinking more like Asbergers, then Autism. I'm almost certain of that too. He has major sensory issues though. I am thinking when we move and find our place, we're going to get sensory swing for him.

In other news, he's about to turn 3 years old and his speech therapy (through early intervention) is ending. :( Which means, we'll have to find speech therapy services for him after we move, and he'll be getting assessed for Head Start (Preschool) when we get out to Washington. We're going to go ahead and start the process here though.

His things right now are wearing socks on his hands, usually he's barefoot but lately he's been wanting socks on, then eventually the socks move from his feet to his hands, he complains about short sleeves (but not ALL the time anymore) ... He still flips on his head and walks in circles on his head, and stands on his head, and folds in half when he doesn't want to be bothered with...

Speaking of Speech Therapy .....

Kaedyn's going to be starting speech therapy because he's picked up talking from Nathan. LOL... They both speak Nathanesse... and even though Kaedyn jabbers A LOT ... he doesn't SAY anything. Well, he says Momma, Dah, Up, Go, Ut-oh ... and that's about it. Go is his newest one. He is such a funny bub though. So I will catch Nathan and Kaedyn sitting side by side yabbering back and forth, talking like people with twins say their twins communicate in their own language. So he is starting Speech Therapy in about 9 days. This Tuesday, Erika (speech therapist) is going to do the end of services evaluation on Nathan and the following week she's going to start with Kaedyn and do joint speech therapy for 2 weeks, and then she's done with Nathan and only coming for Kaedyn until we move :(

On another front - his eczema has good and bad days. Right now, it's one of those "bad" times...
SCRATCH SCRATCH SCRATCH....

See it all over his tummy

It's next to impossible to find shoes for his HUGE Hobbit feet. He didn't get his first pair of shoes until AFTER he was a YEAR old... and we found those at Payless. We call the pair we got him the "Magic Shoes" because we tried on the same brand, style, different color, and they didn't fit! Anyway...while shopping with Cal I saw 2 pairs of shoes that I thought *might* fit him...

So I tried them on him and to my surprise and HAPPINESS they FIT!!!!!!!! YAY!!!!!!! Both pairs too!! Kaedyn doesn't like the Lion King ones much though, it seems, and Nathan is non-discriminating (they were both in size 4 1/2 and now Kaedyn is in a 5, Nathan's still fit his feet but he's gonna need to go into a 5 too soon, in the pic above (of him putting shoes on) he had the Lion King shoes on, the pic was a few days after the first time he did it.) Anyway, Nathan immediately took the gray ones and had me put them on him...

In other news, I've been adding older videos of Nathan onto YouTube.... here are the first three I added, from when he was about 3 months old.... you can hear his clicky breathing because of his cleft palate

Update Update Update......

2010-02-27T00:32:00.000-06:00

So ... Nathan has been pretty sick, so has Kaedyn ... some odd little virus effecting them both a little differently. They are better now though - yay! But that picture was my poor baby yesterday.

Noah had an appointment with Dermo this week, to look at that blasted birthmark of him. He assures me it's "completely normal" and when I asked him if he was sure it didn't have anything to do with his MT16 - I got the blank stare... "his what?" ..... seriously, tell me Dr's do read records? LOL ... so I had to go through his MT16 for the DR who was clueless about it. He said "that's interesting, I'll have to look into that." We do know that that his MT16 is in his skin, for sure. It's not in his blood at all. It was 100% in the placenta (that rotten thing that managed to sorta do it's job) ... that's all we know. I was told that if the skin growths on it continue to grow the way it does and it becomes bothersome (where he hits it when he's combing his hair) then they can do something to "flatten it out" .. yeah, that will go over REAL well.

Nathan is doing well, the more and more that I research RSS (Russell Silver Syndrome) .. the more I am sure he has it. My mom says "if it looks like a duck, and quacks like a duck, it's a duck." I looked at Nathan who was all curled up in his Pooh chair playing his brother's DS ... and said "Nathan, Nana just called you a DUCK!" He wasn't amused. I was half expecting him to quake ... lol..

Anyway, we joined the Magic Foundation and go this awesome book ...

I wasn't expecting a 300 + page textbook type thing.... it's wonderful though, you read it and you can understand it, there are personal stories in there... and I have 2 kids that fit that bill ... Nathan with RSS (or at least SGA) and Noah with SGA. Apparently there is one more genetic test they can run to check for RSS in Nathan for a definitive answer. It'll be run next week. Not sure when we'll hear the results, may not be until April sometime though.

We're going to try to make it to the convention this summer. Only I'm torn, I'd really like to attend both the Magic Foundation one and the S.O.F.T. one... and I have to come up with fund raising ideas.

Anyway - it's late and I need to get to bed.

Featured in Kidz! Plus RSS discussion

2010-02-07T10:34:00.000-06:00

First of all, Noah and Nathan were both featured in the KIDZ blog! Noah was last month, and Nathan was just a few days ago! (Click their linked names to see the entries) Noah's was copied from the DOC16 Site, and Nathan's was the Pity entry I did a few weeks ago. It's amazing, to me, when their stories are shared. I feel that these two boys, and so many others, show so much hope and strength. Life isn't always what it's pictured to be, or even how we always want it. Things don't come to us in timely fashion a lot, and we have to work at it... but, just because sometimes things are thrown at you, without understanding why, doesn't mean they are any less special!

Upon Nathan being featured in the KIDZ blog, there was a note left. She had said, in it, that before she even read the whole story, she thought that Nathan looked like an RSS kid. See, she is an RSS adult. So it struck a cord with me. What AM I waiting for? I have been dancing around joining RSS sites because we didn't have the definite diagnosis. So I just hadn't. Now, I realized, I needed to. So I joined the yahoo group she suggested, and I joined one on Facebook long ago, however I had never posted in it before, so I did now. I even managed to find a growth chart (length) with an RSS curve on it off the Magic Foundation website, so after having Dennis print off Nathan's growth chart (accessible by our clinic website) ... I sat there and was putting his heights in .... and it amazes me how close to "average" he is for RSS! He almost follows the curve ...

We were considering going to the Little People of America's Convention this year, it's in Nashville, but then I read about the Magic Foundation Convention. They have it every year in Illinois. And I think this is something we need to go to because one of the specific disorders that they deal with is RSS. So we hope to go to the Children's Convention. We went to one with Noah when he was 2 and I have to say it was something that we'll never forget! It was a wonderful learning experience for us, and an opportunity for us to network with other parents going through the same thing, not to mention - meeting up with other DOC16 families. Anyway, I have noticed that Nathan is starting to notice the growing size difference between him and his little brother (who is now bigger then him) ... and I think it's bothering him. So I think this would be a wonderful importunity for not only Nathan, but our whole family!

10 seconds from calling 911

2010-01-15T19:10:00.000-06:00

So, last night I got the scare of my life.... eh... okay, I had a huge scare in my life, trust me, with these kids, I've had a lot. Anyway, I was about ten seconds from {calling 911} last night because Nathan was choking. It was blocking his airway, but not completely, he was getting SOME air in. He was crying and screaming, but the screaming was soooooooooooo muffled. He was in trouble and both Dennis and I knew it. Dennis tried to sweep his throat, but everytime he tried he would practically get his finger bitten off, man that boy has a strong jaw. We tried to heimlich him,but that didn't work. Finally, we had to use a toothbrush to pry open his jaw and then Dennis got his finger in there and managed to move it, eventually, his screaming sounded clear so we could only assume he had managed to pass it down his throat, whatever it was. He literally walked from me, to the couch, got on the couch, and onto his horse that I had forgotten to take down - but he was fine, I didn't see anything in his hand, and we have no clue what it was. Our best guess is that Dennis has quit smoking again and he's using beef jerky sticks to concur the oral need, and he had a piece sitting on his desk. We're thinking maybe Kaedyn found it, and after figuring he couldn't eat it, put it down over by the horse, and Nathan found it there. He tried to swollen to big of a bite, or something. I don't know. Dennis says that's what it "felt" like anyway. But the kids were scared, I mean all of them were. Cal, Noah, and Kaed were all in the living room around Dennis and I as we tried not to panic and help Nathan, there was a point where the phone was in my hand... and they were asking all these normal questions, because they were scared... is he going to be okay, are you going to get it out, what's in there? ... ya know... so I finally asked them to take the two littler ones out of the room, and he did. He's such a good kid. But Nathan didn't calm down for awhile and he refused to eat anything for the rest of the night, I got him to take some tylonel after about an hour cuz I'm sure his throat was all tore up. Just, still, very thankful.

Kaedyn has been saying some new word :D ... Hi, Ya (yeah), Up, Down, Momma (he's been saying for awhile but it's dang cute!) ... Dah-Dah (he doesn't say Daddy yet)... and "Num-mum-num" we always say that with Nathan while eating because it's hard to get him to eat, and Kaedyn has picked it up. Nathan said a new word yesterday too, I ask him where Bubby was last night and he pointed to the nursery door (where Kaedyn was sleeping) and he said "Bubba!" Awwwwwwwwwwww ... it's offical, Kaedyn is {Bubba!}

Nathan's New Words

2010-01-13T11:42:00.000-06:00

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Nathan's speech is FINALLY picking up. It's still not clear, but he's attempting to say A LOT now, finally. He never did pick up on signs much, even though we did them and tried to work with him a lot with it. Here is a video of him saying a few of his new words ... he was copying me so I decided it would be a good time to try to get some on tape!

Noah's Birthmark: Take 3

2010-01-13T11:24:00.003-06:00

Noah was born with a birthmark on the side of his head.... he had stork bites all over his face too but those faded enough where you can't really see them/they aren't there.

However, his birthmark on his head is a different story.

I have NEVER seen a birthmark change like this and it worries me. I don't know if it's associated with his MT16 or if it's something else, but it's nagging at me.

It was flat when he was a baby, there were no raised spots, and recently, I noticed some changes, it's was last May after a haircut that I noticed.

ALL TAKEN MAY 20, 2009

He had started to get these raised areas in it. I took him to see his Ped who referred him to a dermatologist and then when we saw him, he just sorta dismissed it.

Well the shaggy dog's hair has been cut again, and this is what we found...

ALL TAKEN JANUARY 12, 2010

We measured it in May and it was 1cm by 1 1/2 cm and now it's 1 1/2 cm by 2cm ...

Now, me laying in bed with insomnia, being completely unable to sleep ... I was watching Bad Girls Club and the only other noise in the house is from the babies radio that is always on ... Cal's TV is on too, but I can't hear it... especially over my TV. So I'm sitting there thinking about if I should call the Dermatologist or just leave it alone... and I hear "Mom" ..... and nothing else. I paused the TV. It sounded like it had come from the hallway, it sounded *kinda* like Noah. I went to say "What?" cuz there was no response so as I'm saying that there is another "Mom" ... so I said "Noah?" It sounds close enough to Noah, but doesn't SOUND like him completely. It's definitely coming from the hallway, like he's halfway down the hall by the baby's door. Then I hear, "Mom can you help me?" ... and so I wait a beat and then get up. The voice actually sounded more female. It was just weird. So I walk out of my room, and there is no one in the hall. I flip on the light in the hall, I look in the living room - in the nursery - no one - so I check Noah's room, he's on the opposite end of the hall then we are, and he's sleeping on the floor in the middle of his room..... he had a blanket over his face ... if it had been Noah, he wouldn't have moved back into his room and if he had, you would have heard him go back to his room, and his voice would had been muffled by not only the distance but the blanket too...... fact is, he was seriously asleep. I thought about the fact that it may have been him talking in his sleep, but the voice was coming from the hall... not his room, muffled by a blanket and around corners. I had uncovered his face, and checked him.

He's got swollen lymph nodes too... and of course I'm concerned about the spot, and keep looking at it, so he's flipping out asking if it'll go away and such, cuz he's scared he will have to go to the DR's about it, which he will, but I'd rather make him go through that anxiety when the time comes instead of now.

Now, is it coincidental that I heard it while worrying about my child's health?

The soonest the Dermatologist could get him in is February 23rd, I also called Genetics about it.

Noah's Button...

2010-01-11T12:00:00.001-06:00

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I finally made Noah's button. It made me want to cry, honestly. I got the bright idea to put his footprint on there, from his birth announcement that the hospital gave me. It turned out so beautiful... and that footprint, that is his footprint from birth.... notice there is no ridges in it, babies that tiny don't actually have "prints" yet. needless to say, my little 1lb 12oz miracle has grown a lot! I am having a hard time admitting the fact that he is going to turn 8 in just a few weeks. He has come such a long way, and he's such a wonderful kid...

Pity, for Pity's sake: pt: 2....... (Sign the Pledge!)

2010-01-10T13:25:00.003-06:00

If you haven't read Pity, for Pity's Sake: pt 1 ..... please do so :)

Imagine, you have 9 and 3 year old sons, one is just easing back from a roller coaster of medical issues, weekly doctors visits, knowing that any of his major and minor organs could be riddled with his rare genetic disorder, much like his skin. (Noah's skin biopsy reveled that about 30% of his skin cells were effected with the extra chromosome... and it was not in his blood at all, the placenta had been 100% Trisomy 16) ... the fact that his kidney issues continue, makes mommy feel like it's at LEAST in his kidneys. You can only hope for a happy "normal" life, but realize it may not be a reality. You are divorced now, a single mom, you have put yourself out there dating, it's fun and you aren't taking it seriously really. You never did it before you got married, and now you figure no one will want to take on a used woman with 2 kids, one who has medical issues and you'd never marry anyone who didn't understand what they were getting into. Marriage, isn't in the future... Their 10th and 4th birthdays passed us and before I knew it, the divorce was finalized...

But then I met HIM ... and my world changed. We met on the internet, and the boys would see me talking to him on webcam, hear me talking to him on the phone, but my mom was in town, and when she flew back home, she was taking the boys for the summer. I had the chance to date him, without the kids getting involved. He ended up moving back to Wisconsin to be with me and I had to fly out to WA to get the Cal and Noah. So I did... and while I was there, with them, I told them that they were going to come home and have a great new man in their lives. Dennis and Mommy were planning on getting married the following year. No one else really knew, but we had decided to haphazardly try for a baby together too. We figured we'd give it a couple months, and then take a break, because I didn't want to be pregnant for the wedding. We were away from each other for 2 weeks, and when I got home with the boys, we spend a lot of time in each other's arms {wink, wink} ... so September we were going to start trying and I was just waiting for the cycle for August to end. I was temping (charting) already to get into the habit, and getting really frustrated because the start of my cycle wasn't coming. I knew I wasn't pregnant, I had all my ovulation symptoms my last day at my mom's. Finally, Jenna got on my case, and yelled at me to take a test. I had already taken one, it had been negative, but just to shut her up, I took one. As I was walking up the stairs, I glanced down, and OMGosh....... THERE WERE TWO LINES......(Tuesday AM was my neg test, Thrus PM was the first one I got 2 lines on)

And the lines got darker!

I called the DR's office, at that point, I had suffered 12 miscarriages (the 13th came on our 1st Anniversary, a couple weeks before Kaedyn was conceived), and my OB and I determined that I'd need to go on progesterone as soon as I got a positive result. A beta was set up to keep an eye on my hCG numbers, and my prescription was filled for both the prog & prenatals.

Soon it was time for the first ultrasound, the earlier, "let's make sure this pregnancy is viable" ultrasound and we saw his little blob and his flickering heart. Sure enough, there he was. I ended up having another one between then, and the 12 week, because I was cramping and spotting pretty bad, but everything was fine. Then came the 12 week ultrasound and yet again, I was watching my due dates travel south. I was due on Mother's Day, (May 13) and by then I think my ultrasound based the due date, from the size of the baby, already in June. I was scared.........

......... was it happening AGAIN?

Discussions with the OB, at 16 weeks I had the amino done, just to make sure. Two weeks later, we found out we were having another boy, and he looked 100% genetically healthy!

........ YAY, huge victory!!!

We found out just in time for our wedding, because we decided to get married now, legally, for the sake of the baby - we had been planning on it anyway! We still plan on having a big wedding someday, but we decided we needed to focus on our family. I was 18 weeks pregnant for our wedding...

The day after Christmas, we went in for our 20 week ultrasound. And just as we were ready to welcome in the New Year ... we got the phone call that would, yet again, change our lives.

"This is so-and-so from Dr. B's office, we have the ultrasound results and we need to speak with you about it." Oh GREAT. "First of all you have a very large fibroid tumor in your uterus with the baby, but everything should be okay there. The baby has severe Intrauterine Growth Restriction," which we already knew, "He has a two vessel cord," there are three main vessels to an umbilical cord, "and we found a cyst in his brain." WHAT?? A CYST in his BRAIN?? OOOOMGosh what does that mean??? "It seems to be stable right now, we just need to keep an eye on it." She couldn't give me any other information, really. I think she mentioned it was called {Dandy Walker} but I don't recall if she had told me or if I can found out at my next OB appt. Pity was on the phone that day, I could hear it in her voice as she tried to keep ME calm. Please don't freak out with me on the phone, I feel bad enough telling you all this after all you've already been through. She hung up with me as quickly as she possibly could, she didn't want to be responsible for giving me information and dropping the heavy box of worry upon my head. I wonder if the nurses and assistants all drew straws to see who got the short one, to make the call, because it was someone I had never talked to before.

A cyst in his brain........ I was terrified. Something WAS wrong, because he wasn't growing. As soon as I had found out it was called {Dandy Walker} I hit the internet for hope and inspiration, much like I had with Noah. Only this time, I didn't find any. All I found were words like {DEATH} and {HYDROCEPHALUS} and {MAJOR DELAYS}

...... OMGosh, it was happening all over again.......

{IT WAS HAPPENING AGAIN}

When I went back into my OB I broke down with my worries and he assured me that based on what they had seen, the baby's (he was still semi-nameless at that time, we called him Lil D because Dennis wanted to name him after himself, and I was going to let him have his way, although I didn't like it... who wanted to cause their little boy to have the nickname DENNIS THE MENCE hanging over their head....) was stable and they'd keep a good eye on it. I was having ultrasounds every 2 weeks from then on. I had hypertension and was being monitored and watched for Pre-eclampsia, and I was having contractions so I was on moderate bedrest.

It had gotten to the point where they were thinking, based on my blood pressure, I'd have to be delivered soon, it was sky high, but the protein was still stable. But I was ordered the shots for the lungs, just incase. They gave me one at one appointment, where the Perinatologist gave it to me, and then gave me the vile of meds to bring home, and go into to the OB office for the second dose.

But Junior and I hung on there ... and soon enough, about a month before he was born, his name got changed to Nathan Patrick, and that one stuck.

I had been told various things through the pregnancy, we want you delivered by 33 weeks, 35 weeks, 37 weeks... it was fine it got pushed back, it meant that Nathan was doing better then they expected, but at 36 weeks, we knew it was time.

Noah had been running a fever, he'd vomit a little, but the fever was so very bad. He was complaining about a pain in his right side, he was not himself. The fever was getting lower and going back up and dancing around. We took him into the ER. They did no testing. He's afraid of the DRs and he will act as normal as he possibly could, and he was demanding me to read to him because he was scared, and the Physicians Assistant that saw him, said that he just had a virus without even really doing anything. When we mentioned appendicitis, we were told he was to young. What gets me, is he gave them a urine sample, but it was never run.

We went home, Monday he seemed better, but Tuesday, the day I had another ultrasound an appt 2 hours away, possibly looking at being delivered that day, Noah woke up with a 104 fever and vomiting, he was lethargic, and I spent about an hour struggling with a choice. Did I leave him home with my mom and have her try to get him in, or did I take him with me and have him see where we were going, which happened to be the hospital he was born at, 2 hours from home. I kept thinking, if he gets admitted, at least we'll be in the same hospital. Since Nathan had many issues, and was so small, we planned on delivering at the hospital with the NICU where Noah had been born. I didn't want complications to arise and then have our hospital end up transferring him there anyway, and be in a separate hospital from him.

So Dennis and I packed up, packed Noah up, and Mom was going to follow with Calahan later. It was April 17th. I went through my ultrasound and appointment and it was determined that I would deliver on Thursday, April 19th. Then we took Noah to the Ped's department where the Urgent Care kids are sent. So we got him in, and ended up waiting in the office for an hour. By then, his fever was back, and the little bit of energy he showed during my appointments was gone, he cried, he slept, he struggled and he was not his normal self. The DR, when she finally came in, took one look at him... and knew something was wrong. She ordered an IV, labs, x-rays, ultrasounds, and then said to come back down and she would probably end up admitting him. When I mentioned appendicitis to her, and what the DR at home had said, she was appalled and said he wasn't "to young" ... and promised me she'd figure out what was wrong. We ended up finding out that Noah's kidney's were failing and they were running all sorts of cultures on him. He ended up, we found out after he was admitted, that he had C-Diff, which is a bad bacteria we all have in our bellies, but when we are on normal antibiotics, it doesn't kill the C-diff because it's to strong, normally, it stays dormant, but sometimes, when you are on meds (and Noah had been for an ear infection) .. it runs rampaged, and in Noah's case, it almost killed him.

Pity walked into the room, again, with pretty much every nurse and confused DRs. Knowing his history, seeing me 9 months pregnant... it was hard not to look at us like that, especially when I was shoving my 9 month pregnant behind on a sleeping bench under Noah's window and wouldn't leave. I didn't leave until I had to go down to L&D at 8am on Thursday morning to give birth to Noah's little brother. That was one of the hardest days of my life, leaving one baby in the hospital, going down the hall, down a floor, to have another...

Pity was there then too. Only by now, I had let all my anxiety I had been fighting off take over. I was breaking out in tears, I was a mess. Emotional because I knew that Noah was wanting me, and I needed to be there for him, but I couldn't.... he was in good hands, my Mom and his big brother Cal, but I wanted to be there. But obviously, I had to get Nathan out. It was time for him to be born and I was scared. Scared about everything.

Things weren't so much a whirl-wind this time as they had been with Noah's emergency c-section, it was a little more calm. Word had spread that my other son was up in PEDs but everyone tried to focus on now. There were questions though. "Why is he there" "What's going on?" ... I was shaved, shoved with a catheter and wheeled back into the OR. It took them 20 minutes to place my spinal this time. I was shaking to death and really upset by the time they did, but I was so glad when they finally did ... I had a massive bruise on my back, though, from all the attempts.

That's when pity entered the room... and brought along some luggage. She planned to stay for awhile.

Things went okay, Dennis finally came in and thought I had to be knocked out. He hadn't been in the delivery room for his Daughter's birth because his ex-girlfriend had to be put completely under. So this would be the first birth of one of his children, that he'd witness. And he was all eyes. I told Dennis, I didn't care about me, I wanted him to stay with the baby. Where ever the baby went, he went. And to take pictures. Don't let the baby be alone. So he did.

Nathan Patrick was born at 11:07am on April 19th, he was 3lbs 4oz and 15 3/4 inches. He came out SCREAMING ..... and I cried. I cried with joy to hear his little voice, to hear his lungs working ... to have what I wasn't given with Noah. They brought him by me, for a quick look-see and a picture... and then Dennis went with him to that room, behind the door, which was left open this time, where they had taken Noah. Nathan's experience was the same one I had needed with Noah, but never got.

Then Pity started doing her dance. For 36 1/2 weeks, he was extremely tiny. Pity pity ...

I was taken back to my room, various DRs would come in, tell me this was wrong, or that was wrong... I heard things like "cleft palate" and "heart issues" and various other things. Genetics was called, surely SOMETHING had to be wrong genetically, with all his issues.

What are the odds of one person having two such dramatically different children with such widely spread health issues... with two different Dad's, no less...

He was in the NICU, funny enough, in the same pod, in the same bed spot, that Noah had been. (Noah btw, had been released that day from the hospital, feeling better but not 100%, and he got to visit his baby in the NICU after he was born) All the nurses knew me, remembering me from when Noah was in there. I had kept in touch with a few of them. I was told, I knew what to do, and they pretty much let me run Nathan's show as much as I could. I'd reach in there, check his diaper, fix his leads, what whatever I could, that I knew, needed to be done. I knew when to leave him alone, and I knew when I could reach in there and hold his hand. Dennis, though, was another story. This was his first NICU baby, and although he accepted Noah for all he was, he hadn't been there. It scared him, just like it does every parent walking into it for the first time. I taught him a lot of what to do. How to change his diaper in the incubator. How to kangaroo, how to tube feed him, how to burp a tiny tiny baby. He was a pro, though. He was showed it once, and that was all he needed.

Nathan was in the NICU for a couple weeks, he ended up coming home the Wednesday before his Mother's Day due date.

Pity stuck around, hiding. I'd catch looks form some of the nurses, every time a new diagnosis came down the line. I would catch it from some family members... Especially when they saw him with the NG Tube (which he came home with because he was having a hard time nipple feeding, because of his cleft palate)

His tiny hands, and tiny feet amazed me ...

But he did slowly grow........ he averaged about an ounce a week in weight gain. That's it... just an ounce. Sometimes less, sometimes more... (ages under pics)

4 months old

6 months old

9 months

11 months

One year old... STILL in 0-3 month clothes, some 3-6 month

Pity especially came out, after we brought Nathan home and in public. After he got a little older and the questions would come. "Oh how old is he?" and I'd tell them... "Really? He doesn't look that old!" Well he is. My favorite reaction I would get when telling people Noah's age before Nathan was born, and Nathan's age was ... "SERIOUSLY?" ... you could hear their heads scream "What is WRONG with him/them?" but be to polite to ask. I would feel the need to explain that Noah was a 1lb 12oz preemie and Nathan was 3lbs 4oz when he was born, and that Noah has a rare genetic disorder, and Nathan has a cyst in his brain. Then I get the "can it be fixed?" um, no, he has to live with it like that forever. It could get bigger, it could cause problems, but right now it's stable and we are thankful. Pity is in all of their eyes when they look at Nathan, but Nathan will usually turn around the situation and do something goofy, because that's who he is, and make them laugh.

(some of my fav pics of him, Dancing in the Rain - Taken just after his 2nd Birthday, on his Adjusted Birthday - May 13, 2009 - 2 years after he was due)

Once Kaedyn was born, and started to get to be around the same size - which didn't take long - I would be asked "Are they twins?" Especially when out in this Cadillac of a stroller...

(you can see the seats actually face either way, it's the BEST stroller in the world .. a pain to break down but who cares!)

And I'd have to say "no, they aren't... there is 16 months between them." To which I would often get the rubber necking between looking at them, and they would guess who was older. Usually picking Nathan, because he had more teeth. Then they want to know what's wrong with Nathan. Pity comes back, and Nathan now ignores them. Kaedyn is a ham bone and soaks up the attention, and sometimes, when Noah is with us, he doesn't understand why HE doesn't get attention like HE use to. Nathan has gotten to be very stand offish to people... they are okay, as long as they are at a distance. Please don't get to close.. he doesn't like that much.

Nathan is in 12 month clothes for length (sometimes 18 months but the width swims on him, he COULD fit in a 9 month outfit if it weren't for how tall he was) ... He's in size 4 diapers, but I can still touch the tabs together. Kaedyn is in 18 month to 24 month/2T clothes. He's in a size 6 diaper and we're going to have to start potty training him soon because there is no where else to go after that... Nathan's feet are in size 5 because they are LONG and Kaedyn's because he has Hobbit feet...

Here is Nate showing you how long his feet are... (these last 3 pics, btw, were taken just before I published this blog.)

Now that Kaedyn is BIGGER then Nathan, it's hard. Nathan, you can tell, is noticing. He'll be 3 years old in a few months, and he's only 18lbs, and 31 inches, Kaedyn is about 26 lbs. He still hasn't been officially diagnosised with Russell-Silver Syndrome .. but it fits him so well. It's a type of Primordial Dwarfism. We have watched Kenadie's story on TLC. She reminds us so much of Nathan, only Nathan is a little bigger.

Pity is going to follow us for a long time, Noah's issues are easy to hide, but Nathan's aren't. It's hard, because it seems like each year, the list of Nathan's issues grow with each year. And grow...... and grow. and grow... but we'll take whatever steps we need to in order to help Nathan have a strong will, a happy life, and as healthy as can be!

So let's stop PITY... PITY is 100 % CURABLE .... take a stand against Pity, and sign the Pledge! I did!