Update! Moved... and Say What?!

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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!

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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......

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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

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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

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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

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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

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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...

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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...