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

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!