The Last Month with Nathan

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

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

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

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

 Having a blast playing on the iPad ...

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

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

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

What happened?

Well...  he was sleeping, and he let out this whine, and it didn't stop.  Then he would build that whine into a cry and eventually he'd scream, stiffen up completely - like a complete full body stretch, arms and legs outstretched and completely stiff.  Then the whole process would start over.  Whine, build up to a cry, scream, stiff, whine, build up to a cry, scream, stiff...... I grabbed him and pulled him over on me completely unsure of what o do, he wasn't responding to me, he wasn't answering me or even looking at me like he normally does.  So I had him laying on me, back against my chest and belly and I realized while he was doing the whine building up to the cry, he was also trembling.  This repetitive process went on for about 3 minutes before it stopped.  Then he turned around, looked up at me like "what am I doing on you mom?"  He pointed at his pillow, I put him over there, tucked him in ... and he went right back to sleep.

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

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

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

 Getting the electrodes connected

 Wrapping up his head......

All connected ...

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

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

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

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

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

This is a Normal Brain

This is a Brain with Polymicrogyria

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

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

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

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!