The Last Month with Noah

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

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

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

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

That was the last time he was in the hospital.

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

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

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

So we went back the next day ....

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

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

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

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

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

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

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

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

 His new Mascot is the Killer Whale... 

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

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

The Last Month with Nathan

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

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

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

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

 Having a blast playing on the iPad ...

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

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

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

What happened?

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

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

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

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

 Getting the electrodes connected

 Wrapping up his head......

All connected ...

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

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

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

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

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

This is a Normal Brain

This is a Brain with Polymicrogyria

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

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

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