NDD ~ December 22, 2009

December 22, 2009 ...  Nathan had a very busy day today.   He had speech therapy, and we played with Playdoh when Kaedyn was napping.  We got some great videos of him working on his vocabulary which is increasing a tiny little bit each week.

We're starting to notice some of his tendencies and habit we associate with his migraines and think they are starting to come back.  So I'm going to try to keep up this again, with the daily thing. 

playing with Mr. Potato Head

Cutting with play food ... he is saying "Pepper" now and he tries to say "Apple" and to our surprise, he said "Banana" and I got that one on a video (Pepper is on video too)

Playing Playdoh

Nathan's Videos

NDD - December 20

December 20 ...

Nathan has this habit of either going to get my camera off my desk or pointing at it and whining until I give in and grab it.

Why?  Because he's a vain little bugger stinker ... and he insists on me flipping the LCD screen over where he can see himself and then he makes faces and cracks himself up.

Literally cracks himself up...

So he would grab something (first the helicopter above) ... come over to me and point insistently until I finally gave in.  Then he grabbed some glasses...   Yep - yep - that's right. 

Then I put the camera back after a couple of pictures and said "ALL DONE" ...

So he came back with the bucket ....

Then Noah came into the room and he wanted in on the fun....  Nathan, DID NOT LIKE THAT AT ALL... he does NOT like sharing his spot light...

No, Noah isn't being mean to him... LOL.. it looks like it though, and on plenty of occasions he IS mean to Nate, but this wasn't one of them...

Here is a video of the silly billy today...

He has had an okay day, other then being very needy and demanding.  He spilled his juice box all over him so that he would get his PJ's changed.. LOL.. he then took off his pants and started crying cuz they were wet.  But right now he fell asleep, he didn't take an afternoon nap so he crashed right after dinner (of which he barely ate) ...  I'm not sure if tonight is going to be one of those nights where he sleeps all night or if it's going to be one of the ones that he's up at 11 until 2.  Maybe he might be up at 4am.... :: sigh ::  Who knows...  

December 14 - 19th - NDD

I am starting up Nathan's Daily Diary again because as we are coming into the winter season here at home, complete with tons of snow on the ground, it appears that Nathan's headaches are coming back.  So I need to start this up again to start keeping track of everything.

December 14...

We read a lot that morning, not only me reading to him and Kaedyn, but him sitting like this reading too.  It's sweet when he does this, he doesn't do it often anymore but I always love seeing him with booked in his hand and wanting to be read to.  The day before had been Daddy's and Mommy's Anniversary and we had some Welchs Fake Champagne, the night before Nathan had taken an interest in my glass, including dipping his little fingers in it and sucking the juice off them.  So on Monday, when Mommy and Daddy had another bottle, we gave Nathan a little cup with some.  He calls it "Bubbles" and he enjoyed it.  It's the first time in just about forever that he would drink anything OTHER then Chocolate Milk!

A little while later, more in the afternoon he decided he wanted his Tigger Costume on... he'll leave it on all day if you let him.

And he's constantly carrying around the bug lights too, of course he leaves them on which means they run out of batteries really quickly...  here is Kaedyn in the glow..

Tuesday (12-15) we didn't have an oven so we did a lot of snacking and stuff.  I ended up running out and getting some groceries when I got a chance to and I took some photos of Kaedyn drinking (or thinking he was going to) 2-liter bottles of Orange Soda.. but none of Nate to share.  LOL..  we were having an off day.  I remember Nathan was really tired all day and when I finally got him to take his nap, he woke up in a horrible horrible mood.  He kept putting our hands on his head to rub it, and wanted me to cuddle him, so I did.  I think, even though he had a long nap, he went to bed kinda early for him. 

Wednesday (Dec. 16)

Nathan has been tolerating Kaedyn more and more, and with that toleration also comes the bickering...  the fighting, the pushing, the hitting, the hair pulling oh my!  But when you catch the sweet moments of them sitting together, it makes all those moments worth it.  Because you know they are going to totally be the type of brothers who stick up for each other and tell other kids "No ONE picks on my brother by ME!"  LOL...

We got our new oven on Wednesday and both babies were in love with watching whatever is in the oven (that night Pizza) .. our old oven you couldn't watch through the oven door so it's new for them, and both of them love to watch Dennis (and sometimes me) cook...

Daddy says you know you are a future Chef when watching what is in the oven is better then what is on TV!

We had gotten a big container of fruit - and it is hands down Nathan's FAVORITE thing to eat.  Fruit of all kinds.  Mostly grapes, and bananas.  So there was a bunch of grapes in this container, some melon too..  this was his way of asking me for more... LOL...

He ate really well this day.  Most days we give him food after food after food item and he either barely touches it, doesn't touch it at all, or if we are lucky, he eats half of it.  But he kept coming back asking for more fruit, and as always - if Nathan asks for food, he gets it. 

Thursday (Dec. 17) - We did some crafts at home ... Nathan was all excited and helped out.  Er... sorta helped out!  He tried... LOL...  We were making Light Bulb ornaments for the tree. 

I was trying to keep the hot glue gun out of his reach but at one point after I was gluing something, he reached over and grabbed the metal part, the hot part, and started crying.  So after some hugs, kisses, a cold compress, more kisses, he was okay. 

Batman all Decked out for the Holidays!

After awhile we had to stop because Kaedyn got up and little hands, tiny beads, don't mix.  Bad enough keeping track of Nathan, but Kaedyn is a brute and pushes his way everywhere ..  so we put the stuff away.  Then Nathan took his nap and woke up in a terrible mood again.  We tried to give him dinner (chicken nuggets and fries) but he just wasn't interested at all.  So we opened gifts (family tradition) ....

After we did that, Nathan wanted to just cuddle and had his head rubbed again.  Eventually, he fell asleep.

Friday- December 18 ...   It was a rough day for all.  Mommy had started some new medication and she wasn't doing so well Friday (side effects) ...   So it was a very sleepy lazy day.  Nathan ended up taking a long afternoon nap and when he woke up he screamed for an hour before Mommy finally got him to settle down by putting a cold washcloth on his forehead (something that works when Mommy has a headache) ..  Even Kaedyn was being a sloth ...   

Once Nathan saw the camera he started grinning!  Who'd'a'thunk 5 minutes before he was screaming!

Saturday December 19 ....  Dragons like pears ... 

Yes, apparently Dragons like pears!  Nathan played most of the morning with just his Little People and Mr. Dragon there had a lot to eat!  Nathan fed him a lot complete with eating sounds "num num num" ...  Mommy & Daddy had a "meeting" to go to Saturday morning so Calahan babysat.  When they got home, he got this ugly teddy bear.  (okay it grew on me when I saw how much he loved it)

It - overall - seemed to be a good day for him.  He ate okay, he didn't scream when he got up (but the blinds were down) ... and he played great. 

NDD - First Week of September

I have been planning on restarting Nathan's Daily Diary ... since I hadn't been doing it over the summer due to a lot of things - but mostly I wasn't feeling well.  

I had planned on starting back up on the 31st but that apparently didn't happen.  We had a very busy week and each day just sort of ran away with me.  We have been working on homeschooling every day and just getting use to doing new things and trying to pack everything into one day.  

I had talked to Nathan's genetic counselor, Kara, about the Russell Silver Syndrome and how the had fit into the signs/symptoms of that particular disorder so well, and the genetics test they had run for it had come back normal.  The main genetics DR who is on Nathan's case wasn't in, she's on vacation for the week.  Kara kinda laughed and said "I've been preparing myself for the questions you might ask" LOL...  makes me feel so knowledgeable.  Anyway - I found myself chattering on and on and on and on and I'm sure I probably bored her to death with my endless chatter, it really goes to show that when you get a little adult conversation when you don't get much - you tend to let your mouth run.  Anyway, unfortunately the call ended with me basically hanging up on her.   Nathan has a habit of eating stuff he's not suppose to and putting whatever in his mouth so we really try to monitor him and be careful, and since I was on the phone walking back and forth between the living room and the kitchen, he thought it would be a great idea to jam this screw thing (something you screw onto a toy screw, like a nut, it had a hole in the middle and such) .. anyway he jammed that into the back of his mouth and started gagging and choking.  So the phone call ended with these words. "He's choking I have to go bye" ... and I hung up and dug it out.  Oye that child gives me gray hairs.  (And I'm so not kidding about that - my grandma and mom really don't have any gray hairs, but I've found a few!) ..  

For those who don't know about Russell-Silver Syndrome (or it's aliases)   Here is a run down of some of the signs/symptoms ....  top one is from http://www.nlm.nih.gov/medlineplus/ency/article/001209.htm

• Arms and legs of different lengths  As far as I know his arms are the same length and so are his legs (but don't quote me on that - if there is an issue, it is very slight)
• Coffee-with-milk (cafe-au-lait) colored spots Not that I know of
• Curving of the pinky toward the ring finger  Yes he has this
• Delayed bone age  Yes he's been tested and we've been told he does
• Failure to thrive  Offically labeled this year
• Gastroesophageal reflux disease  Yes, in the past very badly, but it has gotten better
• Kidney problems, such as:  not that I know of 
  
  
  
  
  • Horseshoe kidney
  • Hydronephrosis
  • Posterior urethral valves
  • Renal tubular acidosis
• Low birth weight  Yes, born at 36 weeks (almost term) ... 3lbs 4oz
• Normal width of head  I'm not sure if it's normal, but it's the closest thing to "normal" on him  (he's way down/not on the growth charts for weight and length but he's close to bottom/on the chart for his head)
• Poor growth Yes definitely
• Short arms  I don't know about short arms, but I assume so?  I know I often find myself thinking "he has such short legs ..."  So I assume that his arms are shorter too
• Short height (stature)  I think so (he's definitely shorter then he should be for his age, but in general too - I think so)
• Short, stubby fingers and toes I don't know that I would say short and stubby...  I think his toes are shorter - especially compared to his very long feet.
• Swelling of the food pipe (esophagus)  not that I know of...
• Wide forehead with a small triangle-shaped face and small, narrow chin I think that his genetics DR had said he fit in this... but again, don't quote me on it

this one is from http://www.magicfoundation.org/www/docs/112.111/russell_silver_syndrome

What is the Typical Russell-Silver syndrome (RSS) Phenotype?

The RSS phenotype includes a number of physical and developmental characteristics. One of these, asymmetry, is unique to Russell-Silver Syndrome, while others, like low birth weight and length, are shared by RSS and SGA children in general. 

Characteristics Considered to Distinguish Russell-Silver syndrome Children From Other Small for Gestational Age Children: 

body asymmetry -LARGE side is "normal" side ... I think for the most part, at this point in time, his body is pretty symmetric.  His head is not (his face is as far as I can tell) but his head became mis-shaped at 6 months when he had a case of hydrocephalus
inadequate catch-up growth in first 2 years  ... absolutely fits this
persistently low weight-for-height - lack of interest in eating  ... absolutely fits this
lack of muscle mass and/or poor muscle tone  ... absolutely fits this 
broad forehead ... I think so?
large head size for body size  ... absolutely fits this
hypoplastic (underdeveloped) chin & midface ... I think so?
downturned corners of mouth & thin upper lip... I'm pretty sure he fits this, I know that the corners of his mouth do turn down
high-arched palate... absolutely fits this (not to mention it being a closed cleft palate)
small, crowded teeth ... I think so
low-set, posteriorly rotated &/or prominent ears ... absolutely fits this
unusually, high-pitched voice in early years ... not sure
clinodactly (inward curving) of the 5th finger... absolutely fits this 
syndactyly (webbing) of the 2nd and 3rd toes ... absolutely fits this - it's not

complete webbing but it's there, and it also runs in Dennis' family (webbed feet)
hypospadius - abnormal opening of the penis ... absolutely fits this, he has to have surgery to correct it which we've been putting off, he's just so small :(
cryptorchidism - undescended testicles... absolutely fits this, infact they don't know where his right one is and has to go through an ultrasound to find it - if it's in his belly somewhere it could cause a tumor.
café-au-lait (coffee-with-milk) birth marks ... not that I've noticed
dimples in the posterior shoulders and hips ... in his hips - yes
narrow, flat feet ·... absolutely fits this
scoliosis - curved spine, associated with spinal asymmetry and accentuated by a short leg... he has scoliosis but I'm not sure if he has the leg thing going on (at least not yet) 

Characteristics of Small for Gestational Age Patients in General That Are Seen More Often in Russell-Silver syndrome Patients:

• fasting hypoglycemia & mild metabolic acidosi ... not that we know of. 
• generalized intestinal movement abnormalities: ... absolutely fits this (to all three)
  
  
  
  • esophageal reflux resulting in movement of food up from stomach into food tube
  • delayed stomach emptying resulting in vomiting or frequent spitting up
  • slow movement of the small intestine &/or large intestine (constipation)
• blue sclera (bluish tinge in white of eye) ... not that I've noticed 
• late closure of the anterior fontanel (soft spot) ... absolutely fits this (I don't think it closed until he was 2)
• frequent ear infections or chronic fluid in ears ... absolutely fits this - not with the ear infections but with the fluid, yes - he just had tubes put in and has major hearing issues because of it
• congenital absence of the second premolars ... not that we know of
• delay of gross and fine motor development ... not so much 
• delay of speech and oral motor development ... absolutely fits this 
• kidney abnormalities ... not that I know of
• delayed bone age early, later fast advancement ... absolutely fits this (the delayed at this point)
• early pubic hair and underarm odor (adrenarche) ... nope, not yet anyway 
• early puberty or rarely true precocious puberty ... he's only 2
• classical or neurosecretory growth hormone deficiency ... not sure 
• ADD and specific learning disabilities... not that we know of
  

So he has - in addition to all this, his Dandy Walker Cyst in his cerebellum and the closed soft cleft palate...  and his hypothyroidism (which is the one that makes you gain weight, but in his case, guess not)...  and the possible autism spectrum disorder (going in for his testing Sept. 16)  Anyway - as you can see he fits in the RSS list well but not completely.  I think they were planning on re-evaluating him in a couple years for him, but as a parent that's frustrating because you just want the answers and if there is a treatment (in this case, the HGH) then you would rather they have the best chance of doing it with success.   Another thing that he had is that he had webbing on the insides of his fingers.   The area where you bend your fingers, on the inside of his hand, he had some webbing where he couldn't straighten out his fingers all the way.   (here are two examples of how he couldn't straighten his fingers)  We have managed to - with stretches - fix this problem for the most part.

 

The ASD issues, I swear I become more and more convinced.  Between his sensory issues, his need for routine, the way he melts down with people (not your typical temper tantrum)  his eating stuff he shouldn't (the stuffing of children's chairs, paper, wrappers - he will find and put this stuff in his mouth and just sit there with it)... in the photo he's eating the grass from under the tree ... Even if it's on the low end of the spectrum with PDD-NOS ... yes he makes eye contact, yes he sometimes responds to his name, yes his speech is getting very slightly better since getting the tubes, and his hearing has improved greatly...  but the spinning, the hiding, the seeking out darkness, the melting down at touch, at fabric, at things not being his idea, his fear of darkness (outside, the moon? I don't know) ... things have gotten worse since he got sick, and some things have gotten better.  He's FINALLY more smiley and more his normal self from over a year ago - but he's yanking on fabric when a short sleeved shirt or shorts are put on him and isn't satisfied until he gets long sleeves/pants on ... he gets off his routine and he melts down, he loves tight spaces and melts down when new people touch him and he doesn't want them to (or even people he doesn't see often, like his PT went from once a week to once every 2 weeks, he hasn't seen her for 3 weeks and this last time he saw her - he literally melted down everytime she touched him - there for his 45 minute session lasted 15 minutes tops.) ...  he is very particular about his foods, he eats a few things very well, eats several things okay, and turns his nose up at so much - if the taste or texture don't please him, he refuses it period.  He is very attached to Mommy and even if it's just Daddy around, he melts down looking for me.  I really can't stress either the melting down that happens when his routine is messed with.  

Anyway ...  Nathan was really sick over the past several weeks.  It started with Kaedyn coming down with Rotavirus (mind you, when it started, I thought he had the poops because of teething) ... then Nathan got it and I knew it wasn't just due to teething.  Here is an update I wrote on my main blog about it all - goes into detail...  Pee is so Exciting (Nathan is sick) *Update* ...  and so he almost got hospitalized (thank goodness we got through that on the up side) ... he did lose weight, and he FINALLY started to get better earlier this week.  It turned out he had some e-coli also and I'm not 100% the result didn't come from contamination.  But regardless, he was treated for it.  

 Funny story - the other night we gave the boys baths...  Nathan use to LOVE baths, but ever since I put bubble bath in one night - he melted down - and now he HATES baths.  I mean he use to want a bath 10 times a day, and now it's like it is acid.   So we get him in, wash him up quickly, and get him out, but then let Kaedyn play.  So the other night after Kaedyn was done, I asked Cal (our oldest) to get the water drained and shut the door before Nathan went in there and got all wet in the tub.  See, he hates bathes when he's naked but apparently clothes are more of a security then I realized for him - because then he has no problem playing.  Now he's never crawled in there after bath time, but he does play outside the tub...  well I was getting Kaedyn dressed, I asked where Nate was, Daddy went to find him...  

Yep, he was in the tub..... LOLOLOLOL...  all wet!  So then I had to get him into dry PJ's.. lol..

Anyway - tomorrow will bring back the Nathan's Diary - I can't say it will be daily - since I'm super busy, but I'm going to try.  


Today...  Nathan and I were working on the puzzle that his ST left here LONG ago .. (we should probably give it back, LOL) ...  and Mommy was saying the animal and the sound the animal makes, I would ask "where does the cow go?" and he'd point to the spot and then put it in there.  (yes, typical austim children don't do this, that's why I say I think he's on the higher end of the spectrum.) ... and he even tried to say "MOOOO" and "QUACK" and "BAAAH"

 We also worked on some (Care Bear) color flash cards.  Mainly it consisted of me saying what was on the card "Black Train - choo-choo/ Blue Bear/ Yellow Bear/Pink Balloon" etc...  and he'd take the card... then he took the box from me and would put them in the box, then take them out and put them back in and as he was putting them back in I would re-name the card... this all went on for a half hour.  In the end I was holding 2 cards in my hand and I asked him .. one had a picture of cherries, the other had an orange circle with a heart inside ...  "Where are the two red circles?" .. and he pointed to the cherries!  YAY!!!

And then we were sitting in the living room, he grabbed Daddy's gaming headphones and his brother's DS ... and he was playing ... this was cracking me up!

Then we had some Brunch (Breakfast late, Lunch early) ....  he ate a little, he could have eaten better but he did okay.  He ate most of his bacon (half a piece) and some eggs.

 

He then (later) grabbed Daddy's calculator and was using it as a cell phone.  LOL... 

 

It's been a very rare day where he has just been all smiled and goofiness ...  we love days like this!  Seriously - they seem far between but they are the best.    Right now he's napping...  then it'll be time for dinner and snuggles... reading a couple books ... and dare I say... a bath???

LOLOLOL...