UPDATES *Calahan*

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I haven't updated in awhile, we've had a lot going on with my husband losing the ability to walk (unassisted short distances, not at all long distances)  ...  so I thought I better start updating :)   We'll start with  the oldest first :)

Calahan has been going through a lot this year.  He has been in and out of urgent care, physical therapy and what not because of muscle/joint issues and pain.  As if the kid doesn't have enough to worry about with teenage angst ...

Anyway ....

We thought it was his joints - growing pains and all - and his muscles.....  and he does get growing pains!  Anyway - then we thought it was arthritis due to his broken shoulder (from birth) ... maybe effects of his scoliosis ....   in other words ... we just don't know.


These pictures were taken one night in January in Urgent Care ....

texting his girlfriend.....

 Ooooooooooooh the pain!!!

 Ugh it hurts here too......

 Back to texting the girlfriend...

In February it got so bad that he couldn't move his head - period -exclamation mark - at all.  Over the last couple months it's gotten better ...  he's gotten some physical therapy and been doing some exercises.  The PT thinks his muscles are too tight in his back, especially the ones that runs along his spine, and he's got to get them stretched out.  Doesn't help he sits hunched over and all that....  so now it's constant "Calahan, sit up straight!" on my end.  No fun at all...

He's not doing so well in school - and Doc thinks it might be because his ADHD meds aren't 100% right.  He's on a high dose right now and he is still struggling pretty bad.  So she wanted him to go see some behavior health people.  This happened the other day.  Cal was super nervous no matter how much we tried to put him at ease.   Went through an intake and they determined that Cal has some major anxiety, and a little depression ...so they want him to go to a different place that has a lot more services.  We'll have to go through intake with them again - and do all that all over ...  but at least we're on a path ....

Dentist:  2 cavities and a root canal :/  poor kid - he refuses ...  and he's bigger than me...

Back in Fall 2010 - he went through some testing in school - learning disabilities ..... it was determined he has DYSGRAPHIA ...  it's a disability where he can't get the words from his head out through his hand.  He has to - usually - verbalize it ...   the school is dropping the ball here.  

That's pretty much it with Calahan :)

Update on Nathan....

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We ended up getting Nathan home and things were hard for about 2 weeks.  Every diaper change, every time he even THOUGHT we were going to change his diaper, he would start to get anxious and cry.  The diaper changes were painful for him.  We managed through them though, and by the end of the time he had the tube in we'd start getting the 2nd diaper on him and we'd go "all done" and he'd instantly stop crying and go "all done" himself.  Very cute, but always heartbreaking. 

He immediately started to potty train after the tube was taken out and he is a Potty Training CHAMP!!!  He is peeing in the potty very well, he's wearing underwear all day when he's home and he rarely has an accident.  The only thing we can't seem to get him to pick up on, doing stinky in the potty.  Once we get him to understand he has to do that in there, he will be potty trained completely.  But right now he's got his potty jar (treats when he goes) and a pile of underwear he loves to wear, and he's happy. 

Both Nathan and Noah had appointments with orthopedics ...  we were told by the kids Ped that Nathan's records say that his Ortho in WI said he had Scoliosis... and then the radiologist based on the x-ray said he did not.  So I was all confused.  Good news is, third opinion .... he has a nice, straight back... no scoliosis.  2 against 1.... I'm removing it from his diagnosis list.  However, Cal does have it....  phhhh ...  Noah's tone issues are still really bad.  She said she doesn't see any point in casting this feet because she was sure it really wouldn't solve the problem.  This goes beyond tone issues in his feet and ankles, and lower legs.  He has pretty bad tone issues from his hips down.  She also noticed that he had the shorter leg without even measuring him.  So she wants him to see the skeletal dysplasia team.  They also want Nathan seeing them for his tone issues, where Noah is extremely stiff, Nathan is super flexible.  They also want Nathan to see the Neurodevelopment team because of his speech issues. 

As for Nathan's HGH shots, he's doing really good.  He knows he has to have that before bed, so he asks for it some nights.  This one night, he shocked me!  He saw that I had the easypod out warming up, and he comes up to me, he crawls up on my lap, reaches over, next thing I know he has the paper backing off the needle container and is handing it to me.  LOL...  apparently he was ready for it.  So I ask him, and then he gets up on his Dad's chair and leans over the back of it.....assuming the position!!   So I asked Calahan to come take pictures because I know some friends and family have asked.  Now, we have to give it to him in his bottom because that's the only place that he's got enough fat build up so .. I blocked out some of it ... but here he is that night... 

Here he is assuming the position ... he actually started to take off his clothes when I wasn't moving fast enough

 we drop one side of the diaper and no one ever sees the needle, you push a button on the top and that electronically puts the needle down...

 This is while the shot was going on...

 Afterwards .... he gets to put the needle (in it's container) in the sharpie box...

 And then we have to put the whole thing back in the fridge ...

(I apologize for my husband's messy desk! LOL...)

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1.03.01

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!

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...