RARE: Noah

My son Noah has Mosaic Trisomy 16 ..... He is extremely rare. While I was pregnant with him, I was given NO HOPE. None. But I still continued to have hope. I continued to love him and protect him in my womb. I was told he would be born still. If he wasn't, he would take his last breath sometime with in the first 24-48 hours of his life. He was born early, 1lb 12oz. Instead of taking his last breath in that time.... at around 40 hours old, he was breathing on his own - unassisted - and removed from the vent. My child, that I was told would not live, would not be compatible with life, would be so mentally and physically delayed, it wouldn't be "worth it" to continue with the pregnancy (that I flat out refused to listen to that advice).. thrived. That child I was told would not live, is 12 years old. He has developmental delays, medical issues, and hurdles to over come .... but don't tell me he doesn't have a quality of life! He is amazing, everyday he is amazing!

Here is a list I recently compiled with the things that Noah has dealt with and is dealing with that is of current concern....

Medical Issues we have dealt with that may not be a big concern at the moment: severe asymmetrical IUGR, low fluid, small poorly functioning placenta, heart decelerations, bilirubin in amniotic fluid, Low Micro-Preemie Birth Weight, On Vent for 40 hours, Brachycephaly craniosynostosis, enlarged right kidney, ASD & VSD (3 holes in his heart all together), eye pupils shaped like footballs, Hypospadious, Natural Circumcision, Hyperbilirubinemia, he had both Apnea and Bradycardia (Brady’s he had, Apnea he didn’t start until a few weeks before his due date)... Brain scan at one point showed some fluid on his brain that was later declared a "variation of normal", umbilical & double groin hernias, oral sensitivity issues (taste & texture)... sound sensitively issues... speech delays....low muscle tone, tone issues from his hips to his toes, C-DIFF bacterial infection from antibiotics and started to go into Kidney Failure, Broken Nose, Cyclic Vomiting Syndrome ....    He has had surgeries to repair his hypospadious, hernias, and to put in ear tubes, also dental surgery... and he has been put in the hospital/put under for countless tests.

Medical Issues we are currently dealing with: Mosaic Trisomy 16, Glomerulonephritis & Hematuria (both kidney issues), Hearing Loss (in his left ear, he has a hearing aid).  Fine Motor Delay, Mixed Receptive-Expressive Language Disorder, Dyslexia & Dysgraphia.  Tone issues & Supinated feet. (his list is a lot longer, but this is the basics right now), Sensory Processing Disorder, environmental allergies, braces, skin growths/moles that are being "watched," he has ongoing Speech, Occupational, and Physical Therapies .... he homeschools due to having a poor immune system and catching everything he's around, missing more school than being there.

Facebook Signs ...

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I was talking to my girlfriend and telling her how I was annoyed with some people.  I would ask people who are my "friends" and "family" to go like our facebook page.  What is the big deal?  You go like a page, you get our various graphics we share on your page.  So much of it has to do with awareness for different things, or uplifting words - or news articles.  I share a lot of things from other pages, and then I save them and I post them in the albums on our facebook.  We have about 38 or so albums right now.  There are a bunch of different Autism albums, there is one for IEPs, Chromosome Abnormalities, Learning Disabilities, Inspirational Words, General "Special Needs," Bullying, Love Letters to Special Needs Parents, Premature Birth, Growth Issues, and a lot more things.  

So anyway - I share something - I ask for people to like the page....  hours later...  nothing.  Not even one like.  It's been like pulling teeth to get people to follow the page.  At first I just didn't care ...  but I really do want to help bring awareness to these medical issues.

So I ask people, and I message people on facebook ....  and still nothing.  But I see them share stuff of other peoples kids, that they don't even know personally, and I see them share crap like "Share this Llama for no reason" and it's just IRRITATING ....  it's like, fine ... I guess you don't support our kids.  Thanks.... no not really ....  just actually hurts a little.

So my girlfriend suggested that I do those pictures with the kids holding up the signs.  I'm like, okay ... that's a good idea.  So today I did some with the kids.  I'm gonna share one a day for the next few days and see how it goes.  But here are the pictures.

If you read this and you'd like to LIKE the page, we'd appreciate it.  Trust me, we'd really appreciate it.  Nathan "helps" me with the page and Noah asks how many people have liked it everyday.  It's not just my thing, it's theirs too.  It's the whole families.

 **Update**  We were at 63 likes prior to starting the pictures. We'd get one or two likes a week - if that - prior to that.   So now we're up to 88.   I know we won't get to 1,000 anytime soon.  I only put 1,000 on the cards so that we could use them for awhile.

Dysgraphia ...

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Shortly after moving from WI to WA - we put Calahan through some testing through the school ...  for learning disabilities.... 

Results came back that he has Dysgraphia ....

I did some inital research on it - but it wasn't until I really started looking into Dyslexia that I saw that Dysgraphia is under the umbrella of Dyslexia ....  and ADHD is under the umbrella too?? 

So I knew that Dysgraphia meant that he had an extremely hard time getting things from his brain out through his hand.....  I knew if he verbalized answers, it was better...   He is FAILING all his classes... and his IEP is not being followed... and after bringing it up - continues to not be followed....

DESCRIPTION OF DYSGRAPHIA

‘Dysgraphia ( agraphia) is a deficiency in the ability to write, regardless of the ability to read, not due to intellectual impairment.

People with dysgraphia usually have problems writing on some level, and often lack other fine motor skills, finding tasks such as tying shoes difficult. It often does not affect all fine motor skills.

They can also lack basic spelling skills (for example, having difficulties with the letters p, q, b, and d), and often will write the wrong word when trying to formulate thoughts (on paper).

In childhood, the disorder generally emerges when the child is first introduced to writing. The child may make inappropriately sized and spaced letters, or write wrong or misspelled words despite thorough instruction.

Children with the disorder may have other learning disabilities, but they usually have no social or other academic problems.’

Quoted from Wikepedia

SYMPTOMS OF DYSGRAPHIA

1. Students may exhibit strong verbal but particularly poor writing skills.

2. Random (or non-existent) punctuation. Spelling errors (sometimes same word spelled differently); reversals; phonic approximations; syllable omissions; errors in common suffixes. Clumsiness and disordering of syntax; an impression of illiteracy. Misinterpretation of questions and questionnaire items. Disordered numbering and written number reversals.

3. Generally illegible writing (despite appropriate time and attention given the task).

4. Inconsistencies : mixtures of print and cursive, upper and lower case, or irregular sizes, shapes, or slant of letters.

5. Unfinished words or letters, omitted words.

6. Inconsistent position on page with respect to lines and margins and inconsistent spaces between words and letters.

7. Cramped or unusual grip, especially holding the writing instrument very close to the paper, or holding thumb over two fingers and writing from the wrist.

8. Talking to self while writing, or carefully watching the hand that is writing.

9. Slow or labored copying or writing - even if it is neat and legible.

Quoted from: www.as.wvu.edu

Suggested Modifications for the Dysgraphic Student

1. Allow reduced standards for acceptable writing.
2. When possible reduce amount of written work.
3. Allow student to type or tape assignments.
4. Do not have student recopy illegible material. It will only get worse.
5. If unable to read student's answers ask them to give it orally and give partial or full credit if they are correct.
6. Do not take off points for letter and number reversals but point them out and have student correct if appropriate.
7. When student has, multiple homework assignments allow them to do what they can on their own and dictate the rest to an older sibling or parent.
8. Have the student use graph paper for written work.
9. Do not have another student check the dysgraphic student's paper.

I got those from HERE.... 

If I wasn't already concerned (which I was) ....  even more so now.   This is an example of Calahan's handwriting (at age 16) ....  from today .... the green is Calahan and the blue is Noah (who's dyslexic and 10, he was just diagnosed last year)

UPDATES *Noah*

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 Noah hasn't had a lot of things going on recently.  He's had a few follow up's with specialists...  and various other things.  If you don't read my other blog, Noah had a shooting at his school recently and it has really made us re-evaluate public school vs. homeschooling.  On one hand - I like the break him going to school gives me .... however, he's at a 1st to 2nd grade level overall.  He has dyslexia and who knows what other learning disabilities.  He'll be going into 5th grade this fall and even though I have asked the schools to hold him back - because he has expressed he doesn't like being pulled out of class - and especially when he's sitting in class and doesn't understand what is going on - now, he has a folder of worksheets he can do when he feels like this.... and he pulls it out on his own to work when he feels like that ... which is great - but he has told me this all makes him feel stupid.  Noah isn't stupid.  It makes me sad.   So the schools unwillingness to hold him back and pushing him through with his peers is - in my opinion - not doing him any good.

He is Mr. Popular... all the kids love him.   He says all the time he has no friends.  But I've seen him in action.  He doesn't care about it all - and maybe that's why everyone likes him - because he just doesn't care.  But everyone flocks to him.   He will strike up a conversation with anyone around - no matter the age... he just loves to talk and tell you all about the stuff he thinks is super cool. 

So I'm torn....  I love that he gets all the social stuff at school but is it worth it in the long run?  Social is easy though - there are homeschool groups and other stuff....

But first we are doing a trial this summer to see how things go - if Noah listens to me (he didn't last time we homeschooled) ....  then we'll continue.  Otherwise - back in school he'll go.

So - Noah has also been complaining a lot about stomach aches.  Some mornings I think it might just be an excuse, others I believe him ....  so it's hard.  Took him in - can't find any big reason for them.  ::Shrugs ::

He lost his ear piece for his hearing aid.  Silly boy .... after a few days I called his Audiologist - told her - and scheduled to go in ....  so we had to go to Seattle to get a new cast of his ear so they could make a new mold to make a new ear piece ...

Here she was putting in the sponge in his canal so the goop wouldn't go down too far ... 

 He picked out RED ... DARK BLUE ... and CLEAR with LIGHT BLUE GLITTER this time

 Putting the goop in his ear ....

 putting some on his hand so he knows when he hardens

 playing with the goop

 Goop in the ear

 Is it hard yet?

 the look of boredom ... ha ha ha

 Taking the mold out

 Touching it....

So it takes a couple weeks for the new mold to come in ....  and so we picked it up yesterday (April 18) ...

 Colors up close....

 Pretty cool huh!?!

We think so!!

In other news - he got another hearing test ..... and his hearing is stable....  there aren't really any changes, and she did a test with his hearing aid in too... His right ear is still normal and his left he has significant hearing loss in both the ear and the bone... 

 His numbers ... even with his hearing aid in he doesn't hear perfect, but it's better...

 So his hearing is completely stable - which is a good thing :)

He also had an appointment with his kidney doctor....   there is still blood in his urine (of course) and a trace of protein.  He says everything looks good for now, but if he should ever have more than a trace of protein in his urine he's going to want to do a biopsy ... so ...  for now, it's wait a year and see how he's doing then, unless he gets sick.

And that's pretty much all there is for Noah right now :)   Oh ....  right....

Noah is 56 lbs and 14oz ... and 4 ft 3 inches... he's at the 4th percentile for height and the 6th for weight...

Oh and Noah's recent dentist appointment - NO CAVITIES!!!  He's got some major shark teeth going on - his baby teeth just aren't falling out and the adult teeth are coming in....