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Sunday, March 2, 2014

Created a few new Graphics (MT16, Kangaroo Care)

I created a few new graphics this morning ...

For Noah, for Mosaic Trisomy 16

And a series of three for Kanagroo Care Education/Awareness ....   when I was in the NICU with Noah, I had to ASK to Kangaroo Care and then got "training" to do it (I had to watch a video) ... with Nathan, I brought it up right away - DB was trained (he's not Noah's bio-Dad so he wasn't around at that time, all things NICU was new to him with Nathan) ...  and we started right away.  I think Noah was about a 5 or 6 days old when we started Kangaroo Care with him, and Nathan was 2 to 3 days old....

Understanding Dysgraphia

What Teachers Should Know
Regardless of their reading ability, people with dysgraphia have difficulty writing, and may have problems with spelling, writing legibly, or putting their thoughts on paper.

Kids and teens with dysgraphia may have:

  • poor fine-motor skills
  • visual-spacial difficulties
  • language-processing deficits

Students with dysgraphia may:

  • frequently misspell words or incorrectly place words on a page
  • have an exceptionally slow and difficult time writing
  • have an awkward pencil grip
  • have messy or illegible handwriting
  • have trouble taking notes or tests or completing their schoolwork
  • avoid writing and become extremely frustrated with schoolwork

What Teachers Can Do

If you think a student might have dysgraphia, recommend seeking an educational evaluation to a parent or guardian, an administrator, or a school counselor.

Writing is one of the most important keys to academic success. Give students with dysgraphia plenty of extra time to practice their writing skills. Teach them how to organize their thoughts and encourage them to edit and proofread their work.

If students continue to struggle with handwriting, try:

  • using graph paper, wide-ruled paper, or paper with raised lines
  • allowing students with dysgraphia to choose the writing utensils they are most comfortable with
  • making sure the pencil is properly positioned, using a tripod grasp, which means the pencil should rest near the base of the thumb and be held in place with the thumb, index, and middle fingers (certain kinds of pencil grips can be helpful, too)
  • modifying the writing utensil grip as needed
  • recommending occupational therapy to help with writing skills

Additional accommodations may be necessary, including:

  • giving more time to complete tests and written assignments
  • allowing for oral and visual assessments of knowledge
  • using assistive technology, such as word processing and note-taking software
Taken from HERE ......... 

Saturday, March 1, 2014

RARE: Nathan

Nathan is an amazing unique guy.  Among a lot of issues, Nathan has Russell Silver Syndrome which is a type of growth disorder.  It is known as a type of Primordial Dwarfism, which mean proportionate dwarf.  When I was pregnant with him, all we knew about prior to his birth was the Dandy Walker Variant.   We knew he wasn't growing like he should, but he also had a 2 Vessel Cord.  After he was born, he literally averaged half an ounce a week in weight gain, and if he got sick, any gain was QUICKLY lost.  He is 7 weeks away from his SEVENTH BIRTHDAY and only now has hit 30lbs which is what a normal 18 month old to 2 year old weighs.  He is only 3'4" (103 cm/40.6 in) ....   His younger brother who is very healthy ... is 16 months younger than him (5 yrs 7 months - almost) is 50lbs and 3'11" (119/120cm, 47in) ...    

Of course, Nathan deals with a lot more than just his RSS .......

Medical Issues that we have dealt with and that we are currently dealing with: He is 7 years old and 28-30 lbs (depending on the scale) and 3 foot 4 inches (103 cm/40.6 in)…..In Nathan’s short little life, he had been diagnosed with the following: 2 Vessel Umbilical Cord, Low Birth Weight, Hypospadious, Natural Circumcision, Hyperbilirubinemia, Soft Cleft Palate/High Palate, Aortic Septal Defect (healed itself), Feeding Issues, Torticollis, Webbing of the fingers, Hydrocephalus, Bifid Uvula, Dandy Walker Variant (Missing Vermis in his cerebellum), Polymicrogyria (another brain malformation, meaning many folds, DR says the front of his brain looks like a bunch of grapes on MRI), Flat Feet, Tone Issues, Undescended Testicles, Russell-Silver Syndrome (a type of Primordial Dwarfism/growth disorder), Human Growth Hormone Deficiency, Scoliosis, Failure to Thrive, Apraxia of Speech, Non-Verbal, Seizures (when sick), Mild Hearing Loss (hearing aids for both ears), Velopharyngeal Insufficiency, Migraines, Asthma, Allergies and Autism.

Just out of curiosity - I looked up AVERAGE WEIGHT/HEIGHT FOR BOYS ... and I found DISABLED WORLD (dot) COM .....  on THIS PAGE I found the chart .......... which appears as the following screen capture ... (FYI they have a girls chart there too) ....

So on AVERAGE .....  Nathan is the weight of a 2 year old, and the height of a 5 year old.  He'll be 7 in a few short weeks.  His brother on the other hand (younger brother) ... is the weight of a 7 year old and an 8 and a half year old (they have age 9 at 49 inches which I didn't get in my screen capture) ....

Wowzah ....

After reading THIS ARTICLE at Livingstrong (dot) com ....  it says that Nathan is about the normal size for a 3 year old to 5 year old.   And Kaedyn is about what a 10 year old is at........ um, what?

Just goes to show the dangers in thinking too much ... ha ha ha  .. and comparing kids to others.  But sometimes you just want to know where about your child measures up - especially if they have a growth disorder.

So ... just out of a curiosity - at disability world (dot) com ...  they have the Children's BMI Calculator....  so I thought I would check that out ....... and his is what I learned......... You can find that calculator HERE

NATHAN'S BMI (6 years, 10.5 months)

KAEDYN'S BMI (5 years, almost 7 months)

And just for snockers and kiggles .... Noah is right about where he should be for the age of 12 according the chart I found, and his BMI is ........

NOAH'S BMI ... (12 years 1 mo)

Truly - Noah is about the size of an 8 year old.  Nathan is the size of a 2-3 year old.  And Kaedyn is just right... in my experience .....

So then I'm thinking ....  what is normal?    And I found this HERE at WebMD .......

So there is that........... This is Nathan's Charts ....



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.

Friday, February 28, 2014

Celebrate in the RARE!

.Here at My Unique Flowers ....... we like to celebrate being unique.  Every soul on this Earth is UNIQUE ... no two are the same.  Some are a like, some can relate because they have been through the same thing and similar circumstances....   But there are a few placed on this Earth who hide the wings of Angels.  Their fights are ... just a little tougher, a little longer, and harder.  They gracefully navigate hurdles and obstacles as if they were nothing more than a feather in their way.  Others blast threw boulders put in their way with grace.

I have two children who amaze me on a daily basis.  As a parent, watching what they have to go through breaks my heart because I don't want to see them hurting, poked, prodded, struggling though things that a child at their age should never have to go through....   But as a parent, I watch these children stomp on anything in their way and become a SUPERHERO .....  I watch their friends, who struggle equally... become such STARS that no one could imagine reaching the depths of the adventures they go through.

When they cry, we cry.  When we celebrate, they celebrate.

We are lucky to hold these miracles in our lives every day.  We are lucky to witness the miracles of our own children and our friend's children too.

We are ......... amazed.

Today, we celebrate the RARE!  Today, we honor them!  Be UNIQUE ...

Thursday, February 27, 2014

Growth ... and Surgery ....

.So Nathan had a couple of follow ups this week.

The first was with Endocrine - about his growth .... about his thyroid.

Doing the growth hormone shots every night isn't easy for any of us.  I won't do it.  I just ... can't.  Not with the open needle.  I can barely give myself shots.  I let Nathan help me sometimes do my injections, to try to make it easier for him.  But I ... just.... can't .... subject that on him.   But something clicked with Nathan recently and he realized that he needs these, so hopefully - HOPEFULLY - we'll be able to be more consistent and it'll be easier on all of us.   So his growth wasn't all that good.   We're waiting for his lab results to find out if we have anymore room to increase his dose of HGH.  His weight gain is not good either, but .......... we have exciting news!!!

HE HIT THE 30lb MARK!!!!!!!!!!!!!  THAT'S HUGE!!!  Major milestone when a child doesn't have an ounce to lose.   He is about 7 weeks from his 7th birthday...


He was 30.3 lbs and 3' 4" tall (103 cm) ...  still the weight of a 2 year old and the size of 3 year old ...  :/

His thyroid is doing good, his medication amount is the same - no changes there :)

When Mom says stop spinning on your head .... one attaches one self to a stool and spins wildly ...

The clinic in Tacoma has a row boat in the waiting area ... most of the boat is inside, but the nose of the boat is on the other side of the window...  it's pretty cool.  The ores and everything are stuck in place.... so Nathan just flips and stuff, true Autistic he is....  always spinning and flipping ....

I love this thing and wish we could build one at home.  It's a light thing, designed for sensory purposes... they have it set up right by the chair in the lab - and it truly helps.  It's this fixture on the wall that you can touch, it has a bunch of different colored "marbles" (glass balls) ... and they will spin when you touch them.  So you can roll your hands over them and they'll move under your hands....

I don't normally take pictures of the kids during blood draws, but for once Nathan wasn't in my lap .... so I figured I'd take a series of pictures.  Poor kid :(

That appointment was on the 25th ....  (Tuesday) ...

Today, (the 27th)  ...  he had another follow-up.  

This time with urology to discuss how he is still peeing out of ........... three.... holes.

A couple weeks ago Kaedyn (Nathan's younger brother for those who don't know the kids yet) ... came running at me - he yells "MOMMY!!!" and I said what? .... he says "NATHAN IS PEEING OUT OF TWO HOLES" .... lol.... poor kid was traumatized ....

Dr. G (Urologist) was hoping when he saw him a few months ago that he would continue to heal up.  Instead Nathan has to now have a 4th surgery on his little male bits because he got a couple of fistulas after his last corrective surgery which DID WORK - his testicle is still down (YAY!) and his urethra is at the tip of his penis now (DOUBLE YAY!) but he is going to have to go in and get these other two holes under his penis which have become permanent (if not fixed) holes that urine is coming out of.   So he wants to get it done as soon as possible.... so the date was set today........ March 12th.  Less than two weeks ....  ::: sigh :::

He's almost 7 and he's still in diapers.  This isn't an unheard of thing for kids with autism, or other medical issues, but we feel Nathan can totally be potty trained.   It's just convincing him of it!  LOL...

Since we were in Seattle ... we thought we'd try to pop into the ENT department because Nathan has recently started to have a lot of discharge out of his right ear that smells bad :(   With his tubes, we felt it best to get it checked out.  Discharge for him isn't abnormal but this was excessive.  AND SMELLED BAD.

So we got him in (took awhile) and they pretty much got him right back between patients with the On-Call ENT ...  and she took one look at his ear and was like "I'm going to suction that out and take a culture" ... so she did.  She told us (which we didn't know) that any discharge is an ear infection and it means the tube is doing what it is supposed to.

So that's good.  I would have taken him in here to his reg PED but she left the clinic and he's on the cusp of switching to a new DR as of Saturday - and we were never able to find another PED through his old insurance and the doctor who he was assigned to after his PED left wasn't comfortable dealing with him (or Noah for that matter.)

In the car on the way to Seattle ....

We had to stop for lunch ... things were crazy this morning....  

Spinning again ... ha ha ....

MR. Daring ... (Dad was behind him) ... he decided to climb on the spinning stool to get a drink of water... and that goofy face, that's a normal face for him...  

5 drops in his ear twice a day....... even the pharmacist (whom we love) said that's a lot...

So we're doing drops ... getting rid of his stanky ear ... and going to be packing up or surgery ... again ... in a little over a week for another overnight stay of at least a night (but he usually stays at least two) .... :/   But luckily with his last surgery - they figured out a cocktail for his anesthesia that doesn't make him throw up ... yay!  So hopefully - doing that - will continue to work for him.  

Wednesday, February 26, 2014

A Look at STIMMING ...

I found an amazing site that lists possible ways children "Stim" .....  so naturally I stole it, take no credit for it and direct you back to the SOURCE of it...  it is from a wonderful Sensory Processing Site - CHECK IT OUT!

But here is some of the information from one part of the site.

.What Is Stimming?

 What is stimming?
 Stimming is a repetitive body movement, such as hand flapping. The term is shorthand for self-stimulation. Repetitive movement, or stereotypy, is often referred to as stimming under the hypothesis that it has a function related to sensory input.

dangling strings
shaking toys
wiggling fingers--in front of or to the side of face---most often in exactly the
same spot
lining up toys
repeatedly stacking toys and knocking them down --excessively
spinning wheels on toy cars/trucks
pushing toy trucks and cars while tilting head to watch wheels
watching out the window at cars driving by
staring out window
watching dust specks in the air
watching ceiling fans
staring at dining room lights
looking sideways and/or upside down at TV
nose on TV
flipping pages without looking at pictures
flipping toys
wall walking
opening/shutting drawers and doors
spinning bowls
spinning toys
walking in patterns
watching water
running sand/beans etc. through hands while watching
spinning coins
looking at maps with nose about 1" away
following roads on map with nose
box hopping or lining up chairs, laundry baskets, boxes and storage
containers in a path and stepping from one to another
from foot to foot
back and forth while sitting
side to side while sitting
throwing or dropping toys over and over
throwing toys over shoulder
picking fuzz
shredding paper
looking out car window with peripheral vision (while giggling)
walking down hall with head to one side
standing on head on furniture
running in circles
rewind video while watching it rewind
excessive drawing
rubbing pencils together
watching own reflection in doorknobs, toasters, windows at night, oven door,
shiny faucets, tv screen when off, clean cars, blank computer screens and
holding up small toys (usually characters) in front of TV while video is going
perseverating on Thomas the Tank or other train stuff
turning head in light patterns made by blinds
obsessively pouring a "slinky" from hand to hand
watching a yoyo with peripheral vision over and over
multiple cartwheels frequently and excessively
head shaking
spinning own body or twirling around
twirling self under own arm which is against a wall
dangling pieces of grass or twigs
twirling long hair or braids (girls) in peripheral vision


chewing on insides of cheeks
rubbing clothing between fingers
biting fingernails
chewing fingernails
scratching obsessively/to bleeding
head banging
teeth grinding
grabbing someone's arm with both hands and squeezing with head against
rubbing face/hands

blurting out loud and/or high pitched noises
Repetition of odd noises/sounds
talking to self-- excessive and nondirective
echolalia of phrases, movies, songs........
nose humming
banging on everything
throat sound--compulsive
pounding toys or books
excessive giggling
excessive pretend play
electronic games that repeat
inappropriate giggling (often a sign that they are stimming)
repeating a video scene over and over
telling the same story over and over
constantly singing
reciting alphabet over and over

smelling objects
sniffing people

licking objects
placing objects in mouth

excessive pretending
acting out a movie scene repeatedly
sharpening and sharpening and sharpening pencils
writing numbers or days of the week over and over

Stimming is repetitive stereotypic behavior commonly found in Autism and Sensory Processing Disorder, but also found in other developmental disabilities. This behavior may involve any or all of the senses in various degrees in different individuals.

Sunday, February 23, 2014

5 Things to know about Families Dealing with Disability

I saw this link on Facebook to an article on Huffington Post ........ and I absolutely LOVE it .... so I wanted to share it.   I take no credit for it.

This is the original SOURCE ....  I take no credit for the following article....

5 Things You Should Know About Families Dealing With Disability

Posted: 11/07/2013 5:10 pm WRITTEN BY: 

Disability is part of my family's daily life and it has been since my oldest daughter was born with a chromosomal abnormality over seven years ago. My daughter's genetic disorder resulted in a variety of disabilities, both cognitive and physical, that impact nearly every aspect of our lives. Usually we go along with our routine, but sometimes I am struck by how little others know about disability and what life is like for us. I have been reminded of this recently and wanted to share five things I wish everyone knew about disability.
1. We really, really dislike the word "retarded." Please stop using it. Now. The r-word is loaded. It is pejorative. It is hurtful. For those of us with loved ones with cognitive disabilities, the use of the r-word turns them into lesser beings not worthy of the same dignity and rights of those not struggling with the same difficulties. Not everyone has thought about how using the r-word impacts those of us dealing with disability. I get that. But if we try to explain it to you please listen to why it is not okay to use the r-word even if, as I was told recently you "didn't mean it that way" by a woman who then stormed off somehow angry with me for trying to explain to her how her use of this hateful term impacts my daughter and my family.
2. Some disabilities are invisible. It would be convenient if everyone that disability made it obvious to the rest of the world in some way. Individuals who have visual impairments often use white canes or seeing eye dogs to help them navigate the world. Everyone knows that a wheelchair indicates that someone does not have full use of their legs. But, the person dealing with muscle weakness who can walk, albeit with difficulty, may look completely capable to a casual observer. The child who has autism and deals with sensory issues may look like a typically developing child having a bad day or a brat to you. A child with no obvious differences may have an oxygen monitor or feeding tube tucked away under clothing. But, these disabilities are real. They make life difficult, often on a level unimaginable to most. Remember that the next time you think someone is "faking" a disability for some perceived advantage, whether it's a parking spot closer to the door or skipping the line at Disney World. Most individuals with disabilities you cannot immediately recognize would gladly give up the small accommodations for which you may resent them if they could also give up the disability that entitles them to these accommodations in the first place.
3. It's okay to ask questions when disabilities are visible. My daughter uses an adorable wheelchair. Not all wheelchairs are cute, but hers is sky blue with a rainbow embroidered on the seat and has front wheels that light up if you push it fast enough. To other children it looks like a fun ride. Kids point at it on the street. They ask for rides. Usually, their parents try to shush them and pull them away. Well, guess what? I know that my daughter is in a wheelchair. She's been using it for years. When she's in it, it's clear to everyone that she has a disability. I don't mind questions. In fact, I encourage them, especially from other children whom I often allow to push my daughter's wheelchair a short distance to remove the mystery surrounding disability. I welcome the opportunity to explain to children that some people are just born differently. I don't mind discussing disability with adults who may wonder about our circumstances. It is only through open dialogue and communication that we can educate others about disabilities of all types and promote acceptance.
4. We are not heroes. Families that include a loved one with a disability often hear that they are amazing or that others don't know how they handle it all. But, the thing is, backing out is not an option. We did not take on a burden out of altruism. We deal with the circumstances we have been dealt because we have to, because we have no other choice. We deserve no special credit for this. I have no doubt that most of the people who make these statements to me would do the same if they were in my shoes. They wouldn't have a choice.
5. Be considerate. You can try to step into our shoes and not impose your own rules on us. It's not difficult to figure out some things that might make life easier for people with disabilities. But, sadly, most businesses and even schools and churches do not take the steps needed to welcome individuals with disabilities, such as installing ramps or elevators, until they are legally required to. If you want to be better, you can take small steps even when they are not legally required. You could open the door for a mother pushing a wheelchair even if it will delay you by a few seconds. You could ask your child to let a child with disabilities take a turn on the swing since it may be the only piece of playground equipment she could use. You can respect measures that have been put into place to help those with disabilities and their families by not sitting in clearly marked movie theater seats that have been especially designed to accommodate adaptive equipment. You can let the individual in the wheelchair on the elevator first, even if you have been waiting longer. The mother at my son's school was certainly not considerate when she told me recently that a handicapped parking space could only be used by a family with a child with disabilities who attended that school -- and not by a parent with disabilities or a family who may need to bring along a sibling with disabilities to drop-off. Imposing arbitrary, uninformed opinions about who "really" has a disability or need for accommodation is hurtful and harmful, especially when expressed in front of children who are still forming their opinions about disability and may be unsure how to react themselves.

Tuesday, February 11, 2014

The CRABBIES be going through the house....

.We call it Kangaroo - because it's like putting him in a little pouch, all tight and snugly.   Not like Kanagrooing in the NICU where it was skin to skin....  but it's the same premise.  This is Kangaroo to help give him some positive pressure (sensory) so that he can work through his emotions at the time.  We do it when he's really upset, usually when something has changed or he's not getting his way and he thinks he should be... or his brother(s) are picking on him or not including him or just being plain ol' mean.  Nathan comes to me all the time, usually he tries to crawl into my clothes, or if I'm wearing my big black sweater he'll crawl in there.... but mostly we do it with big blankets or sheets that I can wrap around me and keep tight...

Today - he crawled into my sweater and every now and then, I can bring him out of whatever extreme emotion he's in by being goofy.... today, we did that.  And took selfies ....

Nathan wasn't the only crabby one in the house today.  Noah was too ... and he was wearing the appropriate attire too ....  The Grinch....

Monday, February 10, 2014

Noah got his Expander

Noah got his expander today ..... it sits on the roof of his mouth and it gets "turned" every day to expand his upper jaw to make room for more teeth.

He's not too happy about it   ....