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 ...

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...

HUGE!!!

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.  

New Glasses

Kaedyn had to get some new glasses this morning before we took Nathan to his appointment.  So we rushed off to go get Kaedyn's new glasses.

He fell asleep right away - apparently, it's too early for him ... ha ha ha ha ....

Here is our handsome guy with his NEW GOLD Glasses....

He has an eye appointment coming up soon :/

Yes .... he is amazing :)

.So ....... what is one supposed to think when their child sits in a bucket ........

................... I mean other than "grab your camera and take pictures" .....

Yes, this is seeking out some sort of sensory input ... LOL....

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: 

Jamie Davis Smith

D.C. Mom, Photographer, Kid at Heart

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.

Chocolate Milk Bubbles

.This morning ....... Nathan got some chocolate milk.  Now, normally I don't allow him to blow bubbles in his drinks ....

........ he does it a lot, and I am always "Nathan stop doing that" ...  I just ask him NOT to do it and usually he will listen.  

.......... This morning, though, I just grabbed my camera and was amused by the whole thing.  You can see how happy this made him this morning.

This is love ...... all around :)

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....

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   ....