Friday, October 17, 2014

Caleb and Isaac are NINE!!!!

This morning as we woke the twins with an excited Happy Birthday they jumped up and signed excited (which is actually their sign for birthday anyway).  We have been counting down the days for them.  Each year gets a little better and a little better.  To be honest at first we didn't have parties for them..  We had a 1st birthday party and a second birthday party but then parties were way to overwhelming for them so we decided to not put them through the stress and didn't have them for a few years.

The past two years we had one BUT it was just a casual get together, we did not sing Happy Birthday or really even make an extra big deal about the day.   If you've ever known a child with Sensory Processing Disorder things like parties and people singing and clapping at them is way over stimulating and creates awful behaviour.  A typical child without these issues loves the attention and enjoys the birthday scene, my guys would crawl under the table, run to another room, start scratching open skin till they were bleeding or just plain cover their ears and scream and cry.  

We certainly have enough cousins now that we celebrate birthdays all year long just about monthly, if not twice a month.  They are getting better and better at attending the parties and have now started speaking "Happy Birthday *cousins name*" with their iPad...    

Tonight we are getting their favorite pizza from Laskas pizza (locals know that's awesome pizza), we are getting balloons and a special cake that I think they will both love.   We will sing Happy Birthday very softly without clapping and watch Duck Dynasty.  OH and as per their request this will all take place at Grandma and Papas house cause that's where most of the birthday parties happen...LOL

Seriously... NINE!!!????

Happy Birthday Caleb and Isaac!!!

Tuesday, October 14, 2014

Down Syndrome Awareness Day 14 - Tooth Crowding

As I sit here somewhat disappointed in myself that I was not able to make a blog every single day of the month of October I realize... I'm a BUSY WOMAN!!!  I think some of you have tried to tell me that before, and actually somedays I can sure feel it.

Yesterday, my oldest daughter Tristin got her tonsils out.  She is the last of our five children to have them removed.  As you can see in the photo below Caleb is showing you  he doesn't have tonsiles anymore.

This is a great photo for two reasons, ok make that three:

1. Caleb's mouth is open so far we can see all the way back
2. Caleb's mouth is open wide enough to show off his "shark teeth"
3. Isaac doesn't smile very often and we caught one here 

My Down Syndrome Awareness fact to share today is that often children/adults with Down Syndrome do not have enough room in their mouth to properly display all of their teeth. People with Down Syndrome often have crowding and end up with poor tooth quality.  Our guys are definatly part of that statistic.  Their baby teeth came in crowded but their adult teeth came in so super crowded there was no room so they are in double rows.  This is going to be taken care of at the end of the month during surgery.  Dental is going to give them a good cleaning, fix any cavities and extract the bottom back teeth.  Originally the dentist said they would not want to take them for fear that their mouth would grow with them and make room to pull them forward when they were older.  The sad result is that Caleb and Isaac will probably never be good candidates for orthodontics as they have to be papoosed down just to get a cleaning.  If our unfamiliar with what that means, they are strapped down and forced to lay still for three minutes while the dentist gets a look.  Any and ALL dental procedures are done under general anesthesia for a reason.  They are biters!!!!

We have a family joke that these teeth are called shark teeth.... My guys are not the only ones, their cousin Eric had teeth like these too as baby teeth.  He had them pulled and adults teeth came in just fine.

Anyone else have Shark Teeth?  How were they taken care of?

Saturday, October 11, 2014

That's My GIRL!!!!!

Daddy took Camille and Elijah out for their first hunting experience this morning.  They saw a few squirrels but nothing worth trying for.  Elijah was his usual jabber jaw and Camille was wishing she could give it a go again in the afternoon with just her and dad.

I was making fun of her before she left because she was putting on makeup. I told her that squirrels didn't care what she looked like and she said "Oh but they do!". 

So dinner time came, darkness arrived and Camille and Tom rolled in.  I joked with Camille and asked if it was indeed difficult to put dinner on the table from hunting.  She beamed a BIG OLE SMILE and told me she rocked her makeup because she got one!!  Seriously I thought she was joking and I laughed at her...

Its a nice sized squirrel.

First Day of Hunting for kiddos

Camille and Elijah took their PA Hunters Safety Course a few weeks ago.  Since I have never taken it myself I also sat in on the class and got certified to hunt.  I have decided to allow the youngins to go first and let daddy teach them the ways of the hunter.  This morning they got up bright and early, for a Saturday, and got ready to hit the woods.  They actually were ready and waiting on Tom....and waiting...and waiting...LOL
Tom gave them the whole gun lesson and talk and they finally went off on their way.  Today they are hunting for squirrels and looking for wild mushrooms. 

Down Syndrome Awareness Day 11 - It's about Isaac

The other day I did a post all about Caleb, its only right that Isaac gets an all about Isaac post now.
Isaac is truly my baby by 1 minute.  Isaac was Baby B.  Isaac was the reason I had to have an emergency C-section 9 1/2 weeks early.  Isaac, oh Isaac, has kept me on my toes ever since.
Isaac was born weighing in at 2 pounds 10 ounces.  Isaac was born with head trauma from being stuck in my ribs.  Isaac was not immediately recognized as having Down Syndrome because of his facial deformities from my ribcage.  He came out with a heart shaped head.
Isaac has had a rougher start than Caleb.  He was in the NICU double the time Caleb was, he's had double the surgeries Caleb has had and he tends to be the sicker of the two when illness breaks out.
I feel that due to his rougher start he has always been a few steps behind Caleb.  Sitting, Crawling, Walking and most recently finger spelling a bit after Caleb got the concept of it.
Isaac is not very social when it comes to playing with peers his age.  Cousins label him as the twin that hurts them, which breaks my heart.  He often pushes, pulls hair or hits kids smaller than him.  There is no rhyme or reason most of the time therefore we always have to keep our eyes on him when with family members and at school.  On the other hand, Isaac is very social towards adults.  At church he has been called the greeter on several occasions because he's been known to make his rounds to every pew just to say HI to each church family member.  He gives hugs, high fives and giggles to all.  In waiting rooms he's been known to approach total strangers and offer them a hug. He particularly likes very large men. Its adorable when he will approach a big ole intimidating biker dude and just give him a hug and run :)
Isaac was the first twin diagnosed with Autism.  He was actually diagnosed at 22 months old.  We went to the Down Syndrome Clinic with questions as to why he hummed so much and twirled things and dangled things in front of his face constantly.  At that point we were still trying to figure out the whole Down Syndrome thing and had no clue that we would leave the clinic that day with a new diagnosis of Autism.  I was honestly devastated and so emotional for several weeks not knowing how we would be about to handle and understand yet another disability.
One way you can tell Isaac from Caleb these days is by his stimming toy.   A TOOTHBRUCH:
He twirls it, he hits the back of his neck with it and he beats it like a drumstick on things to hear the sounds.  As I sit here typing right this minute he comes up and points to the picture of himself and signs "toothbrush".  He loves his toothbrushes.  So much so that we have ALL learned to hide our toothbrushes in weird places.  If you come to our house you might find toothbrushes  ontop of the fireplace mantle, in underwear drawers, on top shelves of bookcases, tucked in a basket under hair supplies and body creams.  Isaac can and will find you toothbrush and claim it as his own.  Grandma and Papa even know to keep their toothbrushes up when we visit.  Its quite comical and definitely something we will always associate with Isaac.  This summer we went to a local flea market and found a sheet of 12 toothbrushes for $2, we bought three of them.....LOL
As you can see below Isaac even will use is iPad to request a certain color of toothbrush for the day, he's quite particular about his toothbrushes.
Isaac is also my escape artist.  He tries and tries but still cannot open the doors at home.  In the event someone leaves a door or a gate latch open Isaac is the first person to realize it and takes off.  Unfortunately we have had strangers return him to us on two occasions.  Thankfully we had an ID bracelet on him with our contact information.

He doesn't smile as much as his brother does but man oh man, when he does smile you can't help but smile right along with him. 

Isaac struggles to communicate with us and often acts out with bad behavior.  Isaac has terrible chronic constipation issues that I think makes him feel miserable all the time and makes him act out.  Isaac loves pretzels and Cheerios.  Isaac loves his Papa so much that besides iPad its his only spoken word.  He loves to work and learn, he's really one tough cookie.....and he's my baby boy!!

Friday, October 10, 2014

Down Syndrome Awareness Day #10 - Why God?

I have been trying to go through and clean up photos from the past in hopes of never losing them.  Today I found a disk labeled 2008 Recovery.  This means that they already have been in jeopardy of being lost at one time.  What a better way to keep my favorites than to save them to my blog.  I seriously looked at these photos and felt as though this was my life just last month.  I look at these photos and realize how far we have all come.  I look at these photos and fear that I am not so slowly losing all my babies to a thing we all call life.  On days that I feel like throwing my hands in the air and questioning God as to how he can give me so much to handle, I really, really, need to sit and look through photos like I have done this morning.

There are days where I selfishly do ask "Why has God given ME so much to handle?"  Instead I know that I need to ask how I could have allowed so much time pass by without realizing, accepting and inviting in all the blessings and hardships that God has intended just for ME?  There are hard days, there are hard decisions, there are frustrations like I have never felt before.  Some days with the twins being non-verbal, having Down Syndrome, ADHD and Autism truly just does not feel fair to me.  Seeing other children their age (and younger) playing with one another, communicating, laughing, freely running around with the understanding of safety and not taking off into dangerous situations, and just all around being "normal kids" IS hard for me.  When thoughts like this run through my head I'm often stricken with instant regret for my feelings.  Its so easy to slide into the "oh woe is me" days.   And then..... I sit down for no apparent reason to look through photos and get the reality smack in the head.  We have five beautiful children, some are not so lucky.  We have hard times, but so does everyone else on the plant.  I know that God has chosen Tom and I to parent these five children and to do it with the understanding that He is our guide.  As the kids grow older and their likes and dislikes begin to navigate in different directions we can be assured that God has set this path for us and it is our responsibility to travel it with comfort knowing He is with us. 

My husband Tom has always been my rock when I begin to doubt.  There are times that we are at Children's Hospital about to let our children go into surgery for one thing or another and I am nervous and scared.  Then Tom will stop me with tears welled up in his eyes and say to me, we are so lucky to have these boys, we are so lucky that they are just getting this or that done.  Think of how many parents in this very same building are getting the bad news that their child was just diagnosed with this or that and may or may not be coming home.  That puts our day and situation into perspective.

Having a child with Down Syndrome is not a downer, its not a burden, its not a debt we have to pay for some previous sin, its not some sort of punishment or some freak of nature.  I read silly stuff like this all over the internet, its just nonsense.  Having a child with Down Syndrome is in so many ways just like having children without Down Syndrome.  We have three typical children who get in trouble for not obeying, who get hugs and kisses for doing something wonderful, who we love no matter what decisions they make but often remind them,  just in case, to make the good decisions.  I recently read an analogy on Facebook relating a four leaf clover and children with Down Syndrome.  They are both uniquely rare and to be cherished as such.  Having a child with Down Syndrome gives us that don't have Down Syndrome the opportunity to see how easy we have it, how instinctively we just understand things and how they work, how selfish we are and how much we really need to dig deeper for patience and understanding for that which we do not know.

As I sat down to share these photos I never thought I would type what I did, but I'm glad I did and I hope that sharing this will comfort those who have a newly diagnosed child with Down Syndrome or perhaps open the eyes of someone who looks at children like mine with sympathy or disgust.  People with Down Syndrome are people first with all the same wants and needs as us.  Love and Respect being the first things they need and deserve. 

I appreciate each and everyone of you who already does love and respect my boys for who they are and try to do what you can to communicate that to them.  Take a roll down memory lane with me to the year 2008.


Wednesday, October 8, 2014

Down Syndrome Awareness Day #8 - Twins, how to tell them apart

One question I have been asked time and time again is how do we tell the twins apart?  I often say that they look as different from each other as Camille and Elijah do to us.  This often gets nothing more than a giggle and a "Yeah Right!"

We have service providers who have worked with the twins for years and are able to tell them apart as easy as I can.  But if they move on to another case and don't see twins for awhile they go right back to square one.  

I must admit that photographs are harder for me to determine which boy is which sometimes.. Like photo #1 here:

Through process of elimination I know that Isaac has a much rougher start with a double length NICU stay and more surgeries than Caleb so in this photo Caleb is on the left and Isaac is on the right. I say that because Isaac was a little smaller and this photo shows a chunky monkey on the left side.

Speaking of surgeries, my family was often caught pulling up boys shirts when they were little to look for the "Cheater Bar".  Isaac had developed NEC at two weeks old and had to have surgery to remove a section of his small intestine.  He then had a colostomy bag for several weeks before a reversal to fix it.  Thus the scar has become known as the cheater bar.  Isaas also had a broviac catheter placed in his neck in the NICU so he does have a few scars on his neck you can see if you really look.

Another way to tell them apart is something that I found out after I had identical twins myself.  I had never really known identical twins well enough to put this theory to test, but I can say its true in my boys for sure.  The trick to tell identical twins apart is that one twin will have a rounder face (Isaac) and one twin will have a more oval face (Caleb).  Can you guess the photos above who is who?

These boys are so very the same in so many ways and yet so very different in other ways.  Medically, they are very much the same.  One gets a cold the other is a day behind.  One needs a surgery to repair something soon enough the other twin develops the same issue and needs surgery.  Caleb is my comedian as you can see in photo #1 & #2 below... BUT WAIT.. as I was looking through these photos I see Isaac in photo #3, #4 & #5 below and see he is a comedian too.. ok,, I'm stuck.

Actually Caleb is a little more advanced in his sign language and communication skills than Isaac.  Isaac is a little more aggressive towards peers and therefore stays to himself a little more around children.  On the other hand, Isaac loves adults and is known as our hugger.  He loves going around each Sunday at church and handing out handshakes or hugs.  

Rainbow Eyes;
Isaac has the most gorgeous eyes.  When he smiles they turn into Rainbows, see photo #2 below.  I love the joy you can see in his eyes when he is genuinely smiling about something.  I don't get as many photos of Isaac smiling as I do with Caleb so I treasure each and everyone of them.  These photos were taken spring of this year.

If you know my boys personally and can add how you tell them apart, please share.  I love hearing how others figure it out.  Also, thank you for someone asking how do we tell them apart.. If anyone else has a question I can answer I am always looking for blog post ideas.  Comment below!

Tuesday, October 7, 2014

3 Surgeries in one month!! What was I thinking??!!

I guess I didn't realize how much I may have bitten off by scheduling three surgeries in one month.  Lots of pre-op testing and appointments have been keeping me busy.  Then I wasn't really considering recovery time AND the fact that we have a little three day family get away planned in the middle of it all that we've had planned since the beginning of summer.

Yesterday Caleb went and had a thyroid sonogram evaluation done just to make sure that the mass we found on his neck has nothing to do with his thyroid.  He was the model patient and he sat completly still and watched the images intently like he was watching his favorite cartoon.  Today already his ENT at Children's called and said that his thyroid looks great and they will go forward expecting that this is a Thyroglossal Duct Cyst as originally thought.  He said that he won't know for a fact that it is that until they get in there and see.  Best case its just a little mass thats not thyroglossal duct related and they snip it and remove it.  If it is a Thyroglossal Duct Cyst they will have to travel up to the bottom part of the tongue to remove cyst which will be a little more involved but not much.

Today Tristin went in for her pre-op appointment.  She will be having her tonsils out next Monday.  All other four children already have their tonsils and adenoids out and not sure how Tristin got missed but her throat has been a mess for months and the tonsil stones are record size....yuck!!!  We enrolled her in a case study to take and extra step in pain management.  She will apply a topical medicine to her entire neck four times a day for a week to help with pain.  Anxious to see how it works for her.  I have heard time and time again that the older you are the harder it is to get your tonsils out.  With Tristin being 17 she's considered an adult and has been warned that there will be some extreme pain for several days.  I still have my tonsils so I am no good at giving advice on what to expect.

Caleb and Isaac are both having surgery on October 31st.  This was the surgery that was postponed from September 19th due to conflicting schedules with surgeons.  Caleb will have five procedure done.  He will have dental work with extractions, ear tubes placed, an airway assessment done due to his surgery on June 16th that had to be cancelled due to unstable airways, the mass removed from his neck and a hernia repair performed.  Isaac will have three procedures done, the dental work with extractions, he has two perforated ear drums that they are going to see if they need repaired or left alone and a scope to assess his airway as well since they usually have identical issues all the time.

Both boys have Subglottic Stenosis (narrow airways).  We have known this since they were infants that they both have this condition.  This is something that should not get worse but basically just stay the same as they grow.  It is my understanding that the stenosis will grow with them but always be smaller than normal size.  When Caleb could not be intubated in June they came out and said he has a 60% narrowing, more than was on record from the last surgery.  They are assuming he has some scar tissue forming or growing from previous intubations, this is why they are going to do an airway assessment.  Since they are both at risk for intubation they decided to get as many procedures done as possible with this next surgery date.

Asking for prayers that all surgeries go well.  This will be Tristins second surgery (her first surgery was when she was two) and the twins, umteenth...really lost

Down Syndrome Awareness Day #7 - Technology

For Down Syndrome Awareness Month I have decided to go through my old photos and show off photos of my beautiful boys.  We have been blessed time and time again with memories that we wouldn't have without these silly boys who happen to have an extra chromosome in them.

Over the past year they have both gotten very good on the iPad (which they use for communication) and on daddy's Kindle (which they use for games).  Both boys are very technology driven and I can't wait to see the progress they make in the upcoming year.