Twins turn TEN!!

Today was such a great day.  Today is the first time EVER that the boys understood that it was their birthday.  We had the countdown going on the calendar.  We explained to them that we were planning on a party with family and made sure to name all their cousins that were going to come.  We asked them if they wanted balloons, cake and ice cream sandwiches, to which we got a big YES for each.  As we arose this morning the first thing that Isaac showed us on his iPad was that it was "Caleb" "Isaac" "Happy Birthday"!  Caleb started running around the house signing Happy Birthday "C" and "I".  It was party time :)

 The wonderful thing about a close large family is that you really never need to invite friends to parties.  Just family who attended was about 30 people.  And Caleb and Isaac are so lucky to have two sweet girls, Sami & Rebecca, who have worked with them for several years at some summer camps they attend and have been buddies with them for the Challenger League baseball games come to their birthday party this year.

As is the case with many children with Autism, crowds are hard on them.  As is the case with many children with Autism, noise is hard on them.  Each year gets better and I am tickled with the progress these little fellas have made.  30+ people were prepped to sing the Happy Birthday song very softly and quietly.  This is the first year both boys were able to stay at the table the whole song.  Usually Caleb is so overcome with emotions he has to run away crying and ends up very hard to calm down.  Today he hid under the table and covered his ears BUT he stayed at the table!!  Isaac tried to blow out the candles and when he was unable he started swatting his hand at the candle flames so we quickly helped him blow them out.  Caleb was not interested in even trying to blow out candles this year.....again.

Caleb was really into opening presents, Isaac not so much.  Here you see Isaac taking a DVD video out of the bag.  What the camera did not catch was him throwing it across the room and giving me a look of "Leave me Alone"!

Since Isaac was not being a trooper with opening gifts Caleb got to open double!!

After gifts were all opened both boys needed some "alone time" and went their separate ways.
Caleb went to play on his iPad >

Isaac took a nap, ice cream sandwich on his face and all  >

Cleaning up after guests left a big smile crossed my face as it's also apparent that my family is truly getting to know the boys.  There are very few things they like and gift giving has been difficult.  They are not usually ones who like to play with toys.  Caleb carries his Ernie doll everywhere and does play with him daily but we have had years and years of toys gifted to them only to re-gift or give away because of no interest.  Today the gifts included several bags of Doritos (for Caleb) and several bags of pretzels (for Isaac), a couple cases of crackers for both boys and a few sensory toys that they will play with when they are in the mood.  I think we are all coming a long way!! The birthday parties for the twins may not be typical games, noise and celebration but it sure was a good time. 

TODAY IT:

*snowed for the first time this year

*was a wonderful time to gather as family to celebrate these boys

*was bittersweet to have the twins open a birthday card from their "Granny Ann" from church.  She gave us their card Tuesday evening at our Gospel Meeting at church so they could open it on their birthday.  She passed away last night after an accidental fall yesterday morning.

*was nice to see Ron and Martha Dush who were in visiting inlaws from Erie

*is wonderful to reflect on just how far we have come in 10 years and to begin imagining what the next 10 will bring us!

Common statements about special needs, my answers

For Down Syndrome Awareness month I always feel compelled to take that extra minute to provide education and tips on subjects that may or may not ever come up in daily conversation with my friends and family.  My prayer is that I may write something that helps someone looking for the "right words" when it comes to talking to a parent with a child or children with a disability.  I know that the words people use to describe my family dynamics or my identical twin boys, who both happen to have Down Syndrome and Autism, are heartfelt and well meaning. BUT....   I never seem to find the right words when certain statements like those listed below are said to me spontaneously.

1.  God knew what he was doing when he gave those boys to YOU!

So funny to see them BOTH with the same expression, unprompted

I have no doubt in my mind that God new what he was doing.  He saw me as a broken selfish woman who thought she had the whole parenting thing down.  Before the twins I was actively homeschooling my first daughter. I was a mom to three very typical very busy kids, ages 7, 3 & 1.  These three kiddos consumed my days and nights and I often felt so overwhelmed with the day to day tasks of keeping up the house and following the kids different schedules.  I looked at those with sick or misbehaved children with pity and relief that I was not enduring that in my perfect little family.  I confess that!! I remember thanking God on several occasions for my healthy happy children with the belief in my mind that I don't know how in the world I would handle something like that myself. Which leads me to my next comment.

2.  I don't know how you do it all

Honestly, neither do I!!  As we are about to celebrate the twins 10th birthday at the end of this week I truly do not know how we have gotten through all of our days during the past ten years?! Therapies, monthly doctors visits more than two hours away (often occurring more than just once a month), after school programs, and many, many team meetings with behavioral specialist, autism clinics, down syndrome clinics, etc.  I look back and realize we have come so very very far with them yet I am still to this day an impatient person.  There are many days where I have to count to ten, or walk away, regroup and come back with a smile on my face or a calmer voice when trying to get the boys to corporate with one of my demands.  It's more often than not something that has to be done on "their time and not mine".  

VitalStim, a feeding therapy we did weekly for several months to improve swallowing and feeding issues.

I reckon I can relate our journey to a moms journey who has a son excelling in a sport.  She takes him to all of his practices, she provides him with all the extra support needed to improve his skills, she attends all the team meetings and volunteers for all the fundraising activities, she travels to all the games and cheers him on, she beams with pride when her son accomplishes a great play and in the end she has high hopes that something good will come from all effort and attention she has put into her sons athletics.  I am no different.  I do what I have to for my boys to achieve life skills to the best of their abilities.  That's my answer, I do what I have to, what I need to do for my boys to be the best they can be because of an unconditional love that I have for my children.  My story may be different than yours but our hopeful outcome should be the same, we must try our best for our children so that they may become their best.

3.  He doesn't look like he has Down Syndrome to bad.  Is he mild?

When the twins were just tiny babies and toddlers I heard this all the time.  I could tell there were people who were "afraid" to ask if there was something different about my guys.  Then there were a few who said statment #3.  The answer is no you can't have a different level of Down Syndrome, meaning mild or moderate Down syndrome.  If you have it you have it, there is no cure, there is no fix and there doesn't need to be in my own humble opinion.  Down syndrome is a genetic disorder where there is an extra 21st chromosome.  People with Down syndrome have three 21st chromosomes therefore Trisomy 21.  You can certainly do your research and find all the information you need to understand the differences between Trisomy 21 vs. Mosaic Down syndrome vs. Translocation Down syndrome.  There are however, different levels of cognitive abilities just like there are for people without Down syndrome.

4.  Please tell me you take medication to get you through.  How do you cope?

First of all, I have an amazing husband, named Tom, who works very hard and long hours to provide for our family so that I can stay home to tend to our homelife.  He also makes every effort to attend every out of town doctors appointment with me and all IEP's for school.  I genuinely thank God for the man he placed in my life to raise these children with.  I also have grown so much as a Christian since having the twins.  I attended church faithfully prior to having them but not as committed as I have become since having them.  Leaning upon the love and compassion of Christ allows me to try my best to be like him.  Knowing that I cannot ever be perfect nor know what to do in all situations allows me to rely on giving it all to God, and I so often do.  As Christ endured trials and tribulations we must all realize we too are subject to the same.  Knowing that if we follow the gospel of Christ, and truly live with him in our hearts and through our actions to others, we will all be made perfect someday in heaven.  The eternal promise is the reward, and THAT is how I cope.

**I must add that I do not condone those that seek help through medications.  

I am happy that such an aid is available to those in need!**

So do I feel like these boys have made us special parents?  Absolutely!!!  I know in the past 10 years they have showed me how to be more compassionate, more understanding, more loving, more tolerant and less selfish and judgmental.  I am excited to think that there is always room for improvement and growth and I pray to continue to become a better person for them and because of them!  To God be the glory for making us who we are!

Identical Twins with Down syndrome AND Autism Statistics?

Thanks to Facebook I have met a few other families who are doubly blessed like our family is with identical twins both having Down syndrome.

Not only have I met families with identical twins but also families with fraternal twins both having Down syndrome.  To this day there are no updated published statistics of how rare these blessing are.  There is a lot of speculation and a few really good mathematical guesses but no actual numbers.  Of course in a group of parents there are some really great guesses and I loved what one parent said.  She said "We were told the odds were 1 in 80 million 20 years ago, rare yes, the number doesn't matter.  We are the lucky ones!!!"

This is the best documentation I've found thus far from a website from the UK > Click here to view page.  To summarize page read the following:


"We estimate that identical twins with Down syndrome occur at the rate of 1 or 2 in a million pregnancies and non-identical twins at the rate of 14/15 in a million."

With that statistic above now think of the 90% termination rate of those found prenatally to have Down Syndrome detected.  AND then to add Autism & ADHD to the mix makes the Hanzely twins so rare and so special.  Please Lord let me hold my boys tighter and love them harder each day knowing that you have given us a gift that so many will never know or understand.  Some may look at us and feel sorry, some may look at us and be thankful for their healthy kids but I know that my days are filled with an amazing loan from God himself. These two try my nerves more than I wish to confess, these two know all their mom's buttons, these two are so hard to figure out most days but to look back at how far they have come makes me literally have to type through tears streaming down my face.  They can't talk, they can't dress themselves or feed themselves with utensils without help, they still wear diapers and make messes I will not share information about on this post, but we are truly and absolutely blessed.  Without them we would take the world and the ease of living life for granted.  I pray that whoever is reading this would take time to get to know someone with special needs, to get to know their parents and to know that different is not a bad thing.

Day three Post Op and feeling good

After months of waiting and praying for the twins surgery that was scheduled for October 31st, we have come out knowing that things we not as bad as anticipated, Praise the Lord!

Rewinding a few months, Caleb went in for a hernia repair and dental work back in June at Children's Hospital in Pittsburgh.  Once he was put to sleep and they were trying to pass breathing tube they noticed they were having a difficult time passing the size tube they generally used.  Both twins have subglottic stenosis, which is a narrow airway.  As they downsized the tubes a few times they called off the surgery and stated Caleb had an unstable airway that would have to be assessed before he could have these elective surgeries.

We arrived at the hospital on Friday with some anxiety as to the outcome.  The team came in and said they were going to do Isaac first.


Isaac:
He was having his airway checked out.  A Laryngoscopy, Bronchoscopy and a endoscopy to monitor GERD... Dental work with extractions and ear exam/repair.

Here was Isaac after his "happy juice" about to go back to surgery.

Isaac was due back in surgery for an hour and a half.  So we kept Caleb busy by going to a playroom and hanging out for a bit.  He loves to sit in these little red cars.  He is running out of room and soon won't even be able to get inside.  I may just have to contact the manufacturer and see if they make an adult version for my Mister Caleb.

Isaac procedure took a little longer than expected due to a bigger issue with his ear drums than they were expecting.  Dr. Mehta repaired a hole in the right ear but was unable to fix the left ear drum which is completely ruptured and needs a 2-3 hour surgery alone.  He said they could not add that to the OR schedule for the day so we will have to come back to have this done.  His airway looked pretty good, just under the normal size for children with Down Syndrome and his reflux looks managed.  As far as dental work he ended up having three teeth extracted from the bottom and the roots dug out from a tooth that broke off recently on the top.  Lots of sealants and a couple of caps on some back teeth.  He's a new boy!!

Caleb:

Caleb's team was very thorough when it came to dealing with airway issues.  They were looking at several different scenarios if they couldn't pass a breathing tube as was the case back in June.  I was very pleased with their detailed explanation of different steps they would take.

Caleb was having more procedures done under this anesthesia due to him being considered more high risk.  He was having his airway checked out.  A Laryngoscopy, Bronchoscopy and a endoscopy to monitor GERD... Dental work with extractions and ear exam/repair (all same as Isaac)... then he was also having a cyst on his neck removed and a hiatal hernia repaired.  It was not quite clear what kind of cyst was on Caleb's neck but that would be determined when they got in there to remove it.  

Calebs procedure was to take around three hours to complete.

Caleb chilling with his "happy juice "

After three hours had passed, the ENT Dr. Mehta came out to update his part of the procedure. He said that his airway was better than expected and it was indeed small but not in a terrible way.  He said it was measured and now documented in their system as to what size breathing tube to use with future operations.  He said that the cyst was not what they were expecting it to be (a thyroglossal duct cyst) and it was a much easier removal.  So from the ENT standpoint it was a good outcome for sure. An hour later the general surgeon came out and said the hernia was repaired and he was good to go, then dental came out next and said he had four teeth extracted and sealants applied.

Four and half hours later Isaac was still being a real trooper playing on his iPad, watching tv and letting time pass by.

We were pleasantly surprised when Caleb woke up in recovery and drank 8 oz of apple juice right away and then signed for more.  Usually Caleb takes hours to come out of anesthesia, not today, he wanted to drink and get outta there.  Children's had a bed space reserved for Caleb for an overnight stay and they even put in a second IV site for his stay while he was sedated.  When he woke up all of the doctors said that the surgery procedures all went better than expected and he was free for discharge if we were comfortable taking him home.  WOW!! Thank you Thank you, and we were off.

Day #3 Isaac is up and ready to tackle school again.  Doctors gave him today off school but he will return tomorrow with no gym class for a month until our follow up.  Caleb is not quite himself and slower to get around.  He is in good spirits and playful, but I can tell he is hurting a little yet. He will stay home with me all week and he too is off gym class and extra physical activity for a month.  I am so happy things went as they did.  I also wanted to thank each and everyone who kept the boys in their prayers and asked about them with genuine concern, we all felt the love.

This photo is them this morning sharing some iPad time together,

they are so adorable when they just chill together.

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!!!

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:

Guess;

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.

Shape;

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?

Personality;

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, well...um, 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!

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 count....surgery.

Down Syndrome Awareness Day #6 - Caleb

For Down Syndrome Awareness Month I have decided to share photos all month long of my beautiful boys.. Today I am sharing some photos I found of Caleb about a year ago.  He loves to dress up and show off himself in the mirror.  He can do this for an hour, being silly and dancing and laughing at himself.  He soon has everyone laughing right along with him :)

These photos were taken in sisters room.  Just keeping it real not cropping out messy stuff...LOL  If your like me your not looking at room your looking a cutie pies face.