The 1%

There has been so much talk about the 1% and the 99% lately.  Well, I am here to talk about the 3%.  Yes, you read that correctly.  I want to talk about the 3%.  You may be wondering "what is the 3% or I have never heard of the the 3%?  Let me show you what the 3% looks like:

Yep, my lil "shorty McCorty" has made it on the growth chart for THE FIRST TIME.....she is in the 3rd percentile.  Sure, if you put her in a room of all kids her age 97% of them will be taller than her but there just might be someone shorter than her! 

We have been meeting with an endocrinologist since Calleigh was about six months old.  Her first year she hardly gained wait and didn't grow much.  In December we went for testing to see if she is producing the growth hormone.  She passed the test but barely.  They measured four different levels and she failed three and passed one test by one point.  This would disqualify her from being considered for growth hormones being covered by insurance. 

We were told to come back in six months to evaluate her status again.  The only change we made in the past six months is to remove gluten from her diet.  We have been sticking to it and she has only had gluten a few times.  I don't know if it has anything to do with it but if growing is a side effect of being gluten free we will take it! 

Calleigh continues to make huge progress.  Her speech is coming along tremendously.  She is talking more and more.  She still gets frustrated when she can't come up with the words but is doing much  better finding her words.  We also started her in private speech therapy with a therapist who specializes in children with low tone facial muscles.  She has been pleased with her progress.  She still struggles with her balance and overall weakness of her muscles.  No one can seem to tell me why or how we can help her get better.  She receives PT and OT at school twice a week and we also have her in private OT with a therapists who specializes in spacial relation and sensory issues.   I have scheduled her for an evaluation with a therapist who specializes in Cuevas Medek Exercises.  A friend of mine takes her daughter to him and he has worked miracles!  No joke. 

Anyway, just wanted to update that my lil girlie is growing and we are so excited!

Guest blogger

Cormac wanted to write something for the blog.  He decided to write about what he likes.  Here is what he typed.  (I copied and pasted it from a word document)

Things I like

by Cormac Lawrence

 

I like to play.

I like to have cochlear implants because I can’t hear without them.

I like to play games.

I Like to kiss my brothers and my sister.

I like Duke and Raven.

I like my sister.

I like to color.

I like school.

I like to play with my friend Christina at school.

I like the movie The Little Mermaid.

I like to go to the beach.

I like to play soccer.

I like to read.

I like to draw.

I like to make pictures of dolphins.

I like Shepard’s Pie.

I like to learn new things.

I like to learn about God.

I like to play baseball, soccer and lacrosse.

 

I like to dance.

 

I like to laugh.

 

I like to be silly.

I like my fuzzy blanket.

 

 

Three Minutes that changed our lives FOREVER...

11:41pm, 11:42pm and 11:43pm on April 6, 2006 are the three minutes that forever changed our lives in a way I never knew was possible.  Ciaran was born at 11:41, Colin 11:42 and Cormac 11:43pm. 

In some ways it seems like yesterday.  In other ways it feels like a lifetime ago.  The days can be long but the years are short.  I didn't know it was even possible to love anyone as much as I loved them the second I saw them.  I remember being so upset because I couldn't hold them.  They were quickly taken away within minutes of their birth.  I didn't get to even see them until about 1:30 in the morning when they wheeled me on a stretcher into the NICU. 

Overwhelming is an understatement.  They were so tiny.  Ciaran and Colin had lots of black hair all over (including their bodies.)  They were born before it normally comes off in utero.  Cormac was so well, white.  Everything about him was white almost translucent..  He had not a hair on his head and the fairest skin I had ever seen on a baby (until Calleigh was born LOL).  When Calleigh was born every nurse and doctor commented how they had never seen such a pale baby.  They kept thinking she needed a blood transfusion.  Once they saw the rest of the family they realized it was just her. :)

Their personalities have been the same since the day they were born.  Ciaran came out peeing from the womb.  Colin came out just kind of taking it all in and Cormac came out calm.  He looked "fat" compared to the other two because he was the shortest but weighed the most.  I have always said they looked like chickens when they were born.

  Cormac came home after 21 days and Ciaran and Colin came home after 28 days.  I am asked all the time what it was like to have three newborns.  Honestly, I know it sounds crazy but I seriously loved that time.  I am not saying it was easy by any means but I just loved loved loved it.  I knew somewhere in the fog of feeding three babies every 2 hours I would never get this time back.  Never get to see them so little again.  I just kinda knew I had to take it all in. 

To think seven years has is mind boggling.  I hope every day I take time to enjoy my kids.  I try not to let life get in the way if it is possible.  Sometimes it's hard to just stop and smell the roses.  I tell them every day I while I am so proud of the little men they are growing up to be I will always miss them as little boys and babies.  They promise me they will always be my babies and I know they mean it.  They on the other hand are so excited to grow up.  They look forward to getting bigger.

I know I can't stop time but I truly wish I could just freeze it for a while.  I hope I always get the hugs, cuddles and love they give me now.  I have always been told boys love their Mamas.

I want to write each boy a note he can read he is older to learn what he was like at 7.

My little Ciaran,
Where do I start with you?  You are such a boy.  You love anything to do with sports.  You are very good at sports.  You are funny.  You are a buster.  You like to break people's chops and know just how to do it.  You have made HUGE leaps this year in school.  Reading did not come easy to you.  You lacked confidence and when you think you aren't good at something can get easily discouraged.  You overcame this obstacle with lots of hard work and encouragement.  Your confidence is through the roof and you are reading just where you are supposed to be.  Nothing makes me smile more than when we are driving in the car and you start reading the signs around us. You love computers and cam do anything with a computer.   You LOVE your sister.  I mean, you really love her beyond words.  She was not always receptive to all your love.  With the changes in Calleigh this year she now feels the same about you.  The look on your face when she constantly hugs and kisses you is priceless.  You can be a real wiseguy but totally sweet at the same time.  Your freckles on your little face make me happy.  You are sort of like the energizer bunny. You still say you want to be a cowboy when you grow up.  I hope you always stay the happy, energetic, loving boy you are today.

My Colin, 
What words can I use to describe you?   When you smile your entire face lights up and your eyes twinkle.  You have really come into your own this past year.  You have developed your own sense of style.  You like to pick out your "cool" clothes.  Nothing makes you happier than having a big kid give you a compliment.  Your are kind and loving.  You LOVE to talk and talk some more.  You tell stories and ask questions all the time.  You are smart.  You excel in school.  Your feeling are easily hurt.  You still hate that you don't get to where hearing aids or cochlear implants.  When you get mad you get really mad.  Your shoulder slouch when you are mad cracks me up.  I try not to laugh when you do it.  You love the outdoors.  You love anything cammo. You love hiking and fishing.  Skateboarding is your favorite thing right now.  You are helpful.   You want to be a vet when you grow up.  You always stay up later at night than your brothers.  You spend that time thinking about life.  If I come up to your room you are ready to tell me so many stories while I lay with you.  Since you got your new beds you have slept every night with Ciaran.  Cormac tries to sleep with you guys but I think he wakes up to easily when you guys touch him.  He can't hear at night so he is way more sensitive to touch.  I hope you continue to look at life they way you do now with such wonder.

My Cormac,
What to say??  You are a thinker.  You are like a sponge.  You take everything in and are able to recall it after learning it one time.  You are silly.  You love to tell jokes.  Your brain is fascinating to me.  It is always at work.  Schoolwork comes easily to you and boy do you LOVE school.  You love anything about school.  You are very artistic.  You spend so much time drawing, coloring and creating.  You love to read.  You are reading long chapter books on your own.  Sometimes  100 pages in an afternoon.  You love life.  You are sweet and kind and loving.  Your hair makes me happy.  You love baseball.  Nothing holds you back.  I love knowing how comfortable you are with who you are.  You are confident.  You are sweet and loving and generous.  You want to be a dentist.  You have wanted to be dentist since you were two.  You are not defined by being deaf.  It's the last thing anyone thinks of you when they think of you.  It is amazing what you have accomplished and you do it all with the biggest smile on your face.  I hope you continue to smile through life.

To the three of you,

To watch the three of you is simply a blessing.  The relationship between you is one I will never be able to fully understand because I am not a multiple.  You all love each other so much.  That is not to say you don't fight or get on each others nerves but it always come back to the love.  You know each other better than I think I know you.  You can communicate without saying a word.  You are all so different yet the same.  You are connected on a level that is beyond me. 

So, HAPPY HAPPY HAPPY 7th birthday!  I hope this year brings you all the happiness you deserve.  I hope you continue to face life every day with the same zest you do now.  I hope you continue to love each other they way you do now.  Thank you for letting me be your Mom.  You are the reason I breathe in the morning.  To be able to look at life through your eyes is the greatest gift I have ever received.  I LOVE YOU!

Different Learner's Day

Cormac and I were asked to attend different learner's day at a nearby elementary school.  The school sets up different classrooms where the children come in to see although some children might learn differently they are all still kids.  In one class the children will be able to see what it's like to walk on crutches or ride in wheel chair. 

We will be in the classroom for Deaf/Hard of hearing.  In total about 90 kids will come through the class.  It will be broken down in to small groups.  Cormac is very excited and I am hoping he doesn't get stage fright!  Since the kids will all be 8-9 years old I thnink he will feel comfortable.  He is going to hand out activity books about cochlear implants and we are going to bring in pictures of him doing everyday things like swimming, playing baseball and soocer.

We plan on bringing Cormac's Neptune's along so the kids can see what he wears in the water.  I think this is such a great idea for the school.  I have to say one of my biggest fears as a new parent of a child with implants or now Ciaran with hearing aids one of the first things you think of is if they would be teased by other kids.  As a mentor for AB I talk to lots of new parents and they all wonder the same thing.  We have been so blessed because Cormac or Ciaran have never been teased or bothered by anyone about their implants or hearing aids. 

I thought when we moved and switched schools the new kids might not be used to seeing them but honestly no one has ever said a word.  They ask questions when they first see them.  Ciaran and Cormac tell them why they wear them and that is the end of it.  We have had kids who WANT cochlear implants because they think they are cool. 

In school today the goal is to keep as many children mainstreamed as possible.  I think by exposing children to others who are not quite the same is a great experience.  It gives parents the opportunity to teach their children that who they are is what makes them unique.  No two people are the same.  Not even twins and triplets.  It's an opportunity to show what makes each one of them special.  We should celebrate our differences.

If anyone has any ideas on what we can do to keep the kids interested I am open for suggestions!

Wish us luck

The love of a brother and a sister

Anyone who knows us since Calleigh was born knows Ciaran has been slightly obsessed with Calleigh since the day she came home.  He was totally fascinated by her from the first moment he saw her through the glass into the NICU.  I remember holding her up and showing her to the boys and while they were all excited Ciaran just had a different reaction.  It was immediate love and devotion.

When Calleigh finally made it home he was always all over her.  I must have said a million times "Ciaran, get out of the baby's face".  He just couldn't help himself.  He has to be all in her space all the time.  When she was about three months old we went to the mall.  Calleigh still had her cleft lip.  Naturally, people looked at her.  Most people are surprised to see a baby with some type of deformity.  It never bothered me but people did look twice at her.  At the very young age of 3 years and six months Ciaran realized people were looking at her differently.  As we strolled through the mall he stopped me and said "Mom, I weally don't like all these people wooking at my sister".  I was so shocked he could tell people were looking at her differently.  It was in that moment I realized Calleigh would be protected for the rest of her life.  Regardless of her age no one will ever be able to treat her badly.  There would be consequences doled out by not one but probably three over protective brothers.

As Calleigh gets bigger he continues to smother her with his LOVE.  With all of her trips to the hospital he would get so upset.  He would cry and ask me if she was going to die.  He would pray for her at night and tell God how much he loves her. 

I'd say the past 1 1/2 years he would drive her crazy.  She would push him away, swat at him and tell him no.  All he wanted was for her to reciprocate all the love.  He would say "Mom, why doesn't she like me?  I just love her".  Even though she pushed him away he still persisted.  He never gave up hugging her, kissing her, carrying her but most of all just loving her. 

Now, you know we took her off gluten for sensory issues.  This was part of the problem with him always being near her.  She didn't want him touching her all the time.  When she wanted attention it was fine but when she didn't....LOOK OUT.  A few months ago he started filling her sippy cup with milk for her.  (This is the fastest way to get Calleigh to love you) 

For the past three weeks things have changed.  She suddenly loves him just as much as he loves her.  It's been a transformation.  She hugs him.  She kisses him.  She asks him to get her her milk.  She will now only take a bath if he goes with her.  When I change her diaper she says "Ciaran, lay with me".  To see the pure joy on his face is priceless.  He keeps saying "Mom, she really loves me".  She holds his hand.  She lays on top of him.  As I type this she is playing hide and seek with her brothers.  She just found Ciaran and tackled him.

She is also smart enough to use it to her advantage.  She wants for nothing.  All she has to do is ask Ciaran and he will do it.  She knows this.  She uses it.  But Ciaran is just so happy she is giving him attention he doesn't care what her motives are.

She has made so many changes lately and Ciaran is her biggest supporter.  He cheers and claps for her.  He carries her around.  He stays behind her on the stairs to make sure she is safe.  When she says something he says "Wow, Mom she said that so clear. SHe is getting so much better".  She loves to dance with him.  Their brother/sister relationship might be the cutest thing I have ever seen. 

The past few weeks have brought so many changes to our lives.  Drastic changes to Calleigh in so many ways.  While I am so grateful for all of these positive changes.  Watching Calleigh and Ciaran together has made me the happiest I could possibly be.  I honestly feel she has loved him the same all along but wasn't capable of all the affection or attention.  She couldn't handle it.  She now embraces it and it warms my heart and soul.

God Bless any boy that EVER tries to date her.  Seriously, he will have to get through three brothers first but his biggest obstacle will for sure be Ciaran.  I hope they always have such a magical relationship.

Ten on Tuesday

Haven't done one of these in a while....


1.  Today it is 55 degrees in January and tomorrow it will be over 60 degrees. I love it especially since last week was the coldest week ever!  We will be heading to the park.

2.  One of my new favorite sayings comes from Cormac.  When he really likes something he says "MOM upside down"  He cracks me up.

3.  Calleigh continues to be a happy little girl. She has yet to cry going into school again since she is gluten free.  I am at a loss for words to describe the transformation she had made. We go into the city on 2/14 to meet with the specialist on Celiac's Disease.

4.  I finally bought the boys beds.  They have only had box springs and mattresses since they came out of cribs.  It took me forever to find what I want and make it work in their room.  However, last night I went upstairs and they were all in one bed again.  I am starting to think I should have saved myself some money and just bought them one bed!

5.  Gluten Free shopping is very expensive.....

6.  Catholic Schools Week is going on.  The kids are enjoying all the fun activities planned at their school for the week. 

7.  Calleigh might know more sight words than the average 1st grader!  She is so funny how she can just rattle off the words.  I guess she takes after Cormac with her reading skills.

8.  Advanced Bionics is coming out with a new behind the ear processor.  It's set to be released this Summer.  It's AMAZING!!  It has some awesome features.  Now, will be get approved for it???  Cross your fingers for us.

9.  Basketball has started for the boys.  Cormac doesn't want to play.  He says he just doesn't like it.  Strange because he asked to play soccer, lacrosse and to do gymnasitcs.  He likes to only go in at the end when they play a game.  I told him he has to decide in or out.  He can't choose to play only parts of the game.

10.  I am totally ready for Winter to be over and for Spring to get here.  I am determined to complete as many triathlons as I can this year!  Now, I just have to get training again.

Coco Key

I took the boys to Coco Key for an overnight stay Sunday into Monday.  We were off from school so we needed something fun to do.  We were able to use the water park on Sunday sleep over and use the park again the next day.  The boys thought it was a fun adventure.  They think hotels are awesome for some reason.  Frank was working so he didn't come and I didn't take Calleigh.  I wanted the boys to be able to just do what they wanted without us having to worry about Calleigh.  The boys can swim and I don't have to be with them every second.  I would have had to stay with Calleigh every minute and been distracted from the boys.

This was our first time in a water park.  I never took them before mostly because Cormac was not able to hear in the water.  With the waterproof Neptunes things are different.  We loved them this Summer on the beach.  We loved them in the pool.  We now love them at the water park.  While I was there I kept thinking how difficult it would have been if he couldn't hear me.  I also kept thinking how much different the experience would be for him not being able to hear his brothers, friends and the life guards.  Not to mention all the other kids around him who were talking to him. I never brought them to a water park before because of this reason. 

On our second day at the park I looked down and saw a tiny little peanut of a girl and to my surprise I saw a bright pink Neptune!!  I got so excited.  It's so rare see someone else with an implant let alone a Neptune. She was a little one.  Only two years old. I immediately went over and talked to the Mom.  Turns out her daughter goes to NYU for mappings like Cormac and had surgery at the same place.  We chatted for a while.  I told her Cormac was in the lazy river and he would be very exicted to see another child with a Neptune.

A few minutes later I walk over to the lazy river and I showed Cormac the little girl.  He ran right into the pool and went up to the girl and said Hi.  He talked to the parents and showed them his Neptunes.  I honestly don't know what he said because I was not in the pool with him.  I figure he is old enough and perfectly capable to have a conversation in the water because of the Neptunes.  He was so excited and the parents looked thrilled while he was talking to them.  I know when Cormac was little it gave me such hope and comfort to hear other children with implants speak and see them just being kids.  It let me see how bright a future was possible for Cormac.  I hope he was able to do that for these parents who are new on this journey.

All in all the experience was amazing.  Cormac went down a HUGE slide that was totally dark inside.  I can't believe he wasn't terrified.  I went down after him and it scared me to death.  He loved it and to see him coming shooting out of it all smiles and hear us all cheering for him was awesome.

The night before we left weh I told Cormac where we were going he made this:

 

Here are a few pictures from our fun days in the water.

 

 

      

A New Calleigh?

Where do I start?  Many of you know already Calleigh has never been an easy kid.  She is loving and sweet and adorable but mostly on her terms.  She has some sensory issues and was also prone to tantrums.  I know, what three year old girl doesn't have them, right??  But to me  they seemed different.  A bit more frequent and a bit over the top.  You also never knew what was going set her off.  Bright lights or too loud music at a store in the mall, an uninvited touch by someone when she wasn't expected.  It was hard to predict.  I know some people might say she is a "brat".  I knew this wasn't the case.  I felt something else was going on.  It's not for lack of trying to figure it out.  I still say to this day some times I still feel like we are treating a lot of symptoms but not finding the main cause of her various unrelated medical issues.  A link has never been found between her medical conditions by an doctor or geneticist.

So why am I telling you all this?  A friend (THANK YOU JENNIFER ROOT) of mine shared an article on Facebook called The Gluten Made Her Do It.  When I read this article I could totally sympathize with this Mom.  While Calleigh is no where as severe as the child in this article I could relate.  It sounded like Calleigh.  I decided it was worth a shot to try eliminating Gluten from her diet for 30 days and see what happens.  I couldn't hurt, right?  She had her last Gluten on Saturday January 5th. 

On Monday January 7th Calleigh woke up and went to school.  She didn't freak out or melt down at the door.  She didn't almost vomit from crying at the door.  She was agreeable and went to school happy pretty much for the first time since school has started in September.  That day her teacher said she had an OK day.  Fast forward and she went into school Tuesday, Wednesday and Thursday HAPPY.  Yep, no crying.  No hysteria.  No looking back.  Each day her teacher said she had a "great" day.  Friday she was a little upset going into school but nothing compared to normal.  I realized later she had eaten gluten Thursday evening without me realizing it.  We are still new to this whole gluten  thing and they sneak it in EVERYWHERE. 

It has been like a magical transformation.  She is like a new kid.  She seems so much more pleasant.  She has been over the top affectionate.  Kissing and hugging like crazy.  She gave her teacher's aide a kiss on the cheek during class.  She doesn't have a melt down when you try and change her diaper.  She enjoys her bath.  It seems she is suddenly the child we always knew was in there but only got small glimples of in the past 3 1/2 years.    This is a kid who I didn't want to take shopping because for fear she would melt down and just scream the entire time.  It was actually starting to impact how much I did with her.  It sounds horrible but to take her with me when I was alone with the other kids could just be too much.  I hated I felt that way but it was the truth.  It's not something I talked about too much but it was my reality. 

I have been almost testing her the last few days.  I picked her up from school on Friday and before I got the boys I took her to Loft (shopping, her worst nightmare).  She went right into the store.  She said Hello to the lady working there.  She walked around smiling and laughing.  She was talking to the manequins.  I don't think she ever noticed them before because she would normally be too upset.  She never cried. She never got upset.  She played Peek a Boo with me in the racks of clothes.  She accidently hugged a stranger's legs and starting laughing when she realized it wasn't me.   It's usually not worth taking her because I can't get anything accomplished.  This was a whole new experience.  I even took her to another store after and she was the same way.

I also read this article about Gluten Ataxia.  The list of symptoms are frightening close to Calleigh's unexplained symptoms.  We have been trying to figure out her balance, growth, clumsiness for so long.  Could this be it?  Could we be on to something?  I don't know for sure but we plan on continuing Gluten free.  The balance issues won't resolve over night.  It's not clear if it goes away but they said you might see changes in six months to a year.  I need to figure out what doctor to take her to get the information needed.  I am praying if this is the cause of her issues we are not too late and we will see changes in the next six months to a year. 

She hasn't really noticed the change in her diet.  We are not all going gluten free but small changes in everything are simple.  We used gluten free bread crumbs for meatballs and no one noticed a difference not even Frank. (I don't eat it so I couldn't tell you.)  Pasta is the biggest issue but I found spaghetti made of corn and she loved it and it seems almost the same as regular spaghetti.  I think the hardest part is convenience items and snacks.  No more grabbing things on the go.  I need to know what is in everything. 

I don't understand why none of her doctors have thought of gluten.  This is a child who is seen by six specialists every 4 months.  She sees her pediatrician every six months just to keep track.  Not one of them ever suggested it to me.  Her pediatrician is awesome, trust me.  He comes highly recommended and has seen all my kids since they were born.   I somehow feel like I have failed her in some way.  I feel like I should have tried it sooner.  I cannot tell you how many hours I have spend researching possible syndromes she might have or not.  Gluten NEVER came up in all these years.  I am so thankful my friend, Jennifer, posted this article on her page.  Can I say for sure it is the Gluten??  That's a big NO but just the changes in her sensory issues make it worth all the hassle. 

Stay tuned....we just might be on to something. :)

The New Normal

I have heard this term so much in the last few months in regards to life after Sandy for so many people.  It sort of was getting on my nerves because when I looked around and saw so many people who lost so much and lives were turned upside down it seemed like too much.  Thousands of people are still displaced.  Many don't even know when or if they will be allowed back to their homes.  I just kept thinking "the new normal?" .  There is nothing normal about any of this.  No one should have to experience the aftermath of such a storm.

As a volunteer mentor for Advanced Bionics (Cormac's implant company) I speak to lots of parents of children who are just finding out their child can't hear.  They are in shock.  They are terrified for the future.  They don't know why it's happening to them.  I share my experiences with these families hoping I can help them through this most difficult time.  I tell them it's an amazing journey.  It's a journey one would never choose for their child but once you are on it you would never change it.  This journey is what makes your child who he or she is.  You will meet people you would have never had a chance to meet.  You will experience joy most other parents could never understand.  The first year is overwhelming and it seems like so much is going on. 

BUT do you know what I always tell these families???  I always tell them when I talk about our family?  It might not be normal to others but it just becomes your normal.  Your new normal.... At this point I don't even think of it as our new normal.  It is just our family. Our new normal is just our NORMAL.  If that makes any sense. We are just another family.

My hope for all those whose lives were forever changed by Sandy is that their new normal  becomes just their NORMAL. 

A few of my favorie things

Just to keep them on record...

• I cannot even put into words how much I love listening to Cormac read.  His ability to read in general is amazing but what makes me the happiest is the inflection in his voice in all the right places; his excitement when he reads a sentence with an exclamation point and how his voice rises with questions.  To think when he was born we weren't sure we would ever hear him speak is just mind boggling.  We are in such a great place with him.

• Calleigh's emerging language.  She has a long way to go but has also come a long way.  Getting her to actually use her words when she is upset is a whole other issue.  But when she says "Where's brothers?" and answers herself "Oh brothers  at school"  or when I say to her "where is Daddy?"  She used to say "Daddy work" and now she says "Daddy's working".  Baby steps but I will take them.

• Christmastime...I love everything about it.  I love to see it through my children's eyes.  My heart melts when Colin tells me "Mom, Christmas isn't all about getting.  It's about giving and Jesus' birthday".  I hope he remembers this always.

• Hot chocolate with candy cane stirrers.  This is a big favorite of the boys right now.  I prefer mine with a little peppermint schnapps but we try and keep it kid friendly.

• Warm temperatures in December.  We have been able to play outside and at the park more than usual.  Today, not so much.  It's freezing but supposed to be back up to 60 on Saturday.

• I love how Ciaran loves Math.  He is great at it and it gives him confidence which he tends to lack sometimes.  He can't wait to do his math homework each night.

• Sweet Colin.  Sweet, sweet Colin.  His smile changes his entire face.  His heart is worn on his sleeve.  He is either all in or all out.  There is no in between.  He calls my Mom and step father almost every day all on his own.  I always know he is calling because he asks first but I never ask him or tell him to do it.  He talks to them about his day.  I just love hearing his side of the coversation.

I wonder years from now if the kids will like reading this and be happy I kept a journal of their childhood or will they not even be interested?  Either way I still plan on printing this for them.  I hope it's something they will treasure.

Wordless Wednesday

What I have learned since Sandy

Hurricane Sandy or Super storm Sandy whatever you want to call her was a devastating hit to The Jersey Shore.  I love the shore.  I have spent every Summer of my life on the beach and now I am a permanent resident.  My love for all things Jersey Shore is endless.  Most of my best memories involve the shore.

I have learned plenty in the past month.  Here is some of what I have learned:

• You can survive without electricity better than you think.  You also can't believe in 2012 electricity can actually be out for so long.
• It's the lack of heat that gets to you.  Being cold is just not fun. 
• Generators are a must have for all humans.  I mean it.  All homes should have one.
• Verizon Fios works even in a Super Storm.  As long as you have a generator you can hook up a TV.  Sure, Frank works for Verizon, but I have to give them some serious props.
• My kids are pretty darn good in a crisis.  They were so good during all of the chaos and being out of our house.  Honestly, they never complained once.  It made things way easier.
• The boys are now card sharks.  Seriously.  They had never played cards before the storm except for the occasional Go Fish.  We are now very good at many games.
• The Advanced Bionics car charger is awesome.  Just plain awesome.
• Having your entire family sleeping in one room is not good for sleeping but great for cuddling and telling funny stories.
• My faith in the goodness of people has been restored by the outpouring of support in every way possible.
• Our community is one tough little town.  People have suffered great losses but I have seen nothing but positive attitudes from everybody.
• My decision to be part of St. Rose has proven to be priceless.  The St Rose family is just plain amazing.  They came together to get things done for those in need.  From finding them places to live, to clothing , to food.  You name it and it was accomplished.  It will continue as long as it is necessary and I am proud to say I am part of that family.
• I have been living the life of a single mother for nearly a month.  Frank's work schedule is crazy and will continue to be for the unforeseeable future.  He has been staying at my Mom's house since she lives much closer to his work.  He is on forced 12-14 hours a day seven days a week.  The overtime is awesome but you can;t put a price tag on time with your family.  It takes its tole on everyone involved.  To hear your son say to his Meema on the phone "It's just not right to Skype your Father on his birthday.  You are supposed to see him" can reduce you to tears. 
• Seeing piles of people's belongings along the street is very sad.  Trying to explain all of this to small children is difficult.  They say kids are resilient.  That is my hope for all those families who have lost so much.
• Not having access to the beach or Ocean Avenue made me realize how much time we actually spend up there.  We ride our bikes there.  We play football there.  The beach is our backyard.  I find it nearly impossible to believe we will not be allowed up there for almost 9 months. 
• Mandatory evacuation with four kids and two dogs is not simple.  You realize quickly what is most important.  The first thing I packed (after humans and dogs) was all the Advanced Bionics equipment  and our FM System.  It is a lot of stuff when you try and pack it :) I put it in a bag along with my laptop.  I would have fought someone to the death to protect that bag!
• Our life is not always simple or easy.  We have had our share of struggles.  I keep to the attitude of "it could always be worse" and it will be OK.  I think this thought process has gotten my through some really tough moments in the past six years.  Most of the people who I know have lost so much share this same outlook.  It is amazing to see and it makes me smile.

I pray we never see anything like Sandy ever again.  I know our town will be back better than ever.  I hope someday all those impacted by Sandy are able to once again to see the beauty of The Jersey Shore.

Hiatus...

Superstorm Sandy has made it nearly impossible to update my blog.  The kids were off from school for almost three full weeks.  We were not in our house for a while.  I have lots to post about the whole experience and will once things get a little more normal.  This coming week we only have 2 1/2 days of school for the holiday. 

Flashback Friday...Halloween

                             The first Halloween 2006 The Three Pigs

 

                                          2007 The Three Bears

                                          2008 Three Blind Mice

 

 

                            2009 Super Heros and Calleigh is Batgirl

                                      2010 My favorite ever...

 

 

                                         2011 Smurfs and Azreil

 

Any guesses on this years costumes???

Ten On Tuesday

1.  I got an offer for the job I interviewed for at Monmouth Medical Center.  I will be trained to be a newborn hearing screener and learn how to perform ABR's on the newborns before they leave the hospital.  I credit newborn screening for finding Cormac's deafness and I am thankful every day we had the test.  Early intervention is the key to success so early identification is essential.  I am excited to put all my knowledge to work.  I will be working part time and hopefully be able to balance working and the kids.

2.  Calleigh will be making another trip to the hospital for a growth hormone stimulation test.  Since her pituitary came back normal on the MRI we need to see if she even produces the growth hormone.  She will go in the hospital on 10/29 at 7am.  They will hook her to an IV and test her blood every 1 /2 hour for three hours.  They will be able to tell if she is produces the growth hormone.  They take the blood from the IV so they don't need to stick her so many times.

3.  Today I listened to Cormac teach Calleigh how to sing three new songs.  It's a miracle every day.  My deaf son is teaching my speech delayed songs and they were both singing beautifully while playing the triangle.  Amazing.  Just plain amazing.

4.  Cormac is literally counting the days until the Halloween parade on Saturday.  He can't wait to wear his costumes.  The kids chose adorable costumes this year.  I had nothing to do with it and they chose a theme.  I guess after 6 Halloweens of being a theme they just kind of did it on their own!

5.  Calleigh is the star of the week at school this week.  It's very cute and we made a poster board to show all her favorite things.  I was happy to hear she told the class what all the things were on her poster and even told them her brothers names.  Very proud of her.

6.  We have parent teacher conferences on Thursday.  I am looking forward to speaking with their teacher about each of them.  We need to discuss some options for Cormac regarding his reading.  We need to challenge him more in this area.  His reading and comprehension are off the charts.  The words he can read, understand and then incorporate into his daily speech is unbelievable.

7.  The boys have two half days this week.  They have asked to go the Atlantic Farms for one of the afternoons.  I think it would be a great day to spend the afternoon.  I was just there with Calleigh but I am sure she will love a return visit.

8.  I am totally over school lunches and snacks.  I am not sure why I despise making them so much.  Tonight I made them right after dinner so it wasn't so bad.  My kid are so simple too.  They eat a lot of options but for some reason I just dread it.

9.  The Voice....cannot get enough of it.  Between Blake and Adam not to mention so many amazing performaces.  I just love love love it.

10.  I have started thinking about Christmas gifts.  Anyone want to share ideas for six year old boys and three year old girl??

The Moment

This is the moment I told Frank it was confirmed  Cormac was profoundly deaf.  He leaned down and kissed him. 

He was not with me at the doctor that day.  He had used up all his time off while the boys were in the NICU so he had to go to work.  My Mom stayed with Ciaran and Colin while I took Cormac by myself.  At the time, it seemed like the worst day of our lives.  It seemed unreal.  It seemed like some type of nightmare I would wake up from.  We had no idea what was ahead of us this day.

When I look at this picture now I no longer cry.  It makes me love Frank more than I already do.  It makes me realize we were destined to have Cormac in our family.  This day changed our lives forever and I would never change any of it. 

In case you are wondering why I posted this picture today. I was cleaning out some boxes in the basement and came across it in a photo album.  It might be my favorite picture of Frank....ever. 

Ten on Tuesday

1.  Calleigh's MRI results are back.  I have only talked to her ENT about the results.  (Her neuroloigst and endocrinologist haven't gotten back to me yet UGH!)  I haven't seen the report myself yet.  According to the ENT the results were normal for what he was looking for except for her semicircle ear canals.  Apparently, you have three on each side.  They are filled with fluid and are responsible for balance.  When you spin in a circle the fluid moves around causing you to be dizzy.  When the fluid stops moving you get your balance back.  One of her canals appears to have no fluid in it.  Considering her balance issues it could be a contributing factor or it could not be a contributing factor.  It could also be it just appears that way on the MRI.  I will be interested in the neurologists take on it.

2.  Calleigh continues to make some big improvements.  Several people have commented on how she seems more steady on her feet.  We have been taking he to a private OT facility and I think they are really great with her.  Combine that with her going to school every day and getting services there she seems to be moving along.

3.  The boys progress reports came home on Friday.  I was very proud of them.  They all did very well but what made me happiest was their reading.  Cormac got outstanding and I wasn't surprised but Colin also got outstanding.  (that is the highest score)  I knew he could read but he is not one to show us how well he is doing.  And then there is my Ciaran.  My boy who has seemed to struggle in this area from the beginning.  He lacked so much confidence it made me sad.  Well, since school has started he has flourished.  He got "good" in his reading!  It's the step below Outstanding and above Satisfactory.  I could not be more proud of him.  He had been really trying so hard.  He is so excited to read his new books to me when he comes home and to Frank as soon as he walks through the door. 

4.  The truck...what can I say about our truck.  It is out of commission at the moment.  We are waiting for a part to come in to the tune of $2500.  When my truck is not working we can't go anywhere with the kids.  Frank's car can't hold 4 car seats (really, how many can??)  The mechanic gave it back to me and said I can drive it locally until it's repaired.  Thank goodness because walking the kids back and forth to two different schools is not easy!  Hopefully, it will be fixed by the end of the week.

5.  I cannot get enough of the show Parenthood.  I want to be a Braverman. 

6.  We had such a warm day on Sunday we went up to the beach.  The kids wound up in the water.  They found crabs and shells.  It was a great way to spend the day.

7.  Last night for dinner I made chicken, broccoli and bowtie pasta. (we didn't have any cavtelli).  I used the multi color pasta that has the vegetables added.  To say it was a hit is an understatement.  My kids at multiple plates of it!  They are usually pretty good eaters but I wasn't sure when you combined it all what they would think.  Nothing makes me happier than to hear my kids say they love their dinner and ask for seconds especially knowing it was all good stuff.  Colin said I should make it every Monday.

8.  I interviewed for a job as a newborn hearing screener at our local hospital.  The interview went really well and within an hour of leaving the interview they called and said they were starting my background check.  This issue is so near and dear to my heart.  If not for newborn screening I don't know when we would have realized Cormac was deaf.  I am so grateful every day he had the screening.  What I like about the company is they do the test by the bedside with the mother watching.  They are focused on education and follow up.  I will not know for about 2 weeks if I have the job.  I feel very confident I will get an offer.  This journey our family took all those years ago when Cormac was diagnosed has really opened so many doors for us. 

9.  Calleigh is having her first school pictures taken today at school.  I am hoping she cooperates. She normally loves her picture to be taken.

10.  Here are some pictures from our beautiful Sunday at the beach.

Hearing Health Magazine

I was asked to write an article for Hearing Health Magazine and it is featured in their latest fall issue.  I am excited to see it in print.  I am honored I was asked to write for them as well.  If you look on page 11 of the magazine you will see the article.  If you click here you will be directed to the current issue.  Scroll to page 10 and look for three smiling faces. 

When I wrote the article I was not aware of how many words I was allowed.  The article I submitted was longer than it was supposed to be.  I was a little nervous about them editing the article but I am pleased with the end result. 

The Hearing Health Foundation is a wonderful organization. 

Anesthesia...again :(

Tomorrow Calleigh will have an MRI of her brain and pituitary.  She needs to have anesthesia because she would never stay still long enough for the test.  (It will probably take about 2 hours or so).  This will be the 6th time Calleigh will have anesthesia.  It scares the crap out of me and I really wish she didn't need it.  We are fortunate because three different doctors wanted an MRI and we coordinated so one MRI would cover all of them.

Calleigh's ENT wanted an MRI to take a look at her ear canals.  She is still testing with mild conductive hearing loss.  He wants to check out the structure of her ears.  The placement of tubes in her ears could even be the cause of the mild loss.  I am hoping it's the tubes.  Ciaran and Cormac have sensioneural hearing loss and not conductive loss. 

Calleigh's neurologist wanted a repeat MRI of her brain.  She had an MRI of her brain when she was six months old.  It showed she had benign hydrocephalus.  Everything else was normal.  Since we are still trying to get to the bottom of the balance issues her neurologist wants to take a look at her again.

Lastly, Calleigh's endocrinologist wanted to take a look at her pituitary.  She is still not a growth chart for height.  She is leaning towards starting growth hormone and we need to look at what is going on first.

I am hoping to get some answers about her balance and her very low tone but am not counting on it.  Calleigh also needs blood work for creatine kinase.  It could also give us some answers on her low tone.

Tomorrow will be a long day.  The smooch can't eat anything after 8:30am.  For those that know her well you know the girl likes to eat.  However, in the past she has never been too bad while being deprived a meal.  She can hang.  She is tough.  Our only request will be for milk and we will try our best to keep her busy.  She doens't go into the MRI unti 2:30 in the afternoon.  We only got this appointment so quickly because we were on a wait list.  Our actual appointment would have been December 12th!

Keep Calleigh in your thoughts and prayers if you could.

Ten on Tuesday

I seem to be neglecting my blog a little lately.  You would think now with all the kids in school I would have more time but it hasn't happened yet.  Calleigh isn't gone all day so it's not like a I have 8 hours a day to myself.  We have had lots of big changes this year.  Luckily, we have made the transition to first grade pretty smooth.  The boys are still learning first grade is not Kindergarten.  There are more rules to follow and serious learning going on.  It has been an adjustment for them.  A few bumps in the road but I am happy to report they have been three "shining stars"  for the last two weeks.  (They get a shining star sticker at the end of the day.)  They are so proud to run out and show me their star stickers.

Ok, let's get to the Ten on Tuesday:

1.  Calleigh continues to struggle with the school drop off.  Today I was late (on purpose) and it went a bit better.  I think I will be running late every day.  Just saying....

2.  Ciaran has struggled with his reading since we started trying to learn.  He gets so frustrated and lacks confidence.  Well, I am happy to report it has finally clicked.  He is doing amazing and is no longer struggling.  He is totally getting it and is right where he needs to be.  His confidence is up and he loves to come home and read me his books from school. 

3.  Colin is fully reading.  He has been reading since the Summer but he doesn't like to read to us to show us his abilities.  I feel like I can breathe a sigh of relief for getting past the reading hurdle. 

4.  Calleigh has made huge leaps in speaking.  She really talks all the time now.  She still gets frustrated sometimes because I think she forgets she can talk.  She is stringing 3, 4 and 5 words together.  "I wear pink tutu"  "I got Mommy's bed"  "Where Daddy go?"  "I want milk please"  I a very pleased.

5.  We are still waiting on the MRI for Calleigh.  With three doctors asking for the MRI (ENT, Neurologist and Endocrinologist) it was tough to get all the scrips to the right place.  We are waiting on insurance approval.  Columbia also has a wait for an MRI.  I am hoping it's not too long.  I asked to be put on the cancellation list so we can go at any time.  The only problem with that is Calleigh has to have anesthesia for the MRI and she can't eat before anesthesia.

6.  Calleigh started private Occupational Therapy at a great center.  She has gone a few times and they are working primarily on her balance issues.  She is doing obstacle courses, climbing, tumbling.  You name it and they are doing it.  I am so pleased I found a place who truly understands her.

7.  The boys teacher of the deaf is great (anyone we have had from Summit has been amazing).  She sees the boys (Cormac and Ciaran) weekly.  She rotates their schedule so she sees them at different times.  It is working great.  She was surprised at how well the boys did in gym with no FM.  She couldn't believe how well they listened and were able to follow directions.  She also said she got to see another side of Cormac.  Normally, "he is so serious and focused in class" but on the playground "he was quite silly and giggling and playing" 

8.  I continue to be thrilled with our boys school.  I know many people think Parochial school is not possible for their children with hearing loss.  I plan on writing an entire post about it this week.  I am not saying it's easy and all schools will be the same but we are having a great experience. 

9.  Fall has arrived.  While I love fall and all things fall (apple picking, pumpkin picking, hay rides, farm trips, Halloween) it seems like someone just turned a switch and shut off Summer.  And I LOVE LOVE LOVE Summer. 

10.  Colin has his first surf lesson.  The day he went it was cold and raining and the ocean was really rough.  I was thinking the instructor might tell me it was too rough for him to go in but he didn't.  Colin had never been on a surf board before.  He taught himself to surf on a boogey board which is totally different.  The first wave he took in he rode in on his knees.  The second wave he caught he stood all the way up and rode it all the way to shore!  Not to shabby for a six year old.  He has incredible balance and looks like a natural on the board.  Of course, I missed taking video of him surfing but I took some pictures.

Here is the ocean.