Cheers to 10 Years!

Ten years ago today Frank and I got married!  It seems like yesterday and a lifetime ago at the same time.  I remember the day vividly.  I was so happy.  I refused to let anything upset me on such a special day.  What I remember from that day is fun, family and knowing it was forever.

The past ten years are filled with so many memories.  From the first day we met (that was 15 years ago) to the day her proposed at Yankee Stadium to the day we walked down the aisle.  We have had lots of firsts together.  First home, first dog, first, well, first three babies.  We have been truly blessed to find each other and have the opportunity to create such memories.

Are there days when I might want to kill him?  You bet.  Are there days where I might totally drive him nuts?  Yup.  But what I know is at the end of each day there is no one else I want to be next to.  We have been through a lot in 10 years.  Marriage itself isn't easy.  It takes work and effort.  When you add on some special circumstances, well it can sometimes be a recipe for disaster.  For us, that has not been the case.  We have met our challenges head on and never ever questioned the reason behind them.   We make a great team because we approach things very differently.  We balance each other out when we have to face a challenge.

I still think he is funny.  I still thinks he suffers from OCD and won't admit it.  I still think he's handsome.  I still enjoy spending time with him.  I still look forward to him coming home at the end of the day.

I have learned so much about him in the last ten years.  Yes, I knew him for five years before we got married and I thought I knew him.  I have learned he is even a better father than I thought he would be.  I have learned he is an even better best friend than he was when I married him.  I have learned he would do anything for me and our kids long before he would do anything for himself.  I learned he is the most unselfish person I have ever met.  I have learned he is the hardest working man.  I have learned he is a rock in a crisis.  I have learned one little red headed girl can turn him into a huge mushball and apparently there are different rules for boys than a Princess....

So, it hasn't been all easy and all fun and games but the good days outnumber the not so days and I know even on the not so good days there is no one else I would rather be spending the day with.

A change of heart

Since Cormac was diagnosed we have never treated him differently than any other child.  We have never put limitations on what he can do.  He has never put limits on himself.  He sees himself as just another kid.  The only time I ever saw him act differently or not be himself was when we played basketball for the first time.  That was two years ago. He was five.

 He eagerly signed up but at the first practice I could tell it wasn't going well.  When he started it was just drills.  They didn't play games.  It was lots of instruction.  The only time he seemed to be enjoying himself was during the time they played dribble tag.  The acoustics in a gymnasium are terrible.  I could tell he was having a hard time hearing.  He seemed to be following others rather than listening.  He was out of his element because he is used to hearing and not just following everyone.

As the weeks went by that first year he didn't want to participate until they were doing the tag part.  He didn't have to listen to play dribble tag.  He knew what to do.  We started using the FM the next week but I think he just got off to a bad start and said he didn't want to play.  I didn't want to force the issue but I didn't want him to give up either.  Each week we went it was sort of a negotiation.  He would never come out and say he didn't want to play because he couldn't hear well.   It made me sad.

Last year he said he didn't want to play.  I told him he didn't have to play. When we got there I could tell he wanted to play deep down.  I think he was nervous he would miss something and not know what was going on.  He went on the court a few times.  Again, it was just skills last year. 

Now we are on year three.  It's different this year.  They have practices and games.  No more just drills.  I thought for sure he would not want to play.  He said he didn't. I didn't sign him up this year.  I felt terrible he was not playing because he couldn't hear well.   This was a first time I had to handle him being stopped by his hearing. We have never been limited by Cormac's hearing loss.  I guess in my head I just hoped things would always be the same.  In the back of my mind I knew there was a possibility something would come up at some point in his life but I guess I was sort of in denial.

I didn't want to force him to play and make him feel worse but I didn't want him to not play if her really liked it. We talked about it before the first practice.  We talked about how it was OK to not play if it was hard for him to hear.  We talked about using the FM like we did last year.  I couldn't go to the first practice.  He went with Frank.   He went to the first practice when they would let everyone play and pick teams.  He came running in the house and said "I love basketball.  It's so much fun.  Thanks for letting me try it again!!"  I was like "what???"  (in my head of course)  I couldn't believe what I was hearing.  If you knew what it was like before you would be amazed.  He didn't even have them FM with him.

He has now been assigned to a team.  He went to his first official team practice last night.  HE LOVED IT!  I am not sure what has really changed.  The acoustics did not get any better in the gymnasium.  I am thinking it is Cormac that has changed.  He is getting older and more mature.  He has better coping skills and his self advocacy skills are better than you would expect from a 7 year old.  I think this all is part of the reason he loved it.  He isn't afraid to speak up and ask for things to be repeated.  He is surrounded by kids and parents who know and love him.  They all might not quite understand why it's difficult for him but they are supportive of him. 

I am also pretty sure ClearVoice is playing a role in his ability to hear better in the gymnasium.  ClearVoice is a sound processing strategy on his processors.  Here is a description from Advanced Bionics (the manufacturer of his cochlear implants):

Clinically Proven to Help You Hear Speech Significantly Better in Noise

Advanced Bionics proudly offers ClearVoice™*, the industry’s first and only sound processing innovation that enhances speech understanding. ClearVoice is also the industry's only sound processing technology that has been clinically proven to deliver superior hearing performance in noise.

The clear choice for confident communication, ClearVoice provides you with the unique opportunity to converse more effortlessly in noisy settings, understand your favorite song lyrics, enjoy the world around you, and hear your best at any moment and any place your day takes you.

Whatever the reason or combination of reasons has gave him the confidence to play basketball I will take it!  Cormac continues to have no limitations.  He continues to live his life as a typical 7 year old.  He continues to amaze us with his ability to be just like other kids in so many ways but in so many ways he is not a typical 7 year old.  Cormac is an old soul and wise beyond his years.  I continue to be impressed with what is possible for not only Cormac but for all the people who have cochlear implants.  I say it all the time but IT NEVER GETS OLD!!!

Family Thanks

With Thanksgiving tomorrow I asked the boys what they were thankful for this year.  They each did it when the others were not in the room.  Here is what they said:

Cormac:  He just rattled them off and I typed them as he said them.
1.  I am thankful for my dog.
2.  I am thankful for my sister.
3.  I am thankful for my Mom and Dad.
4.  I am thankful for my brothers.
5.  I am thankful for my house.
6.  I am thankful for the beach.
7.  I am thankful for food on the table.
8.  I am thankful for playing dress up with my sister.
9.  I am thankful for Meema, Grandma, Pop Pop and Grandpa.
10.  I am thankful for my cochlear implants.

Colin:
1.  I am thankful for my family.
2.  I am thankful for Duke, Raven and Duchess.
3.  I am thankful for my brothers.
4.  I am thankful for my Mom and Dad.
5.  I am thankful for my Meema, Pop Pop, Grandma and Aunt Mary.
6.  I am thankful for my guitars.

Ciaran:
1.  I am thankful for my family.
2.  I am thankful for Raven, my brothers and sister.
3.  I am thankful for my food.
4.  I am thankful for my toys.
5.  I am thankful we have enough money.
6.  I am thankful we have cousins.

I did my 30 days of thanks on Facebook so I won't bore you with what I am thankful for again.  Take some time to really think about what you are thankful for in your life.  Others might have more than our family in material items but we are rich in love and appreciation for each other.  To me, those are more important.  My hope is to raise children who are thankful for even the smallest things in their lives.

Hope you and your families have a wonderful Thanksgiving!

Really listening...

I read this article the other day. It was titled 10 Things I Learned When I Stopped Yelling at My Kids.  I admit I do yell at my kids sometimes.  There are times I feel it's the only way to get there attention over all the noise!  I really try not to yell but none of us are perfect, right?  When I do get upset I go to bed the same way she describes.  I feel like I failed for the day.  I feel like I need to do better.

Tonight at bedtime I had an experience and it reminded me of #6 on the list:

By yelling you might miss out on life-changing moments.

The boys were up in bed and Ciaran came downstairs.  Normally, I would have said "Go back to bed.  You know you are supposed to be asleep." Ciaran is known for his stall tactics at bedtime.  Tonight, I didn't tell him to go back to bed.  I simply asked him what he wanted.  And you know what he said?  "Mom, you know that book I am reading?  (He started a book yesterday and is super interested in it.  He even brought it out to dinner and read it in a restaurant tonight) Can you please find me more books like that?  If I had books like that I would read them all the time"  I nearly cried. I leaned down and kissed him and told him I was so proud of him.  I told him when he went to sleep I would look up the author on the computer and find him more books!  He went right upstairs and went to bed.  I would have missed that moment if I had just responded with my normal "Go back to bed"

Honestly.  I have been trying forever to get that boy to enjoy reading. He always says he doesn't like to read.  Reading didn't come easy for Ciaran.  He had to work a lot harder than Cormac and Colin to learn to read.  He compared himself to his brothers and when he realized he wasn't reading like them  it was difficult for him to enjoy it.

When I go to bed tonight I will rest easy knowing I truly listened to something very important Ciaran had to tell me.  I am glad I didn't think it was his usual delay of game.  I already looked up the author and found seller on Ebay selling a collection of his books!  I can't wait until they arrive!

Here he is drinking chocolate milk and reading his book at the restaurant.

A reason?? A Purpose?

I cannot tell you how many times people have told me everything happens for a reason.  Sometimes we have to wait for the reason for a long time.  This statement seems to boggle my mind because when certain things happen you wonder what could possibly be the reason.  It's when you have to rely on God to show you what the reason could be.

Last week I went to the Garden State Walk for Hearing. I volunteered at the Advanced Bionics table.  On our car ride there I had a moment.  A moment when the normalcy of our lives brings me to tears.  After all isn't that what we all want for families?  The boys were in the truck having a conversation.  I had the radio on.  Adele came on the radio and it was "Rolling in the Deep".  It is one of Cormac's favorite songs.  When I hear it I automatically smile because I know how he loves it.  I glanced into the backseat and there he was tapping his foot to the beat.  Singing all the words all while making a teardrop bracelet on the rainbow loom.  I cried.  In that exact moment I felt pure joy.  I thought "Good gosh, look at him."  He didn't appear to be putting an extra effort into doing anything.  He was just a kid doing what he loves to do!  I am not sure why it made me cry but certain things just hit you.

 I had an amazing day at the walk. I had a day where perhaps I learned a reason. When we arrived at  Garden State Walk for Hearing I felt like I was at home.  I was in my element.  I was surrounded by people who understood me. People who got me.  They have walked in my shoes or are following in our footsteps.  They are following in Cormac's footsteps.   And those are some pretty freakin amazing footsteps.  I know I am his Mother but I have to admit he is an unbelievable child.  I had a parent tell me when she met Cormac for the first time and her daughter was just a baby it was the moment she knew her daughter would be OK and would get a cochlear implant.  I had another Mom so happy to see Cormac and let him meet her family so they knew what their son's future would be.

All of this from Cormac.  One little seven year old.  One little boy who came into this world in total silence.  For one entire year his world was quiet.  His world was quiet but his personality was never quiet.  He was always the happiest baby and always smiling.  To think, he didn't hear ANYTHING...not even my voice to soothe him if he was upset or me telling him I love him devastated me.  He on the other hand doesn't remember not hearing.  When I tell him he didn't hear he finds it hard to believe.  He has no memory of not hearing.  (Well, if he did remember it would be a miracle considering he was one when he was implants LOL).

One little boy who opened our world to a world we knew nothing about.  Today, I was surrounded by people who we have met along our journey.  People I know and love.  People I NEVER would have known if not for Cormac.  Today we saw friends whose children started this journey with us and are just as inspirational as Cormac.  Children who had now words when they first met and now never stop talking!  We saw teachers who work tirelessly to give our children their voices.  People who gave Frank and I the resources and support we needed to travel this path.  We saw little ones who are in the beginning of their journey and there it is.  The reason.  Cormac is the reason.  Cormac was born to give Hope to others.  I honestly believe Cormac was put on this earth to inspire others.  To lead through example.  To just be Cormac.  And just being Cormac is more than I could ever ask for.  Another friend asked me if he knows how influential he is when parents meet him.  I said he doesn't.  He is just being him.  His enthusiasm and love of life speaks for itself. 

I attended his parent teacher conference this week as well.  As expected he is doing great in school but here is a direct quote from his teacher "He loves to answer questions.  He is the first to raise his hand.  He is the first to volunteer to READ OUT LOUD to the class.  He asks questions when he doesn't understand and he asks for things to be repeated if he doesn't hear it"  I am pretty sure this is the dream of any deaf child to get this report from the teacher.  He is reading, he is speaking outloud and advocating for himself when he doesn't hear! 

So, all those years ago when I didn't understand it.  I think I see it clearly now.  Cormac's reason or purpose was to inspire and help others who are travelling the same road.  He was put on this earth to give hope to other parents who are terrified when they find out their child is deaf.  When they have no clue what to do and question every single aspect of their child's future.  He is here to ease those fears and show everyone how just perfectly normal life will be for them.   I could not be happier for him and I am truly, truly blessed to be able to be his Mom and witness his purpose.

Calleigh Update

What might go down as the longest 48 hours of my life started pretty normal.  I kept Calleigh home from school on Thursday.  She had a runny nose and was sneezing.  Pretty normal.  Thursday night before bed she seemed to be getting a cough so I decided I would keep her home the next day.  I had an appointment Friday morning to get a root canal.  After returning from my root canal I noticed Calleigh seemed to be working hard to breathe.  Her chest was retracting a lot and she appeared to look a little blue around her lips.  I called her pediatrician and was told to bring her over now.  Keep in mind at this point she was in the happiest mood.  Running around, playing, laughing.  Having a great time. 

I kind of have a sixth sense when it comes to Calleigh.  It's just a feeling I get.  It is NEVER wrong.  As I put her in her car seat for the ride to the pediatrician's office I lowered the rearview mirror so I could see her on the ride.  In my head I kept thinking.  "If she stops breathing is it faster to pull over and call 911 or is it faster to get to the doctor"  (we live pretty close to their doctor).  Most people wouldn't have these thoughts but Calleigh has scared us before.  I just kept praying we would make it to the doctor.  She was still laughing and talking in the car but I had this feeling.  We got to the pediatrician's office and they took her right away.  They put the pulse oximeter on her and the nurse and doctor kind of looked at each other.  They said we need to do that again.  Calleigh is NOT a cooperative patient.  At all.  She freaks out like you have never seen a child freak out.  They tested her two more times and the doctor says to me "If this reading is accurate she needs to go to the ER."  I think, OK, I will get my stuff together.  She says no, "I need to call 911 to get her transported.  Her levels were about 82".  I know normal is 100.  95 is OK.  82??  I was wondering how she was still awake and alert.  I saw one of the measurements and it was 79. 

A few minutes later we were in an ambulance being transported to the hospital with Calleigh receiving Oxygen.  It was not a "oh, she needs to go to the hospital ride,  It was she is in bad shape ride.  We had two ambulances going full speed. Light and sirens.  I had already called Frank from the doctor's office and he was on his way.  My Mom was on her way down because I knew I would need someone to pick up the boys at school.

Her Oxygen level was still dangerously low.  Frank arrived after apparently after the fastest ride ever down the turnpike and the parkway.  They ran some bloodwork, did chest x-ray and examined her.  Her chest x-ray showed the very beginnings of pneumonia.  This was not enough cause such labored breathing.  They said she also had some viral infection along with a double ear infection.  Keep in mind this kid had NO FEVER on Thursday before bed.  She was in the happiest mood and more than normal except for a runny nose and a slight cough.

After nearly six hours in the ER we were moved to a room.  I must say the room was private and brand new so it wasn't too bad.  They had her hooked to an IV and Oxygen.  During this time my tooth took a turn for the worst and I was in pain like I have never felt before.  Apparently, I had an infection.  I would not tell anyone I was in pain because I didn't want to leave Calleigh.  By night time I was in bad shape but managed to make it through the night without totally losing it.  Calleigh was still not doing great on her oxygen levels all night.  I stayed up all night with her keeping watch on her monitor

By Saturday morning Frank came back to the hospital and the boys were allowed to visit too!  This made her so happy.  I left the hospital for an hour and went to the dentist to try and get some relief.  I wound up getting antibiotics and a pain killer.  Sounded like a plan.  While I was gone the doctor came and rounded.  He said she had to stay another day because she was still requiring some oxygen that day.  We took her off Oxygen after he left to see how she could maintain her numbers.  At this point she had four doses of really strong anitbiotics.  As her infection cleared she would be able to breathe easier.

I got the first relief I had in nearly 24 hours after taking the pain killer.  Advil and Aleeve were doing nothing.  I thought it was great.  Little did I know I would get horribly sick from taking them.  I took them every few hours on Saturday and by Sunday morning I was vomiting.  (at the hospital, on the car ride home, and pretty much the rest of the day)  I know now I could NEVER be addicted to pain pills.  It was probably because I wasn't eating much while I was taking them but I was stuck in the bed with Calleigh because she didn't want me to leave her.

On Sunday, they said she could come home.  I was puking at this point.  We got home Sunday and I was good for nothing.  I passed out in bed from not sleeping for two nights and got up to be sick a few times.  Calleigh on the other hand was doing great and playing at home.  This morning I am better.  Calleigh is coming along.  It might have been the longest 48+ hours ever.

She is such a trooper.  It terrifies me how quickly things go bad with her.  I don't know why it happens to her.  She gained a reputation quickly at the hospital for being "much stronger than she looks".  It took 4 nurses and me to hold her to draw her blood.  The big burly paramedic on the ambulance was no match for her.  The police officer who first responded to the doctor's office who was at least 6 feet 3 decided to take his report from the hallway and not even go near her!  I told them she may be small but she is MIGHTY!

Thank you to everyone for all the well wishes and prayers.  We appreciate every single one of them.  To my sweet friends who dropped off food for us you have no idea how much I appreciate it.  It was such a relief to not have to worry about dinner last night or for tonight and possibly tomorrow too!  It gives me time to focus on Calleigh and the boys.  My boys are such good kids.  They put up a brave front but I know them too well.  I could hear their voices on the phone and knew they were worried.  Ciaran was so afraid.  I could just tell.  His little voice quivering on the phone while I talked to him.  It breaks my heart.  They were so excited to see her on Saturday and brought her all her favorite toys from home. 

So we are home and she is on the mend.  Let's hope it stays that way.  We could all use a little rest!

Adventure...

That is how I sold the first day of school to Colin.  He was by FAR the one who didn't want to go back.  He was sad and mad and kept saying "Summer went to fast".  Last night I kept thinking there had to be a way to get him excited about school.  Somehow, someway, right??

So, I had him sit on my lap and cuddle with me.  I told him how 2nd grade was going to be an adventure.  He replied "No, school is not an adventure".  I said "Sure it is.  An adventure is an unusual or exciting experience.  It's something you have never done before.  You have NEVER been to 2nd grade.  You have never been in Mrs. Albietz's class.  You have never been in class with the same exact kids you have in your class. You didn't get to make your Holy Communion before.  You will learn to write cursive."  I was pulling out all the stops.  He didn't seem quite convinced last night but I got a few smiles out of him.

He happily went into school this morning.  He took the pictures I asked of him.  He was excited to use his new backpack and wear his new Hush Puppies.  He wasn't so thrilled to have to wear underwear.  (That's what you get when you wear a bathing suit every day for a few months :) )
I was pleased.  Maybe I made some progress and convinced him. 

Calleigh and I went to pick them up from school.  They all came running out so excited to see me and Calleigh.  The FIRST words out of Coln's mouth "Mom, it really was an adventure!  I loved the first say of school and Mrs. Albeitz is soooo nice."

SUCCESS!!!!  It worked.  I was so happy he had a great day.

I have so much to update about the end of Summer and the start of school but it seems I don't have a second to myself. 

Transitions

When we are talking about Calleigh nothing has ever been simple.  Not one thing has ever been easy or has gone smoothly.  It's just how it is.  So when I started thinking about taking her out of her crib I would get overwhelmed with just the thought.  She loves her crib.  She stays in her crib.  She can be put in there at any  moment and she never asks to come out.  Why mess with this? Would she ever sleep again?  Would she be running out of the room every second.  I honestly just didn't have the energy to take on this process. Simple as that.

Then we found this awesome bedroom set at a price I couldn't pass up.  I had it delivered and made them leave it in the middle of my dining/living room so I would be FORCED to refinish it in a timely manner.  I was able to complete the set in a few days and am very proud of my work.  But when I finished it I realized I HAD to put her in the bed....there was no turning back.  I was not looking forward to it as all.  Of course the night I chose Frank didn't come home from work and stayed at my Mom's house but I did it anyway.

I had been talking up her "big girl bed" for a few days.  Every time I mentioned it I said "big girls have to stay in their bed.  They are not allowed to get out unless Mommy or Daddy come and get you".    She would say "ok" but I wasn't really convinced.

The first night I put her in the bed she got out twice within about five minutes.  I went in and told her if she got out again she would have to give up her big girl bed and go back in her crib (or cribby as she calls it).  She never got out again.  Not that night.  Not the next morning!  She waited for me to come and get her.  She has now done this four days in a row.  I thought it was a fluke but it seems it is not a fluke.  She seriously LOVES her bed.  She waits each morning for me to get her.  Could we actually done one transition smoothly???  Is it possible?  I think we might have.  I think she is finally old enough to understand it.  Keep in mind even though Calleigh is four she does not act like a four year old emotionally or socially.  She catches up a little more each day but she is still delayed. 

I am in love with her new room.  I am in love the expression on her face when I go in her room in the morning as see her. She is sitting up playing with her toys.  It seems like the first thing we have tried with her that has gone as planned!  I love being able to lay with her at night and read her a book.  I love how I can turn off her light and walk out and she is happy and just goes to sleep. 

Transitioning the boys wasn't as simple.  Three boys in one room at the same time I didn't really expect them to just lay down and go to sleep.  Really, does anyone think they wouldn't be partying when we left?  We always laid down with them for a while and usually one or two fell asleep and we could leave them for the night.  Frank normally does the night time routine with the boys.  They look forward to it and continue to do it each night.  HE sometimes goes in their room and we don't see him again for hours because he falls asleep before them. 

Her room isn't finished because I am changing her bedding.  She will have a mermaid room.  Her new bedding came but I still have to make her curtains.  I will post pictures when it is all complete.

Here are a few pictures of her in her new bed.

This is her first time she laid in it.  She was very happy...

First night and all is well.

Second Night went just fine too!

I could honestly just watch her all night.  I know it's crazy but she just seems so peaceful.  I can't help but sneak in every night to take a few pictures.  I think she is getting better sleep as well.  She started to look so big in her crib now she looks so tiny again in a big bed.

It's the end of an era for The Lawrence Family.  No more cribs or baby things.  It's sad and happy at the same time.  Now, if we could just get her out of diapers.....baby steps.  one thing at a time....

The Sweet Spot

This Article was popping up all over the place yesterday.  I read it and thought it was such a great article and so true for so many families.  The sweet spot of parenting.  It's a time parents are thrilled to be part of but at the same time makes you a bit sad because you know it's also a time that goes by too quickly.  It reminds us to take the time to really enjoy all the moments. 

It also made me think of The Sweet Spot along our journey to hearing for Cormac.  This sweet spot however, comes with not a bit of sadness.  It comes with a sense of accomplishment.  It comes with a sense of awe.  It brings tears to your eyes.  These tears are not tears of sadness.  Those tears are long in the past.  It's the moment when you realized.  Everything is Ok.  I can remember another parent telling me about 2 to 3 years after implantation life will all of a sudden not be solely focused on helping your child to learn to listen and speak.  Your life will suddenly just be your life.  At the time it seemed unimaginable. 

I remember the EXACT moment we reached the sweet spot along our journey.  It's a day I will never forget.  The memory is so clear it's like it was yesterday.  I have to give a little history on how we arrived at this day.  We decided early on we wanted Cormac to attend mainstream preschool along with his brothers.  It was a goal I would meet.  Failure was not an option.  We did everything within our power to get him prepared for this moment.  The way it works Cormac received early intervention until the age of three.  At three he is released and would go to mainstream preschool.  There was only one issue.  He turned three in April and his preschool didn't start until September.  I didn't want him to not receive any services for such a long span so I decided to put him in Summit Speech School in their morning program from April until June.  He would have a few weeks off in the Summer. 

On his first day of driving him (I was about 6 months pregnant ) he was sitting in the third row of our Suburban.  I was driving and had so many thoughts going through my head.  Was I making the right decision?  Was this the best plan for him?  Is he ready for mainstream preschool in the Fall or should I have made him enroll in Summit for the year?  The thought of him being apart from his brothers literally broke my heart.  As all these things were going through my mind from way in the back of the truck I hear him say "Mom, do you see that contrail coming out of that airplane flying in the sky?" (Keep in mind it was the day after his third birthday and he had NEVER HEARD a sound until he was 13 months old)  I look out the window and see it.  I start to cry while I am driving (and as I type this I can't help but cry at the memory)  I tell him in a very shaky voice.  "Yes, I see it"  And he knows I am crying and he says "Mommy, don't worry I am going to be just fine".  I said back "I know, Cormac.  You will be OK"

That was our sweet spot moment along the road to hearing.  It's one of the greatest memories I have of Cormac.  He was so small and so young.  Somehow in his mind he just knew I was worried.  He knew just what to say and when to say it.  It's not to say I don't think or worry about it any longer but for the most part it's just a part of who he is and it by no means defines him. 

At this point I think I am about 80....

80 years old that is!  I am pretty sure Calleigh took another ten years off my life last night.  If we add up the number of frightening episodes involving Calleigh I am pretty sure I shouldn't even be alive at this point.  We have learned a few good things in the barely four year Calleigh has been with us:

1.Frank and I are apparently very good in an emergency.
2.  EMT's and police respond quickly to 911 calls and are amazing.
3. Our boys can sleep through anything.  Including two or three cop cars along with an ambulance.  I think at one point there were 6 cops and 4 EMT's in the house.  They didn't even come out of their room and we had to tell them about it this morning.

Here's how it all went down....

Calleigh went to school yesterday with what we thought were allergies.  Sneezing and a slight cough but not a cough in her lungs.  More of what seems like a tickle.  The school nurse called and said the teacher sent her to get checked because she was coughing more.  She did not have a fever and they didn't think I needed to come and get her but wanted to give me a heads up.  I went and got her anyway.  She really seemed OK all day.  No fever.  We went up to the beach for a while.  She played in the sand and had lunch.  She seemed totally fine.

By dinner time she still had no fever and at like her normal (and when I say normal I mean she eats like a grown man) self.  After dinner she seemed to feel a little warm to me.  I took her temperature and it was 100.3.  No big deal.  Slight fever.  We gave her Tylenol and it was time for bed.  For some strange reason I told Frank to let her sleep in our bed.  (She never sleeps with us. Always in her crib.) Not sure why I felt the need to keep her with us.  Frank actually fell asleep with her and I took this adorable picture of the two of them around 8:30. 

Around 9:30 Frank woke up and had a snack and when he went back into the room all I heard was "Calleigh are you ok?  Calleigh wake up!"  He came out of the room holding her.  Her body was limp but twitching and her face was very blue.  I took her from him while Grandma called 911.  She was unresponsive and still slightly twitching.  I gave her a few rescue breaths and she coughed.  She still was out of it but she was breathing.

The Police and EMT's were here in what seemed like seconds to me.  They were very fast.  We had her on the couch and they were trying to wake her.  At this point she was no longer twitching or seizing but totally out of it.  She opened her eyes a few times and seemed to know who Frank and I were which was reassuring.  They did give her some Oxygen.  By the time we were ready to move her she was still out of it but we were able to carry her to the ambulance and hold her on the ride.  She slept or was out of it for most of the ride. She did lift her head up a few times looking around.  Each time the siren went off she got a little frightened and would loop up.  She had not said anything yet at this point.

When we arrived at the hospital she was coming around a bit.  They took her temperature and it was 103.9.  Keep in mind she had already had Tylenol less than two hours before this.  So her temperature spiked pretty quickly which can cause Febrile seizures.  She was given motrin and as it started to work she was coming back to us.  She started singing "Somewhere Over the Rainbow".  She would answer questions if asked.  She would fall asleep in a second.  But it was late at night and her brain had just been firing on overdrive so it is to be expected.

About an hour later she was charming the nurses and doctors who all agreed they wanted to take her home with them.  Our doctor who was awesome and actually sang the them song to "Team Umizoomi" to her so she could examine her.  She also said she had twin boys at home and if Calleigh needed a prom date she would be more than happy to volunteer one of her boys.  She sang for them and was smiling and laughing.  I am pretty sure she was delirious from lack of sleep and the seizure.  She was a happy camper. 

We finally got home around 2am.  She slept in bed with us.  I should say she slept while Frank and I sorta stared at her all night.  Its hard to sleep knowing it might happen again.  Her fever has remained low all night with Motrin.  We followed up with the pediatrician first thing this morning.  She has an upper respiratory infection which more than likely caused the fever that caused the seizure.  She is on antibiotics and has to remain on Motrin for the next 24 hours regardless if she has a fever. 

He did give us a script to have an EEG.  His reasoning is more from her medical history than this occurrence.  About two years ago while at our old pediatricians office she had what they called an "A typical" febrile seizure.  She didn't seize but went totally limp.  Since we were in the doctor's office at the time he just came in and saw her.  He knew she was breathing and going to be OK.  I on the other hand was not too OK.  I am pretty sure I asked them for Oxygen once they said Calleigh didn't need it.  He made me watch it and see how long it took for her to come around so if it happened again I wouldn't panic.  I am pretty sure that is why I was so calm last night.  I was freaked out but in my head kept saying it was a febrile seizure and she would be ok.  With Calleigh's history you just never know.  I have flash backs to watching her code in her hospital room when she was 8  months old after she had 1/3 of her large intestine removed.  A team of doctors standing over her and feeling totally helpless.  It is the worst feeling and I try not to go there.

Thank you to everyone who helped us last night.  The Belmar Police and Belmar EMT's were here when we needed them.  They did an awesome job.  A special thanks to George who when we weren't in the right mind to even think about it came in the ambulance and asked us if he could drive our car for us so when we got released we would have a vehicle.  It was so kind of him.  

As I type this Princess Smoorcherella is napping comfortably in her crib.  I can't help but check on her repeatedly but I guess that is understandable.  She is totally back to her old self and I couldn't be happier.

This makes me angry....

When we chose to give Cormac the gift of hearing we were so blessed to be surrounded by people who were supportive and believed in our choice.  It was new to everyone in our family and friends.  We did our research. We talked to professionals and recipients.  We talked to representatives from the implant companies.  We did not make this decision lightly.  Choosing to send your child into surgery is never easy. 

Cochlear implants are not supported by all people.  I am a firm believer in doing what is best for you or your child.  Each family is different.  Each family has different goals.  We all want what is best for our children.  What makes me so angry is people who write things like this:

This is a very complex issue. Cochlear Implants (CIs) are not the simple, quick-fix, cure-all that people tend to take them for. There is no shortage of risk involved. I always stress that anyone considering getting one or more CIs should talk to MANY people who have had the procedure done. (Not only those who are promoting and/or selling the service.)

CIs do not always work. They are... not for everyone. You are a good candidate if you were born with severe or total hearing loss. (The latter is rare. Most Deaf people do have some residual hearing.) You are a good candidate if you can hear some and you are familiar with the phenomenon of language. A doctour does an intake evaluation to determine if the odds are in your favour.

There are a great many aspects to consider associated with this procedure. This list is by no means exhaustive.

* it is only for profoundly Deaf and profoundly hard-of-hearing
* the procedure is not always successful
* there is a high incidence of infection and rejection
* it can increase the risk of adult Meningitis by 30 times
* there is a risk of nerve damage
* you can never be exposed to heart paddles, pacemaker, etc
(you run the risk of being shocked by these and other things)
* many CI patients have been known to die on the operating table and post-op

* the first thing that they do is irreversibly destroy all residual hearing
* sound will bypass the ears; you won't hear passively
(you must learn how to interpret sounds)
* sound comes through a "microphone"
(you will never hear as a Hearing person does)
* you will have a magnetic rock in your head
(it is at least as annoying as a hearing aid [hard to sleep])
* the outer receiver is even more obvious than hearing aids
(you cannot conceal it if you have short hair)
* Deafs are generally opposed to this procedure-- unless you are late-deaf
(if you want to restore hearing that you once had, no problem)
* if it does work, you are likely to be ostracized by Deafs
(you have expressed that being Deaf is bad, and want to distance from it)
* if it fails, you are now permanently deaf-- and you can be in social limbo
(you will not be Deaf or hearing)
* Deafs are especially opposed to having Deaf children "fixed"
(it creates a communication chasm between family members)

So you don't know if CIs will be beneficial or not until you have them. That is the problem. I have only one adult Deaf friend who had the procedure done, and she is delighted with the results. But I would never recommend going by what one person says. I have heard of many people who were not happy with the results.

http://www.fda.gov/MedicalDevices/Produc…
http://www.signgenius.com/cochlear-impla…
Source(s):
-- --
I am Deaf, a native ASL Signer of more than thirty years, a nurse, a Sociologist, an ASL teacher, and an authour of various ASL media. I have lived and Signed all over the United States, so I am well-versed in regional Signing. It is my mission to dispel myths and urban legends regarding Deafs and ASL. See my other posts for more information

 

 

As a Mother to a child with implants I find this information to be offensive.  I would NEVER condemn someone for choosing not to implant their child even if I think it was the best decision I ever made.  The above information is wrong which is the most infuriating.  It is true everyone has a different journey once they receive an implant.  It is not a quick fix.  It takes work and dedication.  That said, it is a miracle I witness every day.  Cormac had NO hearing at all.  There was no residual hearing to worry about.  Many recipients can reteain their residual hearing while receiving an implant.  New implant arrays have made this possible. 

 

Cormac is stll deaf.  He will always be deaf when he is not wearing his implants.  He is perfectly fine with who he is and proud of who he is.  He would never shun a deaf person because he has implants and I think deaf people rejecting him because he can hear is just terrible.  I think Cormac might be the most well adjusted, smart, happy kid I have ever known.  As his Mother I feel I have given him the BEST opportunity in life he could possibly have.  As his Mom I believe that is my job and responsibility. 

 

What scares me is other parents are reading all this wrong information and not having access to the correct information so they can make an informed decision for what is best for their family.  I urge people to do their research and go out and meet people.  Go to oral schools and watch these children TALKING and LISTENING just like typical kids their age.  Contact me and I will gladly talk to you about the whole journey. 

 

 

 

 

Virtue Award

On Friday, Cormac, was given a Virtue Award for Trustworthiness. When talking about being trustworthy the priest said these are the "kids you can depend on and the go to person".  They are solid and reliable.  I think that describes Cormac very well.

 He was very excited.  We are so proud of him.  He couldn't wait to go to the breakfast but he was really waiting to receive the pin at church in front of his entire school.  We sat in the back of the church and he sat with us.  He literally ran up the aisle.  His face was priceless.  Here he is returning with the pin. :)

 

Colin was upset he didn't receive the award because he felt he was just as trustworthy as Cormac.  It made me sad he was so disappointed.  I explained to him there will be more opportunites in the future for him to win an award.  Ciaran was happy for Cormac and was not in the least bit upset over Cormac winning.  There personalities are so different. 

It was a wonderful way to start the weekend.  This just reinforces what I already know; anything is possible for our children with hearing loss.  Nothing will hold him back from achieving all he wants in life.  Cormac truly strives to be the best he can be in all aspects of his life.  On a side note, I realized on Friday Cormac is like a mini mayor at school.  I swear, he know EVERYONE.  All the older kids (lots of the girls) were higg fiving him and hugging him.  He knows all their names.  He is so social and not afraid to talk to any kids or join in a conversation.  It warms my heart to see how loved he is at school.  Frank and I were getting a huge chuckle out of all the girls who know him.  As Colin says "all the ladies love Cormac".  :)

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. :)