Ten on Tuesday

1.  It is Catholic Schools Week at school.  Lots of fun things to enjoy.  Tomorrow is red, white and denim day.  The kids don't have to wear their uniforms.  The boys will be wearing some red and white Valentine outfits.  It's also a half day!  I love half days.

2.  Tomorrow is also the Neptune seminar in NYC!  I am looking forward to seeing some familiar faces I love and meeting some new people.  It's a huge turnout from what I hear...80 people!!  Cormac is going along with me.  He is very excited and I know will be a great help to me with me duties.

3.  Yesterday, Ciaran and Cormac's teacher of the deaf took Colin with them for a little while.  To say he was excited in an understatement.  He thought it was so "cool".  She doesn't pull them out of class often but he always wants to go with them.  She called me after school to tell me she could not be more impressed with the three of them.  She said they are all very advanced for their age and are sweet loving boys....love.

4.  Today was GORGEOUS.  Over 60 degrees and sunny.  We hightailed it home from school to make sure we could spend optimal time at the beach playground.  The boys rode their skateboards or scooters.  We buildt some sand castles.  We made a few new friends.  A great, great afternoon.

5.  Calleigh is being evaluated for her transition out of early intervention.  When they met her in September when we moved she was at about 11 months across the board and her actual age was was close to 26 months.  In 5 short months I am thrilled to say she has made HUGE advances.  While she is still delayed in her gross motor skills she is now at about 18-24 months. She had just barely started walking when they met her and now she is running! Cognitively she is AHEAD of her actual age.  WOO HOO!  She is still speech delayed but I have not gotten the official report. 

6.  I am in a little denial my babies are approaching SIX years old in April.  I love the little people they are but am sad they are not the babies they were.  Each day I am amazed at how quickly they have grown.

7.  Fun.  I have been really trying to focus on having the most fun I can have with the kids.  The days fly by and I really want my boys to grow up with the memory of time we spent together as a family.  I have always told them "Family First".  They truly live this motto and it warms my heart.

8.  I know I have sung their praises before but I have to say not a day goes by I am not forever grateful for Summit Speech School.  They have changed our lives forever in ways I cannot even put into words.  One thing for parents is to find a great support system and Summit has been in integral part of our support.  Our new teacher of the deaf continues with this amazingness.

9.  Many things have fascinated me watching the boys and Calleigh grow up but watching Cormac fully reading just blows me away.  He can just read anything now.  I can honestly cry just listening to him.  I was told learning to read can be very difficult for deaf/hard of hearing children.  I am happy he does not struggle with his reading.  It has posed some problems...Frank and I can't spell in front of him any longer because he know what we are spelling!  And I have lots of activity books and I like to use them as a listening activity.  Color the biggest flower yellow, cirlce the smallest square...you get the idea.  Well, now that he can read the instructions it is no longer a listening activity!

10.  My reservations are made for the AG Bell Conference in Arizona in June!!!!  I am beyond excited.  Frank and I will be attending together.  We have not been away together I think since our honeymoon without any kids!!  We have our babysitting in place and are set to go and meet some people who I feel like I have known forever but will be meeting in person for the first time!!!  LOVE LOVE LOVE

You are who you are

I have talked to many parents about hearing loss and cochlear implants since we began our journey. I have talked to lots of people since Ciaran got his hearing aids. As a parent we only want what is best for our children. What we want most is for our children to just be children. To listen. To speak. To not be different from other kids. To fit in. One of the first concerns parents talk to me about is about how other people will treat their child. Will they be teased? Made fun of? Left out? I know I had ALL of these thoughts about Cormac's future. Would someone want to be his girlfriend? In the grand scheme of things and focusing on teaching our children to listen and speak these little questions are always in the back of my head.

 Kids can be mean. Kids can tease. Kids can say hurtful things when they don't even mean to and they also say them intentionally. As I parent I am trying to teach my children to be understanding of others differences. Not everyone is the same. It's what make us unique. Some people need glasses to see some need crutches to walk others need cochlear implants or hearing aids. I want my kids to be OK with who they are just like Frank and I are proud of the little people they are and the bigger people they are becoming. We think they are perfect just the way they are. Our hope is other parents are also teaching their children to embrace their differences. To think about how they would feel if they were the child who was different.

My experience so far has been nothing but positive. We have yet to experience any teasing. We get lots of questions and my kids are not afraid to answer any question about their hearing devices. Cormac has been explaining his implants for years at this point. He says it very matter of fact "I am deaf. When the magnets are on I can hear and when they are off I can't hear." Plain and simple and easy for people big and little to understand. I realize my kids are only five. It could get worse as they get older. My hope is they continue to be the awesome kids they already are and people will realize their hearing loss in no way defines who they are as a person. It will always be a part of who they are but not what they are.

All that said, yesterday we went to pick up Ciaran's new ear molds. He picked BRIGHT green and BRIGHT blue swirls. He LOVES them. Cormac got so excited while we were there he got himself measured for a set of ear molds. He picked blue and red. (He didn't want Colin to feel left out. Ciaran's favorite color is green, Cormac blue and Colin red. Cormac thought Colin needed to be represented in the mold colors) While we were there with the unbelievably AWESOME audiologist Colin told her he wanted "fake" hearing aids because he thought they were so cool. (See, it's all in perspective...it's all how they see themselves.) Well, Colin left the office wearing giraffe print dummy hearing aids with his own set of huggies to hold them on! Obviously, he can't have molds since he has no hearing issues.

Today, they were so excited to go to school. Ciaran had his hood up so he could "surprise" his friends. I walked them to the school line today because I figure I had to explain Colin's new hearing aids to the teacher. (she thought it was adorable and got a chuckle out of it). Ciaran walked up to his best friend, Ryan, and showed him the molds. Ryan's response "whoa, dude, those are TOTALLY cool". Colin was a little shy but couldn't wait for his friends to notice his hearing aids. Little Gabby was behind him in line and she said "Colin, are those FOR REAL?? Colin said " no, they are fake but I love them." She says "I like them too". Cormac was going on and on about how he ordered red and blue molds. It all seemed so....NORMAL.

A perfect afternoon

Last week, before the stomach bug wreaked havoc on the house, I had a wonderful afternoon. The boys got home from school, I put Calleigh in for her nap and I turned my attention to the boys. We were playing some games and doing some cuddling when Ciaran says" Mom, I think you look a little tired and you should go lay down in your bed" I am suspicious at this time and give him a questioning look. He then whispers something to his brothers and the other two get all excited and start telling me to go lay down. I figure, how bad could it be?? What could they be up to? Should I pry more into their little plot or should I just go with it? I decided I would just go with it. I go into my room and lie down. A few minutes later the three amigos come into my room carrying a Tupperware full of my favorite cereal and some diet coke (my all time favorite). It was so sweet and thoughtful. They said they just wanted to me to relax and have a nice snack. Then they told me they just wanted to cuddle for a while....I obliged for a while and eventually we all drifted off to sleep for a nap. We woke up when Frank got home from work and found us all snoozing in bed together.

I couldn't think of a more perfect afternoon (unless Calleigh was snuggled in the bed too!)

Nice to hear

I had to stop at school today even though they were all home sick to pick up Cormac's FM system. He is going to try and use it at basketball to see if it helps. The acoustics in the gymnasium are terrible. The coach said he would wear the FM if it would help. I'll let you know how it goes.

When I dropped into the classroom none of the kids were there because they were in art class. His teacher says to me " I have to tell you Mrs. Checkit (their new TOD) pulled me aside to say she is so impressed with Cormac. He is doing amazing and she is so happy to be working with both kids. She said she can't believe how ahead of the game his is! SHe is just getting to know Cormac and I am glad he is feeling comfortable around her.

Their classroom teacher commented on how his reading has taken off like crazy. She also said Ciaran is trying so hard. She can tell he does NOT like to get things wrong so he gets frustrated if he can't read a word but he trying super hard. I have noticed in the last week it seems to be clicking for him and he doing way better with his sight words.

So, other than the fact the kids are puking...a great way to start the weekend. LOL

Explosion

Calleigh has had a language explosion in the last week. I mean she just says everything all of a sudden. It's amazing to hear and makes me so happy. She used to never repeat words when you said them and now suddenly she repeats EVERYTHING. I am so thrilled I cannot tell you. In some weird way I am just as excited or more excited than I was when Cormac started talking. In my heart way down deep I knew Cormac was going to be fine. I knew he would talk. I knew from his first reaction to his implants it would take lots of hard work but he would succeed.

With Calleigh things have been so unpredictable. It seems every time we took a step forward we took two steps back. We never knew what to expect. We still do not know what to expect. A link was never established between the many health concerns she was born with. (Click on the link to Calleigh's story above) No syndrome could be found which is great but also because we don't know the cause you can't predict the future. The not knowing has been a struggle for me. I would much prefer to know what the problem is and come up with a solution.

Cognitively it has always been apparent she understands everything. She has never seemed any different in her comprehension than anyone her age. That said, she was so delayed in meeting her big milestones. (sitting, crawling, walking, running, talking). We waited for 18 months before she could crawl. It took until 26 months for her to walk. Now, I can officially say she is running. She might look like she had a few too many cocktails now and then but she is running.

Her personality might be the cutest I have ever witnessed. She is funny. She is silly. She gets mad quickly. She laughs from way down deep. She kisses me at least 500 times a day. I am NOT exaggerating. She walks up and kisses my legs, arms, hands..whatever..with a big kiss noise. She is loving. She has temper tantrums.. She loves to color. I cannot even say she loves music because it is more than that. Her reaction to music is too cute for words. She dances all day long. Her dimples are humongous. Just like Colin when she smiles her whole face changes. They both have something about them when they smile. I swear their eyes twinkle. There is no way on earth you could ever stay upset with her once she smiles.

She cannot say her own name without it being followed by a squeal of delight. I hope she always loves her name the way she loves it now. She loves her brothers but gets aggravated with Ciaran when he won't leave her alone. She bops him on the head when she has had enough. Yes, I know she shouldn't hit him but when she does it I crack up because I would bop him on the head if he was in y face as much as he is in her face.

While I can't predict the future I am feeling pretty confident Calleigh's future is going to be typical of other kids her age. We still have the heart issue lingering in the future but we will cross that bridge when we come to it. For now, I am going to rejoice in all the accomplishments she has made and continue to challenge her to keep moving forward.

Wordless Wednesday

Funny Boy

You see my smiling sweetheart? In this picture he was messing around saying to his brothers "I am not listening to you." Notice the fingers in his ears??? Well, I say, "hey, little dude, you can TOTALLY still hear them since you don't even hear out of your ears" To which he starts cracking up and says, "I know, I am messing with them" and he proceeds to pull his magnets off his head still cracking up.

A typical Mom

The last two weeks have been so different for me. Calleigh was on a break for two weeks from services. The boys were back in school. For the first time ever and I mean ever in 5 1/2 years I felt like just every other Mom. I was able to take Calleigh to Storytime at the library. We went to a play group. We did our shopping and we played and played and played. All of that without having to worry about a therapy schedule. Most of her therapies are scheduled in the mornings so it doesn't allow us the opportunity to do those things. In the afternoon she naps. It might have been one of the most relaxing weeks of my life.

Keep in mind, Cormac had therapy from birth and it continues BUT it is now done at school. Ciaran gets the same but his is done at school too. For some reason it just hit me this week. After the craziness of the holidays to have two weeks off of NOTHING. No commitments. Except to get the kids to school. Well, it was just plain wonderful.

I know we are back to the grind next week. I am not saying I mind and I know it's necessary. Calleigh also seems much happier the past two weeks. She is doing GREAT. SHe seems more and more like your typical 2 year old (except she is miniature). LOL SHe knows knows lots of letters and numbers. She know some of her colors. She is starting to talk more and more. She is a little chatterbox.

Who knows? Maybe she needed the break too!

Stable

That is a fantastic word to hear when you are the parent of a child with hearing loss like Ciaran. His late onset loss with NO EXPLANATION can really make you panic. I am not one to panic. If I did I would probably be dead by now with all the things we have dealt with in the last few years.

We switched Ciaran's audiologist to some one more local since we moved. I was very hesitant about switching because it was a huge deal to find someone capable of aiding him in the first place. We are VERY lucky and have a great pediatric audiologist only a few minutes from the house. I met with her first and discussed Ciaran's unusual hearing loss. I was very impressed. She came highly recommended and I was willing to give her a try after her taking time to meet wtih me (at no charge) to discuss his hearing.

We had our appointment on Tuesday and I am happy to report he has no change in his hearing since April. Yep, since April when they first found the loss. This is just fantastic news. It doesn't mean he won't have a change or drop but we are encouraged because it does not APPEAR to be a gradual loss that will continue to get worse! YEAH FOR CIARAN!!

We ordered new ear molds. He chose a swirl of bright green and bright blue. Trust me, you can't miss them. When we first ordered his aids I was not sure how he would feel about them so we ordered just clear earmolds and his hearing aids are skin tone. He now want his hearing aids to be blue but I explained we won't be buying new aids ANY time soon. I have to find really strong stickers to put on them. The stickers made for his hearing aids fall off too easily.

It was a great appointment. Calleigh was surprisingly cooperative even though we were there for 2 1/2 hours and I am so happy with the new audiologist.

On a side note, I often wonder if this blog serves any purpose. I continue to write it because I want to have it for the kids when they are older. But while sitting in the new audiologist office I was told Ciaran's records did not get faxed over by the old office. I was told they really just need his latest audiogram. Hmmm... I pulled up the blog on my smartphone, searched for audiogram and voila...up pops the picture I posted on my blog a while ago! If it serves no other purpose it avoided me having to reschedule my appointment. Gotta love modern technology.

An Spring Day in January!

We were blessed with Spring like weather in January. It was unbelievably beautiful. We started the day at basketball. I have to say the boys are coming along. This is their first attempt and they are enjoying it. Cormac played the whole time today and did really well.

After basketball, Frank took the boys on a hike while I stayed with Calleigh and did some housework.
They had a blast. They sent me this picture while they were hiking. Holding ice when it is nearly 60 degrees out.



The came home and rode their skateboards in the back yard. I went for a run and knew I had to go and get the boys and head up to the boardwalk/beach. It was too nice. They rode their scooters and I rode my bike. They were barefoot on the beach playground. We build some sandcastles.



My Mom and Richie came down for dinner. The kids were super excited to see them. Maggie made some delicious BBQ ribs and chicken.

The boys were so tired they were asleep in only a few minutes. All in all it could not have been a better day.

Oh, and I will end with the ultimate in cuteness. Calleigh learning early how to be a good shopper!

Flashback Friday

Well, not too far of a flashback but this is one of my favorite pictures of Calleigh. She was 6 months old. It was taken almost exactly 2 years ago.

A little look back.

I was going through Cormac's binder of information looking for a report to give to his TOD. I came across a report from this first TOD from 13 months post activation (he would have been 2 years 5 months old)
It had samples of his language. Here is what he was saying:

Mommy has a red pocket too.
I have a red triangle.
There is dog food.
I want two doggies.
That one's square
Circle...right there.
I hear mama
Where the other red sock? (he used to skip "IS")
Mommy, I want drink juice...big boy cup.

His receptive language includes nouns, many action verbs, attribute words, names of many people and some prepositions (on, in, under, behind, on top of, around). In addition to understanding many words, Cormac incorporates these words into his expressive vocabulary as well. Cormac consistently responds to simple questions, yes/no questions and "who what and where" questions. Cormac follows directions involving attribute words. He can discern two familiar attribute words IE he can find the small red triangle among many different shapes with varying colors and sizes. Cormac can identify all the letters of the alphabet and all the sounds they make!

It said lots of other things but this is just an excerpt. I love looking back to see where he was and how far he has come!

Now, on to a few funnies I have heard. Some are duplicates from Facebook but I want to make sure they make it into the blogbook so I apologize for the repeats.

We were driving home from a birthday party of the boys BFF from up North, Kennedy. Very seriously Colin says "Mom, I don't know what I am going do. Two girls want to marry me" I say "who Kennedy and Reese?" He says "yes. I know what I will do. I am going to close my eyes and dream about it". I say "Ok." A few minutes later he says " I think I know what to do. Wait? Can I marry both of them?' I said "No, well at least not in NJ". He says "Ok, I am going to have to thiMy more". Ciaran chimes in "Mom, I will marry you" At the exact same time Colin and Cormac say "she's already married"

Ciaran stayed home sick from school. After 5 hours alone with me and Calleigh he says "Mom, I really like being home with you but I am getting Yonley for my brothers". I knew he misses them. Colin and Cormac on the other hand were just fine at school.

My mother in law was ripping up the old mail. Colin says "why are you doing that?" She says "because I don't want anyone to be able to see my personal information" Colin says "what, you don't want everyone to know you are on a diet?" I nearly spit my drink out on that one!

Colin: Dad, I could really use an after dinner mint. That bread sure was garlicky.

Cormac: Mom, your skin is very dry like mine. We both need dry skin therapy. (apparently, Cormac read the lotion bottle!)

That's all for now. Hope you are enjoying your New Year. We started our New Year with an ear infection for Ciaran...Boo

HAPPY NEW YEAR!!

I want to wish you all a Happy, healthy and peaceful New Year. 2011 brought many changes to our family. It had lots of ups and downs. Highs and lows. We moved to a new place. While we love living at the beach and our new school we miss lots of people and things from our old town.

Calleigh started walking in 2011 which is a huge milestone. She is now RUNNING! She continues to make huge steps in her development and we know she is going to be fine. I am praying we have no set backs in 2012. We still are waiting for the second hole in her heart to close but we are pretty sure it won't close on it's own at this point. I don't plan on fixing it until she is a little older but I don't have full control over the decision. I am hoping to avoid it until 2013.

Ciaran was diagnosed with hearing loss in 2011. To say it came out of left field is an understatement. We are still dealing with the diagnosis. Ciaran has done really well considering his age when he had to start with hearing aids. Some days he says he hates them. Some days he says nothing. We take it day by day. His hearing has been stable since his diagnosis so this is a positive. He is doing well in school and is a pretty well adjusted kid. Ciaran prefers math over reading and has a real knack for it. His reading is coming along just fine but he doesn't really enjoy it.

THE NEPTUNE was FDA approved in 2011. This is really life changing for Cormac. As the worlds first swimmable processor it will give Cormac access to sound he has never heard before. He will hear in the bath for the first time. He will hear in the pool for the first time. There will be a lot of firsts for Cormac once we are able to get our hands on the Neptunes. We are praying we can get them approved by our insurance. I plan on taking lots of video of him experiencing all these amazing "firsts" with his Neptunes. Cormac continues to amaze us with his speech and language. He loves school. He is fully reading. He has lots of friends. He plays soccer and basketball. He is just a typical kid. This makes me sooo happy.

Colin continues to make us smile with his sweet little personality. He is never without a compliment for me and anyone else. He thinks many things are "beautiful" and gorgeous". He still gets upset because according to him "there is nothing wrong with his cochleas" and that makes him different from his brothers. He doesn't like they get to get special services from the Teacher of the Deaf at school and he doesn't get to go. He is a smart little bugger. He surprises me with how much he actually knows.

Much love to all of you in 2012!