Triplet Princes and a Princess

Triplet Princes and a Princess

Our journey to hearing with Cormac while living our life with triplet boys and a baby girl.







Friday, March 30, 2012

Flashback Friday

Colin and Ciaran's first haircut....I remember this day like it was yesterday.  I loved these outfits.



Sunday, March 25, 2012

Reading

Many things have fascinated me in my life as a Mom.  I have to say watching your child learn to read is at the top of my list. 

Cormac has been reading for a long time.  I'd say about a year.  He was an early reader. (Funny thing, I was told deaf children have a harder time learning to read).  Yesterday, I watched as Colin's brain just got it.  He has known all his sight words and has been sounding out words for a while but yesterday the light bulb went off and he read me an entire book.  He was so proud of himself.  His first book was "Henry's first day of Kindergarten". 
Cormac was so cute.  He went and drew him a picture and wrote him a note saying "Good job". 
Ciaran isn't reading yet but he is doing awesome.  Ciaran is more of a math kid.  He gets easily frustrated when trying to read.  That said, he knows lots of his sight words and is just starting to try and sound them out.  Give Ciaran a computer or math and he is a whiz.  Last night after Colin read the book Ciaran came and got me and asked me to go in my room with him and let him read a book.  It's really the first time he has shown enthusiasm towards learning to read.  And you know what??  He did a great job.  He recognized all the sight words in the book and tried sounding out the big words.  He was able to get lots of them.  I think the competition between him and Colin is quite the motivator!  He wasn't competitive with Cormac when he started reading because it was so long ago he didn't really care!

I honestly feel like all the work we have done in our house and our focus on language has really given the kids a jump start.  I am very proud of them.  I feel like this is a big hurdle we have jumped.

Tuesday, March 20, 2012

Ten on Tuesday

1.  A mother's intuition or gut feelings are very accurate.  Never underestimate them.

2.  This has to be the best WINTER in my life.   Beautiful sunny days.  Warmer than one would think possible.  What a great first winter living at the beach.

3.  I will be the mother to three SIX year olds shortly...I have no idea how this happened.

4.  Less than three months and will be on Summer break.  I am counting the days!  What to do all Summer???  Lots of beach time, swimming, surfing, boogey boarding...

5.  I am meeting with the Principal of the boys school after our Easter break (we are off for almost two weeks!! YAY) to discuss the boys placement for next year.  They will continue to be in the same class but we want to make sure whoever has them is comfortable with the equipment.  I plan on meeting with their new teacher at the end of the year so we are well prepared in September.

6.  Calleigh is scheduled for tubes in her ears on May 7th.  A sleep study will be done before this and if is necessary she will have her tonsils and adenoids removed.  I hope all at once.

7.  If Calleigh needs hearing aids..well, I don't know what to say about this.  My stress level will be off the charts.  Mostly just trying to keep track of the equipment. I am also fearful we will lose Cormac's implants or Ciaran's hearing aids.  Adding two more to the mix might push me over the edge.....

8.  I LOVE my new job at CaptionCall.  Seriously, I love it.  I spent YEARS trying to find a job working from home and making my own hours.  I didn't think it existed.  I can honestly say I now that job.  Add to this I am working in the field of hearing loss and helping people get back something they had lost... the ability to use a telephone is just awesome!

9.  I am still hoping to run my half marathon in May.  Training has been difficult because of my lack of time but I have gotten a few good runs in.  I can do 5 miles easily at this point.  The most I have run is 6 1/2. I just have to double that and I will be in business.


10.  Got an interesting email yesterday which might lead to Cormac being in a PSA for hearing loss....to be continued...

Sunday, March 18, 2012

Going with your gut..

As a Mom sometimes it is what needs to be done.  We know our children the best and while professionals may seem to always have our kids best interest at heart sometimes it might not be enough.  A fellow Mom blogger just wrote about making a big change in her son's life and she went with her gut.  She knew her son needed it and I applaud her for it. 

While Calleigh continues to progress.  I am thrilled with her huge leaps she has made over the last few months.  I have been told Calleigh has low tone.  Her doctors have contributed her late crawling, walking and most of her gross  motor skills delays  on her low tone and also the fact she had two surgeries cutting her belly clear across.  Add to that she had a colostomy bag for eight months and she didn't get the tummy time she needed.

I get all that.  Trust me, I do.  However, I don't feel Calleigh's amount of low tone equal the amount of unsteadiness and unstability she has while walking.  She still doesn't climb stairs yet.  She has a habit of holding her ears all the time.  I think somethimg else is going on. I don't know what but to me it seems like it's related.

I made an appointment with a new ENT who also specializes in balance issues and disorders.  He works in conjunction with an audiologist.  We were able to get in to see him on Friday.  (Friday will go down as one of the worse days for many reasons I will blog about later)

To say it was overwhelming is not quite the right word.  It turned out to be over two hours.  First you are seen by the ENT.  We went over her extensive medical history.  He was instantly interested in her mouth.  He asked me if anything was wrong with her lower lip.  I was shocked because I had never noticed anything and no professional or anyone for that matter has ever mentioned it to me before.    He said it seemed like her left lower lip could not fully move down.  As he put it, like Sylvester Stallone.  He basically wants to keep an eye on it.  I have been watching her like a hawk since and have not noticed anything but who knows.

He checked her ears quickly and said he saw some fluid.  She has only had one ear infection in her life and she didn't have an infection on Friday.  She just had some fluid.  He also said he was "impressed with the size of her tonsils".  He asked if she had any sleep issues or if she has ever had a sleep study.  Nope.  Of all the stuff she has had a sleep study was not on the list.

Next was the audiology appointment.  Calleigh was not so thrilled at the beginning when they had to check the pressure in her ears.  One ear came back as having fluid.  Next we went in the booth.  She LOVED this part.  She was so excited to wear the headphones.  She was a pretty good reliable patient if I do say so myself.  The results??  Mild/moderate hearing loss bilaterally (Melanie Ribich...I could not help but think of you for some reason when I was hearing this news.  You were so supportive when I learned of Ciaran's loss)  Calleigh has had her hearing tested before (several times) and has passed.  The only reason at this point I am not losing  my mind is because I am hopefully optimistic the test was not accurate because of the fluid.

We were seen again by the ENT to go over the results.  We talked for a long time about the results and all my feelings about Calleigh's well being.  He said the hearing loss could be caused by the fluid but it is possible for her to have hearing loss after the fluid is gone.  Apparently, Duane Syndrome can have hearing loss associated with it.  I feel like an idiot for not knowing this. I did so much research when I found out she had this and never came across this fact.  No other doctor ever mentioned this to me either.  That said, Calleigh has had her hearing tested multiple times in her life so I don't feel like a complete failure.

The end result??  She is scheduled to have tubes place on May 5th.  She will also have a sleep study done before the tubes.  Once we see the results of the sleep study he will determine if she needs her tonsils and adnoids removed.  After the tubes we will retest her hearing and pray the fluid was the problem.  We didn't really address the balance issues except to say if she has fluid in her ears it can cause her to have balance issues.  Bottom line he said we don't know what Calleigh's potential is on a scale of 1 to 100 (or for any kids) but we know with fluid in her ears and perhaps sleeping issues due to her tonsils we know she won't reach her potential.  So let's start with the tubes and go from there.

It was a lot of information to take in all at once.  I have been processing it all weekend.  My plan is to just get to the next step and take it from there.  One day at a time.

Sunday, March 11, 2012

The Neptune

The arrival of the Neptune in our house has brought so much excitement it's hard to describe.  I know some people might not quite understand but it's been tremendous.  Ciaran and Colin are just as excited for Cormac as he is for himself.  I have been waiting for this moment and was hoping me or Cormac would not be dissappointed.  Well, it was in no way a dissappointment.  His reaction was more than I could have anticipated.  His true joy was off the charts.

He has since showered with it and learned the word condtioner.  I had no idea he didn't know that word.  He knows all his other bath words but when I said put conditioner in your hair he said "what is that?" 

We didn't make it to the pool yet.  We plan on going this week.  I know the reaction will be the same.  Cormac has always loved life.  His zest for life cannot be put into words.  He continues to amaze me with how he handles himself. 

Here is a link to the Youtube video.  I hope you enjoy it as much as we did.

http://www.youtube.com/watch?v=kwBb8PEN2pc&list=UUYChxWOEmT_FyZ7fSRYh9jg&index=1&feature=plcp

I plan on writing a more detailed account of the Neptune as we use it more but we have been delayed since March Madness has started (not basketball).  We went to our third St Patty's Day Parade today.  I seriously love all the festivities.  Seeing so many friends and family and enjoying a few beers is always a great time.

Monday, March 5, 2012

Big Day

Tomorrow we are going to NYU for the mapping of the Neptunes.  We received the boxes on Friday and WOW are there a lot of things in the boxes.  Because they have so many cool options for colors there is so much.  Cormac chose light blue, bright green and a bright blue color.  Keep in mind he is bilateral so we have two of everything.

I remember thinking when he was little how much I wished he could hear in the water.  Not just the bathtub but anywhere.  It was for his own safety.  I was for his ability to fit in with everyone else while in the water.  The funny thing is it NEVER seemed to bother Cormac.  He was still young.  At the end of last summer was the first time I started to notice things were different for him.  He still didn't seem to mind but it was becoming harder.  Kids were talking to him and he didn't know.  His brothers were awesome for him.  They were quick to tell new friends he couldn't hear and tell them to make sure he was looking at them before they talked to him.  They would point out the helicopters and things so he didn't miss them.  Always his greatest supporters. 

To live on the beach we are always around the water.  I was usually pretty brave about allowing him to wear them around the water.  That said, I was always watching like a hawk for fear they would fall into the ocean.  Well, worry no more.

I also think of all the language opportunities available on the beach or anywhere around the water.  To think he won't really ever have to be without sound except when he is sleeping is just down right amazing to me.  I honestly always knew it would be in his lifetime but I never thought it would be available so quickly.  What makes me even happier is knowing children being implanted now will never experience no sound around water.  They will never know any different.  They will never hit an age when pool parties start and the kids get upset (I have been told this by Mom's of older kids) they can't hear their friends or have to keep taking their processors on and off.  I know now that Advanced Bionics has released a waterproof processor the other companies will be working hard to produce the same and all kids will have access to sound in the water.

We headed to the store today in search of noisy bath toys for him to play with and experience for the first time.  Not much was available but at the last moment we found a bathtub Ariel that sings and does all kinds of stuff in the water.  For those who know Cormac you know this is his dream come true.  He has always loved Ariel.  His excitement was off the charts.  I REALLY want to get these toys but not sure if I can get them in the morning.  If not, we can get them during the week and play with them another day.

We have a new aquatic center near the house and they have open swim every day of the week so we will be hitting the pool this week for sure!  I am planning on taking lots of video.

In Cormac's almost 6 years of life the only thing he told me he wanted to hear and couldn't hear was the faucet running over his head.  He said "Mom, I KNOW that makes a noise because I can feel it and I really want to know what it sounds like". Well, tomorrow is the day :)

Thursday, March 1, 2012

Contact Me

I received a few comments from people about the Neptune.  I can't contact you back so please click on the "contact me" button on the left hand side and I will receive an email and can answer your questions.  Thanks!