WHAT A YEAR!!!

One year ago today (well, June 10th. I started writing this on her birthday), at 1:32am, Calleigh Catherine arrived just over a month early. She weighed in at 6 pounds even and was 18.5 inches long. It was a surprise for her to arrive so early but an even bigger surprise when she was sent off to the NICU. We knew she had the cleft lip and whole in her heart but we were in no way prepared for a 31 day stay in the NICU.

I was shocked and saddened when I wasnn't allowed to hold or touch her for almost a week. This is the first time I got to hold her.



We had no idea she would need major surgery at just nine days old and wind up with a colostomy bag for almost 7 months. We had NEVER heard of Hirshprungs Disease. Now, we are experts on the disease. Three major surgeries later and a few scary trips to the ER along the way (remember when I had to do CPR on her at 8 weeks. Well, I certainly do and have yet to get those 10 years it took off my life back) BUT we made it!

Through it all, Calleigh has been nothing but a joy. A ray of sunshine in our lives. How she has smiled and laughed has amazed and inspired me. I mean, how can I complain about anything when this child who has been in lots of pain has not shed tears? She is a trooper. She is a fighter. She is living up to the "fiesty red head" stereo type. She has managed to wrap one man and three mini men around her finger in a very short period of time. Frank and the boys are useless when she smiles at them. They all just turn to mush. Ciaran has found his purpose in life, and I am not kidding. His love for Calleigh and his need to constantly be near her is at some times overwhelming. I have given up asking him to leave her alone. The look on her face is pure love and adoration. Who am I to take that away from her? SHe searches for him if you say his name. I have a feeling many a boy will have to endure the wrath of Ciaran when they try to go near his sister. And trust me, Ciaran is no joke. He may be "long and lean" (as we like to call him and he hates it) but he is scapper and can hold his own. He would never pick a fight. Never hit someone other than his brothers (LOL) but I would hate to be on the other end if you did somthing to one of his siblings let alone Calleigh first.

Calleigh continues to gain strength and reach new milestones. It's like her brain wants to do everything but her body just isn't quite ready. She really wasn't allowed to do much while she had the colostomy so now given the opportunites she is flourishing. She can sit all by herself, roll around, she can show you one finger to say she's one years old. She isn't crawling or walking yet but she will get there. The once NON EATING child has turned into an eating machine. If she sees the food and then you don't give it to her immediately you will HEAR about it. She loves her solid foods. We go for her one year visit tomorrow and will have stats on her weight and height but I think she might actually, have broken the 17 pound mark for her birthday!

We followed up with the plastic surgeon yesterday and all is going well. Her scar right now is at it's worst and I was a little concerned but the surgeon said it SHOULD look it's worst 8-12 weeks post surgery. So we are on target. She will be seeing another doctor to put a small stent in her nose to keep her nostril open so it stays equal to the other. Her kidney reflux has pretty much resolved itself and we were pretty sure it was going to need surgery (thank god). Her acid reflux is gone and she is no longer medicated. Her hiney is fully functioning so the colostomy reversal was a success. Her MRI of her brain was totally normal. SHe had two holes in her heart. One has closed itself (VSD) and the other (ASD) is still open but showing signs of closing. The only thing we can't do anything about is the Duane Syndrome in her eye. It bothers me it can't be fixed but we are lucky because her eye is fully functioning. It just won't move to the right (just her right eye). Maybe in the future we will be able to correct it.

Calleigh's pediatrician, who I love to death, told me when she was about six months old "by the time this baby is a year she will be just your typical one year old". At the time, I honestly didn't believe him. If I am really being honest I spent most of this first year of her life praying she would survive it. I know it sounds morbid but I have feared every day she just woulnd't make it. I have not slept much this year. Calleigh has slept through the night since 4 months but I was scared every night. I constantly thougth if I didn't check her something would happen. It just all seemed like so much so such a little baby. I am so happy my Doctor was right. Today, she is just a perfect little princess well on her way.

Milestone

This morning the boys "graduated" from three year old preschool to the four year old program. They sang songs and we watched a slideshow of pictures of the entire year. They made us lots of stuff and were each presented with a diploma. It was so cute. I didn't cry today. Normally, this would have me crying but for some reason today I didn't cry. I just smiled and laughed and enjoyed the moment. It still takes my breath away to look up and see THREE of them together. Three of them all at the same time. It never seems to get old. (well, ok, when all three are really crabby, it gets old quick LOL)

I will remember moments like today forever. We worked so hard to get to this point. Then there is the part about Cormac that just warms my heart. He is just another kid in front of the class singing and enjoying the moment. He doesn't miss a beat. Not one person in the room would know he was deaf unless they were told. I remember way back when we first found out he was deaf. Boy, all I could think about was "they cannot be in different schools." It would break my heart to have them seperated. It was so not fair he was deaf, it was not fair he was different, it was not fair it would be so different for him. Now, lets fast forward to today. I guess it's still not fair but we don't notice a difference. It makes him who he is today but it doesn't define him. He is so confident and happy. All three of them are very confident and happy. I couldn't ask for more.

They had to tell their favorite things about school. I found it very interesting how they all had different choices but ALL chose one thing in common.









So a big THANK YOU to all that helped us get to this point. Family, friends, therapist, doctors, surgeons, teachers. As they say "it takes a village....." We could not done it without all the love and encouragement we receive.

Idioms

Check out this blog about Idioms

This issue of idioms has come up in the past when speaking with other parents of deaf/hoh kids. I haven't noticed it with Cormac but in thinking of things to work on I thought this would be a great thing to do over the summer.

Anyone else have concerns about idioms?

Hike in the woods

Talk about a new language and listening experience! It was so much fun and we listened for birds. We listened for the running water. We listened for rustling leaves and tried to find what made the noise. And they never knew they were learning. The best way of teaching! We brought along magnifying glasses and binoculars.

Apparently my children did not know the word "stump" as in tree stump. They knew log but not stump. As they each stood on the stump for a picture they asked what it was. Cormac called is a tree "stunk". I corrected him and we said it a few times. The next day I asked him what the word was and he said "stunk" and gave me a devilish look. Then quickly said "stump" with LOTS of stress on the final "P". He is a buster!











 
 
 

 

Adventure Aquarium

We spent MOnday at The Adventure Aquarium in Camden. It was an awesome experience. It was a far ride for us. My Uncle Bill treated us for the day and it couldn't have been better. The boys enjoyed every moment. We did get kicked out of the shark petting area. Someone get a little over enthusiastic while touching the sharks. BUT we learned in that moment that these Sharks don't have bones and can be squished. Don't worry, the shark was fine!

We saw two Hippos who were by far my favorite. It was the only exibit the boys asked to go back to again so I am guessing it was their favorite as well. Cormac LOVED the jelly fish. He was talking about them the whole ride there and back. He is fascinated by them. We tried our hardest but did not find any mermaids. (LOL).

We got to see the Caribbean fish being fed. The nice guy feeding them explained how much they eat and what they eat. The fish splashed the boys in their feeding frenzy and it was quite the delight for the boys. Cormac said at one point "Mom, that big giant fish is swimming towards me". I was very impressed with that sentence. I never really heard him use the word toward before.

It's funny because I constantly look for language opportunites. I try and make every moment filled with language. But I seriously am running out of things to say! I swear they knew every animal name already before we got there. They seem to know everything!! I find myself telling them very complex information to keep them learning. I guess we are just in a good place. They ask all the right questions. THey want to learn more. They are interested in everything. Cormac does call the Aquarium the "inquarium" until you say "what is it called?" and he can correct it.

Maybe we need to take up new hobbies so we have different language opportunites.(LOL) That's why I love books. We can learn about anything we want with just a touch of our fingers. We don't need to go anywhere but right here. The boys are starting tennis so that's something new and different.

We also got our faces painted.
Ciaran the Sea Monster



Colin the Skull Man


Cormac the Shark. I was shocked he didn't pick the mermaid

Cormac listening to letters

Check out Cormac writing his letters. But what I thought was amazing was how he can just tell the difference between "B", "P" and "T" EVEN with all the noise in our house. (dog barking, kids yelling!)

My first "Mother's Day Surprise"

Since this was the first year of preschool I was treated to the Mother's Day Surprise on Friday. To say it was adorable is an understatement. To say I was overwhelmed with emotion is also an understatement.

It began with two songs. All the kids came in wearing their "Mommy and Me" signs around their necks.
Cormac

Ciaran

Colin


I was seated at a table with a homemade dessert. And had beautiful presents around me.





These were butterflies made with their handprint. Just precious. Then they were allowed to give me my present. Each of them made me a flower pin. They painted and decorated it.

Two more songs followed. They also had to tell their father why I was special. He wrote it on paper and I didn't know what they said. Here is what they wrote...





I swear I was crying like a baby. I loved Ciaran's "she gave me my baby sister". I mean, he just LOVES her and to think he thought of that is just so touching. Ror Cormac to say " She took me to the city so I could hear". Well, are there really any words to say after that? He loves to go the NYC with me. He calls it "his city". The fact that he can comprehend his trips to the city are for letting him hear is amazing. That he thinks it makes me special, well it's beyond anything I could ever imagined. He values his hearing and appreciates it. Pretty mind boggling for a kid who just turned four.

Next came the video...yep,, a video. The teachers sat them down and asked why I was special. Some of the answers overlapped but new answers appeared. I have it on video and will attempt to upload it. My favorite on video? Colin saying "My mom is always tricking me. I love when she plays tricks on me". I don't really know what he is talking about but he is so stinkin cute saying it. Cormac said because I make him ravioli and Ciaran said because I give him lollipops and marshmallows. Priceless.

I will work on getting the videos up.

Inspired

I returned Sunday from my trip to California for Mentor training for the Bionic Ear Association. Never in my life have I been so inspired. To be surrounded by so many people all with such amazing stories to tell was literally life changing. Everyone's experiences were different. Everyone was implanted at different times. But regardless everyone has been on a wonderful journey.

I knew many people online but none of them in real life. To put faces to names and to connect on such a personal level was priceless. Since Cormac was born and we found out he was deaf I often wondered what the greater purpose was. Why were we chosen for this journey? I can honestly say I would NEVER change this. I would never go back. I now know I was meant to be part of a very special group of people. People who I know will be friends for life. Our paths might not cross in person but with the wonderful world wide web we will be able to stay connected. To continue to follow each others journeys.

I have spoken to many parents of recently diagnosed children in the past. I only hope they find some small amount of comfort by hearing our story. By realizing what is possible for their child. I have never met any adult recipients before but now I have seen adults functioning in the world. Mothers, fathers, sisters, brothers all in the real world doing things just like the rest of us. I knew Cormac's future was filled with endless possibilities but now my confidence is through the roof.

I am so grateful for meeting each and every person that participated in this training. The mentors as well as the Advanced Bionics staff. The staff cares. They truly care. To see managers shed tears as they hear stories of success. To see how invested they are in the future of recipients is awesome.

We learned a great deal but also had lots of fun! Advanced Bionics truly showed us a wonderful time.











These people are ACTUALLY making implants. Only four people in the world can make the internal implant Cormac has in his head. If we go there with his serial numbers they could pull a file and he could meet the people who made them! How cool is that???










The boys sent me on a mission for my trip. Colin sent me with a mini Batman, Cormac sent a little Flouder figure and Ciaran sent "blue man". I had to photograph them where I went. Stay tuned.... I will publish their journey tomorrow!