A week of appointments

This week has been hectic. Lots of doctors appointments last week as well. Yesterday, we headed in NYC for Cormac's two year evaluation. I thought we were having a speech eval but that was rescheduled becuase he needed a map and to go in the booth.

I picked Cormac up from school and along with Calleigh we headed into "my city" as Cormac calls NYC. It was going right into nap time and I wasn't sure how long my little man would survive. But he held up for hours. First they mapped him and he was having a few strange reactions to the mapping. By the time we left he seemed fine but this morning again he was flinching a little on the lowest setting. At school he did great and didn't complain so I think he is ok. Hopefully, we can bump him up to the next two maps in the next few weeks and get him even greater access to sound. I can't imagine it being any better but hey, I'll try anything. He did great for his map and was able to tell them when he heard the sounds. He would say "hey, what's that sound?" Or "I heard that sound". So, I guess he was a pretty cooperative patient.

Next we headed into the booth for some testing. Well, a lot of testing. We are wrapping up the Advanced Bionics study we were lucky to take part in. He could hear sounds that I wasn't even sure I HEARD! As far as I can tell from the testing he was able to complete each task and didn't seem to miss one word. (even when they introduced noise into the situation.) They did each ear alone and then both together. He was tuckered out by the end but never let it get to him. I was holding Calleigh through the entire process. It was a long day and got even longer when we tried to get home.

Getting out of NYC is a challenge any day but add in rush hour and thunderstorms, well, it's damn near impossible. It took us over 2 hours to get home and we only live about 15 miles outside the lincoln tunnel. I had to pull over on the side of the road to feed Calleigh. Not one of our greatest days. We finally got home around 6pm from 8am that morning.

I'll update more on Cormac's results when I have the audiogram in front of me but he hears at very low decibals.

Calleigh went for her follow up with the NICU today. She is doing great and doesn't need to return. She was 8pounds 3 oz. Since she has been home she has gained a pound and 3 oz. They are pleased. And best news of all.... SHE IS OFF THE APNEA MONITOR!!!!! What a relief.

I had to bring all four kids to her appoinment. Not the easiest of things to accomplish. The stroller with the boys must weigh over 150 with them in it. BUT they can't be given free range quite yet. I had Calleigh in the sling. It couldn't be any hotter or muggier. I bribed with tootsie pops but that can only take you so far after almost an hour and a half! However, rubber gloves blown up to look like turkeys were a huge hit. Why I didn't think of it sooner is beyond me. Three three year old boys just equal noise. Lots of noise. Even if they are being well behaved just them all talking at once is loud.

Tomorrow we are supposed to head to another appt for Calleigh at the pediatrician. I think I am rescheduling because it was only for a weight check and she was weighed today. I need a rest from appts. We had three last week and now three this week. How many can I handle?

We are heading back to the beach for the weekend. It's so relaxing at the beach. Calleigh is too young to go to the beach but Maggie gladly watches her while we head up with the boys.

WOuldn't want to leave you without some pics.

The Princess






THE MONSTER STOLLER!

Two Year Hearing Anniversary

July 21st was two years since Cormac's activation. I can't believe two years have passed. They have flown by so quickly it's hard to remember everything. I am glad I have this blog to look back on to help me remember. Cormac's initial activation was by far one of the top days of my life. It could not have went any better. He was happy and smiling and asking for more sound. He was never afraid and he has never looked back a day in his life. He has worked hard. We have all worked hard. It's a daily, hour by hour, minute by minute job to have Cormac accomplish what he has accomplished in two years. I can't even remember what our lives were like before we became this AV family :)

I don't even like to think about before he could hear. Makes me too sad. Makes me wonder what he was thinking all that time. Was he scared? Was he bored? But when I look back at pictures and videos Cormac was always just a happy kid. He always smiled and was never upset. To this day, he still has the same personality. Although he is now your typical three year old. He has lots of ideas, lots of opinions. He might be the most inquisitive child around. He craves knowledge and loves to learn. He is very independent but when he wants to he is part of the crowd. He is confident. I hope he continues to be confident. I never want him to think he is any less than his peers. (well, if you know him you would know he is smarter than most of them :) Ok, I know, I'm his Mother but he really is very smart.

I still worry about him but not as often. I still wonder if he will continue to progress as nicely as he has in the past. BUT I have a different amount of confidence in his abilities. I see him succeed each day. I watch him make sense of the world around him. It's not always as easy for him but he manages just fine. I am still amazed by him each day. I hope I never take for granted the wonderful gift we were given by Advanced Bionics. They changed our lives forever. We can never thank them enough.

Today, on the way to school Cormac said the Pledge of Allegiance, he sang Take Me Out to the Ballgame, he had multiple conversations with his brothers and he also heard the bell on the car go off when I needed more gas and he was sitting in the third row of the Suburban. He has no problem saying "i didn't hear you or I didn't understand you". This is great because he needs to be able to make his teachers aware if he can't hear. He can tell me if only one of his implants is working. (HUGE step). He also will say "what are you talking about?" Not sure where he picked up that phrase but it means he didn't understand what you said. He will usually say it when I am talking in another room to someone else and he overhears it. (remember Different Strokes, "what you talking about, WIllis?) It reminds me of that!

I could go on and on but I will stop. Here is some of the celebration we had for his two year anniversary. We had some cake









We head into NYC on Wednesday for his two year evaluation. It's right smack in the middle of nap time so let's hope he survives!

Our interesting weekend and benefits of bilateral implants

A VERY SCARY DIP IN THE LAKE. That's what happened to Cormac this morning. Clothes, sneakers, implants and all. Man, have we been testing these implants lately. A dip in the toilet, the spray ground and now a quick fall into a lake. These suckers are awesome! They just keep on working.

Now to the details of the fall into the lake that aged me about 10 years as I watched it from afar. I was sitting on a bench feeding Calleigh. Frank was walking with the boys. They were near the lake but have NEVER gone so close as to fall in but today it was really muddy and slippery. Cormac threw a rock in the lake his feet came out from under him and splash......Frank was standing right there and before I could even yell out his name Frank had pulled him from the water. (it's only about 2 feet near the edge where he fell) I nearly had a heart attack. Cormac looked so scared it was sad. He was soaking wet and covered in green lake gook. I think he was in shock. I know I was. His head didn't really go all the way under thank god. He does not know how to swim yet (he's only 3). Trust me, he will never go near the edge again. He was terrified.

Sunday we headed to the Sprayground. What a blast they had jumping in the sprinklers. Normally, we would be at the beach every weekend but with Calleigh just home we are hanging close. We are going next weekend. After the Sprayground we went to the playground. We had a wonderful morning and early afternoon. It might sound strange but having Calleigh with us just seems so normal. I thought for sure there would be a huge adjustment period but that doesn't seem to be the case. She is such a good girl. You barely know she is there except for when she needs to eat. She is already just one of us. I will say we do get quite the looks from others when we are walking with three three year olds and a newborn. To have four kids 3 and under I guess seems insane to someone who isn't living it. While there are moments that are insane for the most part it's just pretty awesome.

We let Cormac leave one of his implants on while on the SPrayground. You'll notice his ear bandit covering it. The ear band gives it some protection from the water. He is a little too young to understand not to soak his head so I figure it will help to protect it. He loves wearing the ear bandit and loves being able to hear while in the water.


One of Cormac's implants came off while playing in the playground. I didnt' have the extra tape with me and didn't want to go back to the car to get it. We let him just wear one for about a 1/2 hour. Let me tell you... WHAT A DIFFERENCE TWO IMPLANTS MAKES. Especially in a noisy situation. Cormac rarely only wears one implant so we don't see it often. Normally, with both implants I talk to him just like I would talk to Ciaran and COlin. He responds just like them. Well, he was having the hardest time locating my voice. With two implants he never has this issue. He turns instantly to where the sound is coming from. With one it took him some time to find me. ALl I could think about is what if it was a horn on a car and it took him that long to realize where the noise came from? Would it be too late? I am so
happy he has two. It really does make a difference.

Here's some video of my talking to Cormac while he is on the swing. He is wearing two implants in the video. He is not lip reading and I was not standing too close to him. He sings "You are me sunshine" at the end. FOr some reason the last line he says "don't please take my sunshine away" instead of "please don't take my sunshine" That's why it sound a little strange! So, if you're watching, I would love to hear what you think of Cormac's speech. He is 3 years old and today is his two year hearing anniversary! We will have cake later to celebrate.

The Hammerhead Shark and Cormac

This is my Dad in 1971 when he caught a 6 1/2 foot hammerhead shark.  

My Dad only went on a plane once in his life and this was the trip. They went to Florida My Mom was pregnant for me at the time.

I can't even type this without crying because I just miss him so much. My heart breaks that I will never see him again or talk to him. It breaks even more knowing my children will never remembe him or hear him laugh or never hear him say "hey, you want a punch in the nose?" while teasing them.

You might be wondering why I posted this picture today. Cormac has a different theme each week at school and Friday is show and tell. This week they were working on the ocean and all things related. What lives in the ocean, what the water is like, what animals have fins, or legs. The were learning about different types of sharks as well. I thought, what a great show and tell it would be for him to bring in the picture of my father with the hammerhead shark. My Mom was able to find it and scan it and I printed it out. I showed it to Cormac and we talked about it. I was curious what he would say when it was his turn at show and tell. I went in today to ask his teacher. She said he told the class "this is my Pop Pop when he caught a hammerhead shark fishing". She asked him "how did he catch it, with his hands?" and he said "no, with a fishing pole". He made the connection between the shark being caught and needing a fishing pole.

SHe also shared that he is an incredible user of his implants. She still cannot get over the things he hears and the situtations where he doesn't have problems with noise. Out on the playground the other day she had her back to him and was talking with him across the playground while all the other kids were running around. He was able to have an entire converstion like that. Today she said they were talking in the classroom and he was in the bathroom going potty. Well, whatever they were talking about he wanted in because he came running out of the bathroom with his pants around his ankles to join in the conversation. Obviously, in these situation he is relying purely on his implants and no other cues. I have always said he doesn't seem to miss a trick. I guess I was correct. He is so in tune to his surroundings.

We are heading into the city on the 29th for a map and his two year speech evaluation. He was supposed to go a month ago but Calleigh decided she wanted to make her arrival the same morning :) I remember being wheeled into the c-section and saying to Frank "don't forget to remind me to cancel Cormac's appts at NYU tomorrow". (It was about 1am)

Here's another funny story I forgot to include in my last post. Once a week on the way home from school I get the boys milkshakes (ok, I get on too). I always ask "what flavor do you want? Chocolate or Vanilla? Well, it varies by day and kid what flavor they want. What does Colin say? "He wants a beer shake!" Mind you, Frank and I don't even have beer in the house for the most part. Trust me, we have had our share of cocktails and TOTALLY still enjoy some cold frosty beers BUT it's usually when we go out or have company. On top of that I have been pregnant and they were only 2 1/2 when I got pregnant so they haven't seen me near a drink. Frank didn't drink the entire time I was pregnant. However, every time i have a can of soda they will say it's a beer. Strange. I don't now where it comes from. I can tell you this I could use about a case of those cold frosty ones right about now!

Things I have to make sure to document

SInce Calleigh has home the boys have been wonderful. The are in love with her and totally want to be with her all the time. They have said so many cute things I want to make sure I get it down to keep for the future.

On our first morning home Frank went in the boys room to get them out of their cribs. I was in our bed with Calleigh. Ciaran says to Frank "is our baby sister still here?" Frank replies "yes". He says "she doesn't have to go back to the hostiple (hospital)?" Frank says "no" He says "can we keep her forever"? I think I was crying by the end. Ciaran calls her his "little sweetie".

Since her surgery she has a colostomy. She will have it until she is three months and has the reconnection surgery. Just imagine the reaction of three three year olds to a baby who poops in a bag! They said "mommy, why she poop in a bag?" Colin said "I guess her hiney doesn't work". (well said, pretty much that is the deal) I explained to them she will have a fully working hiney in three months.

They ask so many questions about her. They are also interested in when they were babies. They can't believe they used to be smaller than her even though I show them pictures.

The second night she was home they stood around her crib and sang Twinkle Twinkle to her before bed. Calleigh must be under our watchful eyes every second they are awake. Not that they would ever hurt her intentionally but I swear they might hug her to death. Purell is being used by the gallon at this point. They know they can't touch her without cleaning their hands. Actually, that goes for everyone who sees her. With her being born early and having the colostomy we have to be very leary of germs.

They constantly refer to her as "little sister" or little sweetie". They want to know if she can eat quesadillas.

I have been pumping around the clock since she wasn't allowed to nurse in the hospital. I still want her to have breast milk so this was our only option. The boys have seen me pump and to say they are fascinated is an understatement. The other day I walk into my room to find Colin holding the pump up to his boobs and pretending to pump. Cormac was turning on the power to the pump. I laughed so hard. The things these three will do.

I am sure I am forgetting a ton of things they have said and done but my brain is very tired at the moment.

Calleigh is doing awesome. At her first check up after coming home she was up to 7 pounds 6 ounces. That is a 6 ounce gain in about three days. SHe needed her mother to feed her. We are going to get another weight check on Monday. I am not concerned. The last 24 hours she has increased the amount she is eating by about 1/2 ounce per feeding. SHe is sucking down bottles and we are even using the regular bottle now. We were using the tiny NICU bottles but I figure she has to learn to use a regular bottle so why not start now.

She is like having a doll in the house. She looks like a doll. SHe has the most perfect skin I have ever seen. Her eyes are big and beautiful. I swear she is just gorgeous.

Here are a few pics from the last few days.

Proud Big Brother Ciaran. This is her arrival at home.

 

Cormac his first time holding her
 

Our first morning together with Calleigh
 
 

Calleigh in her swing with three onlookers. Now you know why I have to keep such a close eye on her.
 

Calleigh is home...

She came home on Friday afternoon. SHe is a little angel. SHe just eats and sleeps. She is not the greatest of eaters and it is a struggle to get her to eat what she is supposed to eat. Burping her is a feat in itself. SHe TOTALLY stops eating if she needs to burp but she can take 15 minutes to burp. The boys are over the moon with excitement. I have tons of video and pictures but haven't uploaded anything yet. We are settling in and tryin to come up with a nice schedule. Today Frank went back to work so we are alone today. Luckily, my mother in law drove Cormac to schoool. My sister, Trish, is picking him up and dropping him off here and my Mom is going to watch Ciaran and Colin while I take Calleigh to the pediatrician's office. Our doctor makes you come in every other day for weight checks in the beginning. While it's a pain in the ass it's great because that is really the only way to know she is eating enough. Since her eating has been an issue for a while it's comforting to know she will be weighed.

My cousin, Jeannie, is a pediatric nurse. She came by yesterday and weighed the baby. Looks like she gained an once which is good. At least she isn't losing any.

So far, it's just be awesome to have everyone home together. We have had lots of visitors and everyone is so generous. Frank's Aunt Mary brough over enough food to feed a small army. But since we kinda of are a small army it's great! I said to Frank it would be great if I didn't have to worry about cooking and my prayers were answered! We have a different meal for each night this week. GOtta love that!

Ok, gotta go feed the baby. I will post more when I have time.

"Mom, Cormac's implant is in the toilet"

THAT IS THE LAST SENTENCE A MOTHER OF A CHILD WITH COCHLEAR IMPLANTS WANTS TO HEAR!! But this is what I heard from Ciaran yesterday afternoon. He neglected to add that he had already taken a huge POOP in the toilet. I run faster than you can imagine up the stairs and look into the bowl. yep, there is his implant at the bottom along with Ciaran's poop. You guessed it. I had to reach in and grab it. Time was of the essence since implants are NOT waterproof but water resistant. To day I was mad is an understatement. Since I didn't witness how it happened I will never know the truth. I asked Cormac why he did it and he said "I don't know". Well, he couldn't tell me if he threw it in or if it fell in. He got so upset because he hates to not have both of them on and I told him it wasn't going to work because it went in the toilet. (It was actually working just fine (THANK GOD) but I wan't to put it in the dry and store to suck out any moisture. It has been working just fine but I swear I might have aged 10 years in that moment.

The days are getting longer and longer it seems. Having Calleigh still in the hospital is upsetting beyond words. The fact that I have to go visit my daughter is just not right. I have been reassured there is nothing wrong except she is a slow eater. She has been in the hospital since 6/10/09. It's so long. Trying to spend enough time with her while also making sure the boys are cared for and find a sitter for them every day in the mornings is difficult to say the least. Not to mention I go up every night when Frank gets home from his afternoon visit. I think I have only put the boys to bed for night once since she was born. While I know they are fine with Frank it makes me sad because I love to put them to bed at night. While I try and spend as much time as possible at the hospital it never seems like enough time. To know she is by herself makes me literally sick to my stomach. I know she is receiving great care and the nurses are beyond wonderful but it's not the same. They spend a lot of time holding her and giving her attention but ITS NOT ME. It's someone else. Please pray she will be home soon. I don't know how much more I can take...


Our day looks like this:
8:00 amOut of the house to get Cormac to school and drop off Ciaran and Colin at whoever is babysitting them

9:00 arrive at hospital

11:30 Leave hospital to go pick up Cormac and then Ciaran and Colin

12:30 home/lunch/nap

While the boys nap, I cook, clean, laundry and try and figure out when I am going to be able to get groceries or get to Target for much needed food and supplies.

4pm Boys awake from nap. Frank goes directly from work to see Calleigh. I start dinner and feed us.

6:30 Frank arrives home from hospital

7PM I leave for hospital

10 PM I ususally get home from hospital

AND I am pumping every three hours around the clock for 20 minutes. So, while Calleigh isn't home I still don't get to sleep.

Pretty much don't see Frank at all and never get to eat with him since he doesn't get home from the hospital.

What doesn't kill us makes us stronger, right?

Ok, lots to say...

The craziness has continued for our family. Calleigh is still in the hospital BUT she will be COMING HOME TOMORROW!!! We are so thrilled.

She also PASSED her newborn hearing screening. I am so excited about her passing the screening. I know we could have handled it if we needed to but GOOD GOD, can we just catch a break! This poor little girl has had enough between her belly and her lip she has had her share so I am just relieved her hearing is fine.

The boys continue to be your typical three year olds. We have awesome days and then every once in a while is a day from hell. (like yesterday) They have been through a lot this past month with Calleigh in the hospital. Lots of changes to their normal routine. Lots of less time with Mommy while I have been at the hospital. I have to cut them a break. I am sure they can tell we are under a lot of stress.

On to some cute stuff.......

I am driving Cormac home from school the other day. He was by himself in the truck. He says "Mommy?" I respond "yes, Cormac?" Know what he says next???? He says "Mommy, you make my heart super happy" I look in the rearview mirror and he is making a heart shape with his hands. (Insert flowing tears here....) I swear it was the sweetest thing I ever heard. I tried to tell Frank about it but cried again just retelling the story.

We took the boys to see Calleigh again on the fourth of July. THe nurse was kind enough to dress her in her specail holiday dress that was kindly given to us by Nadine. They just loved seeing her again.


The boys are still not allowed in by her so they get to look through the window. Here's is one of our first family portraits (with a window between us :)


Miss Calleigh Catherine. The tube was how she was eating until she mastered the bottle.




We went to the fireworks after our visit. They were not so thrilled with them. NOt scared but not over joyed either. I popped Cormac's implants off and he liked the firworks much better. (guess that's one advantage he has. I couldn't turn off Ciaran or Colin's ears!!)



Hopefully, i will have time to update once Calleigh is home tomorrow. I know i will have some better pictures once she is home with us.

Frank stopped home last week during work. The boys were so amazed at his big work truck!



Chillin in the morning....



We went to the zoo and fed the birds again this year. They kept trying to kiss the birds and many flew away but the looks on their faces is priceless.

Ciaran



Cormac



Colin



Three kings of the castle! They love to wear their capes and crowns.



Espsecially King Cormac (that is what Ciaran calls him now!)